Jojo's HR is in the 50's to 60's as he sleeps tonight. I think he's back to his baseline. There was no out-of-town trip for him this week. He was supposed to go to a dentist 2 1/2 hours away last Tuesday but we had to cancel because he was just getting over his little illness. We did go to Nana's that evening for a little family get-together. Then, today, his Daddy and brother took him to Wal-Mart just to get him out of the house.
Jojo has been extremely chatty at night just before he goes to sleep. He thinks of games to play or contests, and asks a lot of questions. Tonight he asked me why his muscles were not working right. Not an easy question to answer. He moved on to say that the muscles in his eyes are working, and in his nose (he meant that he could smell, because he can't wiggle his nose anymore), and in his mouth (again, he meant his sense of taste is fine, because he can now hardly smile or make the sounds of p, m, v, b), but not his "walking muscles." And in my head I was saying, not only your walking muscles, neither your rolling over muscles, sitting up and standing muscles and chewing and swallowing muscles, and breathing muscles are working right.
I hate SMA.
I find that most of the time, I am inure to the "evils" of SMA. I can deal with my child's severe disability. I know what to do when he gets into a "crisis." I have accepted how our family's lifestyle is different from those of our friends' and coworkers', and I am okay with that. But when I see Jojo recognizing his limitations, it hits me hard. And when I read of yet another child losing his life to SMA just like little Ollie did, two days before his first birthday, then I am reminded of how fragile my son is. And I get scared and sad again, just as I did when Jojo was first diagnosed.
I wish that all the lawmakers would hate SMA enough that they would go on board with the SMA Treatment Acceleration Act.
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I hear ya, its sad, Sky has asked a couple of times why he has a trach, but has shown no intrest in his legs yet, but Im r, sure that will come one day. All we can do is love our kids as much as we can each and every day. Im Thankful for my Sky and all the amazing kids we know and parents, but it does not make the end result any better, we need a cure and we needed it years ago.
ReplyDeleteIm glad jojo is feeling better Sending you both BIG hugs
Happy to hear Jojo is feeling better.
ReplyDeleteIt is hard to have your child ask why they have the difficulties they do. Junior doesn't seem to notice his limitations but does now get upset when people stare at him.
Lots of hugs and prayers for a cure.
Drew has also been asking those questions that are so very hard to answer. Last Sunday after church school he asked, "Nana, why does God want me to have SMA?" Later he asked, "Nana, will God be mad at me if I'm jealous of kids who can walk?" Interestingly, he seems to direct these questions to me only. I think he understands that they would be too hard on his mom. (Little does he know that they break my heart too.)
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