Friday, June 20, 2014


So I had kind of been going back and forth since January when we initially got the diagnosis on whether or not I wanted to fully accept this thing. It's funny how parts of me think I can just ignore everything and it will somehow feel better or go away. And it does make it feel better to not think about doctors and conditions, etc. But it doesn't really solve anything.

I would go to the website to research FA, but get sad and leave. Think about doing fundraisers, get sad, leave. This is the repeat pattern of life lately. I guess it's part of accepting something you can't change.

Well, I recently decided to join the online family support group and was added to a facebook group. They call themselves your FAmily. I had no clue there was so much support to be had. Since I posted my initial post on the site, "Hey I'm Jessie. My son Carter was just diagnosed, blah blah blah," I've gotten like 30 responses of people sharing their stories and giving me encouragement. I've also gotten several friend requests and actually had a very sweet woman in NC give me a phone call and talk to me giving me advice like she was my own mother. I can't believe how supportive they are. I've also seen so much cool stuff about camps and other things to do for the kids.

I'm letting Carter in a little bit at a time. He doesn't seem to be really aware of his condition, or he just doesn't care right now. He's not really bothered by anything, other than being careful not to bump his head. Or he will alert me if he's bleeding/if one of his friends knocks one of his teeth out. That sounds bad, but they were two loose front ones. Totally normal.

I made him a little brochure. Yes I have free time. And it explains a little about DNA because I want him to be smart. I even talk about copying  errors. So. He of course took one look at it and put it down. Why does my son refuse literature?


The life of a poetic mother who wants her seven year old athlete son to love the arts.

Well anyway, his spirits are high and that's what matters. He's not sad or scared or anything of that nature. So I'm feeling good about that.

One update is that I am in the process of getting a consult with the Cincinnati Children's Hospital as they are one of three in the country who specialize in treating FA patients. While I LOVE the staff and our doctor at MUSC, I just want to make sure we are COMPLETELY covered in knowledge and expertise. The doctor will look at his records, let me know if insurance will cover our visit, and then we will be off. Possibly. I also found out there is a network of retired pilots that will fly you across the country for free if you need to go to a hospital. Pretty cool. Even though I'm not sure I want my first flight to be in a tiny airplane.

1 comment:

  1. Jessie this is so incredibly brave of you. I appreciate you being so honest with us. We all love you guys so deeply. It is so AWESOME that you are finding that sort of support. ��