I Need You To Promise Me

A glimpse inside the secret world of special needs parenting:

I was packing for my first trip away from my boys in ages.

My husband was watching the game. I was mindlessly throwing stuff in a bag. Rushed of course. Drinking a glass of wine. Worrying. Rushing.

I was talking through my time away. The schedule and such.

Cooper has speech therapy on Tuesday and Friday. Sawyer has hockey on Wednesday and Saturday. Don’t forget Cooper’s meds. The baby has daycare these days. Don’t forget his butt cream. I was babbling about the calendar even though I know my husband never looks at it.

And then I said the thing. The thing I always say.

‘Promise me Jamie that you’ll take care of Cooper if something happens to me.’

He was only half listening. I say this whenever I leave. I need to know.

‘Jamie, he can’t go to a group home. Not ever. You need to keep him with you. I’m not joking. Promise me.’

‘I need to know. I need you to take this seriously. I need to know he will be fine.’

He said, ‘Yes dear. I know.’

See, I worry about all three of my boys. But not equally. It’s not the same. Because the other two, they’d be fine.

I worry about Sawyer’s heart. He’s my old soul. My sensitive one that comes on too strong but calls people sir and loves snuggling. And the baby. Good god he’s perfect. He is the boss of our house. Without a doubt. The one we all gather around and watch.

But those two, they’d be fine if something happened to me. Or even both of us.

If something happened to me and my husband, I know someone would take them. Of course they would.

But with my Cooper, my precious boy, it would be different. Would someone want to take on a lifetime. It would be for forever. Not until he’s 18. It would be lifelong care. 20, 30, even 50 years old.

See, this is my destiny. My life’s work. A forever caregiver. At first I fought it. Said no. Not my son. I was scared. I couldn’t believe it. But now, this is me.

This is us. I will care for him. He is my person. And I am his. He is my world. Our world. We have planned our retirement with him at the center.

No one could ever love him like his father and I.

How could someone outside of our world understand.

Will they check his toenails and make sure his shoes fit.

Will they know to check is body for marks and encourage him to leave the house even though it’s hard.

Will they wipe his mouth and make sure his waistband on his pants isn’t bunched up.

Will they laugh at the letter E and dance to Thomas and hug him one hundred times a day.

Will they whisper ‘I love you’ in his ear every single time he walks by just so he knows how truly loved he is.

Cooper is my treasure. But will anyone else think that way? Or will he be a burden?

I’m scared all of the time.

Forever. I need to live forever.

This boy. He can never know anger or hurt. He’s too innocent. Only love and kindness. Only gentleness.

‘I won’t put him in a group home Katie. You worry about the silliest things. You are only going to be gone for two days.’

In my head I thought, funny, he thinks I only need to worry about the next two days and not forever.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.