I’m sitting here enjoying the aroma’s wafting from the kitchen, I’m baking some boneless chicken breasts, making pasta and corn and peas for dinner tonight. This leaves me time to relax and not work too hard which is good because I had to supervise the kids making breakfast today, waffles (from scratch), bacon and two different kinds of sausages (links and rounds) for breakfast and all of it made by the kids.
I only finished the clean up at 4:30 because there was waffle batter on the counter top, the floor, cupboard doors and even the wall. THE WALL?? Seriously, how does that happen?
Anyways it was a huge undertaking and I feel drained, which isn’t a good thing for a Sunday evening, I should feel refreshed and ready for the new week and instead I’m feeling like it’s Friday night and oh man do I need a nap.
This doesn’t bode well for this week, that’s for sure.
Today I’ve played with Dev as well, we worked on his homework and we managed to sneak in a few powdered sugar donuts and some mini fudge cakes as well. Actually it was Sean who snuck those in, I admit that I had two donuts but that’s it.
Dev laughed when he saw the snacks coming out, and it was the cutest little conspiratorial laugh that I’ve ever heard.
A person I met through the Facebook group for Parents of Kids with Cerebral Palsy is having a very difficult time with her son. His tone is getting very stiff and he’s been sick and in the hospital on and off since Christmas with pneumonia, viral infections, bowel issues and now a UTI. This poor kid is having such a hard time of it and it breaks my heart.
On top of this now she is getting sick as well. This is such a hard thing, and since Dev‘s tone has been more stiff lately due to the cold, which means that my morning routine has an extra 15 to 20 minutes added every day to get in the extra leg stretching time needed to loosen the poor boy up, I get why she’s so worried about his tone.
I’ve always been very thankful that theside effects from Dev’s CP are minimal. He is able to eat orally and while his tone is high it isn’t so much that we’re considering surgery or other procedures to lessen it up (such as botox injections and casting).
I’m also thankful that he’s a happy kid, which I worry may not be long lasting as he gets older. I look into his big blue eyes and I worry that one day he’ll get ‘moody’ because of the difficulties of his life.
I fear that one day I’ll have a screaming, moody teen on my hands that not only is having trouble exerting his will due to the hormonal imbalance that comes with that steady injection of testosterone that happens as puberty hits, but that added to his lack of communication skills and it all adds up to one serious melt down.
Last night I watched an episode of Law and Order in which the parents wanted to have a controversial procedure performed on their own disabled child, one that would remove her uterus, breast buds and ovaries. They would be performing hormone therapy that would in fact leave their child a little girl permanently, and the sad thing is this procedure isn’t a figment of some writers imagination. I’ve heard of this before and it saddens me.
I’ve read parents justifying the reasons for this procedure, but all of it seems to be about them. I can see how it’s harder to have the same feelings for a helpless adult as it is for a helpless child. The farther that Dev gets from infancy the more jarring it is for me when I encounter children his own age. When I see them running and talking and acting like all 10 year olds do, it stuns me that he should be at this stage in his life.
He is still like a baby to me, and to most folks who know him.
Now don’t get me wrong, I’m not for this procedure, far from it. It reminds me of the sterilization procedures that were performed on the mentally handicapped in the 50’s. Sure at the time they thought they were doing the right thing, but now we look back on those medical professionals as butchers and we feel that it’s a criminal act.
What will happen in 30 or 40 years, will society feel the same about these procedures?
Just because a doctor will perform this surgery doesn’t make it right. And honestly it terrifies me that there are doctors out there that will do it. My heart breaks for those people who will never grow up. I can’t imagine being stuck as a child for my entire life, and it seems to me to be a form of abuse against disabled persons.
Am I crazy? No, I don’t think so.