Wednesday, December 4, 2013

Who he is

The first word that comes to mind is numb. When we learned of Johnny's possible diagnosis of a trisomy, I absolutely felt numb. I had heard people say it before when faced with some sort of traumatic news, but I never knew how it really felt until faced with the possibility of losing my child or having a serious lifelong condition. I wanted to scream "NO!", but all I could manage was quiet sobs and choking exclamations of how I didn't want this. My head felt empty. It was as if my brain had disappeared and in it's place, there sat a miniature version of myself, hugging my knees, and thinking, over and over again, "Down syndrome, Down syndrome, Down syndrome." It absolutely engulfed me. I functioned as I left the office, told Matt, picked a few things up, got the girls, and made my way home. This numbness continued. It was hard to deal with the prenatal diagnosis. We didn't have a face to look at or a name to know him by or a hand to hold, but we had an extra chromosome. And at that point, if I could have, I would have reached through the depths of my body, into his, and plucked out every single last one of those chromosomes and thrown them far away from my sweet child who, in my eyes, had done nothing to deserve such an outcome.

People tell us all the time that he is lucky to be born to us. That we are the perfect parents for him. It feels good to hear, all parents that work hard for their kids want to know that other's see what you do for your children. It's nourishing. But I don't want people to think that we are the better ones because of who we are. Truth is, we are the better ones for who he makes us, how he enriches us, and what we have to be because of who he is. Johnny is our son and he has needs. Who Johnny is, the fact that he is our son, and his needs are so distinct to us at times and so entertwined into the nature of his role in our family and our mentality in raising him at others.

He is.

And he has been since early March of 2013. God ordained him as our son and from the micro second of his physical existence, deep in my belly, 47 chromosomes were present in his first cells.

He is our son.

And has been from the beginning until the end of time. God is outside of our measurement of before, during, and after, Johnny was always meant for us. His genetic material, as flawed as some may see it, is ours, woven together to create this magnificent miracle who has my good looks, charm, and love for books and, I think, his Daddy's ability to focus on the tasks and goals at hand.

He has needs.

And we must fulfill those. We work. We play. We get tired. We triumph. We fail. We clap. We praise. We explore. We work some more. We give in for cuddles and tickles and smiles and laughs. But the needs linger over every decision we make. And the brain fears that there wasn't enough work done while the heart fears that the cuddles were too few and far between.

I have a son named Johnny. He is perfectly named. I stroke his sweet face, cover it in kisses, and squish it a few times for good measure. He has eyes that have the distinct almond shape and folds of Ds, but seem a bit bigger to me. He uses those big eyes to bore deep into whatever and whomever he is looking at, trying to figure it all out, imprinting his thoughts into his brain. He cannot help but smile, even as he cries, his little laugh will pop out from time to time as the corners of his mouth turn up for grins through his sadness. His hands are growing wide and chubby making them perfect for grasping grass to shove in his mouth, for clapping to show off, and for the best holiday handprint art. He has an extra chromosome which makes it hard for him to do a lot of things, but given the chance to take it away, my answer would be no.

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