My Comfy Spot

I have been sitting in a comfy spot recently. This comfy spot consists of pretending nothing is wrong with my son. It is so easy to do. It's comfortable. Knowing that he has a fatal disease is always in the back of my mind somewhere but I am not dwelling on it right now. Right now, we are living it up and enjoying life! Plus, the simple fact that I have 6 children keeps me busy enough to not have to think about it all the time.

Today, I made appointments for all my kids' yearly check-ups. I usually try to schedule them 2 at a time so I only have to go 3 times instead of 6; it's just easier that way! This time however, I requested that Ben be seen by himself. I have a lot of questions for our pediatrician that I need to have answered. One of them being, why haven't we heard from him in the 7 months since our diagnosis. I mean, if I was a doctor and had a family that I have been seeing for 15+ years, I think I would call or something after learning one of them has been diagnosed with a life-threatening disease. But I guess that's just me. I am no doctor, just a mom. I was grateful that Ben is also 1st out of my 6 to be seen. This way, I can get it all out in the open before all the other children are seen.

Ben will also go back to the place where we have ordered his night splints in a few weeks. They have been ordered and we will go in for another fitting. We will then begin wearing them each night, all night, to keep his heel cords stretched. This will prevent the need for surgery and will also keep him walking longer.

I made the mistake this morning of reading a thread on facebook from another DMD mom. I have been in my comfy spot for about 2 months, all the while still researching and reading everything I can on DMD. This morning, however, I read someones' status about remembering the life of a loved one, and not their death. Then I read the comments. Bad idea :o( These folks have all lost sons to DMD, and some of them were young. I felt myself slipping away from the comfy spot.

But, I like it there too much and I think I'll just stay for a while.

Got my book!

I got my book today! I am very excited to read it (maybe a little nervous too). This book was written by a fellow DMD mom, Misty VanderWeele, whose son Luke is 18. You can get a closer look at the book on my sidebar. Thanks Misty, for shedding some light into your life as a DMD mom. :o)