My Idea of Perfection...

Over the course of the last nearly 19 months, we have been asked the same question time and again. At first, I never gave much thought to what appeared to be an innocent, seemingly well intentioned, inquiry. As time passed however, I began to wonder. Was there an unspoken caveat or at the very least, curiosity, attached to it? The question.......Did you know? Did I know..... what? The rest of the sentence often hanging out there in awkward silence until followed by..... did you know before she was born that she would have Down syndrome? Our response was always the same. Yes we did. No, we did not have an amniocentesis. We knew because her type of heart defect is primarily, if not always, found in babies who have Down syndrome. That was usually that. Enough asked. Enough answered. But since Zoey has been born I know for certain now, because a very few have been straight forward enough to ask, I know for certain, what some are really wanting to ask. Why they are even asking in the first place. Not my paranoia. Not my speculation. Ask other parents of children who have Down syndrome and they too will tell you. What they are initially asking, what they are wondering is, had you been one of the ones "taken by surprise," had you had a choice would you haven chosen differently? Were you one of the ones who made the conscious choice to bring this child into the world knowing they were coming into it having Down syndrome or did circumstance decide for you? Did life decide, instead, for you? Why does it matter you ask? Why bring up and spend so much time on, what from the outside appears to be a harmless question? One might only have to look around your very own corner of the world to find the answer. If you spend a little time glancing at the faces of children scurrying past you, you might be able to answer for yourselves. The cold, hard and very sad fact of the matter is ..... there are not as many children, as many people, with Down syndrome as there use to be. Again, not paranoia, not speculation ...... fact. Today the statistic stands at a staggering, heartbreaking number of ..... 85 - 90% of families who receive a prenatal diagnosis of Down syndrome abort. Let me have you sit with that number for a moment, then let me repeat it. 85 - 90%. Some believe it to be even higher. I don't have the right words to follow that statistic. I do know however that with the ACOG new recommendations that all women, not just those over the age of 35, be provided with prenatal screening, that that statistic will rise. Do we, in the face of those statistics, have an obligation, a responsibility, not just as families with Down syndrome children, but as human beings? How do I, as a mother of the most incredible child, resist the urge to shout and scream for all to hear that this "thing" that people think happened to us is really okay. More than okay. That this is not the end of life as you know it. It's quite possibly just the beginning. How do I translate to others the beauty and light our lives have taken on because Zoey is here with us? As I lay on the perientologists exam table, at 21 weeks in my pregnancy, I was asked, fairly casually, what I wanted to do? I was reminded that things were "time sensitive" where my decision was concerned. I literally fought the over powering desire to not just bolt out of the room but to also throw up right then and there when I finally realized what they were asking me. I glanced at the ultrasound screen ,where I watched in awe my tiny baby girl kicking and squirming and there was never a question. Ever. Nor would there be today. Did the diagnosis of Down syndrome have more in store for us then we bargained for? Than Zoey bargained for? Absolutely. But with that said, the diagnosis of Down syndrome has also held more joy, more love, more strength, more faith, more perspective, more tolerance, more patience and more grace then we could ever possibly convey to you. I recently had a mom, who's little one also has Down syndrome, tell me I wouldn't exactly be the perfect welcome wagon for a family just settling into the diagnosis of Down syndrome. I wasn't offended. I knew what she meant. I, or rather Zoey's battles, would probably scare the heck out of most, but I hope one day my time will come. That Zoey's time will come. That one day we both will be able to stand, side by side, before a family and be a picture of hope. To dispel the distorted image that comes to mind when one hears Down syndrome. That Zoey will represent a vision of the future during another mother's hour of despair. That Zoey will represent strength, determination, courage, innocence, goodness and most importantly, perfection. Not society's idea of what perfection should look like...but instead the image in which God had always intended it to look.

"In this life we cannot do great things. We can only do small things with great love." Mother Teresa

However much I would like to push from my memory, the reason, circumstance and motivation behind the creation of this blog, I cannot. This site began as an outlet, mostly for me, in the aftermath of Zoey's Infantile Spasms diagnosis. A very sad time for us all. An especially dark time, for me. An entirely unfair time for Zoey. Through this site I began journaling and networking and the beauty of friendships soon followed.Finding other families living the very same nightmare.All of us walking bleary eyed through uncharted territory. Wondering each and everyday how we found ourselves in this place and wondering how the heck do we find our way out? Some have. Others are still searching. Today this email came through my box. My reminder. I pass it on, in portion, as a reminder to some or for many, as a stark introduction to what so many children and families are battling daily.Marissa's dad is a doer. It started with Marissa's Bunny and has now morphed it into the idea, that if we all band together, all of our voices, we can make a difference. This post is long. If you see it to the end... thank you. If you pass it on... even better.
Here is my "small thing."

One in Eight

Annandale, VA

September 30, 2008.

Stand warned, there’s mathematics and drama ahead.

• There are approximately 305,297,000 people in the USA

14.02 children are born (and survive three months) per 1000 people in the USA every year.

= 4,280,000 babies will be born and survive to three months old

Infantile spasms prevalences in research are variable and depend on which source you refer to. I’m going to estimate conservatively and assume a 1:1 male to female ratio, and use 1:4000 for males, and 1:6000 for females, averaging out to 1:5000 births afflicted by infantile spasms. The ratio is actually 1.05 to 1 male to female, so the actual number of IS kids is a bit higher.

So, with 4.28 million babies and a 1:5000 infantile spasms affliction rate:

• 856 kids a year are diagnosed with infantile spasms.

Infantile spasms resolves itself into something else at approximately 2 and a half years of age. Following that logic:

• 2,140 sufferers of infantile spasms currently less than 2.5 years old.

