Personal Post …. Our Scoliosis Diagnosis

This is a personal post that has been on my mind to share and today just seemed to be the day! Many that know me personally and have followed my photography know that this is my daughter Emma. She is smart, witty, kind, creative, strong willed and loving. She is 11 years old. And she has scoliosis. I have always known that word …. ‘scoliosis’, in fact I have scoliosis, my mom has scoliosis, my granny has scoliosis. When our nurse practitioner noticed a slight difference in her hips during her 6th grade physical my heart sighed that this diagnosis had once again been passed down to another generation. What was supposed to a routine physical required to enter middle school quickly became something that changed … or maybe in hindsight only altered our lives. A ‘precautionary’ x-ray was performed and we left the office with a promise to let us know the results. We left a few days later for vacation and I had not really thought anything about not hearing from the results. Our vacation was ‘unplugged’ which voluntarily left us without phone service while we cruised through the Caribbean. When we docked on the final morning my phone started to do it’s normal busy downloading of messages and missed phone calls. One of those messages was from Dr. Sarah telling us that Emma’s x-ray definitely showed a slight curvature and she wanted to refer her to Shriner’s Hospital to further evaluation. I told my husband, but decided not to worry Emma with this until we returned home. When I arrived back to my office there was a package from Shriner’s with our appointment date and paper work to fill out before we arrived. I honestly still had not thought that much about it. I remember being referred to a doctor for further evaluation for my own spine when I was a slightly older than her and it resulted in a very undramatic appointment that said there was nothing to do .. just something I would live with. The day of our appointment at Shriner’s in Lexington, KY I felt a little apprehensive and sitting in the waiting room I honestly felt like we didn’t belong there and this appointment was probably unnecessary. We were whisked in our evaluation room, x-rays and then diagnosis. Scoliosis. Significant enough that we needed to brace. That exam room suddenly felt so small and with very little air. My mom was with us and the look in her eyes and the lump in my throat that I knew was the floodgate for my tears only confused and frightened Emma. This is what we stood and starred at: Kellie Carter Photography My heart ached that I could not take this away from my daughter. I had so much guilt that I had not noticed this change in her body. We were told we could go eat lunch and come back for our molding appointment for her brace, but none us all felt like eating so we walked a very long hallway and met David who was a bright and shining light for us in this journey. I think he easily recognized our pain and confusion and quickly went to work to turn that around. He even won Emma over and made her smile. He did not sugar coat what we were facing, but somehow made us feel that it was going to be just fine. When he started to make her mold I was shocked and in disbelief at how her body looked. I could easily see her curvature for the first time without an x-ray. We were told to come back in 4 weeks to pick up her brace. There was a lot of technical terminology thrown at us that day and my intent of this blog post is not to be technical and filled with lots of medical stuff… it’s to share how we felt that day and how we feel today. My Mom and I stumbled through the rest of diagnosis day in the best way we could. We treated Emma to her favorite lunch, dessert and about anything she wanted to cheer her up and make us feel better too. 🙂 After I got home and got her settled in my husband and I sat outside and shared our day. We were heartbroken. My husband is the researcher in our family and he googled and studied…. I choose to ignore it and hoped it would go away. He felt discouraged and lost how we could encourage her and make this transition easier. We didn’t see a lot of positive things about our situation. We read about how ugly the brace was and how angry these girls who had to wear them wore. Devastating. He encouraged me to order a book he saw in his searching: Straight talk with the Curvy Girls by Theresa E. Mulvancey and Robin Stolz, LCSW. I reluctantly opened in the book and starting reading. At this time Emma seemed either in denial or accepting her diagnosis much better than we were. I underlined several sentences to save and reflect on. Two in particular stuck with me: 1) ‘ I tell myself, “Short of life-threatening, I can deal with anything.” I couldn’t fix what was happening …I couldn’t stop it or protect her from the reality of it, but what I could do was support her and help her to develop strength; strength that could serve her through life’s many challenges.’ 2) “We are always faced with challenges, but if we teach our children that they can bounce back, we give them a sense of confidence and self-reliance….. Everyone has something they have to deal with, and this is ours.” These two passages made all the difference in the world to me. I couldn’t fix it. I couldn’t change it. I couldn’t take it away, but I would do everything in my power to make it the best it could be. I wish I could say that I made a difference in Emma’s acceptance, but I cannot …. she has displayed maturity far beyond her years and much to our amazement has grown and blossomed in front our our very eyes under this ‘bump’ in her road. Her brace does not define her in any way. Of course it was uncomfortable and annoying and I am sure it still it is, but she rarely complains or is never angry about it. We are simply inspired and amazed. She is entering her 4th month of wearing her brace 23 hours a day. Yes, you read that correctly …. 23 hours a day! We do not know how long this journey will be, but we hope and pray that we can do things that have been recommended to us to avoid surgery in the future. Being the photographer Mom that I am I wanted to take these photos and hopefully share them with someone that might need encouragement and a helpful understanding of this journey….. I also wanted to capture the beauty I see in her every single day. My hope some day is for Emma to share this journey herself with other young girls when she is ready. To be an advocate for self confidence and how her will to let something challenging make her stronger. This is the introduction of her story to share! Kellie Carter Photography