Why Being Sick Didn't Stop Me From Caring for My Terminally Ill Daughter

I’ve experienced many challenges as a person with mitochondrial disease and chronic illness in my lifetime. In the later part of high school, I struggled with attendance, since most days I felt so awful I didn’t know how I would get out of bed in the morning. During my college years, I struggled with the progression of an unknown disease which included two hospitalizations and many ER visits. Following college, I struggled to work as a charge nurse in a long-term care facility. Eventually, I was unable to continue due to my health.

After my husband, Justin, came into my life, things were better in many ways. My illness didn’t disappear, but I had finally defeated my own assumption that because of my illness I would never find someone to share my life with.

We were overjoyed to find out we were going to be parents in August of 2015. Though I struggled with several complications during my 39 weeks of pregnancy, I couldn’t wait to be a mom. My sweet girl Amelia was born in April and I couldn’t believe how blessed I was to have such a perfect baby. But, throughout my pregnancy and after she was born I couldn’t shake the feeling that something was wrong with her health.

In the following month, we finally were able to get answers about our daughter’s condition. Unfortunately, the top culprit suspected was spinal muscular atrophy, which we confirmed through genetic testing. Because of the early onset, it was very likely our daughter would be terminally ill, and without major intervention, she would not survive past 2 years old.

I was not new to the community of disabled individuals, and I’ve encountered many parents of children with disabilities, and even terminal illnesses. Adjusting to life with my daughter’s feeding tube, oxygen, suction machine, and physical limitations really wasn’t difficult. What was difficult was knowing my daughter was going to die soon, sooner than I ever dreamed. Millie didn’t know life without SMA, and she never saw herself as different and knew nothing but love.

Caring for myself and my daughter was a constant balancing act. I could be no good to her if I wasn’t as healthy as possible. Her care was very time-consuming, as she needed constant supervision, routine medications and a strict schedule. But there was always time for snuggling and dancing. My girl loved it when people danced with her. I never found myself wondering how my daughter would die. That was fairly straightforward. She taught me that being anxious about how the end would come wouldn’t allow me to enjoy the beautiful and delightful little angel that was right in front of me.

Amelia Marie died on July 15, 2016 at the age of 3 months and 10 days. I miss her every day, but I have taken so much from my time with her. I focus on my quality of life, comfort, and happiness. Those are the things I chose to focus on for her as well. For the rest of my life, I will grieve the loss of Millie.

She gave me a confidence I didn’t have before, a confidence in my own voice, the ability to advocate for myself and my children, and the beauty of cherishing the moment. It may sound cliché, but it has made all the difference.

Follow this journey on Confessions of a Girl With Mito

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