This post might just make me cry in public (it’s a slow day at work) and that’s something I try not to do. The point of this blog has always been to push myself though, and today is the day to list and own my feelings about a few things.
I am disappointed and sad that my child has a rare metabolic disorder.
I don’t talk about it often, because I’ve found a way to place it in a harmless section of my mind and not really confront it. I’ve also located the silver lining of the disorder, but more on that in a minute.
I’m angry that my new mom experience was ruined by having to be admitted back into the hospital when he was only 4 days old.
I’m still upset that my breastfeeding got off track when we were admitted back into the hospital, and that I never really recovered, and lost my milk (and my hair) due to stress 2 and 1/2 months later.
I’m afraid that my marriage isn’t the same because of this. The stress that it’s caused, has changed me since I had my little man, and my husband notices.
I’m worried that I’ll never feel like myself again.
I’m afraid to have more children. My son’s disorder is recessive apparently, but it’s still a 1 in 4 chance another child would have it. Those aren’t odds I like.
Now to fill in the gaps for the readers, and tell you about the upside of all of this. (I said I would own my feelings, not wallow in them)
My son has methylmalonic acidemia. MMA for short. We were told the odds of a child having this disorder is around 1 out of 50,000. I myself haven’t ever bothered to google the odds, the scary stuff on WebMD about it was enough to make me stop google-ing it altogether. It isn’t life threatening unless undetected and untreated, and they do newborn prescreens for it now. My son’s case turns out to be very mild, but it was a long road to figure that part out. He gets B12 shots in his legs to help manage the acid that builds up in his blood. The short version of what this disorder does is that he can’t process proteins the way most people do. The acid from the process our bodies go through to break down protien builds up in his blood and if untreated could cause developmental delay, seizures and coma.
My son is perfect. I tear up as I type this because it’s true, and because I’m still greiving over him having a “disorder” at all. No parent wants their child to have a life long medical condition to deal with. He has taught me so much about being tough and brave, and he’s only 15 months old. This baby has been poked and proded since birth. He’s had more bloodwork and tests than most people do in a lifetime. He never cries when they draw his blood…not unless they do it out of the top of his hand (don’t even get me started about that incompitent ER nurse!). He flirts with the nurses every month when we go in for our blood draw. He’s such a happy baby!
He’s never once shown signs of his disorder. If it wasn’t for the test results I wouldn’t believe he had it at all.
The silver lining is this-since they started prescreening about 4 years ago, and they found this at birth, he won’t suffer any of the bad side effects of having the disorder go untreated. He won’t have low muscle tone, or be developmentally delayed. We won’t have to watch our son get sick but not know why.
Every time we travel to Seattle to see the specialists, they tell us bubba is remarkable. He is ahead developmentally. He is…perfect!
The end. For today anyway…