Little Wonders

Soldier On ...

2012-01-26T23:59:00.000-08:00

I adopted that personal mantra, the soldier on thing, a few months back. October actually. While running the Nike Womens Marathon. They are words from one of my favorite songs from Coldplay . For a refresher, if you need it or want it, click here. Anyway, I have thought of those words and that song in many moments since that beautiful October fall day, and lately, even more so.

Lately when the ebb and flow of life is threatening to pull me under. When I am trying to make my way through the trenches and the daily battles besieging me from all fronts. When the pressures, some admittedly self imposed, seem daunting and heavy. When I am questioning my direction in this life as a wife and as a mother and the levels of complexity within those roles, seem totally overwhelming. And least we forget, my place in this life as an individual, a woman, who was just me, before I became those other things. I am not the surrendering kind of girl so I will just keep moving. Facing forward. Praying my way through the difficult days and knowing, sometimes, all I can do is: soldier on.

And while I am doing that, I will be ever mindful of my many blessings in this life.

For instance, the gift of reconciliation. 3 years in the making.

"Forgiving is not forgetting; its actually remembering--remembering and not using your right to hit back. Its a second chance for a new beginning. And the remembering part is particularly important. Especially if you don't want to repeat what happened.” ~Desmond Tutu

Or party preparations for a soon to be 5 year old miracle girl. This darling little dress being the inspiration behind the party theme. Oh la la !!

And of course, there is my health. I never lose sight of that. Despite 3 inhalers a day, that are costing us a jaw dropping 400 dollars a month, I run. Like a crazy woman sometimes. And sometimes I even run as late as 10 o'clock at night. Sometimes, I wonder whether I am running away or towards something. But mostly, I just run. Running is my cheap therapy. And on some days, my salvation.

So, in between the delicate balance of sanity and completely losing my mind, I will be ever mindful of the beauty intertwined amongst the chaos of my life and I will continue to soldier on. Don't know any other way to do it.

iHelene and few other little something, somethings ..

2012-01-18T13:26:00.000-08:00

First the something, somethings. The high points of the week, or maybe they are the low points of the week but points nonetheless, that have kept me otherwise occupied and distracted.

First up: Zoey is sick with a nasty little respiratory thingy. And is feeling down right yucky but manages to smile and sign "happy", over and over, again. I think that is totally for my benefit. She coughs like she has been a smoker all her life, to which we find ourselves, in true Needham fashion, telling her to lay off the nasty habit would you Zoey, each and everytime she goes into a coughing fit. My child who never naps, has just now fallen asleep next to me, as I type. Poor love.

Next, and this one, for those who don't know me, might need more of an explanation, but I just am not in a position to give it right now, so will need to leave it at: I will be going to a gathering on Saturday and will be seeing family members I haven't spoken to in 3 years. Two of which are my very own mother and father. Mentally preparing myself by repeating: "Go slowly. Breathe. Smile." ~Thich Nhat Hanh.

Finally, my heart has been heavy over the on going discussions surrounding a little girl named Amelia, that was denied a kidney transplant based on "mental retardation". And if that was not enough, dialogue continued here at the HuffPost and a most disturbing opinion was voiced by one woman and sadly echoed by others,in one way or another, that, in a nut shell said, that there is a distinction between " a human person and a non-human person." The absurdity of it all I could not even begin to rehash here, but I invite you to visit my dear friend Elizabeth's blog where she and others have done an amazing job of bringing this to the forefront of discussions. Much needed discussions. However, I have to tell you, Elizabeth and I talked yesterday and we wonder, have we truly made progress in educating society about our children and others with disabilities? Are we simply spinning our oh so very tired wheels? Will our children always be viewed as "lesser than"? Their lives dehumanized based on their capabilities or lack there of? I wonder. But as I wonder I will continue to advocate and fight and speak up, despite the ignorance that still abounds. I know of no other way to be.

But you know, I can offset all the icky feelings brought on by stories such as Amelia's, fairly quickly, by introducing you to Helene. iHelene, is our second recipient of Mission 2. Darling little girl. With a mom who writes with the humor necessary to journey with these children of ours. Humor has saved myself and my family during some of our darkest days and Suzie's mom, she has that humor chip that is essential to retaining our sanity. So please read and stay tuned for upcoming news on Mission 3.

iHelene

I must have started this blog a half a dozen times, then gone back and erased the few paragraphs I had written.

Evolution of self is a crazy thing. If you are open to it, it can lead you in some wonderful directions in your life. If you are closed to it, if you find yourself bogged down by fear, anger, aggression...well, before I start sounding too much like Yoda, let's just say that you can very easily just miss out on so many lessons Life tries to teach you.

The reason I kept erasing the text was that I kept starting this post with apologies. I kept apologizing for the delay in getting it written, the delay in wrapping up this Mission 2, the delay in getting set to go with the announcement of Mission 3, for the this and the that.

And I realized...I have done that, and continue to do so, quite often, and not just here. I do it on my own space, I do it on other spaces where I might be invited to guest write. I do it a lot...in my everyday Life.

I think I am beginning to have an understanding as to the 'Why', but I'll talk about it somewhere else since I don't plan to make this post all about me. I will only say this about this place and this space. It's always been and always will be an Open Book. And it will remain so.

It is a reflection, perhaps, of who Heather and I are and whoever else comes to the table, and I like it that way. It is a perpetual Work in Progress, it is in its infancy, and it has much growing yet to do, because it, like all of us, is evolving too.

But it is Good. It does Good. And I think that I don't need to apologize that I can't give it the time I want every day, or every week, right now. I give it what I can, and when I can I'll give it more.

Because I do love it, and man-oh-MAN does it give back TEN-FOLD.

When I first read Suzie's entry regarding her daughter Helene, I recall some of her statements LEAPING out at me. Reminding me, strikingly, of my son Bennett.

'Helene...seemingly flourishes in the confines of a genetic disorder in the family of overgrowth syndromes, while the specific syndrome cannot be pinpointed (probably a mutation of one or more). Helene has Autism, a very limited vocabulary of one-two word phrases...a disregard for many social norms, and unbridled enthusiasm for all things related to sugar.'

'She is clearly creative and funny, with limited avenues for expression. For instance, she recently seemed to find it amusing to watch us find toys she had hidden in food. A small plastic baby found in the simmering tomato sauce, a tiny plush cookie monster upside down in a glass of milk, Dr. Doom staring up at me when I opened up the sour cream.'

I can't explain why, because Bennett does none of those things exactly, but the sense of humor, the ability to HAVE humor, is something that Bennett does not lack, despite his tremendous disabilities. And I just had an...impression, that Helene had a similar disposition.

Humor certainly helps, a lot...and I wish that all of us had more of it in our lives. Especially with our kids. Those of us that do...it is a very special gift. The sound of laughter, especially from a kid, does it get better?

We need to have it as well. Us, the parents I mean.

Suzie certainly does, as this little passage from her e-mail she sent me when they first got the iPad indicates. She was telling me a little about Helene, they had not yet given her the device but were waiting until Christmas. (And again...her description...sounds like she could be writing about Bennett, at least to me.)

'Helene is really beside herself about Christmas, in both good and trying ways. She is a veteran tree-decorator (on and off with those ornaments, again and again), holiday dancer, repetitive Grinch watcher, (Oh, those Whos down in WhoVille, the tall and the small...), cookie tracker and eater, and is exhibiting rather stunning and remarkable self-control over the mailing boxes that are coming in the door. Somehow she is fully aware they are presents, and must wait.'

'On the other hand, she has had an alarming number of tantrums, including the lay-on-the-asphalt variety at the Zoo the other day. The gang of kids and moms in attendance labeled it Helene's version of 'Occupy Zoo' behavior.'

'I sat on a bench and sighed...deeply...'

Sounds like a Mom you would want to hang with, right? I think that you ought to write a blog, Suzie, I really do. And of course, there was this little ditty that I got shortly after the iPad was given to Helene as a Christmas present.

'Helene has been waging a passionate love affair with the iPad. I (somewhat haphazardly) loaded some apps that I thought would be useful for her: a few movies, read along books, and several communication apps that include puzzles, word scramble, etc. She has already become so proficient at the word scramble, I have to research one with harder words.'

'She's been running around the house yelling opposites: Up! Down! Inside! Outside! Open! Shut! And spelling p-e-a-c-o-c-k and w-a-t-e-r-m-e-l-o-n! (Well, honestly, the end of watermelon gets lost, but you get the idea.) Mind you, this is from a girl who has VERY little to say generally.'

'The iPad has been a wonderful boon to her, and by extension, our family, and I've signed myself up for an apps class via an Autism task force so I can better meet her needs. We thank you again for making this possible for us. It has all been, as Helene would exclaim, DE-LICIOUS!'

Indeed it was.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

"Once you believe that there is a conscious, knowing soul in there, everything changes." ~ Single dad

2012-01-13T17:22:00.000-08:00

I lifted that quote from my friend, Single dad. With his permission of course. I read it in a post of his awhile back and it touched me in ways I cannot explain. It said what I wanted to say, but just couldn't find the words. Words to ignite those that are on team Zoey. And, if you can't feel the power of those words, those people on team Zoey, then you need to be gone. Like now. Like yesterday. And as it so happens, Zoey's PT is gone. Revisit this post, if you need a reminder why she is a former member of team Zoey. I went back and re-read and also re-read the 38 amazing comments left for me and well, let's just say, nearly made me cry, the love and wisdom and advice flowing unselfishly over there.

Zoey's PT from that post, has been gone for a bit now. And I don't miss her. Not even a little bit. And neither does Zoey. Zoey use to fuss and cry and whine and shut down, nearly every time we entered the Medical Therapy Unit. She hated the power chair and she may have not been able to tell her PT that in words but, she told her in disposition and emotions. But her PT had different thoughts and didn't pay attention to Zoey's cues. Zoey's PT had different ideas and she never, in my opinion saw the knowing soul that dwells within Zoey.

But Christian does. Zoey's new PT. I see it in his eyes. I see it in his enthusiasm to share his ideas with me and try new things with her. I see it in Zoey's smile as she greets him twice a week. Never cranky and always willing to work. Really work hard. It doesn't hurt he is a man. Zoey adores men. Must get that from her mom because as I remarked to SD, I actually play nicer with men. Always have. Not that I don't have incredible women friends but growing up and in high school, a boy was usually my best friend. Not sure the psychology behind that. Maybe "mommy issues", but that is a whole other story.

Anyway, other than my renewed hope in this PT switch, there is also the actual place we are going to for therapy that has me slightly excited. It is a special education school, K-8th, with typical peer models as well as a run of the mill, "regular" school, right next door where the kids can go for a portion of the day and hang out with that population. Although, the school is filled to the brim, with very involved kids, I have to say, I feel like I am with my peeps. I feel a peace when I walk through those doors and I feel like maybe, just maybe, we may have found Zoey's placement for next year. I still need to visit our other options. And can I just say, how blessed I feel that we have multiple options. 5 options in fact. How awesome is that?

The other thing, that nearly made my heart stop, was this:

Can you believe it? Right there. Right in front of me. Big as life. Our mantra since way, way, way back in seizure days. A reminder. Each and everytime we walk through those doors. A reminder to take the moments, all of them. Slow and constant. Steady and sure. And chances are, this little girl of mine, will continue to find her way. And the rest of us, right along with her.

I get by with a little help from my friends ...

2012-01-10T00:23:00.000-08:00

Would some of you still love me if I told you .... I am not a Beatles fan? At all. Never have been. However, that little line, from one of their many famous songs, just came to mind, after I sat reflecting on my day. And what a day it was. A day that felt like the morning belonged to a entirely different day because it was just that long. You know those kind of days?

I woke before sunrise this morning and headed out for my run. The first thing I noticed, was that at 6 am, the moon was shining brighter and fuller than you could ever imagine. It was just beautiful. And as I headed down a hill, I looked to the moon and saw the sunrise coming up over the horizon and I said a litany of prayers, asking for strength for the day ahead.

A day that I am able to push aside and not think about, for 4 months at a time. And I really do a good job of living life and forgetting about the necessary evils, of living life with a complicated child. Most of the time. Or at least I think I do. I try and soak up the here and now and seldom get caught up in the what if's of our tomorrows. But as we inch closer to Zoey's oncology check ups, each and every time, I get well, I get a little wiggie. Short. Snappy. Edgy. Sighing deeply. Repeatedly. So much so that Zoey will mimic me by touching her chest and breathing deeply herself.

So that is how it goes and it remains as such, until I have her lab report in my sweaty little hands. And, if we are so blessed and lucky, or rather, if she is so blessed and lucky, if those numbers are normal, I can breath. At a normal rate. And today, my wonder girl is blessed and lucky and I am breathing at a normal rate. Zoey remains in remission. As we circled those oncology clinic halls, for hours, waiting for our doctor who was running way way behind, I looked around at all the precious warrior, cancer fighting faces, and I knew, after reading those results, that Zoey is, without a shadow of a doubt, blessed and lucky.

Except briefly, during her blood draw, Zoey was joyful and happy and literally waved to every, single person she passed. Darling girl of mine with a few of her friends. Bestie to her left of course.

As for my friends. Oh. My. Gosh. Facebook messages in insane numbers. Phones calls and emails and texts. Most of which, I have yet to acknowledge and thank everyone properly. But please know, if you were one of those people, and you are reading this, I felt the love and the strength and the prayers. They enveloped me and carried me through the day. And as I head to bed shortly, I will know, that at yet another moment in my life, I got by with a little help from my friends.

Back to business ....

2012-01-06T13:12:00.000-08:00

The new year is underway and the balancing act begins again. Or did it ever really stop? I crave routine and order, so I am all good getting back to that. Although I could have used one more, just one more week of having everyone home and free from their daily obligations, be it school or work or whatever. But here we are, everyone heading in their own directions. Except me. I am at home most of the day really.When not driving from one place to another, I can be found running, orchestrating, and controlling things from the hub from which the chaos flows.

I am usually pulled in a thousand directions here. None of it really done begrudgingly. Well, maybe the housecleaning, which I do, religiously, but a tad bit begrudgingly. Seems as if I am constantly trying to fine tune my balancing act skills. Which often is not pretty. No one has ever accused me of being graceful. Aren't we all on a quest of sorts to find the balance in our lives? Whether it is truly attainable or not, a life in balance, who really knows? Marriage and children. Running a household.Work, as well as pursuits outside our home obligations, as in say volunteering and philanthropy. Friends, "real " and cyber. Both important and both requiring time and effort. Of all the things I just rattled off, there is still then, complicated facets of each of those areas. Mind boggling facets. And then, there is us. Us, as in individuals. The us that we were before we became who we are today. Yeah, that little thing called, self.

Oh yeah. That little thing. Taking care of ourselves, which has got to get done somehow, someway, or how does all of the above succeed or even stay afloat? I don't have the answer. I think perhaps things lie in prioritizing. For me, that is difficult, because I have so many things that are important to me. And today, my point, cuz I do have one, promise, today I want to touch on one thing that I have come to care about a great deal. Something relatively new and something that I did not see coming. And that has been Mission iPossible.

Never in a million years did I imagine that what started as an intuition deep inside me, about something that just did not feel right, would morph into what it is today. And I know, we over at MiP, as in Ken and I, we know we are small potatoes compared to all the incredible things going on out in this world, but I have to tell you, I am really proud of the things that have happened and how they have unfolded. Really proud of what we have become and what I think we CAN become. But besides the obvious funds and donations, that it takes to keep us going, there is the work that needs to get done to make it come together. And that is no small task when your partner lives almost 3,000 miles away. There are time constraints for one. Be it literally different time zones, or time to put into MiP because we each have lives and families and other obligations. But somehow we have managed to keep it together and we have hopes of it becoming so much more.

I am lucky to have teamed up with Ken. Lucky he trusted me from the get go and continues to put up with me and all my short comings. Because there are many. Especially when it comes to technical/ computer savvy. I really suck at all that. Truly do. But we plug along, with a resolve to see it to where ever it may be going and today we already have in the works, a plan, more than a plan, for Mission 3. For now, head over to MiP and read about Daniel, our first of 2 recipients from Mission 2. And hang tight with us after that. Consider becoming a follower of the blog so you can keep updated on the happenings. Good stuff is coming and you don't want to miss it.

For now, back to balancing. I have a very hungry little girl at the moment. Well, she doesn't actually know she is hungry but it is past her feeding time. She has patiently been sitting next to me while I painstakingly have written this post. Takes me forever. As in, I basically one finger type. Well, not one finger but close. Failed typing in high school. Who does that? Apparently me. Ken might want to reconsider who is has paired up with. Girl cannot even type? Full of surprises, aren't I?

My friends Rock. They Seriously do.

2012-01-05T09:51:00.000-08:00

Well, well, well. One again I am blown away by the generosity of my friends. I put a call out, just the other day. Less than 48 hours ago actually. Which, by the way, was SO difficult to do for me, the asking for help part, and what happens? You all came through, and then some.

And I know for a FACT that many of you were in no position to do so and really shouldn't have but you did anyway. You got behind something near and dear to me, to my family and you supported us. I have seen it time and time again. My marathon fundraising, my children's fundraising efforts, Zoey's Heart Blanket project, Mission iPossible. Whatever it has been, there you all have been. And if not monetarily, then in loving words of support in emails, messages, phone calls and posts on your own spaces out here on the great, big, bad, worldwide web. Amazing. Simply amazing. All of you.

I have this dream you know, of a gathering, of all my blog buddies. Meeting face to face. Hugging you all. Thanking you in person for all of this. Whatever this is. Because I have difficulty explaining the ties that bind us her in cyberland. But if you dwell here, you know exactly what I am talking about.

Would that gathering, that party, that sit down, not be the best thing? Ever. I am going to just keep dreaming it and maybe, someday, it will come to be.

Till then, my humble heart thanks you all, the only way I can , from this keyboard. It will have to do. For now at least.

Don't you hate it when people hit you up for money after the holidays?"

2012-01-03T22:25:00.000-08:00

Well, hate is a strong word, but it does make you feel uncomfortable and sometimes it even makes you feel bad. As in guilty, bad. Especially when you are not able to help. And, I totally, totally understand. I have been there myself. Many times. Do you know that if I had extra money, how many people I would be helping? How many organizations and benefits and fundraisers I would be throwing money at? So many, that there would be no extra.

But here I am asking for money. Not for me. But for Taylor, my beautiful 3rd born. And not for her, but for her final push for fundraising she is doing for her half marathon with the Leukemia/ Lymphoma Society. Yep, we have another one in the house undertaking a marathon, or rather a half marathon. In this case, the Disneyland Tinker Bell Half Marathon at the end of the month. I am so proud of her and I have to tell you, and she won't mind me telling you, this is huge for her. She is not, how shall I say this, well, she is not into exercising per se. I think she once said something along the lines of :" I can't exercise because everytime I start, I have to stop." That line has gotten a whole lot of mileage and a whole lot of laughs in this house, let me tell you.

Back in the day. The yucky chemo days.

But here she is, training and working hard and raising money so that people and children, like our sweet little Miss Zoey, have a chance to live the life they deserve. She is currently $535.00 short of her $2,200 goal, having raised a respectable $1635.00 so far. However, and aren't there always however's? Money needs to be in by Sunday. As in this Sunday, January the 8th. No pressure. If she falls short, she is responsible for the balance. And for a nearly starving college student, that will be a bummer. Again, no pressure. So, I am doing what all good mommies would do, and that is asking you, my beloved readers, to help if you are able. And some of you aren't and that is cool and understandable and perfectly okay and others, well, maybe you are and you feel called to supporting this cause and that, that would be wonderful.

Link here to Taylor's Fundraising page where you can make a tax deductible donation today.

We have no doubt that Zoey is here today because of clinical trials and advancements made in research, with funds likely granted by Leukemia/ Lymphoma Society. We have no doubt that many of our warriors buddies have benefited from the same. You have seen many of their faces here on this blog over the last 3 years and you have read with broken hearts, as we have said good-bye to far, far too many who needed their cure. Who deserved their cure.

We know, that our precious Klein, was with us as long as he was, because of clinical drugs developed by studies and research done, that would not have gotten done, if not for organizations such as the leukemia/ lymphoma society. Klein basically spent the last year and a half of his life, taking one clinical drug after another. A year and a half that his family would not have had with him and time that Klein would not have had otherwise. But in the end, that time was not enough. Not nearly enough. So the main objective here is to get to cure and the only way we do that, is to get out there and raise the money.

So there is my little schpeel. Do what you can, if you can and if not, then just send your prayers and good vibes Taylor's way as she completes her first 13.1. This proud mom will be waiting at the finish line. Thank you in advance and can I tell you how very, very much I dislike asking for money, but what can you do but do what has got to be done. And finding a cure, that my friends, has got to get done.

All in a Day ...

2012-01-01T01:42:00.000-08:00

I had been racking my brain trying to think of a post to begin 2012 with. I was coming up with nothing. Nada. Came up with not a single, solitary quote that I loved. No words of wisdom. But then again, who am I to think I have wisdom to impart? No inspiring little tid bits. No list of resolutions, as I really don't make them, per se. Nothing was jumping out at me. That was, until I took Zoey to bed.

Our nightly routine seldom varies with Zoey. She first gets her last tube feeding. Jammies on. Two layers cuz my girl does not stay under covers and she runs cold. All the time. Even in the summer. Then a round of kisses and hugs to everyone. Waves goodnight. Her trademark, crossing of her arms, furrowed brow, with a steel eyed nasty look. Slightly protesting going to bed but not really. She is usually exhausted by the time 7pm rolls around. I put her on on my bed. Grab a few books and we snuggle in. Read our books. Turn out the light and put on her Rockabye Baby Lullaby cd. And then, my favorite part. She curls up beside me. Snuggles against my chest. Plays with my eyelashes and then, out. Within minutes. I carefully transfer her to her crib. Cover her up. Say a prayer over her. And that is that. Our day ends. Rest comes to her tired body. 12 hours straight most nights.

Tonight one of the books I grabbed was " All in a Day". Beautiful book by one of my favorite children's book authors. Cynthia Rylant. Gifted to Zoey by the absolutely nicest bookstore owner. Ever. Owner of our little neighborhood bookstore that I have pined to own for like, always. Envisioned buying it with some money that would fall from the sky one day, when the darling elderly little lady could no longer run it. That happened not too long ago. But I was otherwise occupied birthing Zoey and keeping her here with us in this world. The lucky, new owner and I were talking one day. I was sharing Zoey's story with her. She stood there, wide eyed. Eyes brimming with tears and paused, walked to a shelf and handed me. "All in a Day".

A simple, yet beautiful book. With a message for all ages. A message to live life, each and everyday, to the fullest.

"The past is sailing off to sea, the future fast asleep. A day is all you have to be, it's all you get to keep. Underneath that great big sky the earth is all a-spin. This day will soon be over and it won't come back again. So live it well ... "

Not a bad little mantra to begin the New Year with. I think I will give it a shot. Idealistic? Maybe. But honestly, as hard as this life can be, it really can be, just that simple. Simple enough to be mindful of the fragility of this life and the gift of each new day.

Happy New Year to all of you that have found your way here today. Wishing you peace and blessings as 2012 begins.

Just a little glimpse of our Christmas magic ....

2011-12-29T21:52:00.000-08:00

Things were pretty magical around these parts. Lots to share. Too much actually, to share right now. In this very moment, exhaustion has caught up with me. Burnt out from the festivities and fun. And then, there is the little thing called non-stop organizing I have been doing the last few days. Yep, I am crazy like that. Every closet, cupboard, and dresser drawer, cleaned out. 5 bags of clothes and such, were dropped off at Goodwill this morning. Felt great. Purging and giving away. Cleansing. Great way to start the New Year. For now though, gotta share a bit of Miss Z with you.

