Wednesday, July 06, 2005

Apraxia

My blog is pretty light-hearted, and I keep it that way on purpose. But I had one of those moments today, and I want to talk about it. When Chet was diagnosed with aplastic anemia, I immediately started searching the internet for information about causes, cures, treatments, etc. What I found scared me so badly, and I swore that I would never again do that until after we had a thorough discussion with a real doctor if we were ever given another serious diagnosis for any of our children. So when he was diagnosed with apraxia a year later, brought on by the aplastic anemia,I never sought out internet information or other people dealing with it. We found that the aplastic anemia was so rare that we have never met another family who has a child with it. When we were told how rare the severity of Chet's apraxia is, I think I just assumed I wouldn't be likely to meet other families dealing with this struggle as well. (He has the worst case his therapists have ever seen, and he will likely never speak in a "normal" manner.)

Today I was surfing along through some scrapping blogs, and I found MOMS of kids with APRAXIA. The words jumped out of the screen at me. I haven't even chatted with these ladies through email yet, and yet I feel a connection to them that was never available to me when we were getting through the worst of the aplastic anemia. I knew that knowing other families with the same diagnosis in their lives is very important when you are dealing with any critical/terminal disease or development issue, but I didn't realize how much I was missing until I found those blogs today. I feel like I have been given a gift.

I already had the "Making a Difference" section of links on my blog with the organizations that have been key in Chet's journey. Today I added some more, and I will surely add more in the future. My blog will continue to be light, happy, and full of the day to day life things that my family and I enjoy, but occasionally I will add a smattering of the day to day not-so-light things, and I hope somebody else might stumble upon them and not feel so alone in their diagnostic journeys.

1 comment:

Sue said...

Jenn - I am so glad that you have found some people you can connect with!!

Best of luck on your journey! I love reading your blog (lighthearted or not).