Infantile spasms is fatal in 1 in 20 of these kids before age 3, not due to accident. That makes 42 kids a year. ACTH treatment mortality ranges depending on the literature between 1:20 and 1:30. For the sake of argument, we’ll say 1:30, and that will account for both kids that go on multiple courses of ACTH and kids that never do. That’s still an additional 29 kids a year.

• 42+29 = 71 kids die a year from infantile spasm related causes

Removing all mortality statistics from IS kids, that’s 786 kids that survive to age 3. Accidents from drop seizures following IS resolution claim some more before adulthood at age 18. The numbers on accidents are fairly staggering depending on your source, but I’ll call it 1:20 again, for the sake of conservatism - this number goes very high in some studies. That’s another 40 kids before age 18. 746 kids survive to age 18. Overall mortality before age 18 is then about 12%- one in eight.

One more time, and in bold. One in Eight.

Look around your town, your supermarket, your place of work. Would you notice one in eight people gone? In what world is a 1 in 8 mortality rate un-noticeable or inconsequential? How many of these kids can be saved with better research, quicker or more accurate diagnoses, more community awareness, or a better support mechanism? I’m sure it’s not all of them, but given the current state of research on IS, a small improvement would make a huge difference.

Penny-arcade.com helped me reach over 60,000 more people, but it’s still not enough. I’m not Superman. I can’t sweep across the country bearing a red cape and talk personally to the parents of all 2,140 kids with infantile spasms, I can’t even catch the new diagnoses. It’s asking a lot of the parents of IS kids to be a public voice for their children individually.

Even with everything else going on in our lives, I’ve started the wheels in motion for a foundation for promoting awareness and providing support to IS parents. This is going to take time and money, so be patient with us. A week or so ago, I spoke with Mike Bartenhagen, another face in the battle against infantile spasms, about this and we’re both on board with this idea. As a group, we’re stronger and louder than we’d ever be individually.

If you want to help, please contact us. If you’re a parent of an IS kid, and feel you can offer sympathy, support, or advice to other IS parents in the future, especially the ones with new diagnoses, please let me know. Financial help is always welcome- please donate through the front page. These are the early, fragile days of any new foundation-to-be, and any and all help is welcome.

ABOUT MARISSASBUNNY.COM - Marissa is a baby girl who was diagnosed with Infantile Spasms on February 15th of 2008. Infantile Spasms is a serious pediatric epileptic condition that could leave it’s mark on her for years to come. Fairfax is Marissa’s Bunny - a shared name for stuffed rabbits that are traveling the world trying to spread awareness of her disease that has no reliable cure and is hard to relieve. Marissasbunny.com is a website dedicated to spreading the word about infantile spasms, with the goal of better diagnoses and enhanced support for parents with infantile spasm suffering children.

"Gratitude unlocks the fullness of life.It turns what we have into enough,and more.It turns denial into acceptance,chaos into order,confusion into clarity.....it turns problems into gifts,failures into success,the unexpected into perfect,and mistakes into important events.Gratitude makes sense of our past,brings peace for today and and creates a vision for tomorrow." Melodie Beattie ...... Today I awoke thankful.Thankful for all that surrounds me. The beauty of those that remain constant in my life.The place that we,as a family find ourselves dwelling, in this very blessed moment.Today as I sent prayers to many, near and far, for strength to pass through what this day will hold for each and every one of them and most especially their children,today I feel extreme,unwavering ...... gratitude.

Zoey in her very cute new chair.Not very practical for a child who can't sit on her own yet,as witnessed by photo number two but way too good of a deal to walk by on a sale aisle, at one of my favorite stomping grounds ......Target.

Birthday Girl

Yep, that would be me. 44. I feel more like 34 and as I remarked to someone earlier today, that it is amazing that I don't feel 54 considering what the last 2 years has held. We had a relaxing day. My good friends Tanya and Michelle, treated me to a pampering pedicure and we ended the day with a little family celebration. Age and birthdays have never, ever bothered me. I really have tried to always adopt the philosophy that as each year passes and each birthday comes, to embrace them all because how blessed I am to be, well, actually living and breathing. Another year, another gift. Speaking of gifts. I wanted to share with you all, this beautiful necklace that Mark gave me. It comes from a website by the name of Band of Angels. A really cool site. Anyone that has been touched by Down syndrome in anyway, should go check them out. "The Halo with a Twist symbolizes the beauty and uniqueness of individuals with Down syndrome. It is shimmering and reflective of light - a little different, sturdy, yet beautiful. The light is reflected and radiated from it. The twist is the reminder of the imperfections, which make each of us unique." I will wear this pendant as a constant reminder to myself and others of the beautiful gift of Zoey that has been so graciously bestowed upon my life because Someone thought I was do deserving. Thank you Mark, I love it more than you could possibly know.

"Blogging For Awareness"

October is right around the corner.Totally hard to believe.I am so excited to be participating in a great campaign in this upcoming month.Many of you may or may not know but October has been set aside as Down syndrome Awareness Month.Because of that,I have committed to post something, everyday in the month of October, to raise awareness for Down syndrome.Hence 31 for 21,31 days in October for Trisomy 21.Get it?I can choose to simply share some of our experiences thus far on our journey with Zoey or maybe I can provide known and little know facts about Down syndrome along the way.Hard to say what you might find here on a daily basis.All I know is there are no rules.Only the hope that through what we choose to write about, we can educate and enlighten those that visit our sites.That we might be able to give others a glimpse into our world and the infinite beauty that has come to our lives because we have been touched by the grace of someone, who just happens to have Down syndrome. I am honored to be taking part in this awesome project and I hope that all of you who visit me daily, will stick it out with me.Thanks in advance and feel free to spread the word.

