Tag Archives: friendship

Rare, but together we are mighty

When your child is diagnosed with a rare syndrome, you are at first overjoyed: YAY! We know what “this” is! Then you are back to being overwhelmed: What do they mean they don’t know what “this” is! A parent who spent years searching continues on, looking for answers, looking for a cure and (most desperately) looking for someone who has been there before who can give you a road map.

I spent the first five years of Bridget’s life without a road map.  Not one doctor could tell me anything other than, we know something is wrong but we don’t know what it she has. Years of seeing doctors and specialists who would tell us that we are doing everything possible to make Bridget the best she could be, and to keep up the good work.

Then we were diagnosed with PACS1.

Journey over, right? Um how about it was just beginning. Continue reading

If we were having a glass of wine

If we were having a glass of wine, I would share with you that I am excitedly looking forward to Saturday. It is kind of weirding me out, the fact that I am actually going to attempt to run 13.2 miles (hell yes, I’m counting the 0.2). I know realistically I will walk some of it, but I’m okay with that.

I would remind you that my first goal was to finish the race without being last. That goal evolved to just finishing the race. Now the goal is to finish the race without needing an ambulance.  I would promise to let you know if you need to attend my funeral. I would also promise to stop talking about the race. Continue reading