Megan’s Spine of Steel

In 2020, during the height of quarantine, I noticed a curve in Megan’s spine. It took me by such surprise because I’ve worked so diligently with therapists and doctors for her entire life to prevent and catch things like this before they became a problem. As you may remember, those first weeks/months of quarantine were terrifying to most of us. Many of us lost young, healthy friends and family members to Covid 19. So, as a special needs parent, I was beside myself with fear and anxiety about having to take her to Dallas hospitals while the governor was shutting us all down for travel due to the pandemic. All of this just months after my Great Aunt Vern died unexpectedly in my arms. Needless to say, my mentality wasn’t up to par for the road I needed to lead my family down. So, I made the decision to get medical help for my anxiety so that I could handle the next journey appropriately. That was the beginning of the rest of our lives.

Over the course of the next few years, her dad and I learned more and more about her scoliosis and what was necessary to treat it. We were both so terrified, we froze for several months trying to find the courage to move forward in the necessary direction. We met an incredible team of doctors at Scottish Rite Hospital for Children. Not only did we learn more about her spine, we learned what Megan’s disability actually is. She was misdiagnosed with Cerebral Palsy at one year old, even though it never really fit her and there was no evidence supporting it. Dr Christie, a PHENOMENAL neurologist, took one look at Meg and her chart, and asked me “Do you think she has CP?” I wasn’t even shocked at the question and immediately answered “No, I never have”. She smiled and said “me either”. So she gathered a lot of info, asked a lot of questions, and told us she wanted to do a genetic test. I told her sure, but have done that before back at home. She explained that according to the chart, MEGAN had never been tested. Only *our* DNA had been tested to see if we carry a gene that can cause CP, which we don’t. So they stopped there, assuming that meg developed CP due to an infection before birth since there’s no sign of brain damage, EVEN THOUGH there is no record of an infection either. So we all submitted our DNA right then and there. A month later, the test came back. She doesn’t have CP. She has an extremely rare genetic disorder that usually IS passed down from one of the parents. But in Megan’s case, it’s even more rare because neither her father or I carry the gene, and it’s also more common in males. It’s a disorder that impairs children’s motor skills early in life but not their intelligence. Anxiety and caffeine will worsen these symptoms. The disorder is called Dyskinesia Familia with Facial Myokymia. So in even rarer cases, a baby can develop that specific dna make up naturally, which is what happened with Meg.

All of a sudden, the world didn’t make sense anymore. We had been told in 2007 that she had this disability that doesn’t get worse over time and that therapy can help with. But that day in 2020, when I noticed her spine, our world changed. Despite our dedication and Megans hard work and discipline, I watched her struggle and decline. I beat myself up for years and years assuming I just wasn’t doing enough for her. Then, to learn her disability can worsen…well it knocked the wind out of me. I was VERY thankful I was treating my own mental health more seriously before I got this news. I had to pull strength from a VERY broken place to be strong for HER. Once, unable to manage driving myself in Dallas traffic, I overcame my own anxiety not only to drive there, but to do it alone with Megan high-fiving me the whole time and singing along to our favorite playlist. We do what we’ve always had to do in this world. We adapted.

To say that Megan overcame her own fears and disappointment is an understatement. I have a photo of the look on her face when I had to explain to her she needed a g-tube placement to gain weight or they couldn’t do the spinal surgery. One thing we worked SO hard to avoid her WHOLE life was a gtube. It was a HARD pill to swallow. But she eventually embraced it with the help of Paula, the nutritionist at Scottish Rite, who has been an irreplaceable friend and cheerleader for Megan and myself.

The very first person we met was Dr Megan Elizabeth Johnson. She is the surgeon who will be performing the spinal reconstruction on July 8th, 2024. It took us 4 years to get here. Dr Johnson’s nurse, and second person we met was, Carrie Wilson. She reminded me the other day how far I’ve come. She said to me with pride: “Amy! You used to have panic attacks on the phone, so we’ve had to correspond through email for the last 4 years. And now look at you.” And my strong, beautiful , smart Megan once couldn’t even listen to us talk about the surgery. Now she’s praying for it to hurry up, she’s ready! We adapted. We overcame. We learned. All while going through a divorce, selling our home, and dealing with our own personal losses, her dad and I have managed to keep a healthy co parentingship for Megan and I am so thankful. But we need the financial support from our friends and family.

Megan will be in surgery for 10 or more hours on July 8th. She will be in ICU for days afterward to be monitored and then kept an additional 6-7 days to recover. I will stay there with her in the hospital while she’s there, but we need to arrive days before in order to be prepped for surgery. So I’ll need a hotel for us those days before, and also after she’s released in order to stay close for a few days in case she has any complications. Her dad will have to take weeks off work in order to be there and will also need to cover his hotel stay. The financial strain is daunting to say the least. I’m so thankful for the friends and family who have helped us TREMENDOUSLY in ways I can never repay. But unfortunately, I’m asking again for your help. We are in the midst of moving in the same 30 days of her surgery date. The cost of all of this will most certainly impact our future and quality of life.

Over the last 4 years of this journey, Megan has suffered through extreme pain, missing out on important life events, and struggled to be a teenager in a body she has no control over and that’s rapidly betraying her. Having this surgery won’t cure her genetic disorder. She won’t have any new abilities that she didn’t have before. But she WILL be more pain free. She will be able to withstand sitting in her chair longer and more comfortably. She will fit into her fabulous clothing more effortlessly. (SLAY!) She will have the confidence to sit tall like the Bad Ass she is, and she will most importantly, feel like herself again. If there’s anything you can do whether it be to pray, offer well wishes, donate or share this post, please do so. We need all the help we can get. Thank you, everyone for reading this far, for listening, for loving my girl.