I hesitate to write about the effect of having a child with a disability has had on my mental health. This is for two reasons. First, my thoughts are kind of a mess. The second reason is because this child, my son Aaron – who is now 14 years old and has Down syndrome – is a beloved and wanted child. I fear adding to the bad rap that haunts disability. The truth is that the important stuff in life is hard. If it wasn’t hard, it wouldn’t be important.
(Please note that I write about moms because I am a mom, so I don’t assume I represent other moms, people with disabilities or dads or brothers or sisters. Their feelings are valued and significant too. But their stories are different from my story. Here goes…).
If I am honest, being the mother of any child is fraught with looming and inevitable loss. You help them attach to feel secure in the early years only to gradually let them go. This is heartbreaking work. There are many joyful and painful aspects to being a mother in general and being the mother of a kid with a disability is no exception.
When Aaron was born, I had the added work of grieving for the baby I expected in order to accept the baby I got. I had many years to figure out with my other children that there’s no such thing as a perfect child. (Usually this truth smacks you in the face in adolescence when the school principal calls you). With Aaron, the realization that no child is perfect came when he was a baby – instantly, right at his diagnosis.
This grief has faded but it has not entirely gone away. Some parents feel sad on their child’s birthday. I feel sorrow when I spot a group of teenage boys at the mall. Aaron is not part of that group and this causes a sharp pain in my heart. I think this has to do more with me than him, as I have always felt left out and have struggled to find belonging. Unwrapping my feelings from his feelings is difficult but essential work. I also grieve for my older two children who have grown up and left the nest. I miss them a lot. There is loss there too, but in a different way.
Having a child with a disability makes me feel particularly vulnerable. In a world where we are supposed to be strong, feeling vulnerable is extremely uncomfortable. This is especially true if we’ve adopted the ‘mama bear’ identity to advocate for our children.
People tell me I’m brave and strong. This is a façade. Mostly I am scared and weak. I cover up my vulnerability with anger that is specifically directed as outrage at the health and education systems. (See my Twitter feed for evidence of my outrage).
Many families get caught in the ‘busy trap’ to avoid feeling pain. They sign their child up for all the therapies in an effort to have the ‘best kid with Down syndrome ever.’ We did this too. Being self-aware of the reason you engage in therapies is vital: is to help your child be the best they can be, or is it to fix them, to make them as ‘normal’ as possible? Be careful, for you can lose both you and your child in the fixing. Accepting all your children for who they actually are – not for who we want them to be – is a long, never-ending journey.
There can be struggle to make meaning. Some of us try to change the world in an effort to find purpose from our child’s diagnosis. This is exhausting. The world doesn’t want to change to accept our children. We can only change ourselves. It is our job to equip all our children the best we can to allow them to grow up in a way that they are true to themselves – disability or no disability.
In my humble experience, the most important thing you can do for your own mental health is to allow yourself to feel all your feelings. Surround yourself with people who love you unconditionally. Don’t be afraid of being still. Find other parents and lift each other up. Be as kind and gentle with yourself as you are with your own children. All this can help you find peace in your heart. (Note: I struggle to find peace in my heart every single day. This is okay because I’m perfectly imperfect too).
I am grateful to Dr. Yona Lunsky for inspiring me to speak up about my mental health and to write this essay. xo.