I still have strong memories of the day when I realized how isolated I had become.
It was spring, and I decided to load all the kids up and take them to the park. As soon as we arrived, the kids were off to play. I found a bench to sit on and settled in to watch my kids and enjoy the sunshine.
As I looked around the park, I saw lots of other moms talking and laughing, and I felt a twinge of jealousy. My life was all about my kids, doctors’ appointments, therapies, hospital stays, and just trying to make it through each day. A wave of loneliness swept over me and tears began to roll down my checks. I wondered what had happened to all my friends and why I didn’t have someone to laugh with.
I began to mentally make a list of all my “supposed friends” who I didn’t see or hear from anymore. I thought of how they had all disappeared when my life became complicated. I began to get angry and allowed myself to have some awful thoughts.
A couple of days later one of my “friends” called. I was very rude and knew I had hurt her. But I didn’t care, because she was the one who dropped me when life had gotten hard.
Luckily, she confronted me and I let loose on her with all my feeling and hurts. She was quiet for a few minutes and then spoke the words that turned my world upside down. She informed me that she had tried to be there for me, but that I had pushed her and all our other friends away.
I began to think back to the days and weeks following the diagnosis.
Our family did, in fact, step back and hunker down. We had gone into survival mode. It was like our world stopped, and we had to learn how to relive in another world. Instead of reaching out for support and help, we shut down and shut everyone out. We alienated ourselves from our friends and extended family.
We had lost some friends who did not understand or were uncomfortable and did not know what to say. But we did have a few that were still trying to hang on. We had some amazing friends who listened and could hear that behind the “I am fine,” we were really drowning. They never gave up on us and stayed the course with us, waiting patiently.
I am grateful for the true friends that never gave up on us. I learned that I want to be that kind of friend. I want to listen to the truth behind the words and the real emotions behind the fake smiles. I don’t want to give up on anyone when they need me the most. I want to be like my friend who patiently stood beside us even when I could not see her.
“Friends are those rare people who ask how we are and then wait to hear the answer.”
– Ed Cunningham
Find helpful information on adapting, grieving and accepting and connecting with other parents in the Family Support section of the website.
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.