Reframing Our Point of View on the Trauma of Receiving a Diagnosis for Our Child

When we found out about our son’s diagnosis, we immediately got to work and figured out who we, as caregivers and parents, needed to be to make sure he had everything he needed. 

It took a lot of learning about doctors, systems and processes. We did the best we could without any sort of guidance. We made sure we learned the specific vocabulary and terms that we had to speak moving forward. 

I look at that as a blessing. Parenting my son is one of my life’s biggest joys. It is truly a pleasure to be his dad. 

We need to do a better job of talking about parenting a child with disabilities or chronic illness. Too often, the stories we hear are framed from a loss-based view. I don’t feel like we lost something when our son was diagnosed, or I lost anything as it relates to him. If anything, I lost a sense of predictability about my own life, but I never experienced the feelings of loss around my son. 

Similarly, we need to talk about trauma and trauma-informed care. The moments right after diagnosis are often traumatic for parents. Trauma is defined as "a person's emotional response to a distressing event." And for many parents, the moment their child is diagnosed is a very distressing event. 

In those moments, we are expected to be our best, to be able to retain information from doctors and specialists, to be able to function well enough to answer questions, to ask questions that could define our children moving forward. We’re expected to be ok. 

It’s time to define the experience of parents of children with disabilities as being more emotionally complex than we give it credit for being. For me, to be the best parent I can be, I need to cope with the wide range of emotions that come up, too. The pain parents and caregivers feel aren’t openly acknowledged as much.

Parenting my son is the greatest joy of my life. It always has been. It’s time for us to separate the work that we do for our kids from the work we need to do on ourselves. We need to make sure that we are at peace with the journey that took us here. Doing so will make us even more capable of helping our kids. 

This page speaks to the emotions parents may experience when their child is diagnosed.