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...
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...
Over on our About Rett page, I discuss how Rett syndrome is NOT an intellectual disability (insert middle finger here). Hell, it’s not even a learning disability (not in the traditional sense – more on that later). RETT SYNDROME IS A PROCESSING DISORDER The number one most impairing thing about Rett isn’t intellectual impairment (what...
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...
Grace is in the ICU in critical condition with aspiration pneumonia. And I did NOT see this coming. All this time, I’ve been afraid of the wrong things. I’ve been afraid of the seizures. Bracing myself for her next bone break. X-raying her spine every 6 months. Testing her for heart conditions she does not...