"This is courage ...to bear unflinchingly what heaven sends" Euripides

As I head out each day with my tiniest love,I am reminded how deeply proud I am of this little wonder.From the moment I was able to hold Zoey in the NICU,she has seldom left my arms.I have a great difficulty in releasing and relinquishing her into the arms of others.Each Sunday as we enter church we are greeted by countless people who wish to hold her and love on her.Beside the obvious weariness of the germs that are lurking at every turn,with every finger hold or cheek kiss,I also feel an emptiness when she is not cradled within the crook of my arm.Last Sunday,a very sweet mom who always sits behind us, asked to hold Zoey.I did not hesitate but I must say I felt completely and utterly naked.When you have a child that relies 100% on you for every waking need,your bond is one that is extremely hard to describe.Impossible really.That bond even transcends that of which you have with your other children.Not a greater love and connection.Just a different one.One not easily put to words.We are blessed to qualify for respite care,24 hours a month ,that actually roll over to the next month if not used.A huge service, that I know how fortunate we are to have at our disposal.I have yet to be able to bring myself to utilize it.The thought of someone else taking are of her seems so,well,uncomfortable to me.Physically uncomfortable.Maybe one day it will feel right.But honestly,I don't know if it ever will.It is not about being a martyr.It is about finding what works for us.For me.She is my buddy,my sidekick,my partner in crime.She completes me.In every way.So, as we venture out and do our daily tasks,I carry her high in my arms.So she can see and interact and be part of her ever changing world.I even find myself hoping at times,not dreading, that people will stop and talk to us and ask about Zoey and possibly even feel brave enough to ask the questions that cause others to often turn away.I find myself wishing people would engage us in conversation so I can repeat yet again, Zoey's story and they might see and hear for themselves, the mighty spirit in a most minute soul.I want them to see that I do not wear a badge of courage I instead carry it,literally,wherever I go.

A few more pictures from the wing fest.Do you think they were enjoying the food?

"The mere sense of living is joy enough." Emily Dickenson

This weekend all the kids were home.All of them,under the same roof.How great is that?Joy, simple and pure joy.Mark was originally suppose to go to a men's retreat with the church guys but opted out.He said he would rather be home with us instead.Thank you Mark.I know you could have so used a weekend away to renew and rejuvenate.That you chose to stay home with us,speaks volumes.Our times spent together,all 8 of us, are truly so few and far between.I realized today how very much I miss the older ones presence in my life each and everyday.The boyfriends were in attendance as well.A trio of 3 pretty incredible young men.Mark worked tirelessly on a favorite dinner.Chicken wings.Mark is a pro.Nothing beats his wings.I say that and have to follow it with ..... but I don't eat them.I use to when we first met. During our early days,during the long,cold winter nights spent in Upstate N.Y,Mark could be found making his signature dish bi-weekly, at least.Chicken wings,french fries with celery and blue cheese dressing and a couple of nice cold Budweiser's.Hit the spot.Twenty two years later finds me a non meat eater and a total lite weight.Now french fries,those I eat.My Gallbladder,which has reeked absolute havoc on me the last several weeks will not like me tonight.Worth it though.Totally worth it.Everyone fully enjoyed the wing ding,as Mark refers to it.Especially those strapping young boys.I was tempted to post a picture of the finished,eaten product but felt for certain I would be hearing from P.E.T.A tomorrow.We all enjoyed each others company to the fullest.A house filled with lots of action and activity.Just the way I like it.I must also add how very excited Caitlin and Danny were to see Zoey.It has been 6 weeks since they last spent time with her.They love her so much and she them.She was such a snuggler today.Well,everyday she is but today she gave extra hugs,kisses and was filled with so many snugly moments. On a different note, an interesting point of the day was that some of us commented,on various occasions, how very silent Zoey actually is.To give you an idea,we MAYBE heard her make 2 sounds ,of any kind,all day long.With each passing day it becomes so very apparent how little speech,or sound,she really has.It is going to be a major area for therapy in the future.A frustrating point about it is,that while I love to sign with her, it becomes all the more challenging because she does not have use or awareness of her left hand.We and mostly her,will have to become somewhat creative on how we use, what are ideally two handed signs, with primarily one hand.It will be interesting on how it will all come together.Time will tell.Speaking of time,time to wind this down.Little ones are sound asleep.Caitlin and Danny have called it a night.Brandon and Taylor are finishing watching the Dodger game.And Mark,Matt and Jessica?Playing a very competitive Mario Cart, on Wii.They are loving the steering wheels and I have to say, the old man is kicking their butts.Momentarily.I leave you with a few picture of a few of us.Random but beautiful,captured moments.

"The Butterfly counts not months but moments,And has time enough." Rabindranath Tagore