Signing apple

She received "The Very Hungry Caterpillar" book from Jessica's boyfriend's parents, Mike and Jean. Zoey was just so darling listening to Mark read it to her and Charlotte. So cute sitting there and signing along with the words she recognized.

Signing hungry

Reminded us all of the simple joys found in this season. I sat there watching her in all her loveliness and realized something I have been going back and forth on since Zoey's neurology appointment last week.

Which I must say, I was absolutely blown away by all the amazing comments and advice and wisdom filled words, shared by all of you. Such love and support of my girl. And also, let me say, I am sorry about my absence on so many of your blogs. I am trying desperately to get my groove back on and slowly but surely feel myself resurfacing .

Signing butterfly.

I have to tell you, that peace that I had initially felt, didn't last long and for now, watching Zoey, in all that she is today, and all that she has become, I just can't bring myself to start the wean. Just don't have the courage to risk the place she is in right now. That may change and probably will have to over time, maybe sooner rather than later, who knows, but as of today, no wean January the 1st. Status quo continues to be my trusty safety net.

"For unto us a child is born ... "

2011-12-24T11:08:00.000-08:00

For unto us a child is born,
to us a son is given,
and the government will be on his shoulders.
And he will be called
Wonderful Counselor, a Mighty God,
Everlasting Father, Prince of Peace. Isaiah 9:6

To wean or not to wean, that is the question?

2011-12-20T23:24:00.000-08:00

Zoey's neurologist and I, do this little dance every 6 months. He sits there, hand on chin, leaning back in his chair looking very contemplative, and I sit there, trying to read his face before he speaks, my stomach in a knot trying not to puke, awaiting word on whether the time has arrived to start weaning Zoey off her seizure medication.

The seizure days.

Yesterday, our visit went much as it usually does, except, for the end result. Up until yesterday, we always decided to put off weaning. Found a reason, anything, mostly at my coaxing, to put off the inevitable. But yesterday, he said, it's time. My amazing pediatrician, who I always pull the "What if it were your child?", unfair card, also agreed. To which I said, okay, let's do it. But it really wasn't that simple. Hardly. It was actually very difficult and even today, I am not sure I am making the right choice. I can change my mind. We haven't begun yet. I can keep things status quo. My choice. He won't force me to do anything I am not confident in doing. But the thing is, I do trust him. Dr. Shields, is highly respected in the field of neurology. Especially where Infantile Spasms are concerned. That is why we went to UCLA, almost 4 years ago. At a time when we were not able to gain control of her spasms with 2 frontline drugs and then, when her seizures morphed into tonic and complex/partial seizures. So a part of me says, take the leap, trust in the data, and trust my girl.

The, I lost my little love, days.

But that pit in my stomach is still there. The thought of returning to seizure days, almost unimaginable. We have a 50-50 chance of that happening. And as I said to him, if I were a betting woman, I wouldn't take those odds. But for some inexplicable reason, I do believe, come the first of the year, literally, January 1st, the weaning process will begin. Very, very slowly. He said decrease her dosage by a 1/4, every 3 weeks. So we are looking at a 3-4 month process until she will be completely off. Terrifying really. The going back to watching and waiting and saying, to each other, "Was that anything?", to every out of the ordinary movement. Zoey actually has many neurological movements that are out of the ordinary, all day long because of her brain injury, so the watching will be a tad bit stressful. And those of you with children who have or have had seizures, you know exactly what I am talking about. I have been going back and reading my archives from those days and I tell you, reading those posts, bring things back in an instant and reminds me of why this process scares me. This one post especially.

The rip my heart from my chest, days.

So why wean? Well, her medication is a known cognitive dulling drug."Dopamax", is it's nickname about town. It is a known appetite suppressant. People actually seek this drug out for weight loss purposes. My child weighs a whopping 22 pounds. She is nearly 5. Would be nice to see if we can get her a bit more interested in food. Topamax is a drug that has been known to inhibit speech development. Some children have been taken off of it and lo and behold, there comes speech. The speech argument, will be interesting to see play out because although Zoey's stroke was on the side of her brain not responsible for speech, the timing of her stroke, in-utero, meant that at the early stages of life, speech is still bilateral and therefore, is her lack of speech a result of her brain injury or is it the topamax hindering it? Should be interesting. And scary. And nerve racking.

However, it also could be absolutely magical as well. Zoey might just emerge and develop in ways we could never have imagined. She just may come out of a fog that we didn't know she was even existing in. She just might, once again, surprise us all, and flaunt that feisty spirit of hers, all the more. These series of pictures were taken last month. We were at our local Down syndrome Buddy Walk, which Zoey was thoroughly not impressed with, until ... we removed her from the commotion and over stimulation and we placed her on the ground. She scooted herself over to this hula hoop and I was blown away that she did not hesitate for one second to pick it up, the very best she could and attempt to use it in her own unigue and I must say, accurate way. And, I need to add, there were no children around for her to model either. She did it on her own. I had absolutely no idea that SHE has any idea how a hula hoop was used. That should tell me something, shouldn't it?

Wish my girl luck. Send her prayers and wonderful happy, seizure free thoughts, okay? I am thinking she deserves it.

Mission 2: Complete

2011-12-16T15:20:00.000-08:00

I am so thankful for my partner Ken, who has taken care of most all the aspects related to our Holiday Mission iPossible Giveaway. Ken knew my focus had to be on Klein and his family, as well as taking care of my very own large brood. He took care of postings and parent emailing, as he normally does, but I think the biggest thing I am grateful for is that he allowed me to emotionally retreat and take care of things that were heavy on my heart and which needed what was left of my already low reserve of mental resources.

So with that said, I cannot tell you how thrilled I am to have just wrapped the 2 iPads and am ready to head to the post office. Such a wonderful feeling, knowing that in a few short days, 2 children will have in their precious hands, this amazing device. My family is especially grateful that we had the opportunity to donate these iPads, and at a later date, when time permits, I want to tell the story of how that came to be. For now, congratulations to Daniel and Helene. And to the rest of the children and families who commented, I so wish we had an unending supply of iPads. I really do. Everyone would have gotten one. For now, just 2 but I want to assure you that in no time at all, there will be another opportunity. So keep checking back and once again, thank you for your support of us at Mission iPossible.

"Now cracks a noble heart. Good-night, sweet prince; And flights of angels sing thee to thy rest." ~Hamlet,V,ii

2011-12-14T04:23:00.000-08:00

Each time I have left Klein, over the last few weeks, I have not truly said goodbye. I have not intentionally not done so, I just haven't. Hard to say the exact reasons. On those days, I would kiss him and leave and know in my heart I would be back. Back to hold his hand and tell him how much I loved him. Yesterday, I had the privilege and honor to spend many, many hours with him. I was able to be part of a day, that most would find difficult and unfathomable, and, on many levels, it was just that. Difficult for him. Unfathomable for all those who love him. Especially his parents. However, there was such immense beauty in those hours. Time I would not trade. And as I left, late at night, I leaned down and said to him, what I knew in my heart, would be the last.Words that were waiting, for a time I willed and prayed away, but alas, a time that came anyway:

"May the choirs of angels come to greet you
May they speed you to paradise.
May the Lord enfold you, in His Mercy,
May you find eternal life."

Not thirty minutes ago, the phone rang. 3:30 am. I knew.

Free. Free from all which bound you here in this world. Free from a fight unfair for anyone to fight. Free to fly. Free to be all that which you could not be here, but all that you should have been and should have done. Finally free. Klein Andre Lapitan. You are free.

“Come to the edge, he said. They said: We are afraid. Come to the edge, he said. They came. He pushed them and they flew.” ~Guillaume Apollinaire

2011-12-06T22:23:00.000-08:00

A woman on the edge.

That is how I have described myself as of late. Ask my family. Ask my friends. Ask the woman who parked in the handicap parking space, who did not have a placard. The woman who was not handicapped, nor was anyone with her handicapped, nor was the child she was waiting to pick up from school, handicapped. And, on top of it, she copped a flipping attitude with me. Which, I have to tell you, is never a good thing when a woman is on the edge. Come to think of it, it is never a good thing with me. Period.

So, if I happen to go clear over the edge. I sure hope I catch air. Or that someone who cares, is at least there to catch me. Otherwise, I am in big trouble.

Klein continues to fight. His mommy asks me questions, no mom should have to ask. Ponders things that no mother should have to ponder. I answer, not knowing if I am saying the right thing. Are there even "right" things to say, in moments like these? Moments that defy understanding and logic? Probably not. I wonder, in these moments, as I stand on the edge, how I came to be in this place and will I eventually, without warning, go over the edge?

"In three words I can sum up everything I've learned about life: it goes on."~ Robert Frost

2011-12-01T17:01:00.000-08:00

And life does, go on. Even amidst times when it feels like all should stop. Stop still and silently in it's tracks. And take notice of the happenings around it.

My sweet Klein is fighting valiantly today. His parents making decisions no parent should have to. Still, they hold tight to hope and faith. Why? Because they know of no other way.

This afternoon I was torn between paying attention to the seemingly mundane and the insignificant and ignoring that which seemed trivial in nature. And then, in one moment, I thought of Klein. I thought about his love of technology. His love of his many game systems and his guitar hero and his electric guitar and his laptop and his iPad. That child loves, loves, loves the gadgets and he loves his iPad. So there it was. My answer. Post about the giveaway. The new Mission. Mission 2. Klein would think it was the coolest thing that we were giving away not one, but two iPads for children with special needs. Klein happens to also have a little baby cousin, Fatima, that has Down syndrome. Oh how he would think it was the neatest thing ever, that children like Fatima, could get their precious and deserving hands on this piece of technology.

Klein, Christmas 2010

So I will post about it. Slightly reluctantly, if you must know. But life goes on. Even if we think it should not.

Head over to Mission iPossible and hear about this latest giveaway. And it is just that. A giveaway. No funds needed to be raised. No strings attached. Only a few guidelines. 2 iPads that our family was blessed and lucky enough to be given. We thought that they should be passed on and what better time than at this Holiday season to do that. You will find all the details over at Mission iPossible. All the particulars. Things will happen quickly, so if you are so inclined , enter and spread the word.

In the mean time, if you pray. Pray. Send them Klein's way. Send them to his parents. For peace and wisdom and strength for the journey.

Perspective for me, is never ever, very far ...

2011-11-28T12:45:00.000-08:00

Our Thanksgiving was busy and beautiful. A house packed. A table overflowing with very non-traditional food. We ventured away from the usual feast of turkey with all it's trimmings last year and this year, did the same. No regrets. The change suits us. Casual and no fuss. More time to hang out, talk, watch football and enjoy each others company. Although I am not a huge fan of change, in this case, change has been good. Oh, speaking of change. Any of my Catholic cohorts reading this, for the record, I am NOT, digging the changes implemented at mass this past Sunday. Those changes, are going to take me more than awhile to adjust to. As in, the stubborn side of me will be reciting things the old way ... and under my breath.

I did head out briefly, as in one stop, 2 items, done, on Black Friday. Picked up Elf on the Shelf for Charlotte. Never heard of Elf on the Shelf? Go here and check it out. Could be a cute tradition to start in your house and if nothing else, a new twist on the old " You better watch out,Santa is watching you", that many of us grew up with. Nothing like instilling fear, in a new fangled way, with another generation of wee one's, this holiday season. I spent the remainder of Friday decorating and finishing up addressing Christmas cards and had the rest of the weekend planned out and then, just like that, in an instant, everything changed.

Saturday morning I received a call from my good friend Rowena. Rowena and I met, outside the bathrooms on 4E one March morning of 2009. We had each ducked out briefly from our respective childrens hospital rooms.I looked at her face and in an instant I knew her journey with pediatric cancer had just begun. It was the new diagnosis haze I saw in her eyes that gave it away. I recognized it readily, for it was that same reflection I saw in myself, not 5 months back. I hugged her and told her, as I had been told almost from the time of Zoey's birth: Hold tight to hope. Keep your faith close and let your child be your guide. In her case, a son, a few months past his 10th birthday. His name, Klein.

Klein has spent nearly 3 years leading the way. Unfavorable prognosis from the get go. A valiant fight in the Bone Marrow Transplant Unit. Brief respite from leukemia and then, relapse, after relapse, after relapse. All the while, defying odds and charting his own course. And his parents, have unselfishly allowed him to do things his way, in a quest to be a "normal" kid. That is all he has ever wanted. On the floor I would talk to him and he would speak of the things he missed the most: pizza, playing soccer and basketball and hanging out with his friends. My heart ached, each time he spoke of the life he yearned for outside those sterile walls. So his parents have allowed him to return to school, fraught with germs galore. They have allowed him to stay up late into the night playing his beloved video games with friends. They have fought the over powering desire to hole him up in the house and encircle him with their private protection. They have allowed him to be a normal preteen boy, under the most abnormal circumstances.

And on Friday, they headed to Magic Mountain, a roller coaster theme park, here in California. A pre-celebration for his upcoming 13th birthday on Tuesday. He and 16 friends, doing what teens do. Hanging out, eating junk and riding wild rides. It was on one of those rides, that the unthinkable happened. For reasons unknown to any of us, even the doctors, on one of the rides, Klein suffered two major brain bleeds. He underwent a 4 hour brain procedure at a hospital nearby the theme park. He was stabilized and then airlifted to CHLA. A place that has become his home away from home. A place where he is surrounded by a staff that has come to love him and a community that has enveloped he and his family, as their own.

He is on a ventilator. He is fighting. He continues to show us the way. As I sat by his bedside twice, over the last few days, I was reminded of the cruelty of this life. I was reminded of how fragile and uncertain all of our lives are. I was reminded, unfortunately, that I actually have not made much of gain when it comes to being tolerant of others and what they deem difficult and hard. I really thought I had adopted that " everyone has a cross to bear and a story and none is more difficult than another." mentality, but it isn't true, you know? I find that I am often resisting the urge to shout, suck it up and move on, would you? I hate that that has happened. I hate that I have lost a bit of my empathy chip. What kind of a person have I become when I do weights and measures on others troubles? I once thought I could recapture a part of it as time has passed, but I have instead decided that perhaps that the lose of it, just may be yet another unfortunate casualty of this life I have lead over the last 5 years.

Today I circle back to what has seen me through most all the difficult moments of my life in recent years. Hope and Faith. As well as the way lite by perspective given by one far younger than myself. Unfair and beyond logic. Fight on sweet Klein. You lead. We will follow and all the while, we will wish it were not so.

"No one is as capable of gratitude as one who has emerged from the kingdom of night." -Elie Wiesel

2011-11-23T16:00:00.000-08:00

It is hardly a secret, that since Zoey came blazing into our world, almost 5 years ago, that our lives, all of our lives, and the directions they take, seem dependent on the ebb and flow of hers. If she is good, we are good. If she struggles, we struggle right beside her. And so it goes. Yes, we all have our independent pursuits and dreams, well, maybe everyone except myself, because now my life has forever become conjoined with hers. That does not diminish the importance or the love I have for my other children, or the love they have for each other, but we all know the truth and the truth lies within the itty-bitty 22 pound, almost 5 year old, youngest member of our family. In the end, it all comes full circle to Zoey.

Her life and her fight, from breath one, has taken us from the depths of sadness and despair, riddled with fear and uncertainty, into a place overflowing with gratitude. And while the days ahead will undoubtedly be filled with journeys into the unknown, as it stands today, watching Zoey travel through the darkness of the unfair, has enabled the rest of us to stand in the warmth of the light. And for that, our hearts overflow with gratitude.

A very Happy Thanksgiving to all of you who have found your way here today. On this day, may you be surrounded by joy and laughter and those you love.May we each pause for a moment, amongst the chaos of the day, and look with gratitude on the blessings and the miracles that encircle us, ever mindful of those who continue to walk in the darkness of uncertainty.Peace and love to you all.

Saturday Morning Chaos with a side of Led Zeppelin. Always action in our house. 3 minute glimpse of our beautiful disaster

2011-11-20T01:17:00.000-08:00

Amazing ...

2011-11-15T23:04:00.000-08:00

Rain and wind the entire night before. A forgotten inhaler miles away. The only inhaler of the three that I take, that was most necessary. Go figure. A running bib and timing chip mix up discovered at 11 pm and far to late to do anything about. A so bad, you would had to have seen it, to believe it, hotel. Forecast for more rain and wind the morning of but do think any of that was going to stop us? Hardly. And you know what? Jess and I awoke at 5 am, and before long, here is what we saw.

How is that for amazing?

Jess bettered her time by 5 minutes from our San Fransisco half marathon last month and I shaved off 10 minutes on mine. She still kicked my a@# but I'll take it. Hoping to shave off a bit more next month. We will be doing it again at the Santa to the Sea Half Marathon. I know, I think I have officially lost my mind.

Then there were the people I ran with. Incredible bunch of men and women and more than worthy of the title of amazing.

And of course there are my friends, Bill and Victoria Strong, and the Gwendolyn Strong Foundation. A foundation born from the need to do something, anything, when life had handed them the unexpected and the unfair. A foundation that they have so tirelessly built from broken hearts into something full of hope for a future where SMA will not be welcomed. The foundation and Bill and Victoria, they are truly, truly amazing. And a darling couple on top of everything else!

Finally, sweet Miss Gwendolyn, she, this child, is beyond amazing. She is awe inspiring and represents beauty within a world wrought with fight and courage that no 4 year old should ever have to know. Thank you to GSF, the Strong family and their extended family members and friends, for allowing me to tag along on this simply amazing journey.

Kick Ass, Take Names ...

2011-11-09T01:02:00.000-08:00

I am in a mood. As noted by the 3 adults in the room with me at this moment. And I admit it. I am. The reasons? Of no consequence really. All over the emotional map right now and the mood stems from too many complicated areas of my life. And who wants to hear about all that? No one. I am certain of that much. Let's put it this way: If it wasn't 42 degrees out and almost 11, I would be strapping on those shoes of mine and going for a second run of the day. My escape and my therapy, both found when I get into my zone and run. SO, SO very tempting. And, speaking of running ...

The above image, a card, given to me by Caitlin when I did my run in San Francisco last month. She snuck it up with Jess and, I have to tell you, I cried when I read it. Well, I laughed at the front, which is so telling of my personality and cried at what she wrote inside. You have to know this much about the words she wrote. When I have yearned, for the better part of all my life, for someone to be proud of me and I hear that and more, from my own child, well, that will bring you to tears if anything ever will.

I brought that card home and placed it where I can see it daily. It reminds me of an attitude that has served me well over my lifetime. But like most things for me, I have had to find a balance between the empowerment of the phrase and the alienation that can occur when my emotions get the most of me. So lately I have chosen for those words to strictly inspire me when I run.

These are my shoes and ... I love them.

Running is a major endorphine release for me. When I run I feel in control and free and, for one of the very few times in my life, I feel beautiful. Yep, sweaty, no makeup, baseball hat, oddly beautiful. So in those first 2 miles of a longer run, when I wonder what the heck I am doing out there, I know, I just need to push past that initial desire to stop, because I know what comes next,.And what comes next, is that indescribable rush that only those who run know. I am reading an incredible book right now, "Born to Run". It is not mainly a" how to" book on running , it has, oddly enough, given me a glimpse on how to, in some ways, live my life. Ways far beyond running. I'll share more on that another time.

And running I will be, perhaps in the rain, come this weekend, with Team GSF in the Santa Barbara International Marathon. I am running with 29 other amazing runners. All banded together to help put an end to SMA. The Gwendolyn Strong Foundation has just unveiled the new look of their site. Fresh and so incredibly classy but what isn't new, is their mission. A selfless quest to end the cruel disease that is SMA. All over that site you will see their ongoing mantra, Never Give Up. So with that in mind and my Kick Ass, Take Names mantra, I am all set.

Also, remember, you still have a few days left to donate to Team GSF. If you haven't had an opportunity click over to my fundraising page and make your tax deductible donation today.

However, I must also warn, if I can't snap out of this funk, those closest to me best step aside. I will revert to my old kick ass, taking names, ways. Indiscriminately.

This Life of Ours ....

2011-11-04T23:11:00.000-07:00

Matt and Jess continue to work tirelessly towards their respective careers, and it hasn't been easy. But I have yet to hear them complain. At all. 2 1/2 years since graduating from college, they may say they feel a bit like they have been spinning their wheels, but they really haven't . Deep down I know they know that. Jess is finishing up her second semester in nursing school and Matt continues to work at the ambulance company in Los Angeles and has just finished part one of the application process to a fire department up north in Berkeley. He also finished testing locally for a paramedic company. I would hate to see them 6 hours away, for selfish reasons of course but in my heart I am hoping the Berkeley thing pans out. Super cool area up there and I think it would be an amazing place for them to start their life together.

And then, we have these two. See those looks? We see them often. Sheer exhaustion. Danny works like a dog. The guy seriously works harder than anyone I know. Maybe even Mark. He works 6am to 3pm, everyday, as an engineer with Morley Construction and then heads to USC for his classes for his masters degree. Comes home at 10pm and then gets up at 3:15. That would be AM. Studies and then heads into work. Crazy that son-in-law of mine. But, I tell you, the guy is doing a beautiful job balancing it. It is extremely hard on Caitlin to have him away so much. She misses him and he misses her and he especially misses his Charlie girl.

And who wouldn't miss that face? Charlotte is just so much fun. You know, the 2 year old, say the funniest, dance the darlingest, give the sweetest kisses, 2 year old fun? That is the stuff he misses. But I remind them every, single, day: short time sacrifice for long term pay off. Life has beautiful things waiting for them. Now isn't so bad either. And they know that as well.

Taylor Morgan is doing her thing at Pepperdine. Hefty college load, work and of course there is Mr. Brandon Born. He has been hanging around these parts, on, and just a teeny bit off, for 4 years now. Currently in Arizona finding his way through college as well. Great kid. Darling little couple. Weighted down, in moments, by some of the stresses of young adulthood. I don't have the heart to tell them that life gets a tad bit more complicated as you go. Something tells me they might already know and hopefully are just soaking in these days.

And then there are the boys. Mark is doing what Mark does, working. It leaves little time for much else. He lives it and breathes it and wishes, he were home more. Actually, as I write this, nearing midnight, still not home. But, unfortunately, the nature of his job, doesn't lend itself to more home time. However, I must say, sometimes I tell him, that I think he does a little dance on his way out the door in the morning. In fact I think I have seen him sprinting towards his car on somedays. It is crazy in this house and talk radio and a solo car ride, brings a certain measure of respite to him I am sure. And the little guys, they are doing little guy stuff. Playing hard. Living large and carefree. Ah, too be young again. I know that their little lives are filled with their own little stresses but when I see them rough housing and rolling on the floor in wild, joyous, hysterical, laughter, I think, can't I keep them this way forever?

And Zoey. She continues to stick to the tried and true, slow and steady wins the race. Each day she sneaks in something new, subtle but definitely new. And lately, it is with her communication. In fact today, at her IEP, they added 2 new goals because she had met her previous ones. Speaking of the IEP, as I mentioned earlier to someone, quick and painless. Seem to be on basically the same page as the 10 others in attendance. That is a few short then her normal posse members. Noticeably absent was her PT, soon to be ex PT. We have officially asked to switch and the new unit where Zoey will be receiving services, the PT there, immediately asked, " Way is it, that someone is working on a powerchair goal with her and not an ambulation goal?" Well hello and thank you Jesus, ding, ding, ding,we might just have a winner here. Surprise, surprise, they also would like me to bring her Rifton walker to the first evaluation. Now isn't that a novel concept? All in all, Zoey is flaunting her feisty spirited self and leading the way. It never ceases to amaze me to listen to these therapists and educators, marvel at Zoey. They look at her file and all the obstacles placed or rather thrust upon her, one after another and then they see Zoey, who pretty much has said, screw you, I will show you all. And she absolutely has.

