I see #takethatrett as a rallying cry every now and again. When someone’s daughter takes a few steps, when they say a few words, when they climb a few stairs. It’s wonderful to see girls pushing through the hardship that Rett has dealt them. And considering how Mggie’s been doing lately, slowly getting back to what she was prior to this most recent illness, I thought I could explain to the non-Rett families what #takethatrett really means.
I took a step back on a recent post I saw and recognized that it must be hard for typical families to understand what #takethatrett was really all about. You see, everything is hard for girls with Rett Syndrome. Maggie has recently been losing her balance. Her hand function which was minimal is now next to nothing. Walking up and down stairs is not easy. Eating is complicated. Climbing into a bath is too dangerous for her. Sitting on a toilet requires more strength than she has. Everything is hard.
Many girls with Rett Syndrome can’t do any of these things at all. They are in wheelchairs, eat via feeding tube, have to get carried up and down stairs.
But still, each and every one of us fights. We take them to therapies, though we don’t know if she will be able to do anything at all at therapy. We push her teachers to pay closer attention, though we know that’s asking a lot. We work with our daughters with as much energy as we have to spare.
And every now and again, they surprise us. They do something we’ve been working on for years, or just something they couldn’t do yesterday. And we take to social media to exclaim that we’re beating Rett. #takethatrett – you can knock her down, but you can’t keep her down.
Typical parents may go, “so what? she can open a door.” But if they had any idea how hard it was to get her to put all of those pieces together…if they knew the kind of work and tears required to make that connection to allow her to do that, then they too would understand. #takethatrett isn’t just a hashtag. It’s an exclamation of relief that despite 1000 things against us – on this one day, one thing worked.
Tomorrow it might not work again. But for today, she’s back to fighting Rett Syndrome and that’s a reminder that no matter what Rett Syndrome takes from her, she can still take some of it back.
We looked into all of the medical interventions there were to help understand why suddenly her balance went away and her hyperventilation became uncontrollable. We couldn’t find anything. But, my optimism forces me to believe there’s always a solution.
So we turned to #TeamMagnolia
She hasn’t been able to go to school (more on this next week), so we’ve been able to focus on her therapies. We’ve been able to work with her in her off hours. We’ve been able to let her relax and not work at all when that’s what she needs.
And we’ve seen some improvements. It’s not what it was, but I think there’s a chance that it will be. I didn’t think this way for a while. I thought it was only going to get worse. Rett has this way of making you doubt your optimism. Because though I no longer feel like it’s going to get worse, I now feel like this is going to happen again. That someday, she’ll get sick again, and she’ll possibly forget to walk for a few weeks again.
At least next time, I’ll know who to turn to.
Thank you to everyone who has reached out or left a comment or sent a note. We appreciate hearing the words of encouragement. These last few weeks have been difficult watching Maggie struggle as she has. But we’re fighters and so is she.
In the middle of watching Maggie lose her balance, we also had to find answers,. In the last 10 weeks we’ve consulted with 2 ER doctors, 2 pediatricians, 2 neurologists, 1 cardiologist, 2 Physical Therapists, a nurse practitioner & 1 occupational therapist. We put her on lexapro, we put her on amoxicyllin, we took her off those things. We checked her heart, her ears and her Phrenic nerve. Nothing helped.
It’s not a tragedy yet. We’ve seen her regain her strength for short periods of time. We’ve seen her run and skip on occasion. We know Maggie is in there. We just have to give her time and encouragement to do the things we already know she can do.
I wondered last week if “It was starting to go” I think Rett Syndrome does that to you. You’re never sure what’s around the corner. Is it going to be worse tomorrow or better? Is she going to do something you didn’t think she’d be able to, or is she going to stop doing the things you know she knows how to? We’ve heard stroeis of families who put their daughter to sleep only to have her wake up the next morning not knowing how to walk. But, we’ve heard just as many stories of triumph as daughters who forgot how to walk have regained the ability. From what I can gather, it’s not the parents. It’s not the girl either. It’s each individual person’s version of Rett. Some respond to therapy, some don’t. Some will grow, some will not. Just one more thing about Rett Syndrome that keeps you in a constant state of readiness and discomfort.
But as long as Maggie has fight in her, we will fight right alongside her. And honestly, even if she doesn’t have fight, we’ll still fight. She deserves nothing less.