How often have we all said that there is not enough time in the day?I certainly have.Maybe even as recently as the other morning.As I move at an insane pace through my days, it is a wonder that as much gets accomplished as it does.I have been blessed,or cursed,by a body that seldom rests. I require little sleep to function at a level that allows me to tackle the tasks at hand necessary to get the job done of running this house and raising these children.I can say with 100 % confidence that the last time I took a nap was MAYBE when I was pregnant with Zoey in the early horrific morning sickness days.At that, it was a tip my head back and doze of for 10 minutes kind of nap.Don't get me wrong.I love to sleep.When my head hits the pillow,it hits hard.I think the extreme sleep deprivation of the last 18 months allows me to sleep soundly,even when emotional stress should have very well kept me up with worry.The idea of sitting on the couch and watching The Ellen Show or Oprah,totally foreign to me. I have not,I would venture to say, seen one of those shows in it's entirety.Again,don't get me wrong. I yearn for down time.Relaxing moments.Perhaps a spa day.Just not in the cards around here. The reality of that was fairly obvious yesterday.Crazy day.The details of which I will not bore you with. Just suffice it to say I could be heard uttering, "I am WAY too old for this!", a number of times. 15 years ago when I was in the midst of raising the "older"set of children,it was crazy.Today,raising the "younger"set,well,chaotic AND crazy.Why,well,because ...... I am 15 years older! But as quickly as I set it on the shoulders of being harder because I am older,I can just as quickly say it is EASIER because I am older. Mark and I have often said that we are not better parents when it comes to the younger 3,we are just different. We have the benefit and beauty of having passed this way before.When others have thought it unfathomable that we would venture back into child rearing when there was that proverbial light at the end of the tunnel,we chose to turn that train around and ride it again.We have never regretted it. Ever.The joys the second time around have been sweeter because we also have chosen to pay closer attention to them.That is not to say ours joys were not in abundance back then but we did not have the hindsight to know to savor them a little while longer.Hold them a little closer. Because, as we have seen by the incredible rate at which time as flown by,the girls are more then on their way to building their own separate and independent lives.Finding joys of their own.Sometimes, as I eavesdrop at one of the schools or at church or at the park,I have this urgency to interject my pearls of wisdom to some of the stressed out moms I am listening to.I want so much to tell them that all will be right in the world. That their children will survive the nightmare 2nd grade teacher they landed this year. That little Billy will not be sleeping in your bed when he is 18.That Susie will learn to tie her shoes and ride her bike just like little Annie, her new best friend.All of these and so much more will fall into place.I guarantee it.I want to tell them to slow down and that Davey doesn't need to go to Kumon,karate, soccer,art lessons AND piano.Stressed out moms will yield stressed out kids. Do I have it all figured out?Not a chance.Will I screw up and need to put probably just as much money into the little ones therapy jars?Yep.However,I am taking just a little more time to slow down and breathe in the moments because I do know how very quickly it goes. My gift of appreciation of time has not only come from the raising of 3 grown daughters,it has also come in the form of my tiniest daughter. The little soul who's precious face greets me each and every morning. Who's constant struggles have taught me that time comes crashing in with giant unexpected tidal waves and then just as quickly flows back out in calm ripples.Her innocent acceptance of time and it's often unfair and unwelcome circumstances it brings with it,has allowed me to appreciate the fragility of it all.Yesterday was long and arduous but at least it was here. As Joe and Zoey and I sat at the park watching Jake's soccer practice, I looked at my three younger ones and soaked in the moment. I watched their carefree little bodies take in the wonderment of their world.I thought of my older girls and hoped that they hadn't noticed that I failed to pause my continual body of motion quite enough as I should have, to move in their world along side them more. I tried.I hope they know that.I still have much to learn about this time thing.I need to make friends with it.Peace with it.I found this other quote that I just loved:"There are few human beings who receive the truth,complete and staggering,by instant illumination.Most of them acquire it fragment by fragment,on a small scale,by successive developments,cellularly,like a laborious mosaic."Anais Nin .My mosaic continues to be a work in progress but I am beginning to see, with some clarity, the essence of truth as it applies to my piece of this complicated but beautiful world.

From the inside looking out ......

On some days, when the kids are out front playing with the other neighborhood children and I am not able to be outside with Zoey because housework is beckoning me, I place her in her saucer thingy and let her observe the melee ensuing. Zoey loves being an observer. She absolutely soaks in all that surrounds her. Like a sponge. All the crazy chaotic happenings. She is extremely connected to the world around her and I know she is taking in far more then I could ever imagine. Today I captured this picture. This moment. First of all, I loved how Lola was sitting beside Zoey, peering out into forbidden territory with her. Kindred spirits for that moment. This certainly is not often Lola's mode of operation where Zoey is concerned either. Too close for Lola's comfort most of the time. Except for today. After I took the picture I stood back for a moment, set down my camera and crossed the kitchen floor to go out and sit along side my angel girl and view life from her perspective. The second I sat down, she turned in my direction and flashed me that trademark Zoey smile. I told her how much I loved her and then the tears came, just like that. Unexpected and without warning. I realized at that moment, that this picture I captured, could sum up how I feel Zoey's life can often be. We hear the saying, "from the outside looking in" but in Zoey's case I see it in reverse. I watch her look wide eyed as the children cross in fluid, rapid motion before her. So close in proximity, arms reach really but so far away on so many different levels. Many of the children are years older then her but two little girls are just that, barely 2.Not much older than Zoey but a world away,a galaxy,when it comes to what they can do and what they understand.A wide spectrum, with huge discrepancies on how all three interact in the very same world.These two little girls, might as well be years, not months older. The girls wander over and approach the gate from time to time, stick their tiny little arms through the gate and in unison say,"baby".Yeah,sort of.They pause,quickly pet the puppy and off they go.The lure of the adjoining bedlam no match for a girl and her dog.Zoey's little head continues to turn feverishly back and forth trying to keep up with the constant activity before her.Her little body shudders and shakes,full of excitement just watching.She is perfectly content.I sometimes, am not.Will this be the way it is always?An observer.Watching as things pass her by.As all the children just pass her by.She is truly in her own little world.What must go on in her precious mind,inside,as she looks out into the world that just keeps going by?Sad?Yes,today,in that moment I was sad.She of course was not.Is not.I want so much for the world to stop and wrap it's arms around her and carry her with it,where ever the winds and tides and roads lead.I wanted to say,hey,kids come here,come pay attention to this sweet little girl that would just love to run along side you but can't.Not today. The key for me is to believe that some day she will.That my faith will allow me to continue to believe that His plan, for her, is one I in fact cannot question. But rather proceed with the utmost confidence that His plan is the perfect plan.There was another mom today,three thousand miles away choosing to believe,when humanness would be telling most to ask,what is the point?And still yet another mom this evening,who should have been in bed but instead was calling,to talk for a few minutes about another emotionally exhausting day.I know for certain she too is choosing tonight to believe in purpose and plans."For I know the plans I have for you,"declares the Lord."plans to prosper you and not to harm you,plans to give you hope and a future."Jeremiah 29:11 I have got to believe this.I just have to.One day perhaps it will not be about outsiders looking in or even still, others gazing from within their vantage place out towards seemingly untouchable corners of the very same world.Instead a middle ground,a meeting place.Common ground.Different but so very much the same.