Ah yes, I suppose that brings things around to me. Same old, same old. And the old should be accentuated. Sometimes I have to catch myself when I am talking to someone and I mention my age. I pause and think, is that really how old I am? Nearly choke on that number. I have contemplated lowering that by a few digits. Kidding. Well, I am just sort of kidding, truth be told. Anyway, I am just doing my thing and on somedays doing it better and much more gracefully than others. Running a lot. My salvation on those not so graceful days. I have the 1/2 Marathon with GSF on November the 12. Struggling with a slight IT band issue but pushing through. My lungs have done a complete turn around since starting my 3 inhalers. 60 % lung function to, drum roll please...104% Crazy uh? A friend of mine said that scares her to death because if I could do what I was doing in my daily life with the 60 %, what will I be like at 104. Seriously though, I feel great and am so thankful to have been diagnosed and be responding so favorably to the treatment. Speaking of the marathon, for those of you who donated to our fundraising efforts to put an end to SMA, thank you again and for those of you so inclined, you still have a week. You can go to my fundraising page with GSF and make a tax deductible donation now through next week.

That's all I've got. Probably enough I'd say. Hard to be short and concise with my families size. I mostly do this for the East Coast relatives who need a catch up post from time to time. To the rest of you, if you have made it this far, thanks for hanging.

Meeting " life skill " goals ...

2011-11-02T21:55:00.000-07:00

I gotta tell you, I hate that term "life skill". If you happen to have a child who has had an IEP, or has participated in any type of therapy, especially one where they receive services, and said services are paid for by entities other than yourself, I am certain you are familiar with the " life skill" thing. Zoey receives services through CCS here in California and if she does not meet or is at least making strides towards afore mentioned life skills, well, she is out of luck. She will be dropped. See my "Crossroads kind of Suck" post on my thoughts on her soon to be former PT and her walking "life skill".

My feeling is, and has always been, given Zoey's plethora of diagnoses, that her life skill, in this moment, is that she is simply living. When we start writing goals to dress and undress and stand at the sink and wash hands and so on and so forth, I just cringe. I have often said to people, try immobilizing one of your arms and one of your legs and then go about your day and see how that works for you. Throw in a cognition issue and well, you have just brought the difficulty to a whole new level. The idea that Zoey will dress and undress herself, unassisted, is, in my opinion, asinine. Just saying. But I will play along with the powers that be, but on the home front and in my time, I do things that I think are more within reach. Like how about we hit the feeding front.

Zoey receives most of her nutrition via her g-tube. After, kicking the oral feed habit after seizures and chemo, food to her, was a no go. Until 6 months ago that is. I finally have her where she eats 3 packets of baby food, three times a day, and another is fed to her at school. HUGE progress. At school, her amazing aid, whom by the way, I would do anything to have with me for well, forever, she decided it was time to try hand over hand feeding and Zoey has been agreeable and on occasion, she will attempt to do it all by herself.

Look at her eyes crossing because she is concentrating so intently.

Look at her little left stroke hand fisting, because her right hand is engaged. Hate that.

Switched to the maroon spoon with a bigger bowl surface.

So we gave it a shot the other morning at home at the end of her feeding and she managed to hang with it, until the very end, without hurling the spoon across the room. Stand by for the video however, and see how things go when she grows weary with playing along with this particular life skill practice.

A Post on Blood Donation .....

2011-11-01T23:40:00.000-07:00

Random, right?

The thing is, it really is a post I should have hit a long time ago. And honestly, I cannot believe, that I have written 707 posts and I am fairly certain, I have not even touched on this topic. Ever. Shame on me. But there I was this morning, pounding the pavement on my daily run, and out of the blue, I start thinking, blood donation. The thing you need to know about that little fact, the running part, is this: One of two things happen when I am out on my run. Scenario one finds me totally in in a zone, music cranked, head down. Absolutely unaware of what is happening around me. Yep, head slightly down looking at the ground. Not really the best of technique's mind you, seeing that the other day I nearly took out a sweet little old lady out for a stroll with her little fluffy white dog. Scared her and actually scared me a bit as well. Really need to lift my eyes more often, don't you think? Second scenario: I have 16 million different topics of life going on in my head and am barely aware of the music blasting in my ears. This morning, scenario two, blood donation.

Maybe it was my previous post on the anniversary of Zoey's treatment beginning, who knows but I really need to get this topic out of my head and down and perhaps, while I am at it, compel a few of you to get out there and donate. You see, Miss Z would absolutely not be here today without the gift of blood and blood product donation. Not just a gift actually. A LIFESAVING gift. And that gift started long before her treatment for leukemia began, that gift started in the first hours of her birth.

You see, Zoey was born with a rare form of leukemia called TMD. She came out of the womb looking so sick. She was puffy and edemic. You could hardly see her ears. No neck. Her belly was huge. She had red splotches all over her body.

But we didn't realize how sickly she looked until she was a few days old and she shrunk into this itty-bitty, tiny little baby.

You see, I had never even seen a newborn baby with Down syndrome. None of us had. Zoey was born and we were like, okay looks right to me, I think, but what we didn't really know at the time, was that her blood was so messed up, that her physical appearance was being greatly effected by it. It is not until I see the faces of some other chromosomally enhanced newborns today, that I truly realize how sick my little girl was. There was talk of her having hydrops as well. That was dismissed by my obstetrician in the delivery room but was being spoken at great lengths by the neonatalogist at her birth. Side note: DO NOT google an image of hydrops unless you have a strong stomach. It is not a nice diagnosis.

Anyway, Zoey was airlifted at hour 6 of her life, to CHLA and after they stabilized her there, they performed a double transfusion exchange. A transfusion exchange is where they remove a patients blood, in Zoey's case, 10 ml's at a time, and concurrently replace the same amount. And they do this until the patients blood has been, as close as they can estimate, entirely removed and donor blood takes it place. In Zoey's situation, they did that TWICE. Can you believe that? My little newborn baby, a total double body transfusion before she was 11 hours old? Crazy. And LIFESAVING. And more transfusions followed, too numerous to count, during chemo. Platelets as well. And the thing is, I don't even flinch and didn't even flinch, at the thought of her needing any of it. Much like other things that had to be done in the name of saving her life over the course of the last 5 years. You do what needs to be done with the hope, in the end, it yields the desired result. And Zoey is here, so I as far as we can tell, we made the right choices. I have gotten quite good at surrendering. A lesson, in relinquishing control I suppose. Certain there might be more of that in the days ahead. Sometimes, the path of least resistance proves victorious or maybe it's just that I am too weary to fight in some moments. Hard to tell.

If you already donate blood and blood products such as platelets and plasma, thank you, thank you. If you don't and you are able and you fall within the criteria of giving, please consider. Mark is a frequent flyer and has started giving at CHLA, which is close to his work. You would think that the supply at a hospital would be plentiful but it isn't always. I remember a few times being on the floor with Zoey during leukemia treatment and CHLA was out of blood and platelets. Out. Completely out. We had kids bleeding from their gums and noses and open wounds and no platelets and no blood . That is the ugly, ugly truth of it.

There it is. One of my random thoughts while running. You SO do not want to know what else I have floating around up there in my constantly over thinking mind. Scary place sometimes. Scary, scary place.

Couldn't leave you with just the above pictures, could I? Dropped the little love in the middle of the pumpkin patch and she was happy as a clam!

3 Years ago Today ...

2011-10-31T00:18:00.000-07:00

I love Halloween. I really do. And honestly, I have no idea why either. First of all, I am a super scaredy-cat. Ask anyone. I have been known to sleep with various tools/ kitchen items, under my pillow or bed, when Mark has been gone. Been doing that since I was a pre-teen. I absolutely so do not watch horror movies, and as much as I love a good action packed thriller, I definitely do not like a slasher film. But October comes and I am beyond excited. I swear, my Halloween decorations are beginning to rival my Christmas ones. I look forward to making chili and goodies that night and I love handing out candy. I love seeing all the kids dressed up and I even love the big kids. The teenagers. As long as they make an effort at a costume and are polite, it's all good. I remember all too well that year that I crossed the threshold and became "too old" to trick or treat and I remember vividly how very bummed I was.

So, I am thinking that you get the point about me and Halloween. And, I am also thinking, that you would imagine that seeing Zoey began chemo 3 years ago on the 31st, my love affair with this holiday would abate, but it hasn't. Maybe it's because the place where we stand today, is filled with such beauty and grace. Perhaps if our path, or rather Zoey's path, would have taken a different direction, I would venture to guess I would feel completely different about this day, without a doubt.

Three years ago, at the tender age of 19 months, my little love began her fight against leukemia. I remember waiting for that liquid gold to arrive in her room. I was exhausted and terrified and absolutely felt like I was living someone else's life. I sat in that crowded, sterile hospital room, holding Zoey, trying to take deep breathes and quite frankly, in the end, it all was so anti-climactic. The bottle with the skull and crossbones, yep, the bottle really does have that on it, well, it was brought in and hung and the IV drip began and so began Zoey's 8 month fight. Those early days were filled with such uncertainty and fear. And although, as time has passed, the level of fear and uncertainty has diminished, but I have to tell you, as I write this, I know, without a shadow of a doubt that the fear and uncertainty of the future, will never, ever leave me. Not ever.

I remember trying so desperately in those first few days, to be present for all the rest of my children. Emotionally more than anything else, since my days were spent almost entirely at the hospital. I promised myself I would pause and answer the phone for the big girls when ever they called and I promised that I would try to not allow them to sense the fear in my voice when I did talk to them. So it was, not 2 weeks into Zoey's treatment, that my phone rang. I remember that Zoey's room was unusually packed. She had broken out in this weird sunburn rash. Her g-tube had a raging infection. People were standing over her crib trying to figure out what course of action to take. Mark happened to be there and well, it was busy. But I answered the phone and it was Caitlin. She asked if I had a minute, which I really didn't, but I said yes. After some catching up on Zoey, she finally said she had something to tell me and I said go ahead and that is when she told me she was having a baby. I remember saying" No,no, no, no!" And she will tell today, that she thought initially my reaction was of course directed to her but I quickly followed with, "So is this how God is going to do it? Am I going to lose a child and be given a grandchild?" That is what I thought in that moment when my older daughter needed me most. I could only fixate on the life and possibly the death, of my youngest daughter.

I think of that moment and those words often. Especially when I watch my little wonder with her sweet little niece. I think of that moment as I watch Charlotte ever so gently move Zoey's hair out of her face. Or as I listen to Charlotte say, "Down syndrome. Fragile. Help", when asked about Zoey. And I am reminded, in an instant, how very blessed we are to be standing in this amazing moment. Look at how far we all have come in the last 3 years. I look at the photo above and cannot believe, on this crazy little holiday, that I have such a blast on, that I am able to spent it with these two precious girls that I love so very much. How is it, that I came to be so absolutely lucky in this life?

Upcoming IEP ...

2011-10-25T00:25:00.000-07:00

So, I have been thinking about Zoey's IEP that is coming up this week and have been asked by the powers that be, to think about the topics I want to cover, as we begin to gather information on her placement for next year. Kindergarten placement is going to be a little tricky. We have a number of options and to say I am confused, is an understatement.

However, I do know, without a shadow of a doubt, that I need everyone involved to look past the fact that my child is 100% dependent on another individual for her every need. I instead need them to realize, that although her tiny body is not able to stand and walk and get to the potty or feed herself, or verbally express herself, I need them to see, her little mind knows exactly what she wants. Zoey speaks volumes, in her own way. She lets us know that she just wants to be part of this great big world that surrounds her. She wants to participate in everything little thing that goes on, especially when other children are involved. She needs to, in my opinion, be in the least restrictive environment, that allows her to use her body and her mind, in her own unique and brilliant way.

Last weekend when I was away, Mark took the kids to the zoo in Santa Barbara. There is this little grassy knoll the kids gather at and slide down on pieces of cardboard. Mark said that the boys started sliding down that thing and Zoey wanted out of her stroller immediately. Mark would no sooner put her up at the top of that hill, that she would find her way down in nothing flat and want Mark to carry her back up to do it all over again and again and again. Perhaps I should just bring in these videos. Maybe these are all that needs to be seen as we gather round table. Maybe they need to see these images instead of the wheelchair and the diagnoses and the numbers that place her at a 12-15 month level, at best, on those extremely frustrating and sometimes down right depressing, cognition tests. Maybe they need to see in my child, the face of a little girl, who had defied all the odds and who just wants to soak in and explore all the opportunities that are at her precious finger tips, only if they take the time to bring them to her and her to them. And, if they can decide that Zoey deserves nothing less then their best. ( Sorry about the quality of these. They are from Mark's phone)

One race down, one more to go ...

2011-10-19T00:15:00.000-07:00

Jessica and I had an amazing weekend, but you will have to take my word for it because I have not one single, solitary picture to prove it. Brought the camera but didn't use it. Not once. Guess we were just enjoying our short jaunt to San Francisco and enjoying our time together too much. I seldom have an opportunity to spend one on one time with any of my children, so this last weekend was a real treat. It made me think that maybe I should do this more often with the big girls. Like once a year with each of them . I think that would be wonderful and doable actually. Seeing it seems, everyone survived in my absence.

And speaking of surviving, I did. Well, barely. At least the plane flight. I didn't mention it in my last post, as it seemed slightly trivial and down right wimpy in the company of such bravery, but .... I am terrified of flying. TERRIFIED. The flight is like barely an hour but that doesn't help. I think it is a control thing. You know, 30,000 up and no where to go and well, no, where. to. go. Ask Jess, a few times, especially on the flight back, I had a serious death grip on her forearm. And my Jess, anyone that knows her, knows she is short on patience and sympathy, with those who lack the ability to see things with logic. And I say that with the greatest respect and love. Really. But even she admitted after, that the turbulence was nasty and the pilot, on a few moves, appeared to be new to the gig of maneuvering an aircraft. No joke.

Flight aside, the race was great.. With a few exceptions. One : A calf cramp, straight out of the gate and lasted from step one until mile 3 and then as quickly as it appeared, it was gone. Two: My iPod. You see, I have never run 10 feet without my music. Ever. So, there we were, in the starting gates and I turn on my iPod to set up my marathon playlist and I look at the battery life and see ... one red bar. I could not believe my eyes, I show Jess and I am instantly freaking out. An under 10 minute freak out but none the less a freak out, until I finally say, well, it is what it is and will be what it will be.

At 7 am the race begins, I click on my iPod and go, fully expecting the thing to stop at any moment. Between the calf cramp and my iPod, the only thing I felt like doing in that first mile or so was running back to the hotel, and pulling the covers up over my head but I press on and the calf gets better and the music keeps going. And mile 6 flies by and the hills come with a vengeance from mile 6 -9 and I push forward and the music keeps going. I round a corner and see the bay in all it's beauty and I visualize all the beautiful faces of my mighty cancer warriors and I begin to cry and, the music keeps going. Soon, mile 12 has arrived, 1.1 miles to go, I see the finish line ahead, with those handsome firefighters ready to give the finishers their Tiffany necklaces for crossing that line and that flipping music is, unbelievably, still going. Some of the last lyrics I remember hearing as I am running those final feet are a few lines from a Coldplay song and it went like this:

Lovers, keep on the road you're on
Runners, until the race is run
Soldiers, you've got to soldier on ...

I find Jess, she asks me how long my iPod lasted and I tell her it played the entire time and we look down at the the iPod and at that moment, it says "connect to power". No lie.

Can you believe that? I asked all my angel warriors, at the beginning of that race, to help me see this thing to the end and you know, I knew they would, and they certainly did, didn't they?

I missed the time I wanted to hit by 4 minutes and Jess, well she kicked my butt. She finished the 1/2 in 2 hours and 10 minutes and I finished in 2 hours 34 minutes. We looked at our standings in our age groups and Jess rocked it by finishing 476 out of 3063 runners and I came in at a respectable 445 out 1380 in mine. Jess wants to break the 2 hour mark eventually and I want to improve mine to oh, a lofty goal of maybe 2 hrs. 15 minutes. Jess hasn't signed up for another quite yet but if I know my girl, she will soon. As for me, I have the Santa Barbara International Marathon coming up next month, November the 12th, where I will be running with Team Gwendolyn Strong Foundation. Our funds raised, furthering the cause of eradicating SMA. Speaking of which ....

I would love it, appreciate it and be so very honored, if any of you felt so inclined to sponsor me in my race. You can make a tax deductible donation though my personal fundraising page with FirstGiving and, in doing so know, that each dollar you give will be a much needed dollar towards cure. Together we can make a difference. No gift is too small and this little girl, the beautiful Miss Gwendolyn, will send you virtual love, no matter where you are.

Thank you again to all of you, for your inspiring words of support and encouragement for my run and words for the beautiful children that I have come to love. I was touched by all the messages and I truly felt the love from afar. I am so blessed to be part of this amazing blog community. The people, you all, everyone of you, even the silent lurkers and maybe, most especially the silent lurkers, your presence here with me on the world wide web, is a gift. A beautiful, inexplicable gift.

"Tell me I can't and I won't and I will show you I can and I will or I will die trying."

2011-10-15T01:34:00.000-07:00

The quote, that was me. Last month. Sitting across from my asthma guru and new best friend, Dr. G. She had walked in the room with my lung function test results and she proceeded to go over them with me. What they meant. What she thought the culprit might be. Still slightly shocked a bit herself with the results. I asked about my 2 marathons I had coming up. She gave her opinion and thoughts on them, and that is when I said what I said. She looked at me, having literally just met me the hour before and she said, she had no doubt, that it was true. She said, as I shared with her our families story, or what amounted to Zoey's story, that to find your way to any semblance of sanity, one must come equipped with an instinctual determination chip. So I left that office, my chip and I, more determined, with more resolve than ever, to not let this new diagnosis stop me. I am no stranger to new diagnoses. For me, or my wonder girl. I ordinarily process them, hear the a game plan and move on. Except however for Zoey's nasty Infantile Spasms diagnosis, that was a whole other beast. Did not handle that one with any type or form of grace. Whatsoever. Anyway, here I am on the cusp of The Nike Women's Marathon and I am ready. Or at least I am as ready as I will ever be.

I have done all I can do. I have trained everyday, or nearly everyday. I have run, almost every single night. I have faithfully been taking my 3 inhalers. I did a practice 10k run. Which of course I was not thrilled with the time. 3 minutes short of what I wanted and if you asked Jess, who ran with me, she will tell you that I obsessed on the time thing for like 30 minutes after the race until she finally told me, if I said it one more time, she would punch me.Sounds so unlike me, doesn't it? Those of you who know me well ... the whole obsessing thing. So I stopped. For the time being. You see, the thing is, I have seriously high expectation of myself in all areas of my life. Most of the time, not realistic expectations either. I am highly competitive. Not with others but with myself. I am my own worse enemy and this, these marathons and training under the physical restraints I have, has been a schooling in patience and acceptance. I don't know if I have necessarily passed the test in those areas, Sunday will for sure tell the tale.

Sunday I will run BUT, when it comes to the hills and people, we are talking San Francisco, there will be hills, when it comes to the hills, I will have to walk. With 60 % lung function I will deplete all of my gas and reserve if I attempt to run them, and as it is, even walking, the elevation will be tough. I hope to make up time on the down side. I have a finishing time in my head. Don't know how realistic it is but, I am going to give it my best. And not because of this insane personal agenda I am on but for a far more important reason. A reason, that lives with me and inside me everyday. A desire to do, what little I can, to honor those lives I have been so privileged to be a part of.

The Nike Women's Marathon in San Fransisco, that I will be running, is a marathon who's proceed go directly to the Leukemia and Lymphoma Society. Last year I think the money raised was about 14 million dollars. Money towards cure. Money so children like my Zoey have a chance to arrive at cure and live their lives as children should. So I will run. I will run for my girl and I will be running for the other precious children that have touched my life because of Zoey's journey and her fight against leukemia.

I will run for those who left this world far too soon and who's angel wings, I would like to believe, will carry me across the finish line. I run for Sol Merie, and Kai and Christopher. Our very special 4th floor buddies. Who's radiant smiles and courageous and forgiving spirits will dwell within my heart forever.

Sol Merie

Sweet Kai

Our love Christopher

I will run for Kristen and Lois, who sported an extra chromosome and who used the determination found in that extra DNA to fight, as long as they could, as hard as they could but their cure remained, unfairly, elusive.

Lois and above Lois, Angel Kristen

And for sweet Carly, who beat this disease, only to be taken, cruelly and unexpectedly, years later, because of heart issues.

Carly
I will be running for all of our 4th floor buddies who are in remission alongside Zoey. Fighters like none you have ever, ever seen. Fighters who taught me more about living than anything or anyone else in my 47 years. I run for Collin and Jayden and Justine and Emily and Christian and Ricca and Alex. I run for Emily and Ella, and Colleen, our sweet soul sisters on this remission road.

Emily

Ella Grace

I run for two incredibly special guys. I run for Klein, who has defied each and every number and percentage placed before him. Who's fight has taught us that children like these, are no match for statistics. And Klein, that boy, he had me at hello, he is just that amazing. And I run for Mikey. A darling 4 year old from our church and our town, who was diagnosed with the "good" type of leukemia, but taught us, once again,that there is and never will be, a good type of cancer. Ever. It all sucks. We send sweet Mikey to the BMT unit with love and prayers and strength for the journey.

Klein

Mikey

I run for this amazing and incredible blog community. Those mommies, who also have walked in the ugly shoes and still stepped forward, some fresh from their own walk, and stretched out their loving hearts and hands, having walked this road with their own beautiful children They showed me that, one way or another, we would find our way. I run for Chelsea and Kennedy.

Chelsea

These precious faces only represent a fraction of the children we were honored to meet on this journey. Some I never knew their names, just their faces, seen in the hallways, battling behind close doors. Doing what needed to get done. Because they had no choice.

But I do have a choice. And I choose to run.

Off my blogging game. In a big way.

2011-10-13T00:32:00.000-07:00

Seems like I just can't get in the groove of things. Here, in this blog space especially. I go to write and I am stuck and rewriting and scrapping things entirely. Now, in light of my friend Joany, and all that has happened to her precious family, once again, everything seems so insignificant and trivial. I was reminded, not more than 5 minutes ago, by a far away friend, who's email reached me at the very moment when I needed it most, that what I have to get back to, is my gratitude journaling. Because in moments like these, when I see such suffering, such extreme, unspeakable suffering, it is so absolutely difficult to see the beauty in the simple things. I really need to get back to jotting down those 3 daily, 21 weekly, things I am grateful for, or I might just get swallowed up whole by the rest of the crap. You know, lately I love that word crap. And " sucks" is another good one too. Although my older kids will tell you, that I never did let them use that word when they were young and that I use it, and that I use it often, cracks them up. And, another certain 4 letter word, when adding a 'ing suffix, can roll effortlessly off my tongue as well. In fact, string those three bad boys together and it sums up what I feel about some situations as of late. Shouldn't be too hard to plug in that third word, especially for those who know me well. Anyway, I figure since I am not feeling any one thing in particular, I will hit 3 high points for now.

First, we had yet another birthday in the house. Not a hard thing to have, with a family the size of ours. This time, Taylor Morgan is the birthday girl and on Sunday, she hit the 2-0. Ah, twenty, I remember it well. Well, sort of. But what I can remember, for sure, is that I did not have it together the way this girl of mine does. She is pretty amazing all around and once again I pause and try to figure out how that same girl of 20, that would be me, managed to raise such incredible, young women. Perplexing to say the least.Taylor is working tirelessly at Pepperdine in her junior year. Managing a full class schedule, as well as her job with Jump Start. Which she loves. She is a team leader. In charge of an entire group of her peers that teach at underprivileged preschools in LA. The experience she is garnering there will serve her well as she graduates and continues on to complete her masters in Special Education and then, as mandated by a few of her student loans, will go on to teach again, in underprivileged schools for I think, another 3 -4 years. Super proud of her. I don't think I tell her that enough though. Got to change that.

