I had to work hard in the first few years to learn not to compare my child and our situation to other families. I would hear a mom of a child with medical issues talking about her child’s struggles and find myself thinking “Really? That’s nothing!” or some version of that thought. It took a lot of personal work to step back and look at the big picture.
Eventually, I understood that regardless of the challenges our children face, as parents we share many of the same emotions. We all see our children struggling, and the need to make life easier for them, ease their pain, and make it all go away is overpowering for all of us.
We all have the pain, guilt, anger and sadness or feelings of failure for not being able to fix everything for our kids. We all go through the stages of adaptation and grief. And while the specific struggles are unique for each of our children, the parental emotional struggles are all very similar.
My daughter, Casey, passed away in March 2016, just before her tenth birthday. The first few years, I did not see other parents as going through the same things my family was going through. Once I could see the similarities though, it helped me to be more patient with other families.
There were many times in the first few years I would get very angry at other parents. When they would go on and on about their struggles and how hard it was for them because their child was not able to walk. I would become furious and think, “Their child could talk, smile and breathe—who cares if they can’t walk.” I would have given anything to have their challenges. Getting over those feelings of anger were very hard for me.
I was able to get to a place where instead of just getting angry, I understand these parents a lot better. I try to listen and be supportive. I watch as many of their children overcome their challenges and I am thrilled to see these victories. Instead of feeling jealous, I focus on the things I did have and the amazing love I was able to share with my daughter. It’s not easy and some days are really hard.
No matter how much I have learned and how much I have grown, there are still some things that I can’t seem to move past. I totally understand that each person’s journey is their own, and the emotions we go through as parents are justified and real regardless of the severity of our child’s disability. However, knowing what medically complex is, and knowing what life limiting is, I still really struggle when I hear a parent use a term like life threatening, life limiting, medically fragile, when referring to their child who is going to live to be an adult.
Their child will always have some challenges, but they will be able to live a long and full life. Their child will be able to have some sense of independence. I understand that they want to use these terms to help their friends and family realize that their child will never have a typical life. But still, as a mom who has lost a child, I have a really hard time when I hear parents use these terms for children who are not life limited.
I’m still a work in progress and I think I may always be. I try hard to respect each person and to recognize everyone is on their own journey. The bottom line is that, regardless of your child’s challenges, we are all in this together. Sometimes I hear other moms calling each other sisters by circumstance. Whatever you choose to call other parents, if you are there for them, they will be there for you.
Learn more about the stages of accepting, grieving and adapting to life with a child with a disability or special health care need.
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.