Reunion Day ....

For the last week or so we all have been fighting pesky, keep hanging on, colds. Nothing too bad, just won't seem to go away. Even Miss Zoey. And if you can believe it, this is Zoey's first real cold. Runny, stuffy nose, weepy eyes, rattly cough, the whole nine yards. Hard to imagine isn't it? A child that has been hit with everything under the sun but..... the common cold. Do I dare say that we may perhaps be entering into some ordinary, garden variety stuff. Forget it, I won't say it. If I do, I will absolutely have to follow it by a powerful knock on the nearest piece of wood. As I mentioned yesterday, we were heading to the CHLA NICCU reunion today. That was the plan. The plan in fact did go off but not without a minor hitch. Zoey woke up this morning with a fever. Not too high but Tylenol did not bring it down. I thought that it was slightly strange that she never presented with a fever at the start of this virus but would suddenly spike one 7 days in. First thing I thought of was her ears. As luck would have it, her pediatrician had Saturday morning hours today. I was so happy because if I headed to the local After Hours Clinic, which is a great clinic but if I did, the first thing I would hear was how difficult it was to see anything through her little, tiny, narrow ear canals. It would be said with a real dramatic tone too. It truly is a common trait of children with Down syndrome but I have to say I really wish I had ten bucks for each time I have heard that said and I for sure would be sitting pretty with Starbucks money for quite some time to come. So, we got ourselves together and headed to our favorite, local neighborhood Pediatricians office for a quick pit stop before we headed into LA. Dr. Kundell has a handy, dandy special scope just perfect for little, tiny, narrow ear canals and he was able to confirm my feeling ...... definitely an ear infection. That's a first for the little Miss. As was an antibiotic. Yep, another first. Amoxicillin. Now, let me clarify, she certainly has had her share of heavy duty antibiotics in her early days but not your run of the mill pink, bubble gum flavored stuff. Dr. Kundell looked through his computer notes and was dumbfounded to find that he has NEVER prescribed an antibiotic for Zoey in 18 months. He said, "do you know how rare that is for a child who has Down syndrome to NEVER have an antibiotic over the course of 18 months?" My reply, "Of course I do, we are talking about Zoey!" Boy did he laugh at that one. Laughed, but oh so true. Out we went, down to the pharmacy, filled it, dosed her up in the car and continued on our way. Some may say irresponsible. Child with cold, child with fever, child with ear infection, but come on, are a few little things like those going to really stop our Princess? No way. After our quick pit stop we still managed to arrive on time for the festivities. We all had a great time. Zoey slept in her stroller for a bit. The boys had a blast. Snow cone machines, cotton candy machines, train rides, free toys and Star Wars characters meandering around. Every kids dream day. For us too.Except when we lost Joe for awhile.Bound to happen one of these days.That child moves so fast.Found him eventually.Obliviously playing another game for the hundredth time! We saw a few of our favorite nurses, a few of our favorite Neonatalogists. Visited with a couple of really sweet families. Then called it a day. We were extremely proud to be there. Proud of our daughter who fought so hard to be here. Proud to be part of this incredible extended family. Proud beyond words when the doctor who heads the entire NICCU commented that seeing children like Zoey and how well they are doing, energizes himself and his colleagues. Which in turn causes them to work all the much harder and raises the bar higher, for all who work in the NICCU on behalf of these children. Zoey is a graduate. Today she stood, rather strolled, shoulder to shoulder with some other amazing warriors. Kids making their own unique marks. Lending their courageous spirits and resounding voices, in unison, saying: thanks for not giving up on us. Thanks for helping us when we first entered this world and seeing us safely to the place where we belonged all the while ... home. Thanks Children's Hospital of Los Angeles NICCU, words fall short, just know you will always have a special place in all of our hearts. Always.

“It is only by going down into the abyss
that we recover the treasures of life.
Where you stumble, there lies your treasure.
The very cave you are afraid to enter
turns out to be the source of what you were looking for”

