Living as a parent with a chronic illness with a child who is terminally ill

I have had many struggles as a person with a chronic illness in my lifetime. In the later part of high school I struggled with attendance because 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 my career as a charge nurse in a long term care facility. Eventually I was unable to continue working that way.

Then my husband Justin came into my life and 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.

In May of 2016 we finally started to get answers to our daughter's condition. Unfortunately, the top culprit they suspected was Spinal Muscular Atrophy. Because of the early onset, it was very likely our daughter would be terminal, and without major intervention she would not survive past two years old. The diagnosis was confirmed via genetic testing on June 3, 2016.

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. Having a child with a disability never really bothered me. What bothered me was knowing that 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 life with her. I focus on my quality of life, comfort, and happiness. Those are the things I focused on for her as well. For the rest of my life, I will grieve the loss of Millie. But 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 cliche, but it's made all the difference.