Maggie is a full time job. Technically she’s a full time job for 3 people. And even then, it’s a lot. This weekend, Jenny took Grayden out of town for his spring break. I can only assume they’ve been busy doing keg stands and hitting up foam parties while I’ve been home alone with Maggie. Sometimes those weekends can be very draining. Especially recently, her mood has been sour and she’d been alternating between crying and hyperventilating, coupled with seizures and a complete refusal to eat. It’s been exhausting. She’s been reticent to use her computer, unwilling to do any school work, too tired to really commit to her therapies. We’ve been beaten by Rett for a few months now and waiting for the light at the end of the tunnel has been trying. Jenny told me they would stay back and I considered taking her up on the offer, but, at the same time, it’s important to remember that Grayden needs to get away from all the stress of Rett Syndrome every now and again as well. And, since I had just had a refreshing weekend away last weekend, I was ready for what I assumed would be a challenge.
Maggie and I had seen a GI specialist earlier in the week and she prescribed a short term treatment plan and suggested taking it easy over the weekend. So, instead of filling our dance card up with friends and activities, we stayed in, watched movies, baked croissants, but mostly, I just listened to her. We get wound up in our obligations, and often fall back on the idea that she can’t control her body, so we need to direct her at all times. But, with no where to go and no one to see, this weekend was different. There was no rushing out the door or hurrying to get orthotics on her feet. Instead, I followed her lead for a change. I assumed her actions were deliberate, instead of a result of a neurological malfunction. It seems like a no-brainer, but it’s a tough thing to remember. She wanders and spins and skips all day long, so I’m not always fully convinced she’s intending to do the thing she’s doing.
The first night we ate dinner together. She was having mashed potatoes and turkey. I was having Matzo Ball Soup. Well, I was having Matzo Ball soup. She was refusing to eat, again. I’d offer mashed potatoes, avocado, mac and cheese, anything that any kid would enjoy. But she refused. And I thought, “I guess this is another night where she doesn’t eat dinner.”
Then, “Tap tap,” Maggie tapped my soup with her hand, signifying that was something she wanted. So I gave her a bite of my soup. And another and another, until she ate it all up. It was probably the first full meal she had had in weeks. She smiled at me, relieved that I waited for her, relieved that I listened to her. When she finished, I asked if she was done. She turned to me to signify a yes and scooted down off her chair. She walked to the couch and sat down. “Are you saying you want to watch a movie?” I asked her. She giggled. I said, “you should take a bath first and then we’ll watch,” and I proceeded to lift her, as I do every night. But she went limp. She was not moving from that spot. I apologized for trying to force her to do something she wasn’t ready for. We sat and watched a movie and when it was done, she stood up and walked to the bath as if to say, “on my time, dad.”
The next day she slept in and when she woke up she was smiling. She didn’t feel 100% but she was smiling. When she sat at her computer she asked me if we could go bowling. We had a 20 minute conversation about bowling, exclusively using her eye gaze computer, which was a thing we have done maybe once and talked about probably never. I promised I would take her. I followed her lead all day and as she fell asleep that night, nestled in my arms (it’s the only way she really falls asleep), she looked up at me and smiled until she couldn’t keep her eyes open anymore.
On Sunday friends ended up coming over intending to swim. Her stomach had been upset and though swimming was on the agenda, she didn’t want to swim. She protested getting into her bathing suit and I figured it would pass when she got in the water. A few minutes into the swim she came to me, staring, purposefully at me, silently demanding that we get out of the pool. I helped her out and her attitude changed, appreciative, once again, I had “heard” what she was communicating to me. When her friends were done we played games, again, using her eye gaze. Months had gone by without her using it significantly and prior to that, her one word sentences with the computer required some mental gymnastics on our part to make sense of her intentions. Her peers still struggle to understand what she’s trying to say, but when they came to the table she said, “what’s up” and engaged with them for, possibly, the first time in their lives. They had been asking questions about Rett Syndrome all day, and I could see their excitement to finally be talking to Maggie, after years of struggling to understand her.
I’m not saying I want Jenny and Grayden to leave town every weekend. But next time they do, I’ll be prepared, but not necessarily for it to be work,
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.