I haven’t sat down to write a blog about Maggie since December. That’s actually not right. I have sat down to write, but I didn’t know what to say. Jenny took up the reins and she kept you all updated on most everything that’s been going on. But I also wanted to put it in my words. I haven’t made a video in 5 months because Rett Syndrome is hard. Watching videos of Maggie struggling as I edit reminds me of how hard she struggles. But, I wanted to share this emotional roller coaster with you.
It’s been well documented (by us) how Maggie got sick last April. How she lost her balance. How her breathing got so bad that her lips would turn dark blue almost black. How she would shake and cry uncontrollably. We’ve talked ad nauseum about the doctors we’ve been to see, the ones with suggestions but no answers, or the ones with answers to questions we hadn’t asked. Rett Syndrome is no joke.
Imagine yourself in our shoes for a moment – watching your daughter struggle to breathe, struggle to stand, struggle in the severest ways possible – and doctors who offer absolutely no solutions. There’s no recommendations, there’s no medicine, there’s only, “sorry. This is just Rett Syndrome.” We’ve met new doctors, travelled to new specialists, engaged with new experts. “This is just Rett Syndrome,” is not how we were looking at it. This was something new and somebody was going to have an answer.
We’ve given Maggie CPR 3 times in the last year. Stories we may tell one day, but those days are too hard to relive for us right now. We’ve given her rescue medication for seizures twice. We’ve been entirely helpless. But Maggie has continued to fight. She had a different story she wanted to tell. So she went to her therapies. Though she couldn’t do nearly as much as she was able to a few months prior, she kept going. She kept trying. She persisted.
Three months ago we admitted her to the hospital to treat her seizures. It’s complicated to find the right medication, the right dosing. As of three weeks ago, it seems like we may have. Her seizures have calmed a lot. Instead of a few a day, she is down to 1 or 2 per week.
With all of the hard work and a medicine that seems to be working, Maggie’s started to smile again. We’ve started to see that joy. We’ve gone on adventures, nervous that she wouldn’t be able to enjoy them and I’m excited to share those stories with you over the coming weeks – especially because Maggie didn’t just enjoy them, she thrived.
She has worked hard enough that she is holding a cup for a few seconds at a time now. She is swinging and holding on. She is skipping and giggling.
And after a very hard year…so are we.