“This is the unseen life of a special needs parent.
I hesitated sharing this picture for a few reasons. 1) Between my mask and tears, the makeup on one side of my nose dissolved and made me look a bit like one of Santa’s reindeer. 2) I am still wiped this evening over the event that led up to this picture. 3) I’m not looking for your pity.
However, I am hoping for your understanding. Not just of me and my family, but of a special needs parent in your life.
I took this picture after my son with Down syndrome had a blood draw today. These are common for him. And they are almost always awful.
It should have been easier this time because the draw was taking place in a well-known children’s hospital. But it wasn’t. I didn’t listen to my gut when they wanted to try a finger instead of a vein.
My son cried as the tech tried to force the blood out of his still chubby index. It didn’t work. There was not enough blood for all the tests they needed to run. Then, he tried a vein. The blood wouldn’t flow. He tried again as I restrained my wailing 5-year-old. And then I lost it too.
Finally, a new tech arrived. She found a new vein and it worked. I cried as I thanked her. We both left bleary-eyed and spent.
I shed some more tears in my car. He did too.
This is the unseen life of a special needs parent. It’s the little traumas that add up in our hearts.
It’s how our kids don’t want to walk into a clinic because they know what’s coming even if they can’t express it with their words.
It’s how we sit around tables with educators who are supposed to believe in our kids, but they don’t want them to have a seat in their classroom.
It’s how they are trying to make friends but are rejected because kids don’t accept their differences—weighing on both of our hearts.
And the load gets heavy.
And heavier.
And heavier.
These little traumas are hard to communicate. That’s why they remain mostly unseen. But they don’t leave us.
Sometimes these little traumas change us. And that change can be so good. And sometimes these little traumas are just, well, heavy.
We wouldn’t change our kids for anything. We wouldn’t change how they have changed us.
But, damn, sometimes we wish we could lighten their loads.
And when we can’t, we cry in parking lots, unseen.”
Courtesy of Jillian Benfield
This story was submitted to Love What Matters by Jillian Benfield. Jillian is the author of the free e-book 5 Spiritual Comforts for Special Needs Parents. You can find her writing at JillianBenfield.com, Facebook, and Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
Read more from Jillian:
‘I carry him. I know it looks silly. His toes dangle past my knees. But still, I carry his awkwardly long body against my own.’: Special needs mom says ‘he carries me, too’
‘The doctor called…the blood screen came back, it’s not good.’ My heavy 22-week pregnant body fell to the floor. It’s normally at this point people want to talk about their options.’
‘Dear NICU Mom, I see you. This moment isn’t at all how you envisioned, but you are determined to embrace it anyway.’
‘My disabled child is not an ‘angel.’ He is not ‘celestial’ or ‘heavenly.’ He’s just like you, fully human.’: Down syndrome mom claims son ‘wasn’t sent here to teach you or me something’
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Source: lovewhatmatters.com