- Joseph Campbell


Daily, as I travel through my often chaotic moments, I come face to face with the reality of some of those very same moments. Of Zoey's moments. Whether it is when I head over to school to pick up Jake and stand waiting outside his classroom gate. Or maybe it's when I find myself crossing Joe's preschool courtyard. Still yet, maybe it might very well be at the market or the mall. Or more than likely it is probably going to be at our local playground. Being pushed in strollers, carried in packs, tugging on mommy and daddy's legs, toddling precariously from here to there or climbing park slides, there they are: Zoey's peer group. Other little loves. Boys and girls around 18 months of age making their way, finding their way, through this world. Very much the same as Zoey. Although Zoey's rate at which she is navigating this world is quite different. But she is making her way. Slow and steady. I receive sometimes subtle but mostly stark reality checks in the differences daily. I never dwell long on the discrepancies. But sometimes those realities hit me when I least expect it. This week they came in the form of Zoey's IFSP meeting with Early Intervention. I breezed through her assessment by one of the PT's and saw: 72% delayed in gross motor skills. That's a reality check. Another came in the form of holding a 3 month old baby girl in my lap, gazing at her darling newborn face and finding her instinctively, effortlessly pushing her little 3 month old legs off my lap and bearing weight. Something Zoey cannot do. Doesn't even attempt to. Then there was the visit from my good friend and her daughter who is 2 weeks older than Zoey. Through my front door bounded little Charlotte. She babbled away, climbed all over my couch, ate independently, climbed stairs, even bucked herself into Zoey's feeding chair. Those were massive reality checks. We also had a visit with a little girl named Camille the other day. Camille also happens to have Down syndrome. She is pretty darn amazing. Standing, taking steps, signing, animated as all get up, playing purposefully with toys. Wow, major reality check. During all of these instances I thoroughly was entranced and fully enjoyed watching these children making their way. Just the way it should be. I would be less then honest if I didn't say that little tinges of sadness came from within me in those moments. Sadness for Zoey on how darn hard she has to work. But my days are not filled with bitterness or anger. They are filled with hope that Zoey will continue this slow and steady pace and find her own way. This morning Mark was still home when Charlotte and her mom first came by. He came down stairs with the usual bounce to his step, greeting Charlotte's mom, Shelby, with a great big hug and kiss and then turned his attention to Charlotte. She too got a little hug and kiss and then Mark stood back and just watched her for a few seconds as she got back to the business of playing. Only then did I look at Mark's face and into his eyes and that's when I saw the tears. Out of no where. It took Mark by surprise, I could tell. Seeing him like that took me by surprise as well. One thing I realized in that moment was that Mark does not have the same opportunities for reality checks daily, as I do. I process those moments and move past them. He doesn't have that same chance. My heart broke in that instant. We spend little or no time at all discussing what Zoey is unable do. We do not spend time comparing her to others her own age either. We also quite frankly, forget where and what the other five children were doing at the same age as Zoey. We just see Zoey. Just as she is. However, it is extremely difficult to NOT see it when it is right before you. Is it sad? Yes, in many ways it is. You revisit the fact that you were more than prepared for her to come to you with Down syndrome and a heart defect. We all were embracing those realities. When the rest came, that became far too much to process. However, we were forced to process it quickly and move on. We did that. We continue to do it. Tomorrow we head to a Children's Hospital of Los Angeles NICU Reunion. Wow, who would have thought that one day that's how we would be spending an entire Saturday? But we are. And aren't we lucky once again? Because another reality is this, so many babies in the exact NICU as Zoey, never received the gift of finding their way. Of finding their way home. We did. Zoey did. So once again we count our blessings. We give thanks to God and we continue our journey. Because that is our reality today.

We Shall Never Forget ........

"Joy lies in the fight,in the attempt,in the suffering involved,not in the victory itself."Mahatma Gandhi

When I take time to reflect on the happenings of the last eight months I am forced to spend time in the company of thoughts I would much rather push forcefully back down to the cavernous recesses of my often,selective memory.However, if I do not revisit some of the ugliness and trust me,ugliness is more than appropriate wording,if I do not revisit those moments from time to time I would in turn be unable to speak of the equally and polar opposite place of beauty we find ourselves in today.Most,I would venture to say,would have only needed the diagnosis of Down syndrome to set their pulse racing.I guess a few extra something,somethings like a major heart defect,a rare form of Leukemia and a intrauterine stroke was in order for us.Pulses definitely racing then folks. We,or rather actually Zoey,hit them all, hard.Showed them who was in charge and moved forward.We all moved right along with her.Following her determined and courageous lead. 8 months ago when the diagnosis of Infantile Spasms came,that was a whole new ball game. Yesterday when we saw Zoey's neurologist at UCLA,that ball game was in replay mode.Just the discussion alone was cause for me to be reminded just exactly why I really,really hate baseball.Dr. Shields is an incredible doctor.An incredible man. He entered our exam room,headed right to Zoey and stroked her little body and gently spoke to her first. Not me.After a quick once over we got down to business. Seizure business. The word rolls slightly easier off my tongue now a days because the truth of the matter is,as Dr. Shields pointed out,seizures are going to be part of our life,Zoey's life,like it or not.But and it's a huge but,the seizures she is likely to encounter should be able to be controlled far more aptly then before.He could not have been more pleased at the results we have seen using Topamax. Zoey is on a very low dose and there is quite a bit of wiggle room to move up if need be. We talked about surgery. I mentioned again to him how blessed we felt to have surgery,a hemispherectomy,as an option. He called it "back up".Of course our wish,our hope is to never have to utilize it,ever. But it is there. And as I have said countless times before,Zoey is one of the lucky ones.Many,many children do not have options.I wish they all did.I could see in his face the joy at seeing Zoey lifted out of the fog of Infantile Spasms.Seeing her wave at him.At his assistant.That was success to him.That means success for Zoey.We spoke of the likely hood of break through seizures due to future weight gain and thus meaning an increase to her medication.Easy enough fix. We talked about the likely hood of seizures in her future.All of which he truly and expertly agrees, should be manageable.I trust him.Explicitly.None of that scares me. None of that diminishes my overwhelming feeling that my child is indeed so very lucky.We visited a few more minutes.He handed us a new prescription and we were off.Return visit:6 months.How great is that?After 8 months of too many doctors visits to count,too many EEG's to count,2 hospital admissions,2 front line drug failures and now ....no neurologist for 6 months.We have emerged.Zoey has emerged from the other side of Infantile Spasms.Unless your child has journeyed that road, you could not possibly know what that means. Nor would I want you to.As we left our room and reentered the waiting room I glanced around the very full space.I looked at the faces of so many precious children. I looked at the faces of parents,grandparents and caregivers.Faces filled with fear,uncertainty and exhaustion. All the stories slightly different but joined in the common bond of the love of a child.My question,the same as when I visit the oncology/hematology floor or cardiology or what ever other "ology" floor I have found myself visiting over the last 18 months:Why?Can't they all be lucky?Couldn't they all have been spared this journey?As I left and said goodbye to a few families I had briefly spoken to,I left feeling somewhat guilty.My child was,God willing, not coming back for 6 months. Some of them are there weekly and in between, their journeys are riddled with unspeakable moments.But within that room I also saw joy. I saw smiles.I saw hope.One Grandmother I spoke with looked at Zoey and I and said "You are so lucky." My reply."I know I am."I am the luckiest mother in the world. Luck,rather God,placed this magical child in my life and I have been entrusted to protect and love her even and most especially during the difficult moments. I am asked,rather I am obligated,to look at my life,her life as nothing other then blessed and incredibly lucky.Infantile Spasms or any of the other diagnosis's will not and have not defined Zoey's life.They are just bits of the story.I have to believe her story,the reason she has over come such seemingly insurmountable odds is because she has so much more of her story to tell. We need to make sure we are listening.Music to my ears Zoey Grace.Sweet and sometimes sorrowful, but ever constant and most assuredly joyful.

