The Day My Daughter Was Diagnosed

I wouldn’t have made the appointment for my daughter’s well-child check except that I knew she was due for vaccinations. I went in with ease and confidence because this has been our healthiest year as a family ever. We haven’t even had a cold in over a year. The appointment was fabulous, until it wasn’t. The doctor had my daughter bend and touch her toes, and there it was, obvious as could be. My eyes met the doctor’s and although she remained calm, we definitely knew this appointment had just changed directions. She calmly asked, “Does scoliosis run in your family?” Yes, but nothing that’s ever caused alarm or intervention. My mind was spinning; already feeling that mom guilt of “How did I miss this? It’s so obvious.” “I’ve passed down yet another genetic challenge to my daughter.” We all think about things like this happening, we have our fears, but we are never really prepared when our child receives a hard diagnosis. 

We immediately got X-rays to see how bad the condition was and the next steps to take. The X-ray results were sent to our doctor and she called first thing the next morning. The diagnoses was not great; significant scoliosis that had come on quickly, so we were referred to Shriners Hospital. I was proud of myself for not panicking in those days of waiting. I didn’t consult “Dr. Google,” or poll the audience for the worst-case scenarios. I just knew I couldn’t go there…..yet.

One week later we sat with an Orthopedic surgeon, taking more X-rays and she warned that “You’ll only hear about 50% of this.” She was right. As soon as a doctor tells you your child has a condition that will require a brace 23 hours a day and will have a back fusion surgery at some point, your mind just kind of blurs, slows down, tries to remain calm, and you tell yourself, “For the love of God don’t cry!”(But do anyway) We cried because life was taking a turn we never expected, and our daughter would now, at the tender age of eleven, walk through suffering. No parent wants their child to suffer.

We are still fresh in the research stage of this diagnosis, waiting for her back brace, and coming to terms with what this all means. We don’t have it all wrapped up in a pretty bow yet. This will be years of a new story in the making, a journey that we get to walk through together and we’re unsure of what it will look like. We may not know how this will all play out, but here is what I do know: we get to choose how we walk it. We get to choose our mindset. We can see this as an overwhelming obstacle, or an opportunity to grow; to meet new friends and be impacted and impact the lives of others. We get to choose to do it with faith and peace or anger and bitterness. I have no doubt we’ll have some really hard days ahead, but we can choose for most of them to be good and positive.

This will be something that shapes us, especially my daughter, but it does not define her. This is part of her story. She is not broken, but beautiful, gifted, kind, strong, and wicked smart. Scoliosis may be her diagnosis but it’s not her identity or her destiny.

My mom heart is grieving the loss of a pain-free childhood, especially physically. No matter how hard we try we can’t always protect our babies from trials in life, but we can hold their hand and journey through it with them. And so we will, and so I will.