I’m writing this late on Monday night from my dad’s house outside of Birmingham. I drove up this afternoon, where the kids had already been dropped off by Mr. Andi. He took them to visit his family this weekend and I stayed behind. Despite my best intentions to Do All The Things while I was home by myself for three days, I failed to do much of anything (other than buy a Fitbit Flex with birthday money so I can geek out about sleep and steps and stuff).
It was glorious.
During the four hour drive with no one asking me questions or wanting me to change the channel or the radio or … or … or … I had a rare opportunity to think my thoughts, and I realized that it was eight years ago this month that we made the trek to Birmingham for Sarah Kate’s selective dorsal rhizotomy and the three weeks of intensive therapy that followed.
I’m the first to admit that the past few months have been difficult. I long ago embraced my role as a mother to two children with developmental delays – heck, I wrote a book about it – but the one thing I hadn’t faced before was regression. Sarah Kate wasn’t always improving, and often it appeared we’d reached a permanent plateau, but she was never losing ground.
Over the past few months, she’s lost ground.
But as I was driving today my mind flashed back to all of the progress she’s made over the years, and I was reminded that I have so much to be thankful for, and most of my past worries never came to fruition. There was a time when:
- I wasn’t sure she would ever walk.
- I wasn’t sure she would ever walk without assistance.
- I wasn’t sure she would ever be able to stand independently.
- I wasn’t sure she would ever be able to step onto a curb without holding on to something.
- I was sure she would never be able to run.
- I was sure she would never play sports.
- I was sure she would be teased because of her disability.
- I was sure she would always stick out like a sore thumb, even in a crowd of kids.
On Tuesday we’ll see her orthopedist in the morning and the rehab doctor in the afternoon. I have no idea what they’ll recommend. Maybe they’ll have ideas of ways to manage this tween growth spurt that I’ll like; maybe they’ll have ideas I won’t like; maybe they won’t have any ideas at all.
But it’s going to be okay.
I’ve both been dreading and anticipating these appointments. I want to hear what they have to say, but I’m also afraid of what they might say. When Sarah Kate was small, I was always looking for The Something That Would Fix Her. Now, of course, I know better, but the long-familiar worries about what her future will look like have returned.
For the first time in a long time, I don’t know what we’re facing.
I’ll be back on Thursday with a report. Have a sunny day!