Last week, when we were at clinic, I saw an adorable little girl in leg and hip braces, pushing a walker, and I couldn’t help but smile. Her mom followed as she confidently led the way, knowing exactly where she wanted to go and almost taking a few toes out along the way. This girl had a destination!
First, it was full speed ahead to the table with the over-sized checkers board, where she took a seat with her mom. But she immediately switched gears when she spotted a waving baby. I watched as she got back into her walker and eagerly rolled over to the baby. She then flipped down her seat (that was part of the walker) and thought nothing of striking up a conversation with the baby and his family. And there she sat chatting for the next 15 minutes, beaming as much light as when she first walked in.
Clinic days are interesting. They reveal the crazy spectrum that is Spina Bifida, ranging from kids with no signs of physical challenges that are there for a quick urology check up, to incapacitated kids with feeding tubes and reclined wheelchairs. Most of the time, I leave thankful for Brooklyn’s health and praying for the little ones with much bigger struggles.
When they called us in for Brooklyn’s ortho appointment, I couldn’t get the image of the little girl out of my mind. It was an image I have seen many times in my head, and I couldn’t help but ask the question I knew better than to ask:
“I know you’re only guessing, but based on what you see so far, what do you think Brooklyn will be able to do?”
Our orthopedic surgeon smiled and gently told me that it depends on the muscle strength we see in the coming months. But as I pressed her, she added that because Brooklyn is already able to sit up independently, she should be able to walk with assistance. We just aren’t sure what that “assistance” will mean. There will definitely be braces of some kind and a walker involved at some point, either as a bridge to crutches or as her main mode of transportation. And, of course, there is always the possibility that she will need a wheelchair, even if it is just for long distances.
Her answers didn’t surprise me. In fact, I pretty much knew what she was going to say, but something made me ask. I admit that for the last 6 months, I have basically predetermined what I think Brooklyn will do. It’s not like I’ve completely lost hope — trust me, I still pray BIG — but I kind of felt like I just knew. A Mama’s heart can feel that stuff.
Later that day, Brooklyn had physical therapy. Nothing special, just our typical weekly therapy. But during stretching, I watched our PT’s face light up.
“I think I just felt something new twinge.”
My heart stopped.
“I think I might have fired a hamstring.”
Now I was choking back tears. You think I’d be used to this by now. Even now, as I write, the tears are falling.
It wasn’t until that moment that I realized perhaps I had lost a little bit of hope. It’s a difficult balance — hoping and accepting. We had heard early on that maybe Brooklyn had some hamstrings, but further unofficial “tests” didn’t confirm that, so I figured we were all quads. And although I want every muscle we can get, quads are all we need to walk. So I was good with that.
But to think there was still a chance for more? To think for a second that my image was wrong. Well, that was a m a z i n g.
Like anything in life, I’m not sure there is a “right” way to navigate through this journey, but I do think that a spark of hope every now and then is good for the soul, even if it turns out to be wrong.
This week, Brooklyn has started to experiment going on all fours, bending knees that never really existed when she was born. We are bumping her PT appointments up to twice a week, and I can’t tell you how excited I am to see what she can do.
We also have a muscle test coming up in January — her first one since the day she was born. I am both excited and scared to see what we find. I am fully aware the results may prove our PT wrong — and my heart is ready for that (I think) — but my hope, my prayers will still be that Brooklyn proves all of us wrong.
Happy weekend, everyone!