That look of Charlotte's ... classic Charlotte look. Feisty personality. Much like her Mimi's and her mothers!

Next up, a really magical day in Santa Monica at the Party at the Pacific Pier, hosted by Make A Wish and the tab, for the entire day, picked up by the generous beyond words, comedian Kevin James and his wife. Free rides and boardwalk games and yummy food and desserts. An incredible day, with reminders, every where I turned, of the world of pediatric cancer we were dropped into ,3 years ago this month. Faces of mighty cancer fighting warriors. Reminders everywhere I turned, of the special needs community we were dropped into 4 1/2 years ago. Reminders everywhere I turned, that despite all of the above, there are plenty of opportunities to soak up joy around me. There was one final part of the day. A mouth hanging open, end of the day gesture, by Kevin James and his wife, that I want to share, but can't just now. I will soon though. Promise. How is that for a tease? I will give you a hint: It does have a little something to do with Mission iPossible. Speaking of which, please make sure you go check us out over at Mission iPossible. Ken has been busy finishing up our iPosts and with all 20 iPads in the hands of all the recipients, we are almost done with Mission One. Which, makes it sound like there might be a Mission Two on the horizon, doesn't it? Well, you'll have keep up with us to find out for sure, and to learn what my teaser is about and finally, read two special final iPosts.

Some of the crew with Manny from "Modern Family" ... that show cracks us up like no other!

Sweet Ella Grace, another cancer fighter girl, and Zoey Grace kissing or swapping spit. Not quite sure which one.

Well, honestly, I have been back and forth on the computer trying to finish this up and at this hour, almost midnight, I think the 3rd item will have to wait. Besides, the more I think about it, it's a post that is better shared on it's own. So that is all, just a round of apologies to all my blog buddies, many of you in fact, who are doing such a stellar job in participating in 31 for 21. Which by the way, I have totally not participated in, so thank goodness for the rest of you! I also have been remiss in commenting to all my blog friends and for that I am sorry. My body and spirit have been pulled in many directions lately, and because of that, I seem to only accomplish so much on any given day. Hoping those who know me and love us, will understand.

"For some moments in life, there are no words." ~David Selzer

2011-10-09T17:21:00.000-07:00

A year and a half ago, my friend Joany lost her precious Carly. Unexpected and without warning. Devastating. Simply devastating. To Joany, to her husband Paul and to her sister Ashleigh and brother Brad. A family taken out at the knees and a family just barely now, trying to pick themselves up and inch their way back to navigating this life without Carly. And last night, unexpected and without warning, another unspeakable tragedy. Their son Brad, was killed in a house fire. A fire that not only took the life of their son, but left them without a home. Complete loss. Their son, their belongings and to add to the sheer cruelty of the situation, Carly's things. Their tangible memories of their precious girl.

I have so much I could say but why bother. None of it would be positive and none of it would be spiritual. At least right now. So it's best left. With no words. Because in the end are there really any? Any words, to bring any understanding to something of this magnitude. Nope, I really don't think there are. Perhaps there never will be.

Pablo's Love and Light Rides Again ...

2011-10-07T21:03:00.000-07:00

Our little buddy Pablo left this world just over 2 years ago, at the tender age of 6 years and 6 days. Too young and too soon. Far, far too soon for those who loved him so. Tomorrow, his Papa Jeff, rides again for Pablove Across America. For the 3rd year running, Jeff will ride for childhood cancer awareness. One pedal stroke at a time. He will ride for his beautiful boy Pablo. Please consider a donation to The Pablove Foundation, in honor of this ride. In honor of Pablo and in honor of all the children fighting the fight. The unfair, unrelenting, unforgiving fight, known as childhood cancer.

"Here's to the crazy ones, ..

2011-10-06T09:42:00.000-07:00

"Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes.
The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them.
About the only thing you can’t do is ignore them. Because they change things. They invent. They imagine. They heal. They explore. They create. They inspire. They push the human race forward.
Maybe they have to be crazy.
How else can you stare at an empty canvas and see a work of art? Or sit in silence and hear a song that’s never been written? Or gaze at a red planet and see a laboratory on wheels?
We make tools for these kinds of people.
While some see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do." ~Apple Inc.

”

All Around Blogland ...

2011-10-02T00:54:00.000-07:00

October is upon us. Makes me miss my Upstate New York upbringing. There is nothing like fall on the East Coast. Nothing. The leaves and their colors, are spectacular and will be peaking in their full beauty, anytime now. But their appearance and soon their disappearance, is a reminder of the long, cold winter that lies ahead. Something I do not miss. 25 years there was enough and my heart belongs to California now. But I digress.

October in Blogland, brings Down syndrome Awareness Month. Everywhere you turn this month, you are apt to find bloggers committed to posting 31 for 21. That is, 31 days of the month in October, to blog each day, about the magic of that extra 21st chromosome. The diehards will succeed. Beautifully in fact, but me, I am not even going to attempt. Not because I don't care and not because I am not up to the challenge, because anyone that knows me, knows, the bigger the challenge, the more likely I am to take it on. I am a tad bit competitive like that. In this case however, I just am at a point that I have to pick and choose where I spend my time. Time, on and time off, the computer. I am desperately trying to find the balance in this life of mine. Something has got to give and this, has got to be one.

Anyway, I will try and post a few things here and there throughout the month. And after all, since Zoey tends to monopolize this little space of mine here, and she does sport an extra little something, something in her DNA, she will often be my very own, easy to access, always super darling, spreading the love and awareness, post.

I won't try and tell you that my little love is no different than her typical peers. I know we like to say and maybe we actually would like to think, that our children are more alike than different. But for me and my child, she is different. And sometimes, she is more different, than she is alike. And that is not necessarily a bad thing. Different is underrated in my opinion. For me, I spent a great deal of my young life trying to be the same as my peers and it wasn't until I was much older, well into my adult life, that I said, screw being the same, I think different is much, much cooler.

Last week at Joe's soccer game, Zoey made her way over to a group of little girls who were coloring. She scooted over on her bottom, lickety split, and literally pushed her way into their little circle. They were very patient with her and that wasn't easy either, since Zoey tends to seek and destroy and usually proceeds to throw, most everything she gets her little hand on. We all looked over at her, amongst these girls who were just a bit older than her, at least twice her size and obviously leaps and bounds ahead of her developmentally and we saw all too clearly just how different she was. But mostly we saw how happy she was, plopped right down in between these girls and we saw just how little she cared that she was different. In fact, she had no idea. Zoey could have cared less. She just soaked up the moments without caring. And although those in your face moments, can hurt your heart, that day, just how different she was, didn't matter. Her precious smile and carefree spirit, made sure of that.

"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible." ~St. Francis of Assisi~

2011-09-28T15:15:00.000-07:00

Prepared to be bombarded. Ken and I, well honestly, mostly Ken, has a whole lot of work ahead of him catching you all up on the kids who have received their iPads. Although I know he never views it as work per se, because as we have said countless times before, we have personally been the recipients of such joy and satisfaction from this Mission, that this part, the introduction of these kids and their beautiful faces, is what it has always been about. This is the payoff.

We have a long list of recipients to introduce you to over the next week and beyond. As photos trickle in, Ken does his thing and whips up what appears to be an effortless post, but I know how important it is to him to do each story, each child, justice, so therefore I know it takes time. All the while he needs to work and still recover and spend time with his family. Not an easy juggling act. But he does it and as his partner on this journey, I continue to stand in awe with what he turns out and the love that is attached to each iPost.

So please take some time and read about iKenyon and make sure to come back and meet the remaining children and marvel in what has been done, all because this incredible community chose to turn the sad and unfathomable into a thing of beauty. The seemingly impossible into the possible.

Side note: Thanks for all the birthday love that was showered upon me. None of it went unnoticed. All of it was so very much appreciated. The day was simple and laid back. Just as I wanted it. I started the day off with a run before sunrise and was lucky to see the sun come up on my 47th birthday. As I ran, I reflected on my life today. I spent sometime praying for my parents who are not gone from this life, just gone from my life. I wondered if they woke and were filled with sadness and regret and I sent peace to them, if that were the case. I reflected on my life and thought of myself as a 20 year old and how this life today that I am living, surrounded by these truly incredible children of mine, is a life I never in my wildest dreams thought would be mine. I reflected on how extremely blessed and lucky I am. Extremely blessed and lucky.

iKenyon

It was SURREAL today watching the last two iPads go from my hands into the hands of Melissa, the usual Postal Carrier who has the route in our neighborhood.

I didn't know whether I should be happy or sad, or a combination of both. To be honest, I actually did not have the time to experience any emotions at all, I got robbed! I was right smack in the middle of a telephone call when Melissa came to the door and she was a little later than usual, so it took me by complete surprise. So there were no tears, no toothy grins...just a transfer. The surreal nature of it comes to me only when I reflect on the experience, when I play it back in my head, which I have been doing all afternoon, for some strange reason.

On the one hand, it is the beginning of the end of something. On the other, it is ONLY the beginning.

Um...what?

Don't mind me, the afternoon's dose of pain medication is just starting to kick in. Yeah...I am STILL on that stuff. Can you believe it? 4.5 weeks post surgery. And it still feels like there are a couple of burrs stuck to my uvula.

NICE.

But thankfully you don't have to listen to me TALK about kids receiving their iPads, you only have to READ about kids receiving their iPads. And the iPads they are a'flowin'.

Kenyon's mother, Jen, took some photos of her son Kenyon and had a few things to share about the experience.

'Sorry for the delay, and for the quality of these phone pics! Kenyon is really enjoying his iPad!'

'One of the biggest reasons for wanting an iPad for Kenyon was that it would be a bridge for him to the typical world of boys his age. He knows that boys like technology toys - and he is no different in that regard.'

'We have tried almost every handheld and game console out there - and it either moves too fast or requires complex hand coordination. Anyway, long story short - the iPad's large touch screen works for him! The iPad has apps on his level. Books that will read to him. Fun learning - in a typical way that he can manage and operate with very little assistance.'

'He's been saying over and over, "My very own iPad! Not the boys iPad!" meaning, he's got something special that his brothers don't!! :) Thanks to you, Mission iPossible, and the special needs community for building this bridge, giving him something of his own, that he can work on his own. He's in love!'

I think we are, too!

Hey Jen, sorry about the Bush thing, I know y'all are living in Texas and everything. I lived there for 4+ years myself and my good buddy Richard still resides there. I know...'Don't mess with Texas!'

THERE'S the toothy grin...

Send more pics in when you can, that goes for ALL the parents out there!

PEACE.

-Ken
On behalf of:

Mission Accomplished ...

2011-09-27T12:05:00.000-07:00

Yep, it's true. The rumors you heard, circulating on Facebook and such. 76 days. That is all it took to finish what we started, which felt like a long time ago, but really wasn't. 20 iPads funded. All but 2 delivered but those are being wrapped and getting ready to ship, as I type. Phenomenal. Amazing. Incredible. Humbling. I have so many words to describe the feelings I have and for some reason, they escape me at the moment. Too many emotions going on inside perhaps. I'll find the words at another time. So, as I have done so many other times in the last several months, I will turn it over to, and he will hate this, but I will turn it over to my pretty spectacular friend and partner Ken, and let him say it as only Ken does: beautifully.

Brief Change in Plan

Was going to kick off the iPosts today, but instead, I wanted to postpone that in light of the fact that, if you glance over to the number at your right above the little Thermometer widget, the $11,000.00 goal HAS BEEN ACHIEVED.

That means that in 76 days, from the time this site went live on July 12, this community came together to raise money for 20 kids to get their iPads.

That's amazing, when you think about it.

Stunning.

Miraculous.

I posted on our Facebook page last night and Heather posted about it on hers, and I know that she and I are both in agreement on this statement...no need and no desire to say anything about how amazing WE are. In fact, we prefer you did not. The fact is...YOU are amazing. The COMMUNITY is amazing. The WORK is amazing. The KIDS are amazing.

You should always remember that.

In fact, it is almost a tragedy that I have to address something so pedestrian in light of something so awesome, but I got word yesterday that someone was very uncomfortable with the idea that I used the phrase 'an anonymous helper' yesterday in my post. This person went so far as to compare me to a certain individual who ran a contest on a different website. Now, I could care less about the person who bitched about it, but if there is anyone else out there who might have issue with my choice of 'phrasology', let me be absolutely clear and totally frank.

Occassionally, there are going to be other people involved behind the scenes of this venture. And sometimes, those people are going to request to remain anonymous. Just as I would respect any of the Parent's requests not to give out their information, just as I respect the right of any donor who chooses NOT to be placed on the Supporters page, I also respect the right of any volunteer who wishes not to be called out by name.

One such person, who stepped in during my recovery from my tonsillectomy and helped me out in a HUGE way, asked me if I would keep the name private. And so I did. I don't apologize for that, nor will I. If that creeps you out or makes you think that this feels like the old MB thing? Well, then this is clearly not the place for you.

It was also suggested that I do this for praise and recognition. Particularly that my statement yesterday regarding how the money breaks down (and that some costs were eaten by us) was a plea of some kind to let you know...*sniff*...that money was coming out of my own pocket. The reason the money thing was even in there was because one of the parents asked me to address the monetary discrepancy since the numbers did not add up, so I wanted to offer disclosure on it.

Technically it BELONGS in the FAQ, but I admitted even in yesterday's post that I have been FAQ-slack and need to get that thing done. I copped to it being my bad, but I will get to it. But rather than keep the parent waiting on an answer, I felt it more important to give the parent an answer and do as requested...answer it publicly.

I was not hoping to have anyone break out the world's tiniest violin. I was just trying to explain the breakdown of costs. I even had a screen shot of our spreadsheet, but then I thought...well, that's probably TOO much disclosure.

I don't do this for accolades or awards. I do this because I have a 4-year old son who had a brain tumor, brain surgery, unexplained malformations in his brain tissue, catastrophic epilepsy, an autism spectrum disorder and who can't communicate and these Missions mean something to me very deeply and very personally. To be involved in something that helps to bring communication to kids who have a communication related disability is enriching to every aspect of my being.

And for other reasons too. Granted, being involved in an online community is a part of who I am. I have been involved in some kind for as long as I can remember. It used to be toys and collectibles. Now it is Special Needs families. It is just something that I do.

When I started my own business after leaving Palisades Toys, the last major toy company I worked for, the main goal of the new company, Creatus Maximus, was to get other people's ideas made into product, because I thought it sucked that so many people out there had so many great ideas and no means to get their stuff produced. It was all community-driven.

At Palisades itself, when Message Boards were the thing, and this was LONG before the social media craze, long before Facebook, I spent many hours on that site getting involved in that community, getting feedback from people who lived and breathed the licenses that we were making products of.

They would get involved in the design process, and in the production process. And in return I would get them a bunch of free toys and get their names on the back of the package. Would have paid them had our budgets been higher, but they were cool with what we worked out.

In fact, some of those people and I are still friends today, and read THIS site, if you can imagine that. Some of those people donated to this cause. They know me very, very well. Many of them I have had the pleasure of meeting in the 'real world'. They know what kinds of things motivate me.

Glory? Nope. Patton said it best...at least the film version did...all glory is fleeting.

But let's remember the best part of why this post is NOT an iPost today.

Mission One, at least the financial aspect of it, is A-FREAKIN-COMPLISHED! And, the two iPads are sitting right here. So they will be shipping today or tomorrow. I will do my best to get them out today, but I was not expecting the last $740 to drop in last night, so I have to scramble to get them packed up and out the door. I will do my very best to get them out though.

I can promise you that.

That doesn't mean the end though. We still have many an iPost to write, and lots of things to think about as far as how to set up our plans for what will be our Mission Two. And some other changes that will be taking place, all of which will be gone over in due time.

But for now?

If you feel compelled to do any back-patting? You go right on and pat...on each other. (KEEP IT CLEAN, PEOPLE!) All we did was facilitate this process. All we did was become a conduit for the generosity of a community that I could not be more proud to be a part of.

Enjoy the moment, because this is YOUR success.

You've earned it.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

PS - HAPPY BIRTHDAY HEATHER!!!!

"One cannot consent to creep when one has an impulse to soar." ~ Helen Keller

2011-09-23T23:32:00.000-07:00

Would you look at my girl? Caitlin took these yesterday. I think they are some of the most beautiful photographs we have of Zoey. They capture that indescribable spirit of hers. They, in my opinion, represent the quintessential Zoey.

I have studied each of these pictures at great length. Each tiny feature on her precious face. Her itty-bitty arms. Her auburn hair that has gotten so long and often over takes that tiny body of hers. I look and I see things others may not. Her hair for instance. There is seldom a day that goes by that I am not brushing it or stroking it, that I don't marvel in the fact that chemo never took it. Then there is her little left eye that is ever so slightly different than the right, due to her stroke. We tend to forget that her vision loss is mid line over in that eye, because she compensates so effortlessly in and around her world. In the laughing photo, I see her little "shark tooth" as I call it, tiny and pointy and I am reminded that she is missing the other one. I see her little left arm, that just "hangs out", as she kinda forgets it is there. What I mostly see, is a child who was never informed at her fragile beginning, that forces were at large that would have a lesser soul creeping through this life and instead, Zoey has taken all that has been thrust upon her and done oh so much more than soar.

I am taking some lessons from my girl this week. Just added 2 new inhalers to my already existing one. Trying to come up with a plan to recoup some of my 40% lost lung function. Had some allergy testing done and found out, after sticking me with 60 of the most common environmental allergens, that I am highly allergic to 58 of them. My arms didn't just react to them, they revolted.

I seldom talk about me here on the blog, especially health stuff, but I have to tell you, with my impending birthday, I am totally psyching myself out on the health front. The latest of course being the lung/untreated asthma thingy. Which kinda knocked me off my mental game for a day or two. But I have a few more little lovelies going on. Most which I have known for awhile now. Weird combination and very eclectic. Like: Meniere's, which is a nasty, nasty vertigo disorder, Lupus, which I have tested positive for the antibodies on several occassions and have, thankfully, some of the mild symptoms and I am rare on what I would consider flair ups, a low platelet disorder called ITP, 3 nifty little heart things: MVP with moderate regurgitation, a prolonged QT wave, especially when I am low on potassium which can happen often because I take or rather should be taking, a diuretic for my Meniere's, as well as a crap load of PVC's and I am not talking about the pipes.

Let's see, have I missed anything? Nope, I think that covers it. My point, because I do have one, is although growing old is a bitch on some days, and that mirror is certainly telling no lies, I am really trying, trying being the operative word, to grow old as gracefully as I can. Seems my body has other ideas. But for now I suppose, I will do as I have often done over the last 5 years, and I will follow Zoey's lead. I will refuse to creep through the last half of my life and instead, I will soar.

8th Blanket Delivery to Zoey's 4E Warrior Buddies ...

2011-09-19T17:08:00.000-07:00

First, can I just thank all of you amazing people out there that weighed in with your advice and wisdom and sometimes hilarious responses, to my last post. I could not believe each time I checked in, that there was yet another comment. Each were so thoughtful and inspiring, and beautiful and each was a reminder of why I blog and why I have come to love so many of you out there. Many, that I most likely will never meet in person but have connected on levels. that only people who blog, can understand. So thank you from the bottom of my humble heart.

So, yesterday I made the 8th delivery of blankets to 4E at Children's Hospital of Los Angeles. When I began Zoey's Heart Blanket Project 2 years ago, I hoped, to make 4 deliveries a year. I didn't know if I could or would accomplish it, and here we are, 2 years later and I did it. But I really can't say I. I have had incredible friends that have pitched in to help make or buy material. When I asked people to forgo buying Zoey birthday gifts and buy gift cards for fabric instead, people not only responded, but they responded with such unbelievable generosity. I have had many people within the blog community that have sent blankets and gift cards and attached themselves to yet another cause near and dear to me. And this cause is so near and dear to me. But it didn't exactly begin that way.

Don't get me wrong, from the very beginning, I enjoyed making the blankets. I loved delivering them and most of the time I never saw who received them, but that was not an important aspect of my giving. I didn't need to see the faces of the children fighting the fight behind those doors. I had seen it up close and personal for 8 months. I know what goes on in those rooms and I know the strength and courage that is needed to do what needs to get done. At one point I thought and probably voiced, " It's only blankets." But that all changed when we lost Christopher. Almost exactly a year and a half ago, Christopher left this world and not an hour after he lost his battle, I received a text form his mom, my beautiful friend Marissa, and she said that Christopher died wrapped in the blanket I made him and that blanket would forever remain precious to her. From that day on, my mindset changed. I make those blankets and I give them and I will never know what purpose they are to serve. It is not for me to know. And of course my heart wants to believe that each blanket will come to be a cherished item, for years to come, for some of these children, however, I now know, their purpose may perhaps be one that reaches far beyond the fabric they are made from.

I love that 4th floor and I hate that 4th floor. I know I am meant to do more on and for that floor but I have yet to find my purpose and my exact calling there. For now, it is the blankets. And yesterday, I had the honor and privilege of meeting 27 superheroes, face to face. I am blessed and forever better because of it. One day I will understand what more I am meant to do because of this journey I have traveled with my girl, but for today, this, this is enough.

Crossroads kind of suck ...

2011-09-15T21:37:00.000-07:00

crossroadsplural of cross·roads (Noun)

1. An intersection of two or more roads.

2. A point at which a crucial decision must be made that will have far-reaching consequences: "we stand again at a historic crossroads".

Seems like we are at such a place, a crossroads of sorts, with Miss Zoey. Seems like we have been at this juncture before. Many times before in fact, and for various reasons and some of those reasons, life and death choices. We are hardly new to this scenario but I have to tell you, we have grown weary of it. Tiring and taxing but I suspect, we should brace ourselves for these types of decisions, as I am certain, there will be innumerous decisions such as these, in the years to come.

So, it looks like Zoey's Physical Therapist, is having a difficult time writing goals for our girl and if you know anything about services for our children and continuing services for our children, when writing those goals, they, the therapists, need to justify them and our children, they need to make strides towards meeting them. No strides, equals no services. Which equals, no good. Zoey's therapist, has told me that she can no longer justify writing a goal for standing and walking for Zoey. Can you hear my heart breaking as I type that? Just ever so slightly breaking. Because it is. And when she told me that and told me that she didn't think Zoey was "cognitively" ready to walk, I cried and then I was pissed that I cried. But hearing that was tough. On my heart. Super tough on my usually super tough heart.

Zoey's therapist doesn't think she will walk. I can see it in her eyes. I can hear it in her voice when she dances around my questions. We stand at a crossroads and our decision, as her parents, will potentially have far reaching consequences. As it stands now, when we talk about her wheelchair, and I mention to her therapist that for a child who is a hemiplegic, to propel that thing forward, only to go in circles, is frustrating and I get back from said therapist, "well, it is her circle", well I really want to blurt out a litany of swear words. Which I did and do, when I repeat that story. I'll keep it G here for now. But seriously, how many people go about this world, going in circles? I guess I am suppose to be grateful that my child, as severely delayed in all areas that she is, at least goes in circles, right? Nope. Not going to be grateful. So it looks as if, to keep these services, we need to write the goal for Zoey to use a powerchair. Which mind you we have worked with. Which I must tell you, was not pretty and in many ways a bit sad for me. Watching her struggle. Again. Also, my stubborn and quite frankly lazy little Down syndrome girl, is definitely going to dig that powerchair if she does gets the hang of it. It won't require her to work and thus, in my eyes, I have just sealed the deal, to have my daughter, in a chair, for the rest of her life.

