Sometimes you’re not fully prepared for just how much something is going to hurt.
As I had her bend at the waist and reach for her toes, my heart skipped. Surely I was seeing it wrong. Fast forward to January and her pain increased and my worry skyrocketed. I made the phone call to my spine surgeon.
All the way there, I explained how the visit would go, who would come in to see her and joked about how this visit didn’t involve any meds or shots, just x-rays and questions.
We started with x-rays first. The techs wanted us to wait a few minutes to confirm the films were a good image. I was smart enough to stand in the space where I could see the screen; not my first rodeo. And when I spy it, I felt sick.
My fears were confirmed. It was a definitive scoliosis diagnosis, the lateral curve of the spine.
The next half an hour we visited with the PA and the rockstar doctor about bracing, scheduling her MRI and deciding key decision points in her treatment. It was all I could do not to fall apart in front of sweet Clare. She handled the news beautifully, asking lots of questions and taking it all in and I was so very proud of her.
“We won’t have to Google anything, Mom, because you have all the answers,” she said.
It’s late and I need to be honest. These first few days have been really hard as I process the news and what it means for her. I see and know every one of the blessings (yes, there are many). But the lessons I’ve learned with Luke came bubbling back this week. First, before I see the light, I have to fight my way through the darkness.
You see, my heart has never forgotten how cruel other children can be, and that was before the age of social media and its instantaneous and cutting nature. I haven’t forgotten how other girls enjoyed clothes shopping and I hated it. I haven’t forgotten how badly I just wanted to be normal, for boys to like me and for God to heal me. I haven’t forgotten the callouses, the stench of the brace and how it felt to escape it for my two hours of freedom every day. I haven’t forgotten any of my four and a half years in the brace, the three babies pre-surgery, the surgery itself, the intense physical therapy and the three babies post.
When Scott and I began our family, I started researching the statistics. If I had girls, how much greater would their chances be? Ten percent with family history, in case you’re wondering. It was the one thing I never wanted to pass on to my children. Ever.
As I moved through this week, the light began peeking through and I felt God’s grace. The circumstances of Clare’s diagnosis, while similar to mine, are unique in their own right. She is surrounded by a loving class in a Catholic school. I don’t have to worry about finding *the* spine specialist or orthotist. We already have them on speed dial. I can, indeed, answer all her questions. For once, I don’t have to spend hours Googling information. I just have to go back about 33 years and find the answers. I know how big and beautiful her quality of life can be, no matter if her case is solved with bracing, stapling or surgery. That brings me the greatest comfort.
We’re already making plans to see about getting a brace made for her American Girl doll and I know the online support community for scoliosis is so much greater now than it was then. We trust her doctor immensely. Eleven years ago, I trusted him with my life, now, I’m trusting him with a part of my heart.
As we left the appointment this week, Dr. G looked over and said, “Good catch, mama.” I’ve always been her safety net and that certainly isn’t changing now.
To my dear friend who allowed me to blubber my way through life earlier this week, thank you for listening. You have no idea what a gift that was to me.
It’s time to go show the world that scoliosis may be your diagnosis, Clare, but it doesn’t define you.