The JOYS of Parenting a Disabled Child
Updated: Aug 15
When I imagined having kids, I thought of family game nights, giggling sleepovers and homemade pizza parties. I imagined our home being the center of our kids’ activities, with their friends over much, or even most, of the time. I imagined a home ringing with laughter, alive with connection.
When my son was born, I had no idea the extent to which my dreams would change. While he loves people, my son’s anxiety is activated by large crowds and he needs plenty of personal space and time alone to balance out the time he enjoys with others. My daughter prefers to go to friends’ houses instead of bringing them to our house because sometimes it’s easier not to have to explain what is going on with her brother at any given time.
Sleepovers and pizza parties are not happening.
And if I remain stuck in my vision of what I wanted my life to be, I could find myself grieving much more than I already do.
But instead, I am choosing (daily) to let life be what it is. I allow myself to feel sad, exhausted, and overwhelmed, but I get pretty intentional about savoring the joys so they don’t get blocked out by everything else.
Like the joy of seeing my son completely present in any given moment. Seriously, he is the best at just being where he is, most often enjoying the outdoors, looking at the sky, or bugs in the grass. It is beautiful in its simplicity. And I know I would be a better person if I could be as present as he is.
Or the joy of watching my other children care for their brother, even on hard days. I couldn’t ask for a more fierce line of support than these siblings of his.
And sometimes I cling to the joy of a new skill mastered, however “small” or “late” our culture might say it is.
There is the joy of new words, or even sentences, used appropriately.
There is the joy of contagious belly laughs and shared silliness.
Joy, I find, is experienced by noticing and savoring the smallest things, right here, right now.
What is it that brings you joy as you parent your child with disabilities? What small moments can you notice and savor today?
The life I imagined was filled with joy. The one I have is too.