I grew up as the big sister. I was taught to share and to make sure my sisters had what they needed before myself. I learned at a young age how to put my own wants on hold and to truly be happy for the people I love.
It was never easy, though. Watching other people do the things I wanted to do or get the opportunities I was waiting for always stung. I learned at a young age how to hide my own pain and disappointment to not ruin someone else’s celebration.
While sitting in my wheelchair after I was discharged following Casey’s birth, I had to use this skill as I tried to hold myself together. I had to watch happy mothers load up their new babies and head off to the life I wanted.
I had to use this skill many times over the years as I would hear story after story of other children who had traumatic births but somehow were left with minimal challenges. Or when I would see photos of a baby covered in tubes and monitors (much like my baby once was) and the moms would go on and on about all the surgeries and diagnoses—and then there would be a current picture of a healthy child smiling and running around.
I was happy for these moms, but no matter how happy I was for them, there was always a part of me screaming from inside “Why not my child?!?”
As Casey’s health got worse each year, it became harder and harder to be happy for other families that had children getting healthier and stronger. After Casey passed away, I wasn’t sure I was ever going to be able to be truly happy for other families. Luckily, I am able still to feel joy for others.
There is an ironic twist that goes along with these feelings. While I would be screaming “Why not my child?” as I saw children getting better, there were many times I also saw children getting worse and/or passing away. I would find myself very humbled and sad for these families and I knew that it very well could have been my child. In those times, I would feel so guilty because I would think to myself “Thank goodness it was not my child.”
There are a few children that you meet who remind you very much of your own. When those children pass away or have remarkable recoveries, the jealousy or guilt is hard to overcome. I am sure there were many moms that kissed their babies a few extra times after hearing that my Casey had passed. These mothers knew, just as I did so many times, that it could have been them.
If you can find a way to process these highs and lows, there is a wonderful gift that comes with being a parent to a child with complex medical needs. When you live each day knowing it could be your last, you make the most out of every single day.
Each day I try to focus on the fact that I had almost 10 years with my baby girl. She was not expected to make it a week, much less 10 years. I know that each day I had with her was a gift, and one that I will forever treasure. I focus on the days we did have, not the fact that our time together was up.
Please visit the Accepting, Grieving and Adapting to Life section for more help and information.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.