6.3.10

Why I Wish My Son Were an X-Man

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?

11 comments:

  1. Oh hun-that is too much for one person to be going through. I am so glad at least you shared it.

    Even with healthy children we have worries, so you must feel so helpless.

    Not much to say just to send loads of hugs your way!

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  2. Thanks Susie,

    Most days I'm okay. We try not to treat him like he's sick or special in any way. But today with the up-all-night and then the covered in hives I lost it a little. And then as I was looking at the hives I noticed new spots, which made me lose it even more.

    I've been meaning to blog about his NF since I started and this is not the way I intended to do it, but when I sat to write my post it was all I could think about.

    He may sail through life with little to no complications from his NF, but he may suffer severe complications. It's really hard not knowing at all what to expect.

    I know there are tonnes of parents out there whose children are suffering from things much worse, but it's not like that gives me any comfort. It just makes me sad for them too.

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  3. oh sweetheart, you poor thing, what a thing to have to go through. I can't imagine the worry and pain you go through. ((hugs))

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  4. With NF I think the most nerve wracking is the not knowing really.

    I think it helps though to share with people both virtual and real life so they know what you are going through. Sharing makes things bearable.

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  6. I have no words, just much love and a big virtual hug for you.

    xx

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  7. Thanks everyone.

    Like I said I hadn't meant to post such a morose post about his NF. Hadn't even meant to post it yesterday. We've known for almost a year now though they're waiting until he's three to officially diagnose him as there's a very slim possibility it could be something else.

    Thanks for your support. Most days it really doesn't affect us, though I admitted to my husband last night that I
    think I do "baby" him more because of this (and because he's the baby, of course).

    The most frustrating thing is just not knowing what will happen and also not knowing how what I do will affect what happens. The tumors are hormone-responsive, so do I keep him away from Soy and Dairy or not? Vitamin D has been shown to be a hormone suppressor, but too much sun causes skin cell damage and results in more spots and potentially skin tumors for him, so do I continue his Vitamin D supplements and keep him out of the sun? It just goes on and one. Because it's such an unpredictable disorder it's really hard to find hard and fast proof that something is either "good" or "bad" for him.

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  8. I've just come across your blog as an adult woman, living with NF recently married and thinking about family planning. I have been lucky, and only ever had cafe au lait spots and freckles in the armpit/breast/groin area. Never had a tumor, never faced any major learning problems. While short in stature and clumsy, I never felt different. I do now as I look the have children of my own and the risks I am taking.

    Although, if you have any questions, please contact me - I am 31 and still remember all the tests and questions I had as a child...but was still so fortunate to have a very, very mild form of NF1 - a mutation as well, not inherited.

    Sadly, while doctors abound have all heard of it and nod their heads when I tell them because it's more common than people think (1 in 3,500 babies born)....it still seems so unknown.

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  9. Hi,
    I am so sorry for what you are going through. It's worth mentioning though that absolutely nobody can forsee or control the future, whether you have a condition or not. If anything, it is my sincerest hope your son may see life from a different perspective.

    Keisha

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  10. Hi I know EXACTLY how you are feeling reading your post is exactly how I am feeling about it today my son is 11 months old and how you put about the shirtless body and having kids of his own it was like you were in my head!!! The not knowing is the WORST. His nf was a mutation as well and I pray every night the spots is all he will ever have....
    Janice

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  11. Hi I know exactly how you are feeling. My 11 month old son has nf as well I pray he only gets the spots and nothing else but it's such a crap shoot. I'm suppose to live my ut whole I've with this black cloud hanging over our heads waiting for something else to pop up. I know and feel the same way about the shirtless body and having kids of his own. I feel so helpless your post couldn't have said it better it was like you were in my head. I want to keep in touch with you and we can face this journey together!

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