Today my baby boy is covered in hives. Again. He's needed his inhaler. Again. I'm pretty sure it's the cashews that caused it. Though he's had cashews before. But then I remember he's had them just once before. And it takes the first time to sensitize him.
Today his face has been covered in snot. He has a cold. Again. And I'm praying it doesn't turn to croup. Again. I spent most of the night up with him. Again. But I'm glad it was a night at home and not the hospital.
Today my baby boy has walked from the living room to the kitchen, back again and then broke out into a little run. For the first time. He's almost 19 months old and we're so proud of him for walking.
Yesterday he said mama. Again. But the last time was 2 months ago. And it broke my heart to hear it and know. My heart broke because he said it or because I know it might be another several months before I hear it again; I'm not sure.
Today I am trying not to worry. Again. About why his stomach seems swollen or his legs turned out or his back slightly twisted. Or whether he'll be "slow" or "behind" or dead, for that matter.
He has allergies and he has asthma and he tends towards croup. He is a bright angel of a boy who can get into the worst kind of mischief and always be forgiven. He is loving and his kisses come with full on contact and tongue. I don't think I've ever seen him angry, except when I have not given him a treat he desperately wants. I'm sorry to say I have seen him sad. Unconsollable tears and jaw quivering have marred his beautiful face. Yet, he is the easiest to comfort baby I have ever known.
Yesterday I thought of how he's not anything like his brother or sister and how they were at his age. Nothing like them at all. And I wonder how two parents can produce three such different children. What twist of genetic fate made one tall and another short. What DNA recombination caused one to be tempermental and another easy-going. And why a little teeny tiny coding error, like using a comma instead of a semi-colon, could make my son a mutant.
For that he is. Of two healthy (I use the term loosely) sets of DNA was produced his slightly modified version. An error that elsewhere on his genome could have resulted in nothing - nothing at all - or maybe a cleft palate or some strange birthmark has instead made him a mutant. Not a super-power kind of mutant like an X-Man, but a boy with a disorder hardly anyone knows about.
Somewhere in there on chromosome 17 - on the long (q) arm at position 11.2 to be exact - a teensy little error happened. Something more akin to a drop of milk on the chin than a full glass of spilt milk. But it is something to cry over - and I'm crying right now - though I thought my tears on this subject were depleted.
My son has Neurofibromatosis. I am scared. I am angry. I am able to joke about his mutant status. But, I want to punch in the face of the woman who stared at his spots.
I am crying. Again. Because I don't know what will happen. Because I have no control over his future. Because right now a tumor could be wrapping itself around his organs and except for a slight swelling in his stomach, I won't know. Because his legs may turn out when he walks because of a deformity in his bones, or a tumor on his hips. Because he may never be able to learn like other children, but until he's older I won't know. Because hidden there somewhere amongst his hives might be a neurofibroma and when it comes there is nothing I can do about it.
I cry because I want my future teenage son to show his shirtless body to a girl and have her be impressed, not curious, or worse - horrified. Because I don't want him to have to decide whether or not he wants children based on the liklihood of passing on a disorder. Because I'm afraid his gentle nature will be ruined by schoolmates if he does turn out to be slow and if they tease him.
I am crying because I can't even firgure out how to prevent him breaking out in hives or how to keep his lungs clear and common colds at bay and I wish that that were all we had to face. But it's not. Is it?
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