Born on Monday fair in face .......

Today our little man Joe turns five. Joseph Patrick was born on Monday September the 8,2003 at 9:49 pm.He decide to enter this world on his own terms,not ours and that folks should have been the tip off right there and then that he was going to be a boy to be reckoned with! And true to form that is pretty much the way it has gone down.Up until Joe,I had never gone into labor with any of the other kids. I always thought it would be really cool if my water broke or something unexpected would happen. Seeing this was going to be our last,yeah I know,I have said "last" a number of times.Anyway since I THOUGHT this was going to be our last,a little change up in the routine would be kind of fun. But like all the rest, we just picked a c-section date and that was that. Joe was supposed to be born on the 10th. I planned everything,every detail, around the 10th.Life was scheduled to the tee, around the 10th.But Joe,my do it my way child, did in fact decide to change it up. I actually went into labor on the 8th and I was so excited.Yes excited. Labor pains and all. The whole nine yards. We all look back on that day and truly,fun, is the word we use to describe it. Of course "labor"didn't last long.A c-section was still in order and before we knew it, there was Joe. Number 5.Gorgeous little guy.Spit fire from the get go. Spit fire to this day. He keeps us all on our toes and keeps us all smiling.There is never a dull moment around here with this boy. Joe makes his presence known at all times.He is a confident,full of life little child, who enjoys and embraces each and every moment of his life. I often have said that if I could handle Joe I coud handle anything and well,you see what happened didn't you? I guess someone up there thought I was doing a fairly decent job with this little soul because let me tell you, he has absolutely tested my parenting skills like no other.He also has brought equal and unparalleled joy as well. He can be the absolute sweetest guy.He loves to snuggle. He is so very gentle and loving with Zoey and he keeps us all in constant stitches with his funny one liners.A couple of weeks ago he said,"Hey mom,there are three guys watching us,God Jesus and Santa Clause." That is just a sample of the way Joe views and speaks of life and the world around him. We do also so love,on most days,that mischievous little glint he has to his eyes.You are a darling boy Joe.You add joy and laughter and endless smiles to our lives. Have a happy one little man.We adore you.

"There is no such thing as too many children ....... that is like saying there are too many flowers."Mother Teresa

Come out,come out where ever you are ......

For some insane reason,little Miss Zoey decided to take a 4 hour and fifteen minute nap today.I laid her down at 9:30 am after her OT session. This in and of itself was unusual because she has,as of late, been down to 1 nap in the afternoon.Who says she's not just like all my other children?Every last one of them were nap free by 20 months of age. The flip side of that is they all called it a day at 6:30 pm each and every night for a few years running. Down side.Poor Mark never got to spend any time with them.In bed when he left in the morning and in bed when he got home at night. Seems as if Zoey is well on her way in following in her brothers and sisters footsteps!Well,after 3 hours I thought it might be a good idea to check on sleeping beauty.See if her little chest was still rising and falling!And this picture was what I found. So darn cute.What I so love about it, is that her LEFT arm is draped over her doll.Her left arm. The one she rarely,if ever uses. I had to take this picture and still with my camera clicking away,the little darling slept for over an hour more.I have been fairly sick for the last 2 weeks but that's another post but needless to say I haven't been up to posting much lately so tonight I am going to take the lazy mans route on my post. I am going to try something that I saw a few others do and I thought it was a genius idea. Some of you may or may not know that I have something called a sitemeter at the very bottom of my posting page. This is a free service,for the basic package and it is a fun way to keep track of people who visit your blog. Sort of. It is not like Big Brother but rather a cool tool to play around with. In a nutshell: The site often,but not always, tells me a city and a state where the person is signing in from.Time of visit in visitors time zone. It can tell me what search engine they used or what words they googled. It can tell me how long they stayed. Sometimes what they viewed and if they out clicked to another site.Once I was even able to track down a very nasty person who was leaving very nasty comments. It took some sleuth work and obsession but in the end I tracked them down and put an end to it.What the sitemeter CANNOT tell me is exactly who you are.You still can be incognito.If you want.That is where my post comes in. Everyday over 100 people visit my site. Kinda cool.But who? Some come by accident and never return. Others come and keep coming back. I would love it,only if you feel compelled,if you would let me know who you are. Not last names or addresses or personal stuff like that.Just the basics.Maybe just a quick hello.Maybe how you came to find us . If you visit often and maybe why you come back. No pressure and certainly I would not be offended if you opted out.So feel free to do as you please.And if you choose to make yourself known this time around, it by no means will mean you are now obligated to leave a comment each and every time you visit.I would feel totally awful if I took away some of the casual and carefree feeling you get when you stop by. Regardless,I thank you for your support in whatever way you give it. Especially your prayers.All you have to do is just click on the word comments and you will be guided step by step,easy as that. So ,come on don't be shy,we would love to "meet" you.

