06/23/2021
💙
There is a tension that rages just beneath the surface of the heart for parents of children with disabilities.
This was evident to me recently. I’m not going to get into the details. Partly because I’m tired, partly because I don’t want opinions on the actual incident, partly because I don’t know what stories are mine to tell.
But just know an adult’s words pointing out our child’s struggles immediately brought tears to my eyes. My husband cried, too.
Her words were a reminder of what we know but what we don’t always talk about.
But that tension is always right there. And sometimes it just takes a look, a word, or some unexpected news to bring that tension that bubbles and brooks and rages all to the surface and out of our eyes in the form of hot, sticky truth:
Life will always be harder for our son.
Whether it’s being accepted by his peers or his teachers, or learning to swim. Whether it’s absorbing basic math or figuring out how to put on his shoes. Whether it’s asking someone to be his friend when he doesn’t have the words or gaining competitive employment one day.
It will take him more effort. It will take us more effort too. And sometimes, the added challenges feel isolating. Sometimes, my heart aches to see how the world responds to him.
The tension that rages is knowing he is both my greatest teacher, my greatest joy -- and parenting him, advocating for him, and watching him navigate this world that is not accommodating to him is also my greatest struggle.
And sometimes that struggle, the truth of the hard parts that we sometimes push aside but are always present, is released in the form of hot, sticky, loneliness.
I sat there in that place where the words were spoken and quietly cried for a half-hour. My husband squeezed my knee, assuring me, we are in this together.
We left, hand-in-hand, moving forward with our day.
And that’s how this life beside our child goes. We cry and we move forward. We fight and we move forward. We rest and move forward.
We move forward in love, hoping tomorrow is a better day. We move forward determined to make the future a bit brighter. We move forward with the tension that never leaves us.
(via Jillian Benfield)
