When Time Seems to Stand Still

I went for a walk tonight with my dogs. Like I try to do every night. It’s my sanity after long days. As I was walking I took note of four house being built down the road from mine. So much change. I let myself think about the house we moved into just a month ago and how I plan to live here the rest of my life. No joke. I’ve told Jamie he will have to carry my dead body out of here.

I let myself think about our 30 year mortgage. That’s a lifetime in itself!

In 30 years I’ll be 65. Sawyer will be 35. The same age I am now. He will be living somewhere else. I felt that quick stab to my heart. My baby all grown up. I can’t imagine him ever growing up and leaving. But I know it’s coming. I could have grandchildren by then!

I let myself think about the baby boy in my belly. He will be 30. That’s insane.

My boys will be grown.

And then I thought of my Cooper. Who just an hour before spent a few minutes in the front yard with Jamie and I. He ran, rolled, darted, threw dirt, even ate some. He flapped and clapped and had a few mini meltdowns. In so many ways he is still like a toddler. A big, loud, busy, curious toddler.

We were quite the scene. We could care less though. I like to say we bring diversity to the quiet neighborhood!

In 30 years Cooper will be 37. A man nearing middle age. He should have a career. Possibly be married. Most likely have kids. Own a home. Be on his own. Those are natural things to see when we look into the future.

But instead of seeing those things I just had questions. I felt that pit in my stomach.

Would he have any words? Would he have any awareness? Will his favorites still be Thomas and Barney?

Will time always be frozen? Or will he start growing up?

Will he still be living with us? I’m going to safely assume yes. I looked up at our new home. The home that is going to not only carry me and Jamie into old age, but also Cooper.  The rest of the babies will be gone. It will be just us three. Mom, Dad and Cooper. Our side kick. Our third wheel. The one who keeps us young.

And just like that I started thinking about time. And how weird it is when you have a child with significant needs. Part of me feels like no time has past with Cooper.

I know he is seven. I write his age and date practically every single day on some form or another. Or say it to a scheduler at a clinic.

I am buying size 8 clothes now. He no longer has a baby face. He is boy. A big boy. I am noticing that my back can’t quite carry him the way I used too.

My boy is growing up.

Yet, in so many ways, it feels like time has stood still since he was diagnosed.

Those common markers that we experience in life don’t happen with him.

My Facebook feed is filled with pictures of kids finishing another year of school. The post will be a photo of an adorable kid at the beginning of the year and at the end. The caption always reads something like…look how far they’ve come. Or look how much they’ve grown. All they’ve learned.

We all have our triggers. These photos are mine. First day of school and last day of school photos. I feel each one in my heart. And because of them I often avoid Facebook in September and June.

We live in a different world with Cooper. There is no start or stop to a year. He goes to therapy year round. Five days a week. He works on skills such as sitting, brushing his teeth, walking safely, and understanding the word STOP.

We don’t say he is in a grade. Although, when we see a first grade boy both Jamie and I take note.

There is no graduation. There is no first day of school. There are no school photos on the wall. There are no spring or winter sports. Or field trips.

We are missing other markers of time as well.

I notice I am still buying Barney movies for him. Peppa Pig and Dora are his best friends. I notice his interests aren’t changing as the years pass. Nor are there any new hobbies or friends. He isn’t up with the trends. He has no idea what is happening in the world around him.

I hear other moms of seven year old boys talking about Star Wars and Ben 10 and realize I have no idea what they are talking about. They are signing their kids up for sports or karate. They are so busy.

We are not. We spend our days at home. Same shows. Same breakfasts, lunches and dinners. Same bowls and cups. Same clothes every day.

He wakes up and every day feels like a repeat of the day before.

Birthdays’ don’t matter to him. He doesn’t ask insistently about his birthday like his brother. He doesn’t plan his party months in advance. We don’t pick a theme. Or invite everyone his his class. Instead, we have a small family party for him. It’s the same every year. Thomas the Train. He’s never cared. But I do. Jamie and I care. He is our boy and we want to celebrate him.

I even think of the four seasons. In the winter my other son loves to build snowman and forts. In the summer it’s riding bikes and swimming. In the fall it’s trick-or-treating and carving pumpkins. In the spring its finding Easter eggs and mud puddles.

None of these common markers of time matter to Cooper. Not one.

The seasons never change when you spend your days on a Kindle. Or when you don’t like being outside.

Time. It’s clearly happened. I am getting older. He is getting bigger. And yet, almost everything else is exactly the same.

Some days it feels like time is measured by the evaluations we do every six months or a year with his social worker. ‘Does he have any self-care? Six month ago you said no. Is he still self injuring? Six months ago you said the behavior was severe. Is it still severe? Less? More?

Another evaluation. Another diagnosis.

Some days I have to pull myself out of the time warp. I have to remind myself that he is growing. I am aging. And that time is indeed moving.

I have to force myself to acknowledge how hard it is emotionally to have a child that isn’t growing up. And that some day he will be 37. A man. And I will be 65. It is coming. Only I can’t quite picture what it will look like. My heart and mind won’t let me. Not yet anyways.

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 and subscribe to our newsletter.

Interested in writing for Finding Cooper’s Voice? LEARN MORE