Two Years – Part 1 of our scoliosis journey

Gracie’s first x-ray in August of 2018.

Curves over 40 degrees generally require surgery so we knew immediately that was in our future.

Two years ago my life froze to a standstill as I awaited news that my oldest daughter, Gracie, came out of surgery for scoliosis without complications. I felt this three times that month as I watched my 11 year old endure three major surgeries that were necessary to help her, but would leave lasting effects that would cause her to adapt for the rest of her life.

When Gracie was 8 years old a normal well visit with her pediatrician turned into an immediate referral to x-ray because of a deformation in her back. We didn’t really notice anything different about her until this point, but once her doctor showed us what she say there was no missing the sudden curvature of her spine. Within an hour she had already been to x-ray and discovered that Gracie’s back had two curves that had appeared within the past year, one at 42 degrees and one at 48 degrees. I quickly learned that when it comes to scoliosis, a curve greater than 20 degrees requires bracing and a curve greater than 45 degrees requires surgery. Our day that day started with a normal well child visit and ended with the knowledge that our daughter was going to have to undergo major back surgery in the next few years.

The next day I received a call from the spine center in our nearest large city wanting to see Gracie immediately. We scheduled an appointment for that next week and begin to prepare our 8 year old daughter for some of the things she might hear at that appointment so she wouldn’t be shocked. When that day came we learned that Gracie’s scoliosis had progressed fast and was going to keep progressing fast. Due to the fact that Gracie already had two curves her doctor recommended what he called a “Milwaukee brace” and shoe lifts immediately and sent us a few blocks down the road to get her fitted by the brace shop. Her doctor told us surgery was absolutely in her future, but since Gracie was only eight years old, fusing her back at that time would stop her spine from growing. The goal was at that point to keep her curve from progressing the best we could until she reached an age where her spine was finished growing. Those few blocks to the brace shop proved terrifying with the discovery from a quick google search of what a Milwaukee brace was and what that would entail. The pictures we found online showed a brace that looked terrifying and uncomfortable. These pictures were devastating not only for our 8 year old daughter who had this in her future, but also for Kenny and I, who were picturing what the next few years were now going to look like for our little girl. We soon found that the brace shop that squeezed us in their schedule that day was able to comfort our daughters fear with their kindness and the fact that Gracie had many choices to customize her brace in a way that let her have a sense of “control” of a situation that she didn’t ask for and caused her great anxiety and fear. Gracie chose an aqua blue swirl brace with a unicorn on it and left the brace shop that day anxiously awaiting what her next few years were going to look like. The hope with the brace was that her curve growth would slow. Surgery was unmistakably in her future, but an increase in the severity of her curve would mean an increase in the complexity of her surgery. She was also prescribed shoe lifts because her back was already so severe it was causing one leg to seem shorter than the other because of the tilt in her hips from her spine. Shoe lifts would help compensate for that hopefully keeping her from being in pain.

As her parents, we were not only preparing ourselves for the knowledge that in a few short years our daughter was going to have a major surgery, but the knowledge that until that surgery came she was going to have to wear a brace and special shoes. This would be difficult for an adult, but picturing our little girl spending formative years looking different was heartbreaking. We want to give our kids the best opportunities we can as they grow and we were not banking on this news that was out of our control. In a weird way I also had a sense of guilt in these days. When someone would ask me how I was doing with this upcoming transition my answer was usually, “I’m just thankful that we’re dealing with something that is mostly fixable because so many kids have to deal with worse.” This was my blanket answer. Being in the ministry I walked through some serious issues with others, and watched a few of my friends painfully have to bury their children. Compared to those issues I felt silly grieving the loss of the life I was hoping my daughter would have with the addition of these newfound medical issues. While I’m grateful that our story is not as severe as that of others, our goal from day one was to use our story to help someone else. We spent the next days searching for those who have went through similar issues as Gracie because she found comfort in knowing she was not alone. Many people have scoliosis on a small scale, but finding other girls with the severity Gracie had was difficult. Over the past few years Gracie has been able to help others with what she has been through, but we have never sat down to capture her story fully in word form. As we celebrate two years since her surgeries were complete we hope that the story of her journey is able to comfort those who are walking where she was.