Studies say that a child with Cerebral Palsy, who is not walking by 5, stands very little chance of ever walking. Zoey is 4 1/2. And you should see my teeny-tiny, 23 pound child's, itty-bitty, spindly legs. How do we strengthen them? How will those legs ever support her body? She has zero balance and only protective reflexes on her right side. I get that my child had a major stroke. A Middle Cerebral Artery infarct that blew out half of the right hemisphere of her tiny brain. One look at her brain scan and I know what my child it up against. I have no idea in this world how walking will be mastered. I don't know why it is, but accepting that she will never walk is so difficult for me right now. I guess it is because I have surrendered to so much over the last almost 5 years with her and this, this is just another one. Surrendering seems a bit like giving up sometimes.

Caitlin and I were talking this afternoon after I read something about a child with Down syndrome who is a year younger than Zoey. An accomplishment that I rejoiced in for them but felt a smack of reality to me. Something that made me realize the gap is widening. The safe place of having a baby with multiple delays, a toddler, with multiple delays, is becoming a more and more difficult place to hide. The gap is widening and now, now I just need to find a way to not get swallowed alive by it.

iJaxson ...

2011-09-14T16:22:00.000-07:00

So we have been a little back logged at Mission iPossible, over the last few weeks, posting about all of our amazing recipients. Ken has been trying to get back into the groove of life after his tonsillectomy and that has proven a bit harder than he expected. Though I knew, as an adult, that surgery, was not going to be a walk in the park. But who wants to tell a guy "I told you so", when he is down and out. The truth be told, I think it is Ken that is hard on HIMSELF. I personally think he has done great on the road to recovery.

Anyway, we are back and rolling and if you head over you will see, that thanks to some amazing people and their trust and belief in us, we are nearly at our $11,000 dollar mark. Can you believe that? To think that we are almost at our goal, in such a short amount of time is totally crazy. And humbling. But we aren't quite there and we could still use your help, pushing us to our final goal. Give if you can give and if not, just keep sharing our Mission and sending all your good vibes our way.

Here is the sweet iJaxson. He happens to be Zoey's little boyfriend in Utah, but not for long, because we are the lucky ones that soon will have the beautiful Rugg family in our neck of the woods. Super excited. Would you look at the face. So precious and that face is the face of a mighty warrior child. I kid you not. Read all about him here and over at his mommy's blog. You won't be sorry you did. Promise.

iJaxson

The five iPads that started shipping out earlier in the week have started to arrive.

That's always nice to know. It's a good, warm feeling.

You need those, especially when you might be struggling. I know I have been of late, with Bennett. He's just not been himself lately. His behavior has been hard to understand. Some of his self-injurious stuff is back, stuff that we thought was gone. Not sure why.

A couple of weeks ago he had an emergency MRI, just to see if possibly his tumor was back, since there was odd swelling on the left side of his head. There was some thought that maybe that was the cause of the behavior changes and some of the learning regression he had been having.

As it turned out, the MRI was clean. Thank God, of course...and yet, you do pause as a parent and say 'OH...OK, so why, then?'

That is, unfortunately, a road that you walk when you are walking down the road of Multiple Disabilities, as many of our kids are. It's a winding road of unanswered questions or questions that might be answered with...more questions.

Very frustrating.

And it also can lead to making the receipt of something like an iPad a very different experience as well.

In Jaxson's case, every day is an adventure, a struggle, in all kinds of ways, and the iPad is something that you have to put into a certain perspective. I know that his Mom, Lacey, who writes Jaxson's Fight does. Her messages to me have always been very matter of fact, which is amazing to me in and of itself, as is her blog, considering the battles she, and her family, fight all the time.

In one of her notes, she summed it up better than I ever could.

'Sometimes its hard to concentrate on development with him, because we are just trying to keep him alive.'

If I have one regret in all of this...Mission, is that I do not get to actually deliver these devices in person, or meet these kids and these families in person. I think I could learn a lot about life, about people.

Certainly in Lacey's case, about perspective, humor, warmth and courage, all of which she has in great abundance. Because with a statement like the one I just gave you, and multiple hospital visits, you would think that there would be a bleakness about her. But no. She, very much like many others I have encountered in this journey, like the Strong family, are instead beacons of light where you might expect to be surrounded by darkness.

Because right AFTER that, Lacey wrote, 'But man his spirit is amazing, and he makes people cry when they meet him in person. Just ask Heather. :)' Which of course I did, and the stuff Heather told me about the little guy and his family were amazing.

On a side note, I should point out, and I checked first and got the OK, that this iPad was given courtesy of a single donor. Joyce, mother of the Sarah from My Name is Sarah, has an ongoing friendship with Lacey and donated the iPad to Jaxson specifically this time around.

Glad that the we were able to help facilitate the gift in some small way, and glad that Jaxson is finally home from this latest round in the hospital. That, of course, is the best gift of all.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

Fundraising for my marathon with Team Gwendolyn Strong Foundation

2011-09-12T17:04:00.000-07:00

Boy, I really hate asking others for anything. I wear my superwoman cape quite tightly around my neck and usually figure I can get done what needs to get done, all on my own. Well, I use to subscribe to that theory at least. And then came Zoey and I had to learn I couldn't do it alone and I needed help. In fact, people wanted to help. It made then feel like they were doing something, anything, when they were feeling so helpless amidst the craziness that had become our lives.

It has taken me awhile to fine tune the art of asking but, I am getting better. Little by little. I find that it is easiest when I have attached myself to something I feel passionately about. Something close to my heart. Something for others. And if children are involved, well, I am even bolder nowadays. But asking for money, that, that never gets easier. Most especially in these tough economic times. However, I must say, even during this dismal state of our economy, I have been so moved my the generosity of others. Mission iPossible, for one, is a perfect example. Blown away my the outreaching of hands and hearts and funding. As we near our 11,000 dollar goal, I am humbled and my faith has been more than restored, when it comes to the the goodness of mankind.

So today, looks like I am asking again. Not for me. But for her .....

And for them ...

Gwendolyn and her mom and dad, my dear sweet friends, Bill and Victoria, who I have come to love with all my heart. I come to ask you to consider making a tax deductible donation the Team Gwendolyn Strong as we run the Santa Barbara International Marathon, November 12, 2011, on behalf of the Gwendolyn Strong Foundation. The Gwendolyn Strong Foundation (GSF) seeks to raise awareness about and fund research for Spinal Muscular Atrophy (SMA), the leading genetic killer of young children, and support those impacted by SMA and other life-altering diseases.

Please visit my fundraising page for the Santa Barbara Marathon and please, if you are able, consider making your tax deductible donation. We have a goal, as a team, to raise $ 26,200 dollars. Each of us, on the team, hoping, that with the help of friends and even strangers, we can individually reach $1,000. So in the end, I suppose my growth in asking for help isn't all that earth shattering, as this asking is so not about me. This is about the Strong family. For all the families impacted by this disease. Most especially the precious, innocent children. You and I, together, we can make a difference. And, before you head over to my page, take a moment to watch this incredibly moving video. Thank you in advance for your support and for always accepting into your hearts, that which is so near and dear to mine.

"We can, in the midst of tragedy, find God."~ Deena Burnett wife of Thomas E. Burnett, Jr.,passenger on United Airlines Flight 93

2011-09-11T09:04:00.000-07:00

What I am reading these days: "The Boy in the Moon", Jake serenading Zoey and a blew me away Zoey moment ...

2011-09-09T17:11:00.000-07:00

A friend, an amazing friend really,who had a birthday celebration luncheon today, that I missed due to having no one to care for Miss Z , recommended this book. Not sure why I mentioned the lunch thing except that it does speak to life with a child like Zoey. Sure, we miss things all the time because of logistics with our typicals, but the complexities of our days, and our movement within those days, are so much more complicated when we have a child who is 100% dependant on someone else to take care of their every need. And missing today, mentioning missing today, is a good segue to this book, " The Boy in the Moon": A Father's Journey to Understanding His Extraordinary Son. In this book, Ian Brown, dad to Walker, intimately and honestly allows us a glimpse into what life is like, day to day, year in, year out, taking care of a severely disabled child. Something some of us don't need to actually glimpse, because we LIVE it. Each and everyday. We live it.

I have had to read this book in small doses. Super small doses. Leave it and come back to it. Highlight somethings and reread others. Some of it, painful. Truly to my core painful, to read. I think right off the bat, as he talked about his son Walker who has a rare disorder call CFC syndrome, I realized, as he talked about Walkers delays, and the quality of his life, the things he is not capable of and the things he is, and his battle in some moments, to fight feeling sorry for Walker for what he is not and what he will never be, I wondered, what would he think of Zoey? Because, as I read, I realized, Zoey, doesn't come close to being able to do some of the things what Walker does. Not even close. I often think, do people within my special needs community, other parents, look at Zoey with pity? Do they feel sorry for her? For me?

I read on and I cried as Ian talked about his marriage and the evolution of it. The acceptance of certain things, that in another time and in another life, he may not so readily accept. I read some things that I can say that I 1000% disagreed with and other things, that I could have very well written myself. Realizing in some moments, why it is that we can often meet another parent, traveling a parallel path, and connect at such levels, and with such understanding, that one would think we have known each other an entire lifetime. I realized as I read, that as Ian traveled the country, in a quest to meet other families with children with Walkers syndrome, that I would not even know where to begin in search of the likeness of Zoey. Yes, she has Down syndrome, a community I love with all my heart but within that community, she possesses very few similar qualities as her peers. She has Cerebral Palsy due to her stroke and had Infantile Spasms, that left unknown additional delays, she had leukemia, she has a feeding tube and well, the list goes on. I have attached my heart to each of those communities, with every fiber in me, but in the end, I do lack a profound sense of belonging.

I could go on and on, but instead I will leave you with a few highlighted passages that resonated with me in indescribable ways. Passages that I will certainly return to over the course of my life raising Zoey. In many of the passages I could easily interchange Zoey and Walkers name. Without pause and without hesitation.

From "The Boy in the Moon ":

"Because on his good days, Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human; a concentrator of joy;an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted."

"The Buddhists say that the way to enlightenment, to pure being, is by getting your mind out of the way. I'm not trying to be trite, but Walker, already knows how to do that. He is pure being. He may be developmentally delayed, or moderately retarded, but in that way, he is already miles ahead of most of us."

" The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest."

'Walker is an experiment in human life lived in the rare atmosphere of the continuous present. Very few can survive there."

"Because until twenty years ago, children this medically complex didn't exist. They didn't survive. Hightech medicine has created a new strain of beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level."

"The disabled are a challenge to everyone's established sense of order: they frighten us, if not with their faces then with their obvious need."

"The trick is to give up the idea of the potential child and accept the actual child."

So, as I was writing this, two beautiful things occurred. One being, the simplicity of the moment, as Jake strummed his guitar in the backyard to Zoey. What girl could possibly resist a cute boy playing Bon Jovi and Led Zeppelin? This little girls mommy certainly never could.

Anyway, nearly made me cry and the other thing, actually did make me cry a bit. The other, happened as I sat on the couch with my laptop, as Zoey was playing nearby on the floor. I watched her play with a diaper, unused, just in case you are wondering, and I lifted my head and saw her scooting her way to the kitchen, where she proceeded to open the cupboard where the garbage is, reach up and put that flipping diaper in the garbage.

Crazy and timely and seems like perhaps I should reread some of those quotes already, don't you think?

My Beautiful Boy Joe, is 8 ...

2011-09-08T13:20:00.000-07:00

Oh how I adore this child. My sweet little guy Joe, with his ever so complicated little mind , within his ever so growing up and getting older body. A child full of wit and wisdom, far, far beyond his years. Also encased within that perpetual motion of a body of his, is one of the kindest, sweetest, hearts you will ever, ever find.At 9:49 pm, Monday September 8,2003,Joseph Patrick Needham came blazing into our lives ...Happy birthday Joe- Joe.We all love you so.

A message and a call to listen ...

2011-09-03T17:02:00.000-07:00

So, this was me, almost exactly 30 years ago. Taken just a few weeks before I began my senior year of highschool.

And these, these were taken today, almost exactly 30 years later. Now, if you are a friend of mine or a family member, your mouth is most likely hanging wide open at this moment because, I do not do pictures. Ever. Infact, the last time, I most likely allowed a picture to be taken of me, just me, was probably for that senior picture. Today for some reason, I decided to change that. So Caitlin and I, on a whim, headed out to the backyard, and I painfully sat for a few photos. Growth for me. Huge growth.

Here I am, on the cusp of my 47th birthday and I find myself reflective and introspective. Which really don't happen to be bad things to be doing. I think everyone, no matter the age, should do it from time to time actually. I have a myriad of reasons to be doing my self evaluation of sorts, not just my upcoming birthday. And yesterday, yet another reason presented itself as I found something out on the health front, that took my breath away. Literally and with absolutely no pun intended.

As I mentioned earlier in the week, I have been struggling big time with my training for these marathons. My endurance has not been what it should be at this point, with how hard I have been training and for the last few weeks I have been trying to figure it out and tweek this and that. Suddenly, a light bulb went off and I began to piece together what might be going on. I have never, as much as I consider myself an athlete, had great endurance. I always blamed it on a long standing history of respiratory illnesses as a child. I have vivid memories as a child, of being woken up, to suck down some vile yellow cough syrup, to cease the all night coughing. As an adult, if there are colds and the flu going around, it hits my chest first and takes me forever to get over them. Doesn't help that I am stubborn like no other, and I seldom see a doctor. So this week an epiphany. I start to think that I might have exercise induced asthma. I happen to have 2 children that have had severe asthma and, in the past, when asked by their pediatrician, if there was any history of asthma in the family, I always replied nope. No other history of asthma. But now, now, I wasn't so sure.

So off to the specialist I go and sure enough, asthma. Lifelong more than likely. Exercise induced for sure. We proceed to do a lung function test and if you could have seen the doctors face when she returned with the results. She was shocked. Really shocked and that is not the look that you want to see on a specialists face. She said, by looking at me she would have bet I would have hit that sucker at over 100% lung function, but me, no, I like to do things a bit different. Much like that youngest child of mine. I score a 60%. A freaking 60% in over all lung function. Irreversible damage from lifelong,untreated asthma. That blew my mind. And hers. So we have a game plan and it has taken me 24 hours to process it all but I am handling it like I do most things, with humor most especially and with the knowledge that I will find my way. As I always do.

A dear and oh so wise friend, reminded me of a few things.Things I knew in my heart already but needed to hear anyway. A reminder that I was just given a gift in a message. A message that went something like this: At least my lungs are operating at 60 % and not 40 %. At least I have had an opportunity to run for 47 years. Many more than most. Especially my young fighter friends. My time may just be up for the long hauls, the marathons. I might need to listen to the quiet nudging of what I am perhaps being called to do otherwise. These marathons are being run on behalf of Leukemia and Lymphoma Society and The Gwendolyn Strong Foundation, both which are so near and dear to me. Maybe I am being called to be a part of those amazing organizations in other ways. And finally, at least I am here today. Living and breathing. A gift. Each day. Each breath. Each moment.

Message received. And I am listening.

September is Childhood Cancer Awareness Month ...

2011-09-01T09:51:00.000-07:00

Just some facts. And, can I please say that sometimes it feels beyond surreal that we, and especially my little love, are members of this unwelcomed and unasked for, admission into this club? But, here we are, and this month I will be posting things from time to time, but mostly I will be remembering all our little warrior buddies, that are no longer with us. For their journeys, their battles and the grace by which they lived their lives, have left indelible marks upon my heart and changed me forever. Some for the better and some, for the absolute worse.

Childhood Cancer Facts

Cancer claims the lives of more children each year than AIDS, asthma, cystic fibrosis and diabetes combined. It is the leading cause of death by disease in children and adolescents. ^
Each year in the United States, approximately 12,400 children and adolescents younger than 20 years of age are diagnosed with cancer. Approximately 2,300 children and adolescents die of cancer each year. ^
One out of every 300 males and one out of every 333 females in America will develop cancer before their 20th birthday. ^
Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region. ^
About one in 500 young adults is a childhood cancer survivor. Nearly 2/3 of the survivors later experience significant and chronic medical problems or develop secondary cancers as adults that result from the treatment of their original cancer.
In the past 30 years ONLY ONE new cancer drug has been approved for pediatric cancer.
The causes of most pediatric cancers remain a mystery and cannot be prevented.
Researchers estimate that 51% of moms and 40% of dads who have a child with cancer meet the criteria for “Acute Stress Disorder” within two weeks of the cancer diagnoses. ^^

Here is my fighter girl. In all her remission glory. This is the face of 2 years of remission. And not a day goes by that I am not acutely aware of how blessed we are. How blessed she is.

And everyday I am reminded of those we lost. Like precious Pablo.

Who stole my heart from day one. Who sported skull and crossbones apparel like no other, which I can never resist of course. A child who's beautiful spirit, lit up a room and who's voice, was that akin to a man. This deep, indescribable voice, that you didn't expect from a child of six.

6 years and 6 days, Pablo graced us with his presence in this world. Far, far too short. Wilms Tumor is the beasts name and today I ask you to pop over to Pablove Foundation and donate to Pablove Across America, where his Papa and some other amazing riders, will take on year 3 of peddling across this country to raise awareness for not only Wilms Tumor ,but all childhood cancers. We miss your love and light sweet P but it and you, will live within us always. For always.

Gratitude

2011-08-28T17:03:00.000-07:00

1. The rhythmic ticking of the mantle clock, the only sound to be heard in the house before daybreak.

2. Mom and big girl, dates in Santa Barbara.

3. Charlotte tugging at my leg, asking for "kuggles", which translates to snuggles. Is that not the best?

4. Clean, organized closets. I am a freak like that.

5. Little boys having the time of their lives with their dad in NY.

6. Continued remission for the girl wonder.

7. Grad school and a new job begin for my hardworking son-in-law.

8. Second semester of nursing school for my beautiful first born Jessica.

9. Daughters who shop and cook and clean up for their tired old mom. Caitlin, you are the best.

10. The animated movie "Tangled". I am so NOT a girly movie, girl. Give me a thriller/ drama anyday instead. But this cute movie, loved it. Darling little love story.

11. "Tarzan" soundtrack dancing with Charlie girl.

12. Mall window shopping with Zoey, who waved and blew kisses to one and all.

13. "Snapper Jack's" potato tacos ... so unbelievably good.

14. The website "Pinterest" I am addicted. And I am not joking. Don't get started and if you do, don't say that I didn't warn you.

15. Charlotte's squeals of delight when her daddy walks through the front door and Zoey who will sign, simultaneously,as the door opens' "dad", thinking it is her's, home from work as well. Never is but melts your hear to see how much she loves him.

16. Friends on the road to recovery from surgery.

17. "Skinny Cow" ice cream sandwiches. The low calorie count and the pure yumminess of them, have me eating 2 at a time. A problem? Perhaps.

18. Running .. despite a frustrating and a bit scary, development on the health front for me, stay tuned for update later in the week, I will keep this in mind and continue forward:

19. My pediatrician, who looks with wonder and awe at Zoey and sees the magic in her extra chromosome, each and everytime we cross the threshold of his office.MRSA might be back. In her eye again. We will wait for the culture but I am thinking it is. Bummer.

20. Clarity, wisdom and direction, when I needed it the most.

21. Visiting Taylor on a beautiful Saturday in Malibu, at her new apartment at Pepperdine.

This the ocean view outside Taylor's dorm. Poor girl.

"We are shaped by our thoughts; we become what we think. When the mind is pure, joy follows like a shadow that never leaves." ~ Buddha

2011-08-24T14:22:00.000-07:00

Still waving and smiling at the end of the day!

Preschool began today for the littlest love. Her smile tells the story and although she has begun to exhibit separation anxiety as of late, when I leave her to go to say the store or an errand, as noted by her big bubba lip and her constant babble of "mom-mom,mom-mom", none of that was seen today. Happy. Content. And a smile and wave for all who crossed her path. She is the the quintessential definition of pure, unbridled joy. I hate being away from her, but come on, how could I NOT share that ray of sunshine with the world?

Leaving on a jet plane ....

2011-08-20T23:27:00.000-07:00

This picture has nothing to do with the post but I just think she looks so darling. And as Caitlin says, it's always all about Zoey anyway!

Oh no, not actually scardy-cat flier me, but Mark and the boys. Bright and early and I do mean early, Sunday morning, they will be flying out to the East Coast. They will be visiting Niagara Falls and then heading to Mark's family cottage in Upstate New York, for a week long vacation before we sorrowfully bid farewell to summer. It is the last hurrah before school begins on the 31st.Which, as far as summer goes, evaporated before our very eyes. I am super excited for the boys and Mark to spend this guy time together and equally, if not more, excited for Mark's family, who is just beside themselves to be having them come for this visit. Miss Zoey and I will be hanging back, for a plethora of reasons, which I will delve into in a later post. As for the rest of the crew,well,they are just swamped with work and nursing school and grad school and a host of other obligations that just couldn't be missed. I will be posting updates on everyone in the next few days. Until then, please keep Mark, Jake and Joe in your prayers for safe travels and for me, an over protective, high anxiety filled momma, who frets like no other when her babies are not at my side.

College Bound ....

2011-08-18T11:21:00.000-07:00

How did it get so late so soon?
It's night before it's afternoon.
December is here before it's June.
My goodness how the time has flewn.
How did it get so late so soon?
~Dr. Seuss

It seems as if Taylor just returned home from her year abroad in Switzerland and here she is, off again. Ready to begin her junior year at Pepperdine. Where does the time go? I mean seriously. The pace at which life is moving, makes me yearn for a pause button sometimes.

But, this morning as I stood by Taylor's car and leaned in and kissed her goodbye, there were no tears. Yes, I will miss her. Her daily presence around the house and her sweet, sweet ways with the little ones, especially Zoey, and her love over flowing for the darling Charlotte. Time spent painting tiny nails and snuggling up in bed together. But this morning, I looked at my third born, and I realized, this is just as it should be. The wings spread and strong for the flight and the knowledge that the job I have worked tirelessly at, the raising of an independent, kind, compassionate, faith filled child, is nearly done. And although I know my parenting does not end here, I see clearly the shift. The change. And I am okay with that. In fact, excited and proud. For both of us.

In a funk, blogging and otherwise but this certainly lifts my spirits ...

2011-08-15T21:11:00.000-07:00

We posted about another iPad delivery over at Mission iPossible, and coming over the next few days, we will post a couple more. Including one especially near and dear to my heart, Jaxson. His mom posted over at their blog if you would like to see a preview. Until then, I introduce, iElizabeth.

iElizabeth

I was wondering if this particular iPad2 was EVER going to get into Elizabeth's hands! :)

But the good news is, she has terrific grandparents, and she was staying out there for a couple of weeks, and it was just a matter of timing that kept this particular mission from reaching its final stage of conclusion.

But when it did...according to Cyndy, Elizabeth's Mom, and her Aunt Kathleen, who has also been majorly involved in a lot of the behind the scenes communications, there has just been an enormous amount of WOW. And that is exactly the kind of word that I most often hear from the loved ones of any of the kids that pick up one of these machines and start using them.

WOW.

That video was sent to me by her Mom, and I asked her if I was allowed to post it. Earlier she had sent me some shots she had to take with her phone, that you will see below, in low light that I went back into and sort of painted on with some filters and brushes and asked how she felt about them.

She was cool with the changes I made since it enhanced the imagery, and when she sent along this video and the OK on the photos, she said this about the video, and I agree...'I think that it provides a genuine impression of just how MUCH Elizabeth LOVES her iPad'.

