I admit it, I lost sight of who I was. I went from being a go-getting, funny, social, alpha female to being simply Casey’s mom. I loved being Casey’s mom. It is and always will be my absolutely favorite title. While I was in the trenches, however, “Marty” faded away.
When Casey was about 3, we had nurses coming to the house. So my husband and I would occasionally get a chance to grab lunch or go see a movie. For Casey’s first 3 years, when we were in survival mode, my husband and I had not put any effort into our marriage. When we suddenly found ourselves across from each other at the table, it was like going on a first date all over again.
Luckily, we were still crazy about each other. But neither of us were the same person we were before Casey was born.
When I was with Casey, I typically wore yoga pants or jeans, t-shirts and sneakers. My hair was in a messy bun or ponytail. If I had any makeup on, it was not much. This is how all of Casey’s care team knew me. This is what I looked like at the clinics, at home, whenever I was with Casey (which was most of the time).
On those few occasions when I took a break, I loved to get dressed up. I love heels! I would wear my favorite heels, do my hair and makeup, and wear something not stained from drool or medications. It was like I had 2 identities, Clark Kent and Superman.
After Casey passed, I felt like I kind of died with her. I guess “Casey’s mom” did, in a way. I had to find a way to merge “Casey’s mom” and “Marty” into one person. It wasn’t easy for me at all. I had to find a balance of honoring her life and living for her, while being me. For me, it all started to come together when I decided to go back to school and become a nurse. My goal now is to work with Palliative Care for other families like my own.
In nursing school, we talk a lot about how we need to be culturally sensitive. Patients and their families may make choices differently than we would. Or in some cases, choices we don’t agree with at all. The professors talk about how we have to really know ourselves and our own beliefs before we can help others. I think this is a good lesson for parents of children with disabilities or special healthcare needs as well.
Knowing yourself is important and helps you to help your child and to work with their care team more effectively.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.