Statements of Certainty

Once upon a time, the doctors looked me in the eyes and told me she would most likely not make it through birth, yet if she did she would absolutely be born grotesquely deformed, in need of serious life-support, and a great burden to all those who must care for her. They then proceeded to council me on the merits of abortion in cases such as mine.

My response? "If she's likely not going to make it through birth anyway, why must I interfere with the matter? Let's just see what happens."

It's funny in a not-so-funny sort of way, because they didn't even know what was wrong with her, at the time her syndrome was still unidentifiable, yet they were so sure of their statements.

Just following her first birthday, Alexis and I had to meet with a group of people from the state. They needed to document her medical issues, how much nutrition I was pumping down a tube into her stomach daily, who she was seeing for physical therapy, occupational therapy, speech therapy, and feeding disorders, what we had accomplished over the past year, and what our next six and twelve month goals would be, amongst other things. Of the group of about seven, only one of them had actually worked with me and Alexis. Two years later, the one who knew us revealed the other six had left the meeting stating my daughter would most assuredly do nothing for the rest of her life except lay on her back and stare at the ceiling.

When she was two-and-one-half years old we were sent to a specialist. The doctors wondered if part of Alexis' smallness might be due to a tumor on her pituitary gland. We had to go in for an MRI. We never did see the specialist after that, for instead of finding a tumor they discovered her top three vertebrae were formed quite poorly and were impinging her brain stem. The neurosurgeon said it was a progressive issue and on a scale of one-to-ten, ten being the most serious, hers was a nine. He then sent us home insisting I make sure her head doesn't bend forward in the slightest, otherwise she would die. I'll never forget the scene a few months later when Alexis fell off a chair at the circus. It took a few moments for me to break through my shock and recognize she was still breathing, moving, and even crying, after which I did the same.

Our life has felt riddled with these sorts of situations. The irony to me is I can say with certainty there is nobody in the world who is qualified to predict my daughter's future, except for one person; Alexis. And since day one, the day she was first met by a human being - which happens to be the same day doctors and I came to realize she had been living within virtually no amniotic fluid, while a blocked-up, nutritional-less umbilical cord coiled snugly around her neck - she let it be known she wanted to live.

The summer following her third birthday we were at a neighborhood gathering. They had one of those blow-up, bouncy things the kids like to crazily jump around in. Alexis indicated multiple times she wanted to go play inside it with all the other kids. I think it took about two hours of her persistence for me to finally give in. I intended to stay inside with her, yet she indicated she would prefer to do it herself, thus I took a deep breath and let her give it a try.

As I watched her sway on top of the poofey, red, plastic-wrapped air I not only noticed the other kids seemed to instinctively land in places where she was not, I also observed my daughter laughing, having fun, enjoying some typical kid-time, and everyone living through it. Standing there, watching her in joy, I couldn't help recalling our first yearly meeting with the state, and thinking, "Ha! I know you guys didn't write down the only goal of importance to me, even though you said you did; I know you thought it silly, because I wanted to replace your suggestion of 'Alexis will play Paddy-Cake three times a day'  with 'Alexis will smile and laugh every day'. Yet, what you don't know is I was serious, and we accomplished our goal anyway, state approved or not."

At the moment of this writing I feel a bit of deja vu, for I find my thoughts winding through paths of similitude. They are directed to our public school system, and run along the lines of "You didn't think I was serious, did you? You didn't think I knew what I was seeing in my daughter. You didn't believe she was capable of more than what you were offering. You thought I was just a silly lady wrapped-up in a bunch of nonsense." Then I sigh and realize it's alright, because they didn't really know her, nor me. Additional thoughts adding to my present ground-hog-day moment include, "Thank you, School System. I am incredibly grateful you denied our request," and I wrap it up wondering if "perhaps this is what they mean by 'Love Thy Enemy?'," for the system is not able to offer Alexis an educational experience exceeding in quality what she is currently receiving, and she would not be receiving what she is receiving if the school personnel had not progressed with my request exactly the way they did.

Thus, again, Namaste to all who contributed in helping Alexis become home-schooled! We find ourselves beginning a new year with a pretty cool schedule. Alexis' job working alongside of me has morphed into her own job at the Leonardo Museum. She works twice a week, four hours each day. The Urban Arts Gallery at the Gateway Mall is patiently waiting for us to finish our most recent batch of Home School Art, as they want to replace their artists' product line's with things fresh and new. Alexis got a refrigerator for x-mas. For the first time in 13 years she can now, when ever she wants, independently pour herself a drink. She also got a step stool, which allows her to wash her hands by herself. Again, another first. And another is she has her own vanity where she gets herself ready in the mornings. She combs her own hair regularly now, and it looks cute when she does. As far as academics are concerned, Alexis continues to make advancements in reading, writing, talking, and walking. We'll work in posting videos at some point, in the mean-time know our focus remains on providing a little girl, who, unlike Peter Pan, said she wanted to grow up, the opportunity to do just that.

Happy New Year!
With Love & Gratitude,
--angie