Trey's Saturday morning soccer game.
On Thursday the boys had their weekly art class. I mentioned that next Thursday Trey has to get the the hospital early so he can get back for his last art class. Why infusion on Thursday, my friend asks? Because Trey is going to UNC from April 4-8, so will be missing his Monday infusion that week. This is a GOOD friend who knows what the words UNC mean. Fear. Huge, all encompassing fear. She said something like: “Wow. How are you doing?” And I said fine, because I really have been, which is all too great.
Then on Friday morning, possibly because I have been so stressed with our upcoming fundraiser this week, or maybe because I said what I did yesterday, but the fear came back a bit. Trey did something and the fear came back. I wrestled with it and brought myself back to being okay, but looking back on it, it’s just not cool.
I was thinking about posting on this subject, but was hesitating because of how much fundraiser stuff I have to do. But this morning I got an email from a friend whose son is young and has Hunter’s, but no definitive mild or severe diagnosis, which means she is in the middle of feeling so scared she can barely function day to day. So I decided to blog.
On Friday, I can’t remember what Trey did. But it was basically nothing. That’s why I kept thinking about it. Maybe he wasn’t paying attention and spilled a glass of water or something. Then I get this email this morning and this mum is literally freaking out because her son doesn’t like to get dirty and didn’t want to do what she wanted him to do. I may be simplifying things a bit, but I’m doing it to make a point. People are quirky. Maybe it’s here I should mention that this past week, Avery has clawed Trey’s face so he looks like a tiger and Sadie has been screaming at least 4 hours a day, to a point where I’m wearing her in a backpack a majority of the day and to a point where I almost lost my mind last week. For most parents, this would be negative (and at the moment for me, it was too, and boy do we have a lot of snuggles and conversations to have when this fundraiser is over!). However, it also makes me just go hmmmmm. It would be funny if it weren’t so shitty. If Ave and Sadie had Hunter Syndrome, I’d probably be freaking out more than I did with Trey!
What’s funny (not really, but you know what I mean) is that I used to freak out that Trey’s brain was affected because he didn’t care if he was wet, or dirty, or if his shirt was on backwards. Now this mom is emailing me freaking out that her son’s brain is affected because he’s the opposite of Trey. He REALLY cares about this stuff. I used to freak out Trey’s brain was affected because I thought he was demonstrating signs of aggression that he didn’t used to. Ry told me it’s because he’s a boy, but I didn’t know that. Now Ave is even more aggressive and violent than Trey was at the same age!
Can you imagine if every time your child dropped a piece of food on the floor, every time they had a tantrum, every time they didn’t want to do what you wanted them to do, every time they got mad, every time they forgot a word, can you imagine if, in every single instance that your child was not perfect, you thought your child was going to die? This is what’s it’s like when your child has Hunter Syndrome before you know if their brain will be affected or not.
The fear is founded, in that our children have Hunter Syndrome, and until the age of approximately 5 years old, it is not known whether or not their brain will be affected, so that in every action that they take, it is possible they are demonstrating potential cognitive decline. But it is also unfounded, or at least completely crazy. Just because our kid forgot the word for hamburger or spilled a glass of water, does not cognitive decline make.