Kathleen also sent me a couple of photos as well, and some notes, the photos she took are at the top and bottom of this post. I was very taken with what she said about what she observed in the opening weekend with Lizzy and her iPad.

'Her favorite game so far is Word Bingo and she is counting and writing letters and spelling words! My sister spent half the afternoon with her mouth hanging open in awe...Once she learns to read (which I hope is soon with the iPad), the sky will be the limit.

BTW, she has perfect pitch (we already knew that) and she memorized the ABC song this afternoon using the ABC Song App after just 2 listens all the way through.'

To me? That is astounding. Simply astounding.

But I think the best of the notes that I got from either of the sisters was the first, the one right after they let me know that Elizabeth got the iPad, the one that first captured the essence of the moment.

This is the one that I'll always go back to whenever I think about this particular iPad and this particular kiddo.

'Elizabeth came home from her grandparents tonight, by the time I had helped her out of the van, and brought in a load of groceries, she had found the re-gift wrapped iPad, unwrapped it and was sitting on the couch playing with it. :-) So much for the photo op of unwrapping. :-)

She is navigating through the apps, viewing pictures, building a snowman (cause it's 80 degrees here and she wanted build a snowman for her big sister).

I'm amazed... for a child who cannot read from a book, due to visual impairment, she can search and locate apps without any difficulty. And, although her fine motor issues make it difficult for her to write she is easily drawing letters and spelling small words with the iWrite words app.

Thank you for this, our lives are forever changed, words cannot express our gratitude.'

I think words expressed it just fine.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

iSam ... Another iPad delivered

2011-08-09T13:26:00.000-07:00

I never tire of writing that as my post title. Hope you all, are not sick of seeing it either. By weeks end, we will have hit the half way mark of recipients receiving their iPads. Halfway. 10 out of the 20. In under a month. Mind blowing. Our continued thanks to the our incredible supporters. Both on the emotional and monetary side of it. Both equally important, as the emotionally support sustains us during the daunting days, and instills in us, the knowledge that what we are doing at Mission iPossible, is making a difference in peoples lives. Most significantly, children's lives. Because after all, if our journey here, as in on this Earth, is not to be of service to others, what is the journey actually all about? It is all about the connections we are making, the relationships we are forging and the kindness and goodness we are bestowing upon one another.

As for the monetary side of things. Definitely a necessary evil. Got to have it to reach the end goal. So again, asking everyone to spread the word, give if you can and we at Mission iPossible continued to be humbled by the generosity of all of you. Now onto iSam:

iSam

If you've ever had to live with a degenerative disc issue, or other kinds of chronic back pain, you know how much of a problem this can be.

It strikes without warning, like the Ninja, and never when you expect it. People always say to you 'Hey don't lift that, you'll hurt your back!' But you chuckle and know that you never hurt your back when you lift stuff, because you are READY for it. You get into the proper posture, you prepare yourself, you align our legs.

Back? Secure.

No, instead you throw out your discs when when you sneeze, or when you casually go to pick up a bar of soap in the shower, or when you round the corner of the downstairs hallway in JUST the wrong way.

Then ZING...that oh-too-familiar pain starts sizzling up your spinal column and into your arms and legs, and you know that you and it are going to need to make nice because the two of you will be playing cards, sipping drinks and doing all sort of intimate things together for at least a week. Maybe more.

So my pain had me up late last night, and I was still stressing very much over the iPad2 that we had sent out of the country, the one to cerealgirl007-Cereal World, the one that, according to FedEx, had not landed yet. We had sent two out, and one was accounted for, but this one? What was holding it up?

I went to my computer to check the FedEx tracking number again after midnight, but I checked my e-mail first. And when these photos started downloading, the pain melted away, as it always does during these...these amazing and wonderful moments. These moments that, every single time, make my eyes fill with tears of joy.

They are PRECIOUS, which is the exact word I used when I wrote to Sam's Mom to tell her I got the photos and how relieved I was that Sam's iPad2 had been received. I had earlier asked about using his first name, a request I have sent to all of the parents though not all have yet responded and one has (for personal and perfectly legitimate reasons) said no, and she said it was OK to change the Codename from cerealgirl007 - Cereal World to iSam.

She also had this to say about Sam and his first experiences with the iPad2, which had arrived already, even though FedEx had NOT updated their online number.

'He spent most of the day talking to Tom the cat, printing and drawing (Yay!) and making stories. I am absolutely astounded at how much effort he's put in to expressing himself - it seems to be just the tool we've needed..,. and I've only installed a few apps so far! Seeing how he's so much more attentive to his fine motor skills already, and is starting to take care to speak more clearly (yes, in just a few hours) I can't wait to see the changes that come as we start to use it more over time.'

Obviously the the artist side of me is thrilled to know about the drawing part, but what jumps out at me about what she wrote are two things...'in a matter of hours' and 'just the tool we've needed'. Both of these phrases I have heard, in some way or another, not just from the three parents who have written in, but from OTHER parents I have spoken to about their children using an iPad2 for communication and learning.

It's important to keep both of those things in mind as we move forward in this, because we'll be coming back to that again and again and again.

She thanked us obviously, and a lot, but I don't want to dwell on that by re-printing that, because I have to be honest with you, it is really not necessary. I'm not blowing smoke when I tell you that the expressions of gratitude are wonderful, and they are appreciated certainly, but those photos are like a glass of water to a person who has just stepped off the surface of the sun.

PRECIOUS. PERFECT. WONDERFUL.

And remember...we do have a Facebook page that holds the photos of this event, and I would love to add photos of Sam, Luke, Christopher and all the other iKids to it. New photos, as they grow, as they learn, and any thoughts you want to share as well.

These pictures, these moments, these experiences...are nourishment for the soul.

We should all dine together often!

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

Gratitude : Week number ???

2011-08-07T01:42:00.000-07:00

I am not actually sure what week this is. I was on such a roll and then just like that, one crap week and it threw my whole rhythm off. Which is exactly the opposite of what this little exercise in gratitude is suppose to accomplish. The point is, even and most especially, during those days, where you are grasping at straws to find what you are grateful for, you need to come up with something. Anything. Even if it means being grateful for finding a parking spot in an over crowded parking garage. But me, a few weeks back, I folded on a Wednesday and called the week done. But I am back and I am determined, that when another week comes like the last one, and you know it will come, I will push through it and get to my 21. Just gotta do it.

1. Long lunch dates with old an old friend. Picking up just where we left off.

2. Saturday morning hikes.

3. Crossing off things on the boys summer bucket list. Griffith Observatory.

Another cool place, situated atop a hill over looking Los Angeles. Joe once deemed it," Better than Disneyland"

4. Reconciliations

5.Listening to Joe play the piano.

6. Perspective

7. Another thing crossed of the bucket list. Getty Museum.

The boys love the Getty Museum. Totally into the museum thing. Not that they don't also love typical boy stuff: the expansive lawn there was beckoning them to roll down it's hill. Over and over.

8. Zoey's chair

Although we continue to get some interesting looks, semi pitiful/feel sorry for us/her looks, my favorite comment came from a little girl, who I over heard as we wheeled passed, exclaim to her daddy, "I want one of those!"

9. The power of forgiveness.

10. Gwendolyn

August is SMA Awareness Month. Please join me by swinging by Gwendolyn Strong Foundation and see how you can help spread the word. Together we can end SMA.

11. Platelet donation

12. Team In Training

13. County Fair

Jake is my daredevil. Which, if you knew my boys, it would seem that Joe would be the risk taker, but not true. Joe is whimpy, compared to Jake. This picture was Jake's sarcastic look of his fear of the ride before it began, but by a few minutes in, he was ghostly white. Even too much for him.

Would you look at the kid next to him? Cool as a cucumber and how, I have no idea.This ride went up and down and forwards and backwards. Insane.

14. Older daughters who not only shop for dinner, but prepare and serve, as well.

15. Yummy caramel apples, DeBrito Chocolate Factory. To die for delicious.

16. Friday Beach days. Have only missed one all summer long.

Jake was in the ocean for 3 hours straight. Never left it until it was time to go home. The boy loves the water.

17. Backyard camp outs. Again.

18. Fundraisers for courageous little fighting buddies. Keep strong and fight hard Mikey.

19. My aging body. Yep, even though it becomes abundantly clear, with each mile I run, that I am not as young as I use to be, as I train for these 2 half marathons, I am rallied by the causes for which I am running for: Leukemia/ Lymphoma and SMA. These diseases and the goal of cure are all the motivation I need.

20. Errands with my sidekick

21. Concerts in the Park.

iLuke. Another iPad delivered.

2011-08-01T15:36:00.000-07:00

Things continue to move forward at iPossible . Thrilled to see the pace at which things are going. Thrilled to see another precious child's face, as he received this incredible tool, that will open new doors, and hold amazing hope for the future.

Please, read below and meet little Luke. And please if you are able, I have seldom used this blog to ask others for anything, especially money, but if you are able, please consider making a donation to the cause. My sitemeter shows over 350 hits a day. If everyone, that visited me here, could spare, 5, 10, or even 20 dollars, what a huge dent we could make in this mission. We have another iPad on it's way, we are awaiting confirmation of its arrival. We have, another, set to go out, most likely today and even still, we are nearing the amount to purchase 3 more iPads. We are humbled by peoples generosity and we are convicted to this mission and our motivation continues to be, fulfilling our initial intent, to right something that went very wrong. Thank you for your continued love and support of us here. For loving my family and taking up causes that are near and dear to our hearts.

iLuke

'The first step towards getting somewhere is to decide that you are not going to stay where you are.'

-John Pierpont Morgan

As the saying goes, the first step is always the hardest.

I've never agreed with that completely.

I think the first step can be difficult, but the second is usually harder. The first step can, most of the time, be achieved in many circumstances through emotion, through adrenaline, or through sheer force of will and determination. Sometimes even by luck or circumstance.

As it pertains to the facilitation of the giving of an iPad2 for Christopher, that was achieved in one fell swoop by a single donor, and the entire process was well underway by the time that this site was even in its infancy. Even the next two? Mostly covered by the generosity of a single donation.

But I'm not talking about actual donations-to-iPads specifically, more about the actual Mission itself, and the setting of all of its wheels into motion. Its been a daunting, exhausting, stressful task and sometimes a little overwhelming. Taking that first step to make the decision to do this was easy, but all the steps afterward have each had their own unique challenges.

But when you see pictures of children like Luke Lundgren getting his iPad2, all you feel is joy. All you feel is relief and hope.

You smile and recognize that, in the end, any challenges that you have faced are so very minor in the face of the challenges that these children are confronted with every day, every moment, and those that they have yet to face...for the rest of their lives.

It is remarkably humbling, that much I can promise you. And even moreso to hear the sheer exuberance in the tone of Luke's mother, Kristi, when she e-mailed us mere HOURS after getting the iPad delivered:

'Luke is loving his iPad! With his cortical visual impairment, the interactive (lighted) screen has been wonderful. The bright colors and enlarged print allow him the best visual interaction possible. He adores the Touch and Say app. (highly recommend it!) He's been repeating the sounds he hears and singing along with parts of songs. It's a fun app! The other thing we're encouraged about are his fine motor skills. Before we got the iPad, Luke was just starting to figure out the use of his pointer finger. The iPad is really reinforcing this skill and teaching him better fine motor control. It's such a great device for a kid like Luke!'

I read that, and then started opening these photos that came into the Inbox.

I was speechless.

The irony of that statement, or even this Mission sometimes, is not lost on me.

Here, regarding communication-related disabilities, and an original contest for communication-based technology, specifically the Apple iPad2, where a lack of communication resulted in mistrust, doubt and ultimately action.

A community rattled by accusations, suppositions and secretive communication. And a person who struggles at times to manage his own communication effectively, representing a group who has made it their Mission to do what they can to fulfill promises broken, while sometimes struggling to communicate as effectively as they would like to with each other.

But then you see the wonder and the power and the potential in the eyes of a boy like Luke, and it is like a magical elixir, a healing agent, and when you drink from that cup it is like you have been filled by something so much more powerful and so much more significant than anything you have ever known and will ever know again and you are significantly and forever changed because of it.

And nothing else matters. Period.

But the greatest thing to take from the experience is the knowledge that these photos, even though they symbolize the completion of a 'Mission', an accomplishment of a goal, is to know that this is not an ending at all.

It is a beginning...a beginning for Luke, and for the Lundgrens, as they enter a whole new world of communicating with each other.

Together.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

Powerchair video and a quick beach video as well ....

2011-07-30T23:58:00.000-07:00

I haven't posted a video of Miss Zoey in forever. Not sure why that is but thought it was about time you saw her in action. So, I chose these ones of my girl, in two vastly different environments.Not by design, they just so happen to be the most recent. I watched and re-watched these 2 videos, and noticed that I watched them with slightly different attitudes and even emotions. I think that my facial expressions were probably different as well. I could feel that my brow was furrowed as I watched the power chair one.I could tell that I was watching with such intensity, as if I were looking for something specific in it and what it would be, I have no idea. I think the chair one, makes me a little sad. Just a little. Not sure why. It is not that I necessarily care that she is in a chair and that that chair may be her mode of transportation for quite a while to come, because actually, when we are out and about with her in her tiny chair, I only see the joy she has with her new vantage point to the world around her and how can I be sad about that.

Maybe I am sad because I see how hard she is going to have to work to understand how the chair works. Maybe I am sad because perhaps, I am unsure she will ever even understand the concept of how the chair works at all. Don't think poorly of me because I say that. Try to understand and maybe, if you have a child with special needs, maybe you will even relate to why I say that to some degree. Maybe my sadness comes from the fact that I just dislike therapy altogether and seeing her in that environment makes me want to scoop her up and take her to the beach. To the ocean. Where she is happy and carefree. Even on a cold and windy California day. I need to find the balance between the two. I know I have to. But honestly, on somedays, I just don't want to.

The love shines through, like the summer sunshine, and warms my soul ...

2011-07-26T22:24:00.000-07:00

He loves her so and she him.

And this child, is so patient and loving and cracks her up, with his silly antics.

Little buddies. Lifelong friends. Can't you just see it now?

The joy that surrounds me daily.

The Beauty of Friends...

2011-07-23T13:30:00.000-07:00

The most incredible things have transpired over the last few days over at Mission iPossible. I won't even try to being to tell you myself. Below my brief post here, is what was just posted over at iPossible, by Ken. I think he did an amazing, amazing job.

I stand in awe of the outreaching of hands and hearts by my friends the Strong Family. I love them and I love their foundation and most of all I love their child. Please take the time to read this and please continue to support not only us over at iPossible,if you are able, but the Gwendolyn Strong Foundation as well. Help them reach their dream of finding a cure for SMA. Together we can make a difference. Together, we will make a difference.

Grace to the Humble

Did you ever get so overjoyed about something, you tripped over yourself in your excitement while celebrating?

Happens all the time.

In the age of digital cameras, smart phones and the Internet you see all sorts of examples of it. From slips that reveal a bit too much skin, to NFL players falling on their keesters, no one is immune to the embarrassment of occasionally taking one to the chin when they are jumping up and down in celebration.

Not even us.

In Wednesday's post, I teased everybody to keep their weathered eyes on the horizon for some updates to our site for new pages to start making their way into the Mission. After that post went live, we received a bit of news, a bit of game changing news, that...well, changed our game.

That's why they call it GAME-CHANGING, 'natch!

And we were so blown away by it that we went into spiritual and emotional overdrive, and in our haste, we got a little lost. But not too badly. Did someone just say something about 'Rock' and 'Salvation'?

Some of the pages went live before they were supposed to, but nothing was shared that violated any of the promises we made, that much I assure you. The only thing that happened was that the sequential order of the Recipients went up before we'd had a chance to contact the parents personally, something we'd promised to do, and for that all we can do is apologize and ask to be forgiven.

Other things, like some of the Forms and such, were not ready to be posted, but that is small potatoes. We can fix those things and re-activate them with relative ease. What I want most is to just publicly acknowledge our responsibility, offer our apology, and to explain the reason why yesterday went a little wacky.

Because the intentions were honorable, and the news very good indeed.

It is with sincere humility and delight that I announce on behalf of our entire team that we have partnered with Bill, Victoria and their daughter Gwendolyn from The Gwendolyn Strong Foundation.

Gwendolyn Strong was born in October, 2007, perfectly healthy, but was diagnosed with the terminal disease Spinal Muscular Atrophy (SMA) Type I at 6-months-old.

Bill and Victoria, her parents, are obviously committed to raising awareness about and funding research for SMA and helping families who are torn apart by this horrible disease, but to understand the significance of their offer to help us in this cause is to understand something fundamentally beautiful about the human spirit that I think is forever forged out of being the parent of a child who is disabled.

And that is the unwavering, steadfast commitment we have to each other in our community. It is not necessary that we know each other. It is not an absolute that our children share the same condition.

When our children suffer, we suffer.

And this bonds us. Permanently.

They did not hesitate, for a nano-second, to reach out and extend their umbrella to service our cause; a cause that Bill himself had only good things to say about.

From a spiritual standpoint this is...monumentally nourishing.

But first, let me go over the practical side of things. (Yeah, yeah, I know...I gotta go spoil the moment...)

The Gwendolyn Strong Foundation is a straight-up, legitimate, well-respected 501 (c)(3), which now makes any donation to Mission: iPossible 100% tax deductible and 100% secure. There are no fees removed other than the usual Merchant Services credit card fees that most online transactions have (3-5%), so nearly ALL money received will go directly to service the needs of the children, without a per-transaction percentage fee like some non-profit partnership opportunities that there are out there.

But best of all?

We are restoring our faith and trust from within our own community, and since we were attacked from within our community, this is a major building block for the return of a measure of trust. With grace and with dignity, they help us wipe away ANY residual doubt that might be left behind in the wake of the disastrous giveaway that started this chain of events. There is no way we can possibly thank Bill, Victoria and their precious daughter Gwendolyn enough for this extraordinary gesture of Humanitarianism.

As you can see now, there is an active Donation button to the right on our page. This takes you to a page that is hosted and sponsored by the GSF, and it is live. If you click it, you are not obligated to make a donation by that act alone, so feel free to explore. Though, if you have the cash, don't hold back either! Because if you do, and some have, you will be issued a receipt that you can use with the IRS at tax time.

We have already secured the funds for another iPad thanks to the support of a couple of HEAVY-HITTING donors, and we are inches away from another, both of which we should be announcing officially next week, at which time I will also go over the Random Drawing we did and a few other dangling issues I want to cover.

And by then all of our ducks should be stacked up nice and neat, in a perfect row, quacking away.

Thank you Bill, Victoria & Gwendolyn, for opening doors we could never have opened ourselves. To our parents and Recipients, our readership and our friends, thank you for your understanding and all for your patience. And thank you, as always, to those both inside and outside of this community, for your support and participation in this effort.

PEACE.
-Ken

On behalf of:
Heather, Maureen, Darcy & Ken
Mission: iPossible

I introduce to you, our first Mission iPossible recipient ... iChrisopher

2011-07-19T09:38:00.000-07:00

iChristopher

As if you didn't already KNOW.

But a tease is a tease, and sometimes that's what you have to do, build up to something and then...WHAMMO. Reveal the surprise.

As a parent with a child who has a disability, and a lot of difficulty with communication, and as a parent who was a part of this contest, I can tell you with some confidence that I am sure all of us, this group that I like to call 'The Forty', has a story. And I know in my heart that every story is unique, beautiful, heart-breaking, uplifting, terrifying, wonderful, and special.

What made Stephanie and Christopher's story leap out at me, and I can only speak for me, was what happened to them when they thought they were receiving their iPad from the original contest site. They got a real 'whammy-jammy' laid upon them by the alignment of their circumstances and the original giveaway, as explained by Stephanie in the comments section of Love That Max, one of the many blogs that covered the carnage.

'In our case, this has affected some of my son's treatment plan! We travel 300 miles for therapy services. He was getting Augmentative Communication therapy @ Rehab Institute of Chicago. We had originally decided to order something like a Dynavox computer for Christopher ($4000 - $10,000 depending on accessories). Now that would have been covered by insurance and would have taken the entire year limit for DME purchases. About that time we found that we were awarded the iPad. Our therapists were thrilled, because it was more versatile than a straight communication device. We made weekly appointments throughout the summer.

Every week, we would have to show up empty handed. Every week, our therapists were getting more and more frustrated - we were taking up appointment times for people who actually HAD devices to use. After last week when we had been told the iPads were mailed, then they weren't etc., our therapists said come back when you have the tools for therapy.

We are now at the bottom of a two year waiting list. So, even if it were to show up tomorrow - my son misses out. Not to mention, now we have to make a decision whether to cancel the order for the stander and gait trainer that we ordered, or decide to get a communication device. I also have a bunch of therapists who think I am some liar, stringing them along.'

That really struck a chord in a lot of people, myself included, and I know it resonated with Kara, who we talked about yesterday. It was mentioned in Mo's original post about the purchase of the iPad, I just edited it for purposes of keeping the identity hidden.

Mo's quotation from one of the Prayers of St. Francis yesterday summed it up perfectly, and I never thought that I, a man, a Catholic man, who has been struggling with my Faith for 20 years, would so willingly embrace one of the Prayers so...effortlessly.

But how can I not? The Prayer of Saint Francis of Assisi (sometimes called the 'Peace Prayer' is actually quite beautiful, and as much as this may surprise you if you have been following me personally for two years, I'd like to share it with you here in its entirety. This is its English translation.

Lord, make me an instrument of Thy peace;
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is error, the truth;
Where there is doubt, the faith;
Where there is despair, hope;
Where there is darkness, light;
And where there is sadness, joy.

O Divine Master,
Grant that I may not so much seek
To be consoled, as to console;
To be understood, as to understand;
To be loved as to love.

For it is in giving that we receive;
It is in pardoning that we are pardoned;
And it is in dying that we are born to eternal life.

Does it get much better than that?

PEACE.

Mission iPossible, big and beautiful news ...

2011-07-18T12:37:00.000-07:00

Please follow me over to my other home away from home lately.We have begun to take back control of the train wreck that began nearly 2 weeks ago and I think we are off to a fabulous beginning of rebuilding trust in this amazing community we are a part of.I am surrounded by 3 other incredible human beings and if I may say so myself,we make one amazing team!

Gratitude: Week 3

2011-07-16T09:03:00.000-07:00

Boy,there were somedays,that I was reaching but somehow,still managed to pull off the 21...

1. The gift of Charlotte Claire.The brand ,spanking new 2 year old.

2. Steely Dan.At the Greek= excellent and very rare, date night.

3.Families who can put aside their differences,let go of hurts,if only for the day.Hopefully beyond.

4. The internet.Really.Who would have thought that would come from me?

5. Loyalty

6.Watching my child parent her child.Beautiful.

7.Wine and pizza with girlfriends.I know it is suppose to be beer and pizza but we decided to be a bit more classy.We pulled it off.Sort of.

8. Trust and generosity.

9. Watching boys devour Fosters Donuts.Complete with powdered sugar faces.

10. Yummy S'more cookies.

11.Summer bucket lists.Thanks Elizabeth for the inspiration.

12. Wise children who remind me that I still have so much to learn.

13.New friends.Great causes.Choosing to do good.

Mission iPossible

14. Tiny 4 year olds that love to snuggle and still fall asleep in someones arms.Every night.

15. Losing my eyelashes.Yep,grateful it is only due to an auto-immune disorder.Knowing each day,many are losing them because of cancer treatments.

16. Friday beach days.Even when you forget the camera.Even when the sun is not shining.Even with crabby boys and equally impatient mothers.

