No Thank You Labels.

And this is Lia, she's 4 months old. Awww how cute! Etc etc etc. This is all that is needed to introduce a normal baby. Her name and age makes her who she is. A "special needs" baby? The name and age comes last. First it's usually a list of incomprehensible medical terms. My baby was born with this and that and oh yes, his name is Leo. This has really been bothering me lately, that my son is defined by some ambiguous medical label that immediately alienates him from every normal reaction. It bothers, because to me, he is who he is. A sweet, happy baby that tries his hardest to make us proud. Not some kind of medical anomaly, or a statistic. He is unique and mysterious, just like any other infant just starting out in life.
Lately we have been talking more and more about his diagnosis and the scans that they have taken of his head when he just a couple days old. It all seems like some kind of misty nightmare that lurks in the mind; strange and surreal. Did it really happen? Is it really true? How can we let machines and tests define our son? Well the answer is that we can't. Because so far, he has proven all those wrong. Yet there is still this sense of unease, like we are hoping for something outside of ourselves to tell us that it's all going to be ok. Or even better, someone qualified and with data to prove it, of course. We want to grasp at anybody, or anything to heal our hurt and take away our deepest fears. Someone else to shoulder our pain and sense of helplessness. Someone else to make it better, and most importantly, tell us what to believe and expect. Chances are, you take your kid in for a check up-the doc says, give it a couple days, and the sniffles will be all cleared up- life will be back to normal. You know what to expect and you trust that it will be so. Whew, that's peace of mind. With Leo? No way. Nothing to expect, anything can and will happen. No one to tell you it's all going to be ok because here is his label, and here is what it says about him in some medical textbook. Probably all parents have to do this at some point in their children's lives, they have to let go of all expectations, fears and security. Basically? You have to let you kids live.  Christmas is usually when we think of and celebrate Christ's birth, it's also a time when we should remember his mother, and her parents. At the age of 3, they let her go. They took her to the temple and gave her up, because they knew she was "special," that she had a different destiny from other children. They just knew it, not because they were told to, the responsibility and faith was all theirs. This is what I pray for us. That it doesn't matter what it says about Leo in his extensive medical files, because that isn't where I look to define him. I look at his smile, listen to his giggles, and that is enough for me. Don't put a label on my kid please, but look at who he is, here and now. Who cares about tomorrow?