Managed crap

A little over two months ago we sat in a doctor's office and heard, "we'll figure it out." We all left that appointment feeling good. Now here we are. He's still not feeling good, and he's only two weeks out from having the genetic labs drawn. They had to get things authorized, then freaked out because our insurance didn't require a prior-auth. So they changed labs to another and went through the process all over again. I made a whole lot of calls and got a little persistent in my messages. We finally got them done on the 23rd of May. So now we wait...another 8 to 12 weeks.

In the meantime, Jackson was on M-W-F antibiotics to hopefully stave off another infection. His immunologist was hoping for months. He got 6 weeks. Argh!!!!! He just finished another round of 10 day antibiotics and started back on his M-W-F antibiotics a week ago. Maybe longer than 6 weeks this time? It's so hard not being able to give him an answer. More importantly, to help him feel better. What sucks the most is the effect him not feeling great has on not only him, but on our entire family. Hopefully this summer, we will have more help with that. It's time to learn new coping skills and communication skills. As Dave said, yet another appointment, but hopefully a step in the right direction. I also hope that with new skills, Jackson will feel more in control of himself, even when factors are out of his control.

I was having a conversation with someone who works with him at school and the other morning he was pretty tired at school. They said they hadn't seen him like that before. How do you help someone understand that sometimes you can only "fake it until you make it" for so long? Jackson works so hard every single day to just be, and sometimes he's had enough. We see it a lot towards the end of the day. It's why he comes home, grabs a blanket and vegges for a while. But when you compound all of the "normal" reasons for needing downtime with his other reasons, it's a lot for an 11 year old to manage. Frankly, it's crap. But we do it, every day.

I heard an awesome story about Teddy Roosevelt the other day about what his dad said to him when he was really struggling with his asthma. Basically his dad told him that his mind was amazing, but his body wasn't keeping up. And in order for his mind to continue to be amazing, he would have to work on his body for his mind. When I heard this story, I immediately thought of Jackson. Maybe he'll outgrow whatever "this" is. But in the meantime, it's just crap and I don't have to like it.