“I grew up in Mobile. I was adopted when I was almost three months old. That’s old for a planned adoption. When my parents finally got the call, it was informing them that something was wrong. They believed I possibly had a brain tumor, but my parents insisted on proceeding with the adoption. My pediatrician said the CT scan revealed that I just had a lot of brains, but it didn’t stop my uncle Joe from calling me Big ol’ Head for most of my childhood.

A few years after my adoption, my mom found out before her hysterectomy that she was pregnant. Along came my little brother. My parents worked a lot for very little. They left at dark and came home at dark. I can only imagine how much it took them to adopt us. We were latch key kids at a pretty young age and raised each other. We had a lot of free time to make bad choices.

From the outside, it looked like a pretty life. Wonderful parents adopting little orphans. But after adoption kids aren’t just fine. There is still trauma to deal with. There were other issues in my childhood that led to more bad choices at an early age. I grew up faster than I should have and looked like an unappreciative asshole. The truth was I was a kid with a lot of chaos and trauma and needed help with. I had two parents who didn’t have the time or resources to help with those issues.

My parents dealt with me as a teenager by not dealing with me. I was 16 when I disappeared one night and followed Phish around the country. I came home and was promptly put in a high-level juvenile jail. My roommate was in for murdering her mom, and the girl that replaced me was in for raping her little sister. I was there for running away. It gave me a new perspective.

I found out I was pregnant with my oldest son, Gabe, at 19. I was determined to give him the life he deserved. I worked a lot, spent a lot of time taking care of him and slept very little, but I made it happen for us. Everything was running pretty smoothly until he turned 15. I had other kids and a family at this point. Gabe started getting up funny when he got off the floor. He’s a pretty creative person so I thought maybe it was to be dramatic or get attention, but that wasn’t it. I fought for months to get him into a specialist. There was so much testing, including 3 DNA tests, to figure it out.

After a couple of misdiagnoses, we finally got the results on the third DNA test to confirm Spinal Muscular Atrophy. One of the many forms of muscular dystrophy. Not only did Gabe have it, but his younger brother Charlie did too. Before 2016, there wasn’t a treatment available for SMA. Screening is now so important, so that kids with SMA can seek treatment as early as possible. With this disease, time lost is muscle lost. With SMA type 1, the most common form, children are typically dead before the age of 3. The boys have one of the rarer forms, which is type 3. Fortunately, the medicine has helped tremendously. We didn’t think Gabe would be walking by the end of high school but one of my proudest moments was watching him walk at his graduation last year.

My free time was filled with doctor appointments and long drives to specialists around the country. I pushed for Alabama to begin screening newborns and researching advances in medications. My friend Maggie saw I was making myself crazy and told me to work for her at Soul Kitchen. I started therapy and began to address my traumas and conflicts. I focused on becoming better not just for others but for myself.

Last November, COVID became a reality for me when my 101-year-old grandmother caught it. I was named after her, and she cared for me most of my early life. The hospital didn’t think she would survive, and the nurses and doctors had other patients to care for. We were given the option for one of her 32 grandkids to stay with her in the COVID unit if we stayed masked and in medical gear and couldn’t leave until she did. I stayed with her. It was the best and worst days of my life. I got her home on hospice. She gave our family the love of music, and she passed away two days later with her family around singing to her. I realized then that she and my parents gave me a family when I didn’t have one. My parents already had one child and my grandmother had dozens of grandkids–they didn’t need more. But I needed them.

I dealt with my grief by going back to work. I bartended at the Soul Kitchen and worked part-time at Manci’s. Harry, one of the owners, asked me a couple of times to be the general manager. I said no at first, but now I love my job. The owners do good things for no other purpose than to do good. Their example makes me want to work harder for them.

There’s a line in a song by Frank Turner that gets me every time: “That love is about all the changes you make and not just three small words.” I’ve gone through so many changes, but the positives have all been for the people in my life that I love. Those people loved me when I didn’t love myself. I’m finally finding my value and not letting my past define my future.”

Claire