When you have a child with special health care needs (of any kind), it’s easy to focus on the things they can’t do or the things they can’t have - or what you can’t have. After Casey was born I found myself doing this a lot. I was so hung up on the fact that she could not swallow or smile. We didn’t get to take her home from the hospital right away, I couldn’t take her out to run errands and show her off like my friends did with their babies.
I was so angry and jealous about the can’t and have-nots that I started falling into a very dark place. This happens to a lot of us. Maybe even most of us.
The first 2 years of Casey’s life were very hard for me. I was not taking care of myself, my marriage was basically on hold, and all I did was keep Casey alive while I fell further and further into a hole that I didn’t know how to escape from. I often refer to these years as my dark years. Talking with other parents, I have come to realize that we all have dark times. Some are short, some are long, and some of us are still stuck there, much like I was early on.
Feeling sorry for myself, jealous of the world, sad, and mourning for the life that I thought I was going to have was not doing anyone any good—especially Casey. One day it finally hit me: I had a lot to be happy about. I was the mom to the most amazing person I have ever met. She was so beautiful, so strong, and every day of her life she overcame so much.
In her 10 years here with me, she taught me so much. She taught me what love really is. She taught me to see what really matters in life. And she taught me to be thankful for what I do have and not sad about what I don’t.
When I learned how to see the beauty in the little things, and to celebrate all victories, no matter how big or small they were, my life changed. I was no longer in this dark hole, but instead, I could make the most out of every day that I was lucky enough to share with Casey.
If you find yourself having a hard time like I did, try to find one thing, any little thing, each day that brings you joy. Focus on it, and soon you realize too that the other things really are not that important.
Accepting, grieving and adapting to life are stages that you may go through. Visit this section for more understanding of the stages and process of adapting.
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.