17. 12 year old fighter boys named Klein, who are defying the odds.

18. Husbands who work late and who go willingly, to the store for a much needed grocery run.

19. Hair straighteners.Best.Invention.Ever.

20. No need to travel the 405.Getting such a kick out of this "carmageddon" talk.And we wonder why people think we are crazy here in California.

21. HARRY POTTER. I might be slightly depressed now that it's all over.

"It does not do to dwell on dreams and forget to live."~that Dumbledore sure knew what he was talking about.

In a week filled with such negativity,I need to remember this:

2011-07-13T11:42:00.000-07:00

"People are often unreasonable, illogical, and self-centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.
You see, in the final analysis, it is between you and God.
It was never between you and them anyway."~Mother Teresa

This hangs framed in my kitchen.A place I spend an awful lot of time on most days.It was a gift from my daughters.I read it often.And even more so over the last week.I will continue to read it and absorb the words and live them.On some days I succeed more than others.But I try.And I will continue to do so.Despite circumstance or outside forces.And,in this latest chapter,I will continue to stay focused on what brought me to this day.My child and perhaps,over 35 others, just like her.

Mission iPad important info :

2011-07-12T15:57:00.000-07:00

From Ken

Emotional Control

It is only natural, in times like these, to let our emotions take over.

Everyone feels things on such an intense, focused level. Everyone. Especially the parents. I don't think I need to remind anyone that I was a former recipient in the Marissa's Bunny iPad Contest, and it is very easy to get swallowed up by current events. In case you had not seen those current events, they were, in summary, a statement by the contest host that the contest is officially closed and the iPads will not be forthcoming.

Ever since that time, my Inbox and Heather's has been in overdrive. Comments sections in blogs have been deluged. Facebook is on fire. Cats and dogs, living together...mass hysteria!

It has been suggested that some people on the recipient list are not who they claim to be, that entire identities are in question. A reasonable thing to be aware of. Please know that we ARE aware that identity verification is essential to any process, and one member of our team you will be meeting shortly has created some very cool forms that are simple and very easy to fill out that any recipient would ONLY have to complete when an iPad is ready to be delivered. This gal's GOOD. IN fact, here is a look at one of the forms right now. Cool huh?

But you won't need to complete it until WE are ready to ship an iPad to YOU. And not before. No need to ask for something until it is needed, capise? You all have been through enough of that.

Other steps will be taken as needed, but I also urge this...do not over-stress about this parents, recipients and other members of the community. We all need to keep a reasoned mind. Too many people have their torches out.

Is it OK to skeptical? Absolutely. But we cannot afford to be accusatory of anyone. It would not be the right thing to do and it would take us off the task at hand.

As it stands, after having posted the invitation to join the restoration process, our of 40 posted recipients, I have only received 15 responses to this request, though one I know if is still probably pending. This does not mean that the rest are 'not real'. I honestly think that many people have simply had enough. I can tell you this...I am exhausted from this. My wife hates me right now. This thing can take on a life of its own and I am convinced that a LOT of recipients probably have just said 'You know what...this shit SUCKS!!!' and moved on.

I'd be lying if thoughts like that had not crossed my mind about the entire Internet. That's what happens in your head when things like this happen. So you can't just jump instantly to any single conclusion.

I assure you, we will address this in the verification process section in the new blog site, so please do not stress over it. Ask yourself this...what IF someone who was not supposed to get an iPad got an iPad? As long as we succeed in our mission, then that does not matter. If that means we get 37 OTHER kids, or whatever the number turns out to be, their iPads, that's ALL that does matter. Cost of business. Plain and simple. In life, you cannot let the monster under the bed keep you from taking action.

We have to remember, as difficult as it is as parents (and remember, Heather and I were both former recipients too, we have an 'emotional' stake as well), to keep our emotions in check as much as possible and proceed with dignity and caution.

Things will unfold as they should. Have faith, in yourselves, in each other especially and the strength of this community, to stay strong and to stay focused on what matters the most.

OUT.

A message from one of my partners at Mission iPossible ...

2011-07-11T17:04:00.000-07:00

From Ken,over at Blogzilly,

Got a note this morning, or maybe yesterday...days are a bit blurry right now, regarding the Mission: iPossible! project that we have started. It was from one of the participants in the contest who won an iPad. No need to inform you of who that is at this time, not unless this person wishes it.

Anyway, the gist of the message was that the winner had informed the original contest hosts that they no longer wanted to be in consideration for the iPad, and as a courtesy also wanted to inform me of the same. Although the winner was appreciative of what I announced and had some very nice things to say, the reason given was that one had already been purchased and so, therefore, no iPad was needed.

I haven't asked yet, but if I receive permission when I finally get the Mission: iPossible! blog up (which will act as our main website for the time being) and create the Winners Page so that I can have a checklist once winners receive their iPads, I'll list the winner there and have them as 'checked off'.

So, this got me to thinking...I made a, let's call it a somewhat arrogant presumption, that I need to apologize for. I presumed, wrongly, that the people on the winners list of the original contest would simply come on over, no muss no fuss, and be a willing participant in this project.

That was a fairly stupid conclusion to jump to, I wasn't really thinking. I'm sorry about that.

It is still, as you can see in various comments sections (not HERE of course, people don't leave 60 comments HERE) a fairly divisive issue.

I understand that, I really do, and I respect it completely.

So I need to 'put out the call' so to speak. If you were a winner of the original iPad contest, and you wish to be considered in this restoration project, please e-mail me at klilly@creatusmaximus.com so that I can add your name to our list.

Please put Mission: iPossible! iPad Project into the Subject line, and include your Name and contact information in the e-mail, along with any other information you think I need to know. Any good jokes are also welcome. I love a good laugh.

This list will remain private until I receive clearance from the participants in written form to post it publicly. I am simply trying to get a 'head-count' so to speak, since it will help when trying to calculate an end-goal. Hopefully you all can understand how important that is to actually working out all the necessary details to achieve that goal. Need to raise some capital!

Does that clarify things a bit? Hope so. I'm looking at a couple of days before I get the basic site structure of M:iP! up and running. I know...it doesn't take THAT long to create a blog from a template. But we do have other things to consider and some details to finalize.

And OH YEAH...I almost forgot...the tease part. Our little group has already secured its first iPad, via donation, and a couple other interesting things, and that means one recipient, as soon as we know who actually wants to BE a recipient, could be selected as early as tomorrow.

It is our intention to, hopefully, be able to announce that recipient, with photos and everything, as soon as the MiP! blog goes live in a couple of days!

How do ya like DEM...um...Apples?

You don't KNOW how long I've been waiting to say that. OK, just one day, but it felt like forever. :P

OUT.

Here we go people....Mission iPossible ...

2011-07-10T13:19:00.000-07:00

From my friend, and bretheren on this journey,Ken ...

On May 13th, in the digital pages of this very blog, I announced that I was the winner of an iPad in a contest hosted by a website known as Marissa’s Bunny. I was one of 40 other families, selected in a merit-based contest, to receive an iPad, $500 worth of free software and, if memory serves correctly, I think there was also a gift certificate to an Apple store for $70.00 that could be used for hardware, like a case for protection and so forth.

I say ‘if memory serves’, because the contest ended several months ago.

To date no one, to my knowledge, has received an iPad.

To be absolutely clear, I can only say with 100% certainty that I have not. No one that I have been in contact with on the winners list has said they have received one. None of the winners who have blogs have stepped forward to announce that they have received theirs on their blogs, and the other winners on the list, who do not have public blogs, I do not know how to reach out to.

If you follow the blog that originally hosted the contest, you will see mention of various delays in the shipment of the iPads, you will also see, now, the site has gone through some fairly major changes and the iPad contest overall has been suspended.

This is a very difficult thing to write about, let me assure you. It is very easy...VERY easy, to get sucked into a lot of negativity, suspicion and outright emotional chaos when situations like these present themselves. Many bloggers have been receiving e-mails from winners searching for answers, I have received them as well, and it can be hard to navigate waters that are as uncharted as these.

Many bloggers have already started posting about it. Some, unfortunately, in the structure of what they have written, are dangerously close to libel. I urge every blogger who writes a single word to be very, very careful about what you say about a person and how you say it. I am sure nobody wants to get entangled in anything that could cause you any kind of problem in the future.

I do understand that in times like these, questions bounce around like pinballs, you get a lot, and you feel the need to answer them. I get them myself. Is it true what that e-mail said about Mike, Ken? Do you think that the iPads are really going to ship, Ken? What should I do, Ken? Is this whole thing a scam, Ken?

The plain truth is this...when something like this happens; there is no easy answer to ANY question. At least, not one that anyone can give you that can be given with authority, certainty and fairness.

But the Internet is a large place, full of information. You do not need me, or anyone else, to tell you what or how to think. You don't need me or anybody else in order to draw your own conclusion about whether you think you will or will not be receiving an iPad. You need to do your own due diligence and research and come to your own conclusions.

Information is out there, you just have to go looking for it.

Hell, for shits and giggles, look up my name. If you type in Ken Lilly, or Ken Lilly Palisades, or Ken Lilly Blogzilly, or whatever, you will find a bucketload of information about me and all the stuff I’ve worked on, interviews I’ve done, toys I’ve designed. But please don't search for Ken Lilly Naked Dress Bachelor Party Emergency Room Gerbils. There's just no NEED.

My point here is this.

I am not here to smear anyone. I am not here to tell you whether I think Marrisa’s Bunny was on the up and up, or whether this was just something that got out of hand. I am not here to tell you what to think. Or how to feel.

It is not my place. Nor my responsibility.

I can only tell you what I think about how our community should behave, and what I, as an individual, plan to do. I can also share with you my experiences with this contest, as I was an active participant in the process.

It is my intention to proceed by this assumption, and that is that the iPads from the contest are not going to be forthcoming. And honestly, even if one showed up now, even though I believe it never will, especially in light of the latest statement from the website that any parent winner that has any involvement in the 'threats' is off the winners list, I would mark Return to Sender and give it back to the carrier.

I do not desire it.

That is not to say I have previously been involved in any of the suggested perceived 'threats'. But I fear that this post will be taken as such, even though I have said time and again that I do not have all the answers and that I urge you to reserve judgment and form your own conclusions. I am hopeful that this post is not viewed that way, but I am also a realistic man.

As realistic as I have been about this contest, as it has felt strange for a long, long time.

It has been stated on the website that the contest has been suspended indefinitely for reasons that do not, to me, make any rational sense. But a lot about the contest doesn't make sense and hasn't from the very beginning, in my opinion.

There is no timetable. And there never was. It has already been months. The contest never had a verification process that I had to fill out. I never had to sign a thing. I never had to send in paperwork to prove I had a Special Needs child.

Then $500 in software was added in later, instead of a handful of new iPads for Special Needs families. To me, and again, this is just my opinion, this was a bit weird. It didn't really pass my own sniff test, but again, who am I to argue someone's generosity? I just felt like even questioning it made me feel like a complete asshole. But I kept thinking that it would make much more sense to, if you are donating something, to donate a few more iPads to cover more kids, not $500 in Apps for EACH winner.

While generous and of course I was EXTREMELY gracious and grateful in my communications (which I would be more than happy to share if I was asked to, BTW), this was just odd, since apps are usually free or $.99 - $1.99 and that served to delay the iPad shipments even longer as families struggled to fill an Apps list, with some people finally giving up and saying 'We can't THINK of any more Apps, just keep the rest of the money!'.

As far as the shipment of the iPads, we had been told iPads had shipped several different times, in quantities whose numbers kept changing, then told they did not. I was told that mine had DEFINITIVELY shipped. Later told it had not. Again later we were told that 25 people absolutely, positively had their iPads shipped, and that UPS picked them up. Then told that UPS had screwed it up. Later still came the message that 'Everything has shipped.'

Still, as of today, July 9, no winners have stepped forward that I know of.

Of course, the question always remained about the corporation...I kept wondering to myself...why would a corporation that was so magnanimous, so willing to give of itself to families of Special Needs children, NOT want to take credit for that publicly? The answer to that question was always that the company did not want other groups coming to them hitting them up for more charity. I've never heard of any company, EVER, that afraid of confrontation in my entire life.

I have also never, not once in my entire life, seen a company not take advantage of that level of giving from a PR perspective, especially when you are talking about this kind of expense and this particular community. ESPECIALLY in this particular climate when, nationwide, special needs kids are getting CREAMED by state governments and their revisions to their benefits. What BETTER time to become a savior to a community that is currently being slammed to the canvas?

And the corporation would not be WRONG to do this. To me, remaining anonymous does not grant them some higher moral standing. It is natural, it is normal, it is expected that they would do so in the corporate world, and I doubt there are many rational thinking Special Needs Mom's and Dad's out there that would begrudge that. I certainly would not.

But in this case, they did not want any attention whatsoever. You know how I feel about 'corporations', so I have to be sure I don't let my personal anti-establishment feelings cloud my perceptions here. But why WOULDN'T they want the publicity? Could it be because despite their massive success they couldn't find one person among them capable of shipping a single pre-packaged, already-ready to ship iPad out of 40 while I, out of my house, can ship over 287 INDIVIDUALLY sold loose Star Wars figures in a single day (my personal best record on eBay ever, 'natch) and regularly ships items from all three major carriers out of my house each week with no help whatsoever?

How does a corporation with this much power, this much money and this much generosity screw something up this badly?

There are just too many inconsistencies in the information I have received over the last couple of months via website and e-mail, and so much continued and, in my opinion, deliberate vagueness. And do I ever mean 'continued'...(on blogger's comments sections), because even as of this afternoon as I finish writing this, it is ongoing on Ellen's blog.

All of this, in combination, has helped guide me to the conclusion that from this point forward, I no longer have faith in anything regarding this contest, and I no longer WANT to care about it.

It is not relevant to me anymore.

And I will say this...I am still reserving FINAL judgment that this may have nothing at all to do with Mike until all of the facts are in. It could still very well be the company he works for, or some third party, or the 'mysterious person who was fired'. And that's why I am trying to make sure everyone understands...this is a commentary about a CONTEST.

Not a MAN.

This is based on MY belief, MY researched opinion.

It is still going to be up to you to draw your own conclusions.

But I assure you, that every step I take from here forward will be based on my belief. What else is a person left with other than that?

That is not to say that nothing is being ‘done’ about looking into the matter or that I just wash my hands and turn my back. I do not want you to think that not answering questions or being elusive with questions I have received does not suggest inaction. But please, I am asking you, as a matter of trust, which I know is extremely, EXTREMELY, hard for you to do at the moment, to have faith that the correct and just steps are being taken to look into this contest that are 100% legal and 100% above board and 100% fair to all parties and are not threatening any harm to anyone, especially Mike's family, as he has stated.

If you are a reader of my blog, you know I am an open book.

Some would say too open. I have always disagreed with that. I always hoped one day that this...tendency of mine would serve a greater purpose. Please allow it to serve me now. Trust that what I am telling you has merit, and then let this part of it go. Do not let this become something ugly, something that tarnishes our community.

It's inevitable and I cannot stop this, but already I can see on various blogs and comments sections battle lines being drawn and sides being 'chosen', and that is a disturbing prospect.

But if you can, before you suit up and grab a weapon, let things run their course.

Be dignified.

There is a real danger here. A danger of getting swallowed up by the negativity, the darkness, which this entire situation could possibly generate. Therefore, a different response, a different approach, is absolutely required. It is extremely important; no it is paramount to remember that, in the end, this is only about one thing and one thing alone. There is only one 'side' you need to choose.

Our kids.

Nothing else matters.

For the past few days, via telephone, I have been speaking at length with Heather, who writes Little Wonders about her daughter Zoey and the rest of her beautiful family. And direct from the Credit Where Credit is Due Department, this is 100% her idea, I am just the one writing this statement because...well...verbosity and me? We get along.

But it is our intention, along with some friends of hers and possibly others who might wish to participate voluntarily, to make the attempt to finish what has been started that both of us think will not be completed.

Our mission?

We are going to make every effort possible to get these children their iPads. And I don’t mean the contest iPads. I’m talking about this from an entirely different angle, because like I said, as far as I am concerned, those iPads don't exist, because the website says they are not going to ship until this is sorted out, and I do not see that happening.

Now, should I be wrong in this assumption that they are not coming and should the contest iPads show up to the other 38 people at the same time that we hope to be successful in our restoration efforts? So be it, the kids will have two iPads and they can sell one of them, give them away, whatever they please. The iPads will be theirs to do with as they choose

But that is irrelevant to me at the moment, because all that matters to me, to us, from this point forward is restoring some kind of balance, remaining positive, and staying focused on what matters most.

And that’s exactly what we hope to do.

We are, currently, smack dab in the middle of figuring out various ways of exactly how to accomplish this task, which we are calling Mission iPossible!, and as we know more you will know more.

I can tell you that it would take months to establish our own Non-Profit Organization as a 501(c)(3) through the IRS. We do not want to wait months, so we are looking into alternatives. Possibly piggy-backing with an existing 501(c)(3) organization, something like that.

Why do I bring this up? Trust. Because if it comes down to some kind of fund-raising campaign, a 501(c)(3) will provide you with a legitimate tax deduction for larger donations and a record of its existence will be reviewable through the IRS and also through GuideStar, THE source for verification of legitimacy for non-profits. If you want to know if you can trust it? They are the place to check it out.

BUT...other avenues are being explored first, asking for money from this community? That is a LAST step. Not the first. But each step we DO take will be done with full transparency, full disclosure, at every single stop along this road.

As part of that, it should be noted up front that because Heather and I were both contest winners originally, and because we are now both a part of this mission, it is essential that the two of us now, as of this moment, officially remove ourselves as iPad recipients in this restoration effort. It would be a conflict of interest for us to remain as such and also be involved in the process of trying to raise funds or find some other means of procuring iPads for these disabled children.

Like I said.

Full transparency. Full disclosure.

We are going to need to do a lot of things like this on the journey, like the creation of a verification process for the winners, since in the original contest no such process existed, and so on. And like any project, it is very possible that we may fail, but I prefer not to consider that as an option and to remember the old adage of nothing ventured, nothing gained.

Besides, no one ever got anywhere without trying. We certainly, if nothing else at the moment, have a great deal of determination to get us going. It may take some time, but as you know, the clean-up after any disaster is usually a time consuming process.

You should also know that the best way to get through it, the ONLY way, is to put the disastrous event behind you, and move forward.

So that’s what we’re going to do.

Preface of things to come ....

2011-07-10T10:54:00.000-07:00

"Do not believe in anything simply because you have heard it. Do not believe in anything simply because it is spoken and rumored by many. Do not believe in anything simply because it is found written in your religious books. Do not believe in anything merely on the authority of your teachers and elders. Do not believe in traditions because they have been handed down for many generations. But after observation and analysis, when you find that anything agrees with reason and is conducive to the good and benefit of one and all, then accept it and live up to it. " ~Buddha

Gratitude found . Week number two. And boy has it been an interesting one ...

2011-07-09T15:40:00.000-07:00

Despite a difficult week,I managed to sit down each day this week and pen my 3 things of gratitude.Some days were easier than others.And on the difficult days,I dug a little deeper and somehow I was able to pull that gratitude as I navigated moments and in some case days, of sadness, discouragement and utter disbelief.

1. A selfless best friend who has always walked alongside me to help others.Most especially during their time of need.

2.Mark,Mark enters his 49th year.

3.Weddings."Momma Lindsay" marries the handsome Chris and dances to "My Wish" with Miss Z,just as she would do in the NICU.I love her beyond measure for loving my girl when I could not be there.

4. Freedom

5.Wedding cake mishaps = understanding,comforting friends and knowing our gift of perspective allowed us to laugh through our tears.

6.My older girls. My sounding boards.My right hand ladies.My friends.

7.Sunny California skies that helped push away some of the sorrow of the day.Fly high sweet Cecilia.

8.Another birthday celebration.Happy 25th Matt.

9.Hallelujah cake..Enough said.

10.Friends and comrades that take up the cause.

11.Lazy jammie days.

12.Fans in absence of air conditioning ... oh-vey!

13.Wheelchairs and words like "fish".

Signing "sit".

14.The inherent goodness of mankind will shine through despite dark clouds.I will say that and repeat and repeat again and again.

15.A beautiful,amazing,exceptional, 21 year old young lady,who happens to be sporting an extra chromosome,who reminds me of the magic that lies within that triplication.

16.Baby powder.The magic sand remover.Go ahead.Try it next time you are at the beach before you pile into he car or have a toddler with a face full of it.Then come back and thank me,or rather thank my friend Seana.

17.Glorious baby news from a sweet and brave friend from across the pond.We are full of faith.We are full of hope.

18.Crushcakes cupcakes,followed by a Coffee Bean chaser.The quick fix for what ails you.

19.Beautiful soon to be 2 year olds.

20. Renee's coleslaw.I am so not steering you wrong.

21. A husband who worked till 3 am so he could avoid working the weekend

Disturbing stuff in blogland ....

2011-07-06T22:05:00.000-07:00

I have been absent on blogs,commenting and otherwise and if I haven't been by to check on you and your little darlings,I am sorry but there has been good reason.Mainly and most importantly,the planning and attending the farewell for our precious little friend Cecilia. What a hard week it has been.Yes for me and my family but first and foremost for hers.My heart is so heavy.Once again.

As for blogland.I cannot talk about it today but trust me,in the next few days I will and it,it will blow your mind and not in a good way.More to follow ...

Gratitude Journal ...

2011-07-02T09:09:00.000-07:00

I follow this really beautiful blog and I have been inspired by her weekly post of gratitude.I have been saying for the longest time that I was going to follow suit and quite frankly, I just haven't taken the time.No more excuses.So what Cole does and what I have begun,is to write down daily, three things you are grateful for.Sounds easy,right?Not so much on somedays but this little exercise forces you to pause and take notice of even the smallest of things and claim them with gratitude.Thanks for the inspiration my cyber friend.

1. Long,crazy,insane hours but a husband with a job.
2.The sweet sound of Charlotte's voice calling for Mimi.

3.Ping pong playtime in the foyer with Pop/Daddy.
4.Continued seizure freedom for the girl wonder.

5.My "5th daughter" Amanda walking away unscathed,at least physically, after her car flipped twice and is totaled.
6.Yummy wine from Cambria.
7.Zoey adds "done" to her verbal language at the appropriate times.Especially while on the potty.My favorite.
8.Love and light of sweet Pablo.
9.Late night runs.Not safe but certainly therapeutic.
10.A pediatrician who truly loves my children.
11.Testing power wheelchairs that allow Zoey to catch a glimpse of independence.
12.Giggly, goofy Charlotte.
13.Older girls who still like hanging with their mom.
14.Little boys who live loud and carefree.

15.Precious Cecilia who couldn't stay and who will be missed deeply.
16.Baker friends who can pull off a wedding cake with 2 days notice.
17.Old faithful:grande nonfat hot chocolate with whip.
18.Plum baby food that Zoey devours.
19.Sun,sand and ocean air every Friday.

20.Blanket fairies who send their wares from Illinois for Zoey's cancer warrior buddies.
21.Almost 8 year old boys who still crawl into bed and snuggle.

Neurology appointment and a busy week filled with joy and some heavy hearted sorrow ...

2011-06-30T23:34:00.000-07:00

Something about these pictures made me smile and brought me peace when I looked at them.Maybe a reminder of how lucky I am.How lucky she is.I needed that reminder tonight.

