Noah, our four and a half year old, has been having a rough year. Between the visits to the doctor for his heart arrhythmia, the scleroderma morphia that covers his left eye down to the bottom of his nose and the treatments for it (it has virtually disappeared, but the treatments will go on for the next 7-8 years, and he has to have monthly bloodwork to keep an eye out for potential side effects), and the ptosis in his right eye and the surgery he recently had for it, the kid is starting to feel a little beat up. On the one hand, things are under a lot better control than they were a year ago – it’s good to see the treatments working and the eye surgery a success. A year ago we didn’t know what was going on and that was scary. On the other hand, Noah is getting old enough to have a lot of thoughts on the whole deal. It’s not unusual for him to ask me why he has to have so many shots when his brothers don’t have to, why he has marks on his face when other people don’t, why the scars from the surgery aren’t disappearing faster, and so on. The other day I was driving him to preschool and out of the blue had the following conservation.
Noah: I hate my hurt eye. (his eye that had surgery on it is still healing and sometimes dries out, he’s also self conscience about the marks from the surgery)
Noah: I hate my hurt eye.
Noah: Because it hurts.
Me: I don’t hate your hurt eye. I think it shows that you’re very brave and strong because a lot of kids would be afraid and not do very good if they had to go to a surgery but you were so good and did everything perfect. You’re very brave and strong. I really like that about you.
Me: Yes, I think you’re very brave and strong and I’m very proud of you.
Noah: I still hate my hurt eye.
Oh well. One of these days it will get better. Yesterday was a rough day for him as well. His monthly blood work was last Friday; of all his monthly visits to the hospital, this is his least favorite and it didn’t go too well. He’s really good until the needles are in sight, and then he freaked out. Well, we got it over with, breathed a sigh of relief and relaxed because it would be another month … but then we got a call on Monday that something was wrong with how the blood work was collected that made it unusable! So the poor kid had to go back again yesterday and do it all over again! He was actually better about it than I was – I’m still kind of irritated! To make up for it, we spent some time hanging out afterwards, just the two of us, getting milkshakes and checking out toys.
In other Noah news … he’s loving preschool! He got homework the other day and was sooooo excited! That won’t last! Although, I do have to say I was a little concerned – Heidi put a Phillies tattoo on him while he was there. I’m not comfortable with that kind of indoctrination of my child! Our household has two approved teams for cheering: the Mariners and the Red Sox!