The Mighty Logo

Let's Be Honest. Special Needs Parenting Is Hard.

The most helpful emails in health
Browse our free newsletters

It’s hard. Let’s be honest.

People forget your child is sick; she looks normal. If her shirt isn’t off or if she isn’t breathing hard, you’d never know. You’d never know I’ve seen her d-i-e twice. I spell it out because she knows what that word means. She can tell you what d-y-i-n-g is like. She can tell you exactly what she saw when it happened.

Let’s be honest. It sucks. My marriage suffers. My freedom suffers. My dreams are all but nonexistent. I’m 28 now; I was 22 when it started. Six years ago. She’s almost 5. I hardly know how to act in social situations. No one understands the anxiety, the heartache, how hard it is every single day. Her heart could stop at any time.

Let’s be honest. It never ever for a second leaves our minds. Some days are just too hard to handle, maybe not because of an event or episode but because it’s simply just easier to throw your head in a pillow and scream or cry or take an Ambien and hope to get some sleep. Some days I can’t keep my eyes open.

image1 (6)

Yes, we’re grateful for every day, but every day is hard. Basically, I just want to call my mom. I want her to make it all better.

Let’s be honest. This s*** is hard. There’s basically no easy aspect of it. But she has to live with it. I want to take it from her and put it in my body. I think everyone in the special needs community can agree that the worst part is not being able to “save” our kids. We have to live with it, love them through it and do our best, but we can’t save them; we can only be there and do our best.

Let’s be honest. It’s hard. You’re all amazing. We’re in a special club, I imagine we should get membership cards that give us free massages and babysitting from a nurse at least once a week. Until then, cry when you need to, drink a lot of wine, have breakdowns that make you seem insane; who cares? I bet if you ask your special needs kiddo who the best momma/daddy is they will point to you. So keep on keeping on. There’s a force behind you, a group of people willing to help, a community of thousands who get it.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Originally published: April 13, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home