Monday we headed to UCLA for Zoey's 6 month neurology appointment.Dr.Shields is supposedly retired,but not really,from what I could tell.Still seeing patients and for that,we are grateful.He has been a Godsend to us.To Zoey.We chatted a bit and finally circled to what I knew we would,which was the topic of weaning her off her medication.I knew it was coming but the thought of it makes me a little nauseous,I must say.As he sees it,we have a 50/50 chance here.Upon explanation of this percentage,it is as simple and as complicated as this:We take her off and it is split down the middle whether her seizures will or will not return.Crap shoot really.What he is fairly certain of though,is that at this point we would not see Infantile Spasms,which is what she originally started with but rather Tonic seizures,which is what we last saw.So,after a brief discussion we have decided to stay put once again.In all honesty,I cannot ever imagine taking her off.That percentage will never change either,so,end result, status quo for another 6 months as he didn't actually feel strongly one way or another and he left it up to me.He did tell me an interesting tid bit of information however, about a study he did way back when, with Vigabatrin.At that time there was an agreement made by him and his partner in the study and the pharmaceutical company and if I understood it properly,10% of the sales from Vigabatrin goes directly to the Eplilepsy Foundation.Which equates to 1 million dollars a year.Not too shabby I'd say and much needed.

This picture of Charlotte cracks me up and I really needed that tonight as well.The outfit was her own original design by the way!

In other news,the week ahead is extremely busy. We have 2 weddings to attend before Tuesday.Mark's birthday on Sunday.A baby shower on Sunday.Matt's birthday on Wednesday and Charlotte's birthday next Sunday.All happy celebrations though and we sure will need them because sprinkled amongst the joyful busy we have a memorial service to attend on Tuesday.A service for a precious little girl named Cecilia,who celebrated her 12th birthday in April.Sometime Tuesday night she passed away in her sleep and was ushered into Heaven,I am sure,by her older brother,Isaiah, who passed away 12 years ago.We actually met their parents, when we lived across the street from them before they had children and we were just a young family of 5. Both Isaiah and Cecilia had unspecified genetic disorders but those disorders do not, nor will they ever, define who they are.They are desperately loved children,siblings,grandchildren,niece and nephew and friends, to many.Cecelia is the princess of the family and had a smile that lit up a room.Zoey was so drawn to her,in a way I could never describe and tonight ,when I spoke to her mom,she said in her mind she just keeps seeing Zoey blowing kisses to Cecelia, over and over and over again while at church.Two special little friends.Our hearts are heavy tonight for a family who must journey down a road,again,that no parent should ever have to.Not once and certainly not twice.And they know just what is in store for them and for that,my heart breaks.

The simple joys ...

2011-06-28T00:22:00.000-07:00

Cailtin and Danny went away to Cambria for their anniversary this weekend so Mark and I were on Mimi and Pop duty.What a blast it is being grandparents.Seriously.

Charlotte is easily entertained and occupied and as busy as she is,she can exude such joy from the simplest of things.At one point in the weekend she was thrilled just playing with the ping pong balls in the foyer with Mark.They hung out there for the longest time.

Zoey,in true Zoey fashion,was content just hanging back and watching.At one point she briefly joined in and then,out of no where,Charlotte decided she wanted to play Ring around the Rosy with Zoey... I thought it was precious.

Charlotte so desperately wants Zoey to do what she is doing.Sit on the couch.Run around outside.Make mischief.She hasn't quite figured out why Zoey can't.

One day she will though and something tells me,when that time comes,little niece will then become great protector and loving caregiver.It's a beautiful thing,these two girls and the relationship they are forging.Undeniable gifts to each other.

Sometimes, an article like this,makes me question,is there something more I could or rather should, be doing?

2011-06-23T00:08:00.000-07:00

South Korean pastor tends an unwanted flock

In a country that prizes physical perfection, Pastor Lee Jong-rak, his eyes opened after caring for his own disabled son, has been taking in unwanted infants, who if not for his drop box would be left in the street.

June 19, 2011|By John M. Glionna, Los Angeles Time

The drop box is attached to the side of a home in a ragged working-class neighborhood. It is lined with a soft pink and blue blanket, and has a bell that rings when the little door is opened.
Because this depository isn't for books, it's for babies — and not just any infants; these children are the unwanted ones, a burden many parents find too terrible to bear.
One is deaf, blind and paralyzed; another has a tiny misshapen head. There's a baby with Down syndrome, another with cerebral palsy, still another who is quadriplegic, with permanent brain damage.
But to Pastor Lee Jong-rak, they are all perfect. And they have found a home here at the ad hoc orphanage he runs with his wife and small staff. It is the only private center for disabled children in South Korea.
"This is a facility for the protection of life," reads a hand-scrawled sign outside the drop box. "If you can't take care of your disabled babies, don't throw them away or leave them on the street. Bring them here."
Since 1998, Lee, now 57, has taken in nearly three dozen children — raised them, loved them, sent them to school. He has changed their diapers, tended to their cries in the middle of the night. Today, he has 21 wards: the youngest a 2-month-old, the oldest 18.
His motivation is painfully personal. Twenty-five years ago, Lee's wife, Chun-ja, gave birth to a baby so disfigured Lee kept the boy from her for a month until he could figure out a way to tell her the unthinkable, explaining only that the child had a serious illness and was rushed to another hospital.
The baby was born with cerebral palsy. A mammoth cyst on his head choked off the blood flow, slowly rendering him brain-damaged. Doctors gave him months to live.
Today he lies on a bed in Lee's home, his legs splayed at impossible angles, his feet turned back inward. Eyeing the room impassively, he occasionally lets out a snort or sigh, as his parents regularly vacuum his saliva through a tracheal hole in his throat. They call him Eun-man, which means full of God's grace.
He plays the role of emotional touchstone for an orphanage in peril: Health officials have ordered Lee to close his drop box, saying it encourages parents to abandon their babies.
Authorities say Lee has no formal training and not enough space for his wards, only two of whom are not handicapped; they were left by single mothers. Lee has no license, but for years he had operated underneath the radar. Now he worries he will lose the government funds he receives as the children's legal guardian; the money keeps him in operation, along with donations from local firms and private benefactors.
Orphanage supporters say authorities are missing the big picture. Though there are other institutional facilities nationwide for disabled children, they say, no salaried caregiver could match Lee's compassion and paternal touch.

"Rather than look at what he can bring, they focus on what he doesn't have," said Peter A. Dietrich, an orphanage volunteer. "The enormity of his mission hits you between the eyes. I don't know anyone who goes there for the first time and doesn't tear up."

:: Eun-man's birth caused a religious man to question his faith.
"I asked God, 'Why would you give me a handicapped child?' I wasn't grateful for this baby," Lee recalled.
He soon came to regret those words. Looking down at his son, helpless and beyond hope, he says he witnessed the preciousness of life. He and his wife decided to work desperately to keep the boy alive.
In the mid-1980s, Lee said, the disabled in South Korea were often viewed as embarrassing curiosities — more creature than child. Even today, he said, babies with physical deformities are seen as a national shame in a culture that prizes physical perfection, where cosmetic surgeries have become as common as haircuts.
Given his limited brain function, Eun-man needed constant care. He spent his first 14 years at a hospital. To help pay for his care, Lee sold his family food market, borrowed money and took up odd jobs to bring in more cash.
He spent months at the hospital and began visiting the rooms of other disabled children, encouraging their parents not to give up on them. Many began calling him "the pastor."
Strangely, the boy Lee once blamed on God ended up bringing him closer to his faith. In 1992, when Eun-man was 6, Lee entered theology school to become a Christian minister.

One day, an elderly woman at the hospital asked Lee to take her paralyzed granddaughter. The bargain: If Lee said yes, the woman said, she would agree to convert to Christianity. He accepted the child, named Sang-hee, who still lives with him. Months after making the deal, the woman was dead.
A social worker then asked Lee to accept the brain-damaged daughter of a 14-year-old girl who drank and did drugs during her pregnancy. The social worker assured Lee the infant, named Hannah, wouldn't live long.

Lee fed her through a tube, amazed at the child's hunger to survive. Hannah lived six more years: "When she died, I cried so much, more than even when my own parents passed away."
That's when Lee vowed he would never turn away a challenged child. He has officially adopted several as his own and gained temporary legal guardianship of others.

In 2009, he installed the drop box. Immediately, the babies began appearing, some with their umbilical cords still attached.

:: The child welfare people visited Lee in spring. They had seen a TV report on his orphanage. The drop box had to go.
Child abandonment is a crime in South Korea and they said Lee provided parents an easy out. They said the orphans also deserved to know the identity of their biological parents eventually, a service Lee could not provide with the anonymous drop-offs.
Although they acknowledge Lee is well-meaning, officials believe he may be doing more harm than good. "Just accepting an infant without going through the proper verification steps is wrong," said Lee Woon-gyu, a child welfare officer.
Social workers who recently visited the orphanage say that 21 children are far too many for a four-bedroom home; some called the conditions unsanitary. They added that the law requires a doctor to be on hand round the clock in case of an emergency.
Pastor Lee insists that his orphanage has been running safely and efficiently, but acknowledges that he wants to raise the money to build a larger facility. He says the drop box offers salvation for babies who might otherwise be deserted in trash cans or public restrooms. He refused to remove the box, but agreed to turn over any children left there. Since February, eight infants have been placed there.
On a recent day, he hurried around the orphanage, kissing each baby on the cheek and forehead as four donated washing machines hummed in the background.
The walls are covered with pictures of his brood, some of whom are named for the time they appeared in the drop box, such as Midnight and Autumn. Of the 32 children he has taken in, three have died, three went back to live with their parents, and five were adopted.
Lee says he loves them all equally, but there's one he cannot forget. Little Hannah is buried under a tree just outside Lee's front door. "I just couldn't let her go," he said. "It comforts me to know she's still here."
john.glionna@latimes.com

Jung-yoon Choi of The Times' Seoul bureau contributed to this report.

My girl and the ocean ....

2011-06-16T23:46:00.000-07:00

The boys raced to the water and Zoey followed suit.If you look closely, you can see the path in the sand where she scooted herself towards the water.

Zoey is at such peace beside the water.The ocean brings out a side of her that I cannot describe.She is carefree and happy and relaxed, and seeing her that way,brings such peace to this mommies heart.

You see, before we headed to the beach on Wednesday,Zoey had her last day of school for the year.I went to the little promotion for her darling buddies that will be going to kindergarten next year.I stood back and watched all the children, and I watched my girl and I felt,for just a few moments,a little sad.You see,with the morning and afternoon class combined for the ceremony,I could really see the make up and demographics and I realized that my little love,is ,how shall I say this,"the most special of them all".I saw,up close and personal,that she is so very behind her peers.I mean really behind.Her needs are so extensive within that classroom,and I have to tell you, it made me sad.Not for long and I didn't cry, but my heart hurt, just a little bit.

Zoey and one of her amazing teachers,Miss Mohini

I watched as the superintendent tried to hand her a little scroll with a letter of achievement.He tried to place that scroll over and over, into her little left hand and from where I stood in the back of the room I just wanted to scream,"Hello,stroke hand,not gonna grab it."But of course I didn't.But I really wanted to.So I walked up to the front of the classroom when the program was over and I picked up my sweet girl and I held her and kissed her precious face.In that moment, I just wanted to protect her and run.And we did.Okay,we didn't actually run but we left and we went and picked up the crew at home and headed to one of the only places,besides church,that brings out the most indescribable side of my wonder girl ... and my heart wasn't sad anymore.

Two little buddies for life.

Sometimes, I can hardly believe that I am a grandmother to this beautiful face.

My baby and her baby.

Going to catch some waves ....

Oh how I love this child.

iPad, wheelchair, milk allergy and MRSA update ...

2011-06-13T16:17:00.000-07:00

Nice hodgepodge,uh?

After lighting reading the riot act to the mobility company handling Zoey's wheelchair,seems like they got moving pretty quickly after that.Which is a shame really.Why should we have to get snarky and forceful on these issues?Seems as if everyone did their jobs,the way they are suppose to be done, it would make everyone's life a whole lot easier.Most especially our children, that require the extra,extras in life. So... baring any glitches and don't you know there could always be one or two,Zoey should have her hot little pink rod, in about 2 weeks.Pretty cool.In fact,I was just thinking today,as I have a garage just screaming to be organized,how nice it would be to have a sturdy,comfortable,fitted place to put Zoey in,while I undertook the aforementioned task.Yeah,she could sit in her stroller,which is a cute little number itself,but it really doesn't fit her physical needs.A Physical Therapist,hers actually,would be a bit mortified at how NOT well she does fit in it.But it has served it's purpose and it is great to tool around in, but the wheelchair is going to be much better.At least I am hoping it will.

Her's is pink,with her name embroidryied on the back seat and the big wheels are fiited at the fron,in the hopes that one day she will be able to wheel it herself.Might prove tricky with one arm ...

As for the iPad,the one she was so generously gifted with a little while back,that should arrive in a week or so as well.After some legal mumbo jumbo,much of which I do not understand and much of which has been a gigantic headache for Marissa's Dad,they have been giving the go ahead to ship the iPads out to all 40 lucky recipients.So excited for all these children.And ... if your child or anyone you know of,could benefit from the iPad,hop on over to Marissa's Bunny Blog and check out the 2 Special Needs Giveaway they are doing right now.Really awesome what Mike and his cohort's have put together and are making happen and anyway you can support their cause and spread the word,would be greatly, greatly appreciated.

Onto the milk allergy.So, remember how I said that Zoey was allergic to milk,as in the past, as in before, as in no more?Well,I lied.At least I think I did.But like most things with Zoey,she is making it difficult for me to say for sure.See, I had been giving her yogurt through her g-tube when I did blenderized.Didn't seem to bother and no hives.Then she began eating and I tried it a few times and again,no problems,no hives.Then the other day,I tried again and all of the sudden she got this weird red splotchy rash thingy on her face.All around her mouth,kind of isolated where the yogurt was smeared on her face from being the messy little eater that she is.So,I am definitely in a quandary.Is it or isn't it an allergy of sorts still?I think I will lay off the yogurt for now and retry in awhile.Figures doesn't it?I really should learn to not utter certain things out load .They have an uncanny way of coming back and biting me.

Ignore the goofy look,can you see the spots?

Comic relief... my granddaughter Charlotte,trying to g-tube feed herself.Cracks us up.

Finally onto the MRSA saga.Thankfully,we or shall I say she,has managed to avoid a procedure on the remaining pocket of well,not to gross you out,but pus.The area is a whole lot better and is almost nonexistent.Almost.So glad for that.But this latest episode was just an unwanted reminder of yet another something,something, we have to always be on the look out for.Bummer.That is for sure.

Just a few little updates for now.Summer break has officially begun,to the herald already of, "I'm bored."To which I say,tread lightly my little boys,because I can find plenty of household tasks to keep you plenty busy.In all fairness,that was a few days ago and today,they have been perfect.They have spent the last 3 nights "camping out" in the backyard.So fun.We also began swimming lessons today,which we pretty much do Monday through Thursday,all summer long.And,we are heading to the beach tomorrow.Our first of many,of the summer.More tomorrow or the next,on the rest of the crew and the goings on with them...

Sometimes I just want to cry uncle ...

2011-06-09T22:03:00.000-07:00

In all honesty, what I really want to do, is let loose a whole slew of profanities instead and sometimes I do.Feels freeing.And today,in the sanctuary of my very own vehicle,I did just that.

I have lots to share.That's what happens when I seem to be making it a habit of only posting once a week.But most will have to wait.I have an entirely different post all but ready to hit publish on, but I opted out in light of the latest.Which,in my very own words to my pediatrician this afternoon were,"Well,could be worse.In fact, I do believe we actually have seen a whole lot worse over the last 4 years,haven't we?"

The long and short of it: Last Thursday,it looked as though Zoey was developing a stye.I cannot recall,for the life of me,any of the other 5 ever having one but I was fairly certain that was what it was.Took her into the doctors.My go to guy, Dr.Kundell, is off on Thursdays but his very capable and loved almost as much partner, was in.She said,yep,looks like a stye.Go home,apply warm compresses and that is about all we can do.So I went home and 24 hours later,the eye looked even nastier.It was a Friday afternoon so I put a call to the dr's ,left a message and headed to Matt's paramedic graduation.Which is one of the things I wanted to share but wouldn't you know it,the little Miss upstages once again.I will however post a picture as a consolation,and at the very least, express how absolutely proud of him we all are.

Jessica and Matt,looking darling as ever!

Anyway,my phone was in the car.Didn't check it all that night,which had I, I would have seen a missed call from the doctor. As for the eye,well,still looked like crap but figured we would see what the morning would bring.At 8 am the phone rings,it's the amazing Dr. Kundell,asking about her eye.As coincidence would have it, Mark and I were just commenting,not a minute before, how horrible it was looking.I relay that to her doctor, to which he says,can you meet me at the office,I am thinking MRSA.To which I, let out an audible gasp because that nasty,yucky thing, was not even on my radar.Why?I have no idea but I just didn't even think of it.And really,I should have but I have been a little complacent about it because she has been so good lately.No real spots of concern and well,I kinda pushed it to the side.Stupid,stupid me.

Check out her right eye ... wish I could have gotten a closer shot... this picture just does not do it justice.

For those of you that need a reminder or who happen to not be familiar with MRSA,MRSA is a very dangerous,antibiotic resistant staph infection.In Zoey's case,she has the community acquired not the hospital acquired and she is colonized.Meaning, it is in her body,forever,never going anywhere, anyways gonna be there.Which sucks.Big time.Not a fan of that word.Never allowed my kids to say it but seems befitting right now.If MRSA begins to take on a life of it's own,and we can't get a handle on it,it can go south.Real quick.So, Mark hightails her into the doctor,the doctor does a swab and we are told to wait on the results,which can take 3-4 days.In the mean time,we will do heavy duty drops because her tear duct probe has failed for yes, the second time and it looks like there is a possible secondary infection going on.We start Bactrim,which is the only known antibiotic to sometimes curb the progression and from there,we wait on labs till mid week.

The eye gets better but doesn't clear completely and something in me says that that swab is going to come back positive for MRSA.And sure enough,it has.And now,the question is, with the spot still there, it obviously still has some junk festering in it,what to do?Abscesses of MRSA have to be drained or else it will just stay and spread and well,do you remember the "flesh eating bacteria" hysteria not so long ago?Well, that,that is what MRSA can become.Trying not to be over dramatic but in the worst of the worst cases,that is the reality.

Do you see why I sometimes want to scream uncle?I mean seriously,this is not some benign nothing.And on her little lower eyelid none the less.So sensitive and fragile of an area.And if it has to be lanced and drained,not pretty.And the procedure would have to be done in a hospital and well,the lists goes on as to why I just want to cry uncle on some days.

Like I said,could be worse but sure as heck could be better,don't you think?Now,seems like I should wrap this up with a positive and trust me,lots to be positive about around here.I don't miss that for a moment.Really I don't.So as related to Zoey,in this moment,besides the obvious of seizure freedom and remission,the next positive I can see,on the grand scale is.... that she now eats 3 entire jars of food a day.No problem.And,she likes yogurt.Specifically this rich and yummy and loaded in fat kind.

The other big news with the yogurt is that when Zoey was a year old,we found out she was allergic to milk.Hives.Lots and lots of hives.But often when milk is introduced again to a child,when they are a bit older,the milk allergy has disappeared and that is the case with Zoey.Thank goodness for small favors.We'll take it.

For now,let's pray that this spot on her lower lid makes it's self scarce and we can avoid a procedure.The week has been crazy busy.The boys are finishing up school.Jess and Matt have left for a place of their own,insert sad face here :( and Danny will be graduating from UCSD on Saturday.Lots of good,crazy,busy stuff.Blessed and lucky for all of it.Well,all of it except for that pesky MRSA.

Uncle.

2 years ago today ...

2011-06-02T18:51:00.000-07:00

"he is proof that what we all know is lurking out there-the awful and yes,inevitable tragic loss,the unexplainable savage attack,the seemingly insurmountable occurrence-can in fact be survived with love and grace intact,without bitterness or resentment,and with an appreciation for all that follows." ~ Oogy:The Dog Only a Family Could Love

2 years ago today,Zoey was discharged from CHLA's 4E oncology floor,after waging an 8 month battle against leukemia.We left that place with immense gratitude,for as we walked out those doors,we left behind pieces of our broken hearts.Today we look back at our time spent there,with a mixture of joy and sorrow and we remember with great love,the faces of our fellow warriors who's miracle was not to be and who now watch and inspire us from above.Cancer,and our walk with it,has changed us.Some for the better and some,understandably,for the worse.The loss of our precious friends,children we came to love with all our hearts,the loss of them,in our lives and more importantly,in their families lives,is something I will never,ever,understand.Not in this lifetime.

So today we thank God for guiding our little fighter girl to this day.For strengthening us with His ever present grace during our times of uncertainty.For allowing us to see the beauty in these moments,and the possibilities of all our tomorrows.We put forth all our fervent prayers for those still fighting their courageous and valiant fights and also keep close to our hearts all the families that we came to know and love,that must now somehow learn to navigate this life without their beautiful children.We thank them for journeying beside us and allowing us to glimpse,for all too short of a time,what the true face of courage looks like.We are forever blessed because of it.

Slow and steady prevails once again ....

2011-05-26T23:54:00.000-07:00

So,I have been hesitant to put this out there.Might be my superstitious, try not to jinx it, ridiculously warped way of thinking.Who knows why exactly?Hard to tell.But tonight seems like as good a time as any to share.It's a topic that I have touched on from time to time.A subject that has seriously frustrated the heck out of me in many moments.I think,well,I actually know,that I have shed tears over it.Shameless,wasteful tears.And I have given up a whole bunch of times as well.Resigned and talked myself into believing I just didn't care or that it didn't matter but really,in the end,it did matter and I did care.A lot.

The topic:Food.Zoey and food.Zoey and not eating food.Zoey losing all of her oral eating,in what seemed like a blink of an eye.My girl, that was g-tube fed,24 hours a day,for the first 6 months of her life.Me,pumping milk those first 6 months.Hoping and praying that she would somehow miraculously start nursing.Them,the naysayers,looking at me with their pity filled eyes,wondering was I actually entertaining the possibility that a child with Down syndrome and a host of other issues,was really going to just take up nursing at some random juncture in her little life.Well,I knew she would.I knew that once her heart was repaired,that the child that I watched and willed, with every fiber of my being,to live,I knew,she would.And she did.And it was miraculous and just as quickly,in a little over a year,nasty seizure meds. and even nastier chemo,would rob her of it all.

I told myself and everyone else, that it was fine.That all that truly mattered was that she was here.Alive.And it was true but still I hated the fact that she stopped nursing and stopped eating her heaping bowls of babyfood.So,we did feeding therapy.Lots and lots of feeding therapy.Until I could no longer take it and she,she was so very over it.I literally had every tool and every trick of the trade and still,nothing.We took breaks every now and again and when I started back up ... nothing.And then,about a month and a half ago,I plucked that child down in her high chair and we had a go at it again and this time,this time,she didn't cry.She opened her mouth and she took a spoonful.And then another.And then another.It wasn't pretty but it was in there and we high fived and clapped and cheered and she ate.And she continues to eat.

It still isn't pretty.But it is getting better.She is up to 2 jars a day.2 jars.I can hardly believe it.A beginning.A beautiful,hope filled beginning.We have had many of those over the last 4 years.With each one of them we find ourselves rejoicing.We marvel in this child of ours and we are reminded by her mere, yet spectacular existence, to never underestimate the power that lies within the tiniest of fighters.Why I lose sight of that along the way from time to time,is beyond me.But I really needn't look far for that reminder,it lies right before me, everyday,as Zoey works so very hard to live up to the anthem of her magnificent life .... "Slow and Steady Wins the Race".Yes indeed it does baby girl.Yes it does.

Powerful Public Service Announcement on the R-Word. Watch it , share it , live it.

2011-05-24T19:13:00.000-07:00