Soldier On ...

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 ..

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

 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 ...

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 ....

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.

 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?"

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.