Grief is such a funny thing. It affects everyone so differently. Some people get mad and angry. Some people get sad and cry. Some people become detached. Others get anxious.
There are so many symptoms of grief. When bad things happen, we all deal with the grief in our own way.
Our oldest son has cerebral palsy because of a very traumatic birth. After he was born, I didn’t really bond with him for a long time. I was so sad about what happened. I was exhausted. I knew time would help heal, but I didn’t know that grief would sneak up on me, out of the blue, 10 years later.
The first year of Wade’s life, I fell apart. The second year, my husband fell apart. Where I had been sad and depressed, he was angry and detached. The third year is when we came together. We started to learn what our new normal would be. We started to get comfortable with our new life.
I wish someone had told me in the very beginning that I would grieve for the rest of my life. I don’t grieve about what happened when he was born. I now grieve about the loss of a “normal” life…whatever that means!
I have a very hard time with holidays and birthdays. I get a lot of anxiety. We must plan for everything. We can’t just jump in the car at the last minute and head off to the holiday parade or celebration.
We have to make sure where we are going is wheelchair friendly and that Wade’s communication device is charged enough so he can talk the whole time. We must make sure we have medications and a change of clothes in case of an accident. Sometimes the thought of doing all that makes me so tired that I just don’t feel like celebrating anymore.
And then there are the gifts…what kind of presents do you get for a kid who has limited mobility?
I also grieve about the things Wade can’t do. I am very optimistic and always try to find ways for him to participate in everyday activities. But the truth is, there are some things he just can’t physically do. I get sad when I see other kids running around outside. I get sad when we go places and there are physical obstacles that keep us from participating. Our family really tries to make the best out of every situation, but sometimes it just plain sucks.
Sometimes the grief will just sneak up on me. I can be sitting on the couch watching TV and it will hit me. Maybe it was something I saw on TV. Maybe it was something someone said. Maybe it was a random thought. I never know.
But now that I know this happens, I can deal with it, be sad for a little bit, and move on. I let myself experience the sadness. But I make sure I don’t stay in the sadness. Our life does look different than I imagined, but in the end, it’s all okay.
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.