Letting Out The Breath You’ve Been Holding For So Long

‘The best feeling is watching things finally fall into place after watching them fall apart for so long.’

The beginning was so hard. Before the autism diagnosis. The unknown. The hating myself for suspecting something was wrong. The watching all of his peers and even younger kids pass him by. The exhaustion. Never sleeping. Wondering why my baby was different.

The fighting with my husband because I saw something he refused to see. The hoping it was anything but autism. Late bloomer. Boys will be boys. Holding my breath. Waiting. Defending my son. Defending his delays. Crying in the shower. Crying while driving. Crying behind my sunglasses.

Feeling like I was spiraling all the time. Chasing help.

Then fighting. Fighting with doctors. Fighting with educators. Fighting for answers, services and supports.

Then the diagnosis. Hearing the words out loud that I knew all along were true. Feeling an immediate fight or flight response. We could outrun this.

The praying it was wrong. Praying it wasn’t severe. Telling myself I could fix it. If I just did more. If I tried harder. Found the best help. More therapy. A new diet. A new tactic. I read every book. I found every blog.  If I just gave a little bit more of myself. Offering myself no grace. Good God I was hard on myself.

Having another amazing son. Praying he was okay. Studying him. Watching his every move. Crying so hard when he started to speak that I almost couldn’t breathe. Watching him surpass his brother. Watching him demand his brother’s attention and then eventually give up. Going to his play dates and games. Experiencing a typical mother-child relationship. Being so confused. Overjoyed. And sad.

I pushed friends away. I pushed my husband away. All that mattered was Cooper. And helping him. Getting him talking. Getting him interacting. Kindergarten was the goal. If we could just get there this would be fine.

Then watching him struggle. Everything was so hard for him. Our circle got smaller. Realizing we couldn’t leave the house. Putting locks on the doors and windows. The behaviors. Hoarding. Chairs. Lights. Photos. Eloping. Self-Injuring. I started to lose myself completely. I felt invisible.

Then losing myself to autism. The worry. The forever. The severity. Acknowledging all the things we may never do. The words we might never hear. I cried in bed. In the shower. In the bathroom.

I coped with exercise. I coped with too much wine. I tried to lose myself in a way. I even ran from my life for a bit. Which was the biggest mistake I’ve ever made.

I would think about the future. About how the stress was driving a wedge in between our family. The never leaving our house. The screaming. His anxiety. The extreme pressure I felt all of the time. The juggling kids and activities. One of us was always home with the Cooper. That one was usually me. I was his person. His safety. His home. I started missing my life. And my husband. And most of all my other son.

I’d try and talk to family. To my husband. To my friends. No one understood what I was going through. No one could relate. My life was so different. My child was different. I felt like my world was closing in around me. I felt like a fake.

The medical struggles. Ear infections. Severe constipation. In and out of the ER. Food struggles. The meltdowns. Lack of sleep. Oh my god the isolation. The exhaustion. The begging my husband just to take the worry for a day. A week. Just let me know he would be all right. The praying. The anger I had at god. The why him and why our family.

Hitting bottom. Stopping public education. Learning to say no ‘this isn’t working.’ Becoming a mama bear. An advocate. Putting Cooper’s care, well-being and quality of life at the center of every decision I made.

Then giving up hope. But not in the sense that you think. I gave up hoping autism would go away. Or that he would snap out of it. I began focusing on reality. On communication and potty training. Ways to improve his life. And ultimately our families. I learned what realistic hope was. And it changed me. It brought me back to reality.

And finally, after nearly seven long years, all the services falling into place. The pieces coming together. Our family accepting and healing. Building his village. The feeling that we can take a breath. That it’s going to be okay. We can let our guard down. Everyone has his best interests at heart.

We found his therapy center. We found the right doctors and people. We settled into autism. And so did he. We built a community. A circle. A home. Our love for our son is undeniable. He will never question that.

Today, we are completely different people. We are letting out that breath we have been holding for nearly seven years. It’s getting easier. Our son is growing up. And so are we.

Seeing him laugh. And smile. And be content. Join our family. Learn. Find his place. Find our place. Letting ourselves think about the future in a different way.

Thinking about autism as a teenager. A twenty-year-old. A man. Shaving. Bathing. Our retirement. Cooper’s life after we are gone. And not crying. I haven’t cried in almost a year. Not being quite so scared. Knowing that we will tackle this for Cooper. We will keep him safe and loved.

Realizing that our purpose is to give this amazing kid his best life. We are so blessed to have a Cooper. He has brought such joy to our lives.

The beginning was so hard. We don’t know what the future brings. And I know there will be hard parts. Scary parts. Unknