Hellooooo friends! Wow it’s been ages. So much has happened. We’re in a beautiful home now. It was a really long haul to get to this point but we’re settled and happy. Grace is settled in school. The bus is working out just fine now. She has all her insurance and doctors and meds in order. She just got fitted for a custom molded wheelchair. Her new sleep system is on the way. We still need a ceiling track hoist which you have to pay for yourself here. And we still don’t have a wheelchair vehicle which is sad but at least she has a lovely house to be stuck in when she’s not at school! We’ve applied to a charity for help and they’re meeting at the end of April to discuss our case. Positive vibes/prayers/thoughts please! Or throw some salt over your shoulder (is that a thing?)
I got another email from a new Rett mom this week. As usual, it was in reference to my fish oil post from 5 years ago. Don’t bother looking for it – I trashed it now.
The question, as usual, is “are you still giving Grace fish oil?” and my answer this time was the honest one. I gave Grace so much fish oil that she got a nosebleed. I threw it away immediately following the first bleed. But when I look back on that time in our lives, I realize that I was so desperate to believe that something could help her. That she could gain use of her hands. Or eek out a couple words. Or learn to use her legs. I would do anything to make this happen. Any snake oil would do.
I read every research paper. Tried every natural thing parents were currently raving about. Cried myself to sleep that we were stuck in England and I couldn’t put her in the drug trials. Cried myself to sleep that I couldn’t afford daily private therapy to try to force her to do things that her body just isn’t built to do.
I think the first time I ever threw in the towel was when she got her feeding tube 5 years ago. I remember the dr very carefully trying to broach the topic with me and I just went “Yep. I know what you’re gonna say. She can’t eat anymore. Let’s do it.” But even after that, I remained in a haze about the truth regarding Grace’s illness. That it’s irreversible and permanent.
Until this year.
Grace got a diagnosis I haven’t talked about yet. Ultra severe scoliosis. Currently, the curve in her spine is 70 degrees. A kiddo with a 20 degree curve is referred to the surgeon. So imagine our surprise that her Drs in the UK failed to notice the severity of her spine and it took moving to Florida to learn this. For YEARS I insisted that she clearly had a severe curve. You can see it even from the front of her. But no. They said no.
This news hit me as hard as her original diagnosis. And she’s had many diagnoses since we learned she had Rett. But this one…this one is deadly. Rett isn’t even deadly. It’s only deadly when they have things like this. Surgery is an option, yes. Rods in her spine. But her bones are so brittle that we’re not sure if they will just crumble around the hardware. We’re in the process of figuring this out.
Anyway…it was this diagnosis that just made me crumble. I swear I let out a breath I didn’t know I’d been holding for the last 8 years. She really, truly, absolutely has Rett syndrome. And literally every single thing that goes with it:
- Intractable Epilepsy
- Long(ish) QT
- Osteoporosis with multiple breaks in the last few years
- Premature puberty
And now? No more snake oil. We give her all the drugs. After 8 years, I’ve finally come to terms with this diagnosis and the fact that I’m not a superhuman. I can’t fight genetics. I just love her so so much and sometimes all I can do is hold her hand and put my head on her lap and cry with her. And sometimes, we just look at each other and she smiles so big that it looks like her face might explode. And I guess this is gonna have to be enough.