But I Want for Something

Jamie and I had one of those weekends as parents.

You know, one that just depletes you.

Where you wave the white flag, but quickly realize no one seems to care and that you are the adults and you just need to survive.

We have a sick baby. A really, really sick baby who isn’t sleeping.

Sawyer had three hockey games. That I had to miss. Which made me feel terrible.

Cooper’s anti-anxiety medication seems to be leveling out again. Just like everything else we have tried over the years, it always seems to work amazing at first…and then stop.

He is hoarding uncontrollably again. And instead of just hiding objects under and behind the couch he is now hiding them in the couch too. And when he decides he wants something back…he moves the furniture around the living room.

It’s a lot.

He isn’t sleeping all that well either.

He wakes up every night, comes to our bed and then starts his day typically before 5 am.

So while that adorable smile of his gets us through…we are tired.

And on top of that we have had the snowiest February in Minnesota history.

So, it’s safe to say, we had one of those weekends.

And unfortunately, we have no help right now.

We just have to grin, make the best of the long days and lack of sleep, and get through it.

On Saturday night, Jamie and I found ourselves collapsed in our living room. I was nursing the baby and rocking. He refused to sleep and was fussing and moaning.

I’d been worried all day that maybe this was more serious than just the stomach flu. Jamie has even joined me in my worry. Which isn’t good for any of us.

When he worries…it’s feels serious. And then I worry more.

We talked about his symptoms. We talked about how we were each running on no sleep.

We talked about going on our first vacation in eight years. Except, we have no one to watch our children.

Our conversation turned to Cooper. Like it so often does.

We talked about his anxiety. His control of our house.

We talked about how we can’t go anywhere. And that makes everything harder. The isolation. The winter. The snow.

We talked about how we wished we could travel. Take our kids to Disney or somewhere warm.

How it’s a bizarre reality when you work hard to spoil your family and you can’t.

We talked about how Cooper needs so much care and it’s so much more visible now that the baby is here.

We talked about babyproofing for both children.

I mentioned how I had them in the bathtub together the other day and both put bubbles in their mouths. And in that moment it dawned on me that I can’t leave my 8 year old alone in the bathtub.

One of use said something like…’I can’t believe this is forever.’

We always say something like that. It’s our reality. And it’s settling in.

I made a comment about how his severity is shocking at times. We talked about the whys and the hows like only parents can do.

After a bit of silence, Jamie said…’You know Kate, Cooper wants for nothing. He just needs food, his house, you and me, comfort, WiFi and his Kindle.’

‘He is happy Kate. We have to remember that.’

I let myself think about that for a minute. I know he is absolutely right.

Cooper wants for nothing. He is happy. He is cared for. He is healthy. He is content.

And that is what matters. There is beauty in that too. Caring for a vulnerable child and giving them their best life.

But.

But.

I want for something. I know as parents we aren’t supposed to say that out loud. But I will do it. I will stand up and say it for the group of special needs parents that stand beside me.

I want for lots of things.

I want for peace in my mind, heart and soul.

I want acceptance. And I don’t just mean acceptance by the world. I want to accept this too. I want to be able to say, ‘My son is never going to talk, graduate, move out, get a job, or get married and I am okay with that.’

I want to truly, 100%, absolutely be okay with it.

I want to put down the emotional baggage I have been carrying for 8 years and accept that this is happening. And that I can’t change it.

I want to calm my constantly moving brain. The brain that is manically trying to remember it all. And manage his care. And keep him safe.

I want to calm the sadness in my heart. Especially as my other son ages, joins sports, makes friends and becomes a person and I can see so vividly now everything that Cooper is missing out on.

And I want to stop wondering why. And how. And why again.

I have so many wants.

I want to know Cooper will always be safe. And I want to know that he is truly happy. I want to know that he will be cared for forever.

I want to know if he is ever going to talk or if I should give up hoping.

I want to know what he will be like as an adult man.

I want to know if our family will ever resent this. Not being able to go anywhere. The chaos. The exhaustion.

I just want I guess.

I want to be able to say out loud how truly terrified I am. And how I am the kind of tired that sleep doesn’t seem to fix.

I want to be able to throw a tantrum once in a while. Stomp my feet. Scream. Cry. And saw damnit this just isn’t fair.

I want someone to make my kid talk. And play a game with me. And acknowledge his brothers.

I want so many things that others take for granted.

As parents we just keep going. We keep doing. We keep moving forward. Never resting. Never giving up. Always demanding the best for our babies.

As we should.

But when I finally take the time to sit down, and think, and absorb, I realize how my heart wants peace. And calm.

A full nights sleep. And maybe a break. Just for a day. Or maybe a weekend.

And mostly, I want to know that this is going to turn out okay. That my sweet, beautiful boy is going to be okay.

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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.