I am SO stinking happy that there are Rett syndrome podcasts popping up. Today, I joined Sarah & Sam on their show which is about bringing families and friends together from the Rett Syndrome community to discuss life, research, and just to have a fun time. And what a fun time it was! These two...
In 2015, I first started asking Grace’s doctors in the UK whether they thought she was developing scoliosis. They took the picture on the right and said no. Knowing what I know now, she actually already had quite a significant curve. Flash forward to moving home to Florida and meeting her orthopedic surgeon at Nemours...
I didn’t become “strong” because I wanted to; I became strong because I had to. A woman I admire on Instagram, Jamie Lee Finch, said something today that hit me in the feels. “I told my therapist this week that if I’m never called “strong” again for the rest of my life it will be...
Does having a kid with Rett syndrome increase the likelihood of divorce? I think I forget sometimes that there are readers here who are actually following our journey and care about our life with Grace and Rett syndrome. I can be guilty of only coming on here to share the really big stuff. But I’ve...
Note: In this post, I use the term “special needs” because that is the phrase used in this story. All adopted children have “special needs”. What we’re actually talking about here is the adoption of a disabled child (presumed brain damaged, later diagnosed autistic). I think the vernacular could have been cleaned up, but hey....
If you go to Myka Stauffer’s Instagram account, comments are turned off on her more recent posts. And it’s no wonder she’d do this. She’s facing the public shaming of a lifetime. Sponsors are dropping her although this scandal has seen her gaining 20,000+ new Instagram followers in the last 24 hours and a YouTube...
Note: I started writing this post nearly 6 years ago. I revised, revised, revised for all these years. I almost posted it so many times and stopped myself. I continually ask myself “what is the end-game here? What is my goal?” and I understand how emotionally charged this topic can be. Possibly better than most...
