Friday, August 15, 2008

She's a handful...

...of fingers to show her age. Addie is 5 today. And she can already answer the "how old are you" question with her chubby little digits held up.

It's been a remarkable 5 years - some of which felt like 20 years during the rare worrisome times, but most of which feels like 10 minutes during the prevailing joyous times. We could not be more proud of our little fighter, thinker, charmer, schemer, swimmer, smiler, walker, signer, joker, rocker, lover, encourager, believer.

We celebrated with double chocolate muffins for breakfast (she was dazzled at first, but ultimately a little nonplussed by the exclusion of frosting) and then, of course, a few hours of swimming. Tonight we will all enjoy her favorite food: dad's homemade seasoned beans and rice. She'll blow out candles for the 2nd time today, hear the traditional song for about the 30th time today and then let loose on a cookies and cream cake. She'll open a few presents and then head to the bath/bed routine.

Vacation tomorrow! We'll post some stories and pictures when we return.

Cheers to you my girl, my hero. Today and every day is yours for the taking.

Thursday, August 14, 2008

Make a Careful Choice This Weekend

Here a few links of explanation. If you click them, please read the last 2 in particular, which are responses to an editorial and to the movie itself respectively.


National Post Editorial

Response to National Post

IA Town Crier

The last 2 opinions were penned by parents of children with Rubinstein-Taybi Syndrome.

Please leave tickets to this movie unsold.

Sunday, August 3, 2008

Gauntlet Retrieved

Addie swam today. That sentence sounds very blase and old news until the verb is carefully considered. She swam. She's played in the water, of course. She's walked in it, peed in it, ran in it, drank it, experimented with it's power. Sure thing. Everyday she does these things, without a doubt. Often I get the feeling that her life depends upon it, at least her joy of life, anyway. But today is the very first day she swam in it. And to this mom, it feels like her sweet darlin' just got the first taste of her own limitless power, you know - like first steps.

I have mentioned all too often her affinity for the viscous classical element. Though I have to say her appreciation for the other 3 have not gone unnoticed by her family - she loves to roam the earth, picking up sticks, enjoying gravel and dirt, following the haphazard pilgrimage of a tiny brown ant with her riveted gaze. And she becomes surprisingly vocal when it's windy, humming and working so hard to get the sounds out that she seems to believe the wind commands. Fire for her is a mesmerizing minute or two, but then becomes a challenge - when you blow out fire, in her experience, cake comes next.

From day 1, or perhaps before, water has been her love, her peace, her obsession, her thrown down gauntlet, just like any true love. 'Perhaps before' I say because it has been noted that a number of pregnancies that resulted in a beautiful child with Rubinstein-Taybi Syndrome also involved excessive amniotic fluid. Though this was not documented in my own pregnancy with Addie, part of me suspects that she either enjoyed excess and became a bit dependent or awaited birth through scant supply and is now making up for it. Truly, though. From her inaugural bath, we could easily tell we had a water baby on our hands.

We did the mommy and me water time when she was a baby. She's had swim lessons, both adaptive (for special needs) and regular private lessons. But our goal was to keep her where she was most happy, to be able to watch her smile and squeal and play so hard she didn't even know she was wearing herself out until it was too late, eyes clamped for the count, sleeping heap smelling of chlorine. During the school year we have her in a swim skills class mainly for safety; the girl believes that water will never, ever fail her. Which is both motivating for her and terrifying for us.

I've posted pictures and video from the pool where we spend many of our summer leisure hours. It is zero-depth, which to me is a confusing label for a pool that is constructed like a gentle lake beach - it gets gradually deeper with no drop offs. Addie has a spot that she marked off as hers at this pool. She has gotten bolder and bolder with each visit, which can sometimes be 4 or 5 times per week. We stay from about 10:30am to 1:30pm, with adult swim, snack and lunch breaks mixed in.

I imagine it's because of a lifetime of therapy, but perhaps it's for other reasons this lady might choose not to think about so as not to have to consider whether her own level of protectiveness is questionable, but Addie prefers not to have me interact with her in the water much. She'll accept short bouts of play and affection from me, but she has the air of someone with something they need to do in the water and barely tolerates my interruptions. Honestly, I feel somewhat patronized when I deign to simplify her relationship with water down to tossing a ball or splashing or singing "Pop goes the Weasel." She mostly plays/works independently under my watchful, ready to jump eye, thinly disguised as a relaxed, infinitely interested eye.

Recently she broadened her territory and had begun this sort of diving motion. She throws her upper body forward towards the deeper part of the pool and kicks as though she thinks she might fly. Sometimes her arms stay forward, sometimes they snap back behind, faithful that the aerodynamic position will have some purchase in the water. Her face goes under. She comes up, blinks and tries again. This has been stopping all thought, conversation, breath, blinking from me for a few weeks. Nobody showed her how to do this, she has never taken class in a zero-depth pool, this was of her own invention and it was clear she would stand by the method. I watch silent and still, praying, bargaining - if such a thing would work for anyone, make it work for Addie. If it doesn't work, help her think of another way. Anything, just don't let a moment's doubt befall her. Whatever happens, let this invention of her own, and not of an instructor's, be of value to Addie. Let it be a window for her into her own limitlessness.

And today was Sunday, an odd day for us to be at the pool. We had our nieces with us for the night and had some time before my sister and her husband would come get them. It's a luxury for me to have my husband at the pool, another person for Cate to negotiate snacks and play with, another person to be vigilant over Addie. And then we had my teen aged niece and her kindergarten sister with her for more eyes, more entertainment. I happily found myself redundant so I thought I'd find a lounge chair, relax and just peek when necessary.

But as I was still formulating my plans to veg, on my watch, Addie did something that had me shaking my floppy head, eyes bouncing, tongue wagging, stars coming out my ears like in cartoons - I hope you're hearing the indescribable sound effect now. I did not believe what I saw. I was still and silent again until I saw it a second time, breathing only enough to prevent a distracting death scene. Then I called my husband over, not explaining much, and needed him to validate what I saw. He did.

Addie threw herself forward, kicked and scooped with her hands. Her body was not completely horizontal and her face was under the water. But she moved from A to B, with no part of her strong, now controlled body touching the bottom of the pool. It didn't last long and she was up and blinking quickly. But by the third time, I was not going to let it go unwitnessed. I grabbed her and kissed her. All I could think to say was "You swam!" We talk about swimming every day, it has just meant going to the pool in the past. But I think she got the gravity of my short statement. She tried, she tried, she tried. Her trying went from week to week. I don't doubt she thought of revisions before she fell asleep at night. And today she did it. She reached her goal. She got no help from anyone, no one told her what her goal should be, she set it herself. She got the idea, she formed a plan, she practiced, she persevered, she failed, she revised, she tried more, she succeeded.

She knows what she has done today. All evening she's had that same tired, deliriously content look my husband had in October last year after he became a marathon finisher. She is not unaware of the personal pay-off of her dedication.

I talk sometimes about when I feel the differences between my special needs child; my non-verbal, physically and cognitively different child and typical children, the realization of the two, often separate, worlds. Today I felt a difference. The difference today is that before she was even 5 years old, my girl picked a goal, worked tirelessly at it for months and achieved it. Correct me if I'm wrong, but isn't that rather mature?

Naa, don't correct me. We're on top of the world right now, and we don't give a *&%@ which world it is.