Tonight I have some sort of cold, and whether it is the congestion or sore throat--I can't sleep. I'd really like to blame it on that, but I think the real reason is what keeps waking me up around 1:00 am every night...I just can't stop thinking about Connor. I wake up and think "Oh, I need to call this doctor" or " I need to request this paper" or "Should I be investigating that treatment more? Who can I talk to about it??"
I have recently talked to some other parents via chat groups about SMA stuff in general. I think it has been helpful in one important way. It kind of makes what we are going through and feeling seem more "normal." I'm not sure if I am supposed to want to feel that way, but I do. Maybe it is something left over from my teenage years, where we all seek to fit in. Hmmm... I think it probably has more to do with the fact that our whole world has changed.
Speaking of that, I found this incredible poem on a website:
Welcome to Holland
I think this helped with the whole "feeling normal" thing as well, because it really described exactly what we have been going through, and it kind of opened my eyes to the fact that lots and lots of people go through this whose children don't even have SMA.
The other reason I am thinking about Connor is because he has this cold, too. Unfortunately, what sticks out in most of what I have read is that children don't die of SMA, they die of some sort of infection they are not able to fight off because their muscles are too weak. I know Connor could be much, much worse than he is now...but still whenever he coughs I could swear my heart freezes mid-beat as I am paralyzed in fear that this is the beginning of the end, until the millisecond passes and my normal thump-thump returns as I tell myself, "It's just one cough...It's just one cough."
We do have one bit of good news. A couple of days ago we put the big braces on Connor--the ones that go from his feet, have the drop-locks at the knees, and wrap around his thighs. With those on, the locks locked, and the walker, we actually saw our baby stand again. Adam and I were both shocked at how tall our little boy was. Who knew? He was so excited to stand up, too. I know he wants to walk so bad.
It makes me mad at myself and everyone else who said before he was diagnosed that maybe he was just "too scared" to walk. I am feeling a lot of guilt these days. I am pretty sure that when he was walking, he fell down a lot more than other kids...but I just didn't know. He is our first, and I just had nothing to compare him to. I think when I finally did compare him to other kids, I was well on my way of realizing there was something wrong...I saw how fast other kids moved--just a simple swipe of the arm, or jumping up to go somewhere else, and I knew my baby had never and could never do that. But at that point it just added to all the other puzzle pieces that would eventually become our SMA.
But, guilt or not, I am starting to recognize some of the lovely parts of Holland, and I think once we get used to the scenery, we're going to like it here.