This is an excerpt from a recent post on a thread I put on the JDM support page on Facebook. Since this is my own private blog, I feel free to elaborate more, here in my own space. “I have been waiting for the right moment to talk about this on here, because I know […]
Category Archives: dermatomyositis
Today the sun barely made an appearance. Rio says. ” I pway, rain”. I say “ok!”. And just like that, magic happened. She got to feel like a kid today. I love this shot. On another note, Rio was fitted for glasses today. But not before licking the bottom of his bowl of yogurt.
Vivia has over the course of a week, grown gills and morphed into a little fish. I am absolutely thrilled as this type of exercise is the BEST for her. The majority of muscle weakness that the JDM has presented in her body is in her shoulders, and her neck. When she’s in the water, obviously, […]
I didn’t write this, but I had to share because I have never come across something that describes our experience better than this. In case you were wondering… it’s short, and lovely. “I am often asked to describe the experience of raising a child with a disability – to try to help people who have […]
…is scary. Well, It’s Wednesday, and we did not admit Vivia to the hospital for treatment. We have been going through a lot the last couple of weeks, and we still don’t feel a “peace” about doing this treatment path. The doctors could not be more vehemently opposed. The specialists seem to think this is […]
I almost feel like I shouldn’t write right now, because I am totally unfiltered. Normally I like to filter, process, filter some more, and then present my thoughts. It’s Gabe’s birthday. Happy effin birthday, honey. I want this day to hurry up and be over bc it is probably one of the worst days of […]
I’d see the day that taking Rio to his monthly Ocularist appointment would ever take a back-burner to anything else! This morning, I called them and told them I couldn’t make it, which is the first time I have ever done that in his 2 years of going there. I sit here as one who […]