A Messy Marriage

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Marriage with a child with a disability.

It’s hard, it’s beautiful, it’s an adventure. It’s funny. It’s exhausting.

I think it’s a topic that isn’t talked about often.

Marriage is a challenge for any couple.

Throw a special needs child in the mix and suddenly, doctor and therapy visits consume your life.

The beginning is hard to talk about.

To say our son was a challenging baby is an understatement. He didn’t sleep through the night for four years. We functioned in a constant state of exhaustion. He screamed most of his infancy. He was never content. He had chronic severe ear infections and multiple tubal surgeries. He missed milestones. He was even misdiagnosed a few times. Because of his delays and no real diagnosis, the medical debt from therapy started piling onto the credit cards. Money got tight. And the pressure on our little family started to build.

The People We Used to Be

We chased hope for our son all over the state. It felt like we were living our lives in doctors’ offices. We moved three times, all for more services for our kiddo. God that was hard. We started to feel the strains of the isolation. We missed the friends that were lost. We missed the people that we used to be.

We started to disagree on everything. My husband thought we should keep living our pre-autism life. He saw all of our friends with young babies doing all the things that families do. He wanted that to be us.  He thought our son was fine.  I knew he wasn’t.  We pretended for a while though. We would go to BBQ’s and picnics. Cooper was small then so we could fake it. We could say he was tired or crabby that day. I became the queen of justifying. Every event was terrible though. I would spend events chasing Cooper. Or in the car so Coops could watch a DVD. Or worse yet, we’d have to leave after just a few minutes.

Then the financial strains really kicked in. One of us had to quit our job to meet the demands of autism. And boy did that interfere with the high price tag on all the private therapy.

I could feel the perfect life I had pictured slipping away.

I Became a Martyr

I took the lead on coordinating our son’s care. A role that completely consumed me in the end. I felt that no one could help Cooper as much as I could. I was the best at it. I started to feel that everyone else was inferior. I started to hate my husband for his lack of understanding and urgency.

Before we had children one of my favorite things about my husband was his laid-back personality. It was the perfect match for my energy. And after autism it was the thing, I hated the most about him. I felt like we were up against a deadline. We needed to get Cooper the most help we could before it was too late.

No matter how intense our life got my husband stayed calm. I felt like I was on the roller coaster alone. I was researching, finding therapies, fighting insurance companies, battling the county and the school district. And no matter what I did I couldn’t get him to sit with me on the ride.

So, I tried harder. I made it my mission.  I had to make him see the severity of our situation. I started manically sending him blogs and articles to read about autism.  And I’d barely get a nod from him.  He promised he’d read them…but never did. I’d make him watch Parenthood and YouTube videos of nonverbal kids. He’d barely give it a glance.

The Resentment

Our conversations soon became about our son’s care and solely his care. I’d talk about new therapies with a renewed spirit almost weekly. I’d find a new diet or tactic that was going to help our son. My hope would be renewed. I would be on top of the world. Until it failed.

And with each failure the resentment built between us. He resented my willingness to try new things, and I resented his need to keep our son the same. It became easier to carry the weight of Autism alone. I made the decisions. I dealt with the consequences.

I know he wondered what had happened to the woman he married. The woman who was vivacious, fearless and adventurous. What he didn’t know was I barely recognized myself. What he needed from me hung in the air. Always between us. My husband expected me to get over autism. He expected me to cry my tears, dust myself off, and keep living. He didn’t understand that I couldn’t do that. My heart was broken. And his wasn’t.

Thankfully, having a child with a disability didn’t break us. It actually made us stronger.

We Were Both Wrong

No, he didn’t cry the same number of tears or agonize like I did. He also didn’t see autism as a problem to be fixed. What he did do was love our son. He figured out how to connect with him in a way I thought only I could. He sat with him and watched his trains endlessly. He wrestled him and tickled him. He went to every appointment with me. He never missed one. He stepped up like so many people wouldn’t have done. He kept his patience during the chaos. He loved his autistic son more than life.

I realized that if we both would have been at my intensity level we would have crashed and burned around our son’s care.

But wow did we go through some tough years full of resentment and frustration. Looking back though, I truly believe that is the path we were meant to take.

And now, Cooper is 13. We have three other children. We have overcome so much. And yet, we are looking at the second half of our life. That comes with a whole new set of challenges.

What does retirement look like for us? Will we ever have an empty nest. Will we always need a babysitter?

The questions are endless. The answers are lost.

We just keep going through. Doing the best we can.

Catch up with me on YOUTUBE!

❤️ MARRIAGE ZOOM GATHERING HAPPENING THIS OCTOBER 23rd ❤️

Like many in this community, our bi-monthly Zoom gatherings boost my faith in humanity, as well as my own inner strength. Please join me this Wednesday morning for another Coop’s Troop gathering. Our topic will be a messy marriage with special guest, Jamie. This is a great opportunity to hear our story and ask questions. Paid subscribers will find the Zoom link and details below. If you are a free subscriber and would like to have the full community experience here at Finding Cooper’s Voice, simply upgrade your subscription. For the price of a coffee, you can experience lasting goodness and true connection.