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...
To-do list this week: Follow up with insurance company re: diapers appeal Follow up with DME supplier re: feed deliveries Follow up with hospital re: negotiation of large hospital bill Try for a 3rd time to get info from disability charity about completing portions of the Medicaid waiver application which I don’t understand Take Grace...
Omg you guys. Oh. Em. Gee. I have had one helluva few weeks after recording what you’re about to hear. Did you even know that there’s a difference between pain and suffering? And that one is healthy while the other is not. And that one can even alter your future AND you perception of the...
Keep falling until you can’t fall no more Until you feel like you’ve been falling for way too long Then you will know ’bout me -fink I usually know what I’m about to write when I get to this blank screen. I have a number of posts that sit in my drafts. This has been...
If you’re suffering with your child’s diagnoses (and really, who isn’t?), the greatest gift you can give to yourself is coming to Orlando and attending a P3 weekend. It’s like months (years?) worth of therapy in one weekend. I have never moved through so much pain so quickly and with so much support as I...