It's a long one AND a video AND a picture.You may want to read some, take a break, grab that coffee and then come back!

Yes, I have taken another mini sabbatical. I use to post faithfully, everyday. Now, well, not so much. Reason? No idea. This time however I partially know why. I have just had the hardest time writing a new post because I just love the Difference is an Artist's Game video in my previous post. I just think it is beautiful and want so much to show it to anyone and everyone. I am afraid someone is going to stop by, read one of my rants or marathon posts and have missed this awesome video. So I guess I will move the video to my "Learn More And Be Inspired "section and hope people find it there. Oh, well. Onward I move. Reluctantly. But I have to move because you see, Zoey is 18 months old today!! Yep, I can hardly believe it, 18 months old. One of those, feels like a lifetime but then again only yesterday type of things. This child is nothing short of amazing. These 18 months have been filled with so much of life living stuff in such a short span of time. I say life and living simultaneously because this life of ours, yours and mine, is not always filled with the easy stuff. It often requires consciously making sure we are actually living the life. It often holds a great deal of struggle. Moments that require picking ourselves up and moving forward even when everything around you is just pushing you back down. In Zoey's case it has been a whole lot of struggle crammed into a very short period of time. I was at the park yesterday with the kids and began speaking to another mom there. Of course we eventually got to the giant elephant standing between us, that would be Zoey. Funny, I can have a very long conversation with people, talk about all my children but somehow people are afraid to ask about Zoey. She finally said something about Zoey and her size and I just let her whole history over the last 18 months role off my tongue like it is nothing, only to see the mom's mouth was still hanging open at "she had transient leukemia when she was born" ....... My point, I literally spew forth Zoey's medical history quite effortlessly to most during a conversation and I do not think twice about it. Mind boggling information to process to others but to me, just Zoey's life. So here we are 18 months later. Not quite where I expected to be with Zoey but blessed to actually just be here with Zoey. She is doing remarkably well. I say that with both confidence and enormous trepidation. She is blossoming right before our eyes. She continues to monopolize our conversations and captivate our hearts. We hang on every little thing she does and melt with every single smile she flashes us. Medically speaking the run down is this: Seizures, still under control, praising God for that, each and everyday. We head to UCLA on the 11th to see Dr. Shields for a check up. We don't anticipate anything earth shattering there. Her blood disorder: behaving nicely. Recheck at the beginning of November unless I get freaky and need to check before hand. Completely and more then likely quite possible. We begin a very scary time, not that it hasn't all been scary but these years between 1 1/2 and 3 are when a great deal of children are diagnosed with AML and we will be so glad when we can see her safely past this time. Pray hard for our girl in that department because it is never far from our hearts and minds. Speaking of heart: Hers is still shrinking down and we are again so thankful for that. Recheck also in November. Appetite due to the Topamax: Well, as luck would have it she has begun to show more interest. I have been so diligent about at least attempting solids three times a day and over the last few days, I do believe it is beginning to pay off. The last two days, 3 times a day each, she has eaten an entire bowl each time, completely gone. We have not seen that since February folks. I won't get too excited yet but I do believe the tide is turning. Teething: as evident by the video below you will see her little tongue going a mile a minute. She is still working on 8, count them, 8 teeth. She is normally not a tongue thruster but lately she just does not like the way her gums are feeling. Who could blame her. What else. Physical development: stand still. Complete and utter stand still.Rolling, tons. Up on locked arms, head up high, that too. But that's it. The child does not want to sit. No way, no how. That is our focus. Sitting "unpropped".Our big milestone we are trying to reach. Can you imagine how great that will be? It will open up a whole new world for her. Sometimes I go to put her down on the floor and for the heck of it I try and sit her down and boom ....there she goes back or side ways over. She continues to" forget" she has a left side so we work tirelessly to make her aware that it, especially her left arm, is actually there! Speech: still nada. Nothing. Little "noises" but other than that... nothing to speak of. No pun intended. We feel bad some mornings because she is so quiet that we will have had no idea how long she has been awake before maybe we hear her in there moving around. That and Jake. His routine as the first one up in the morning is standing at our bedside saying, "Mom, I am going down stairs and one of the following ...... Zoey is asleep or Zoey is awake or Zoey has a messy diaper" It is so cute. Always looking out for his baby sister. Cognitively speaking: She continues to make great strides. She waves now unprompted. People enter the room or yesterday at the park, there goes her arm flapping like crazy waving hi to whoever! She definitely knows where hair is on others and we are now working on nose. She will also put her hand on a glass of water that we are holding if we say" this is cold." She puts her little hand there and pulls it off quickly. I taught her that when she tags along with me to my other vice, Coffee Bean & Tea Leaf. Each time I get my blended drink she would grab for it and pull her hand away quickly and I will say "cold." Sometimes I don't give her enough credit either. So it proves that no matter what, you can't stop using every chance you get as a learning/teaching opportunity. There is so much to tell and only so much time, room and in your case patience so I will stop while I am ahead. Suffice it to say,we are so thrilled with where we find Zoey today, on her 18 month birthday. Last year at this exact time we were taking our giant deep breathes thinking it was going to be smooth sailing. Life had different plans for us. For Zoey. Today we take our moments as gifts. Each and everyone one of them. Keep growing strong my little one. Slow and steady.

*As always, if you want to hear the video, scroll down and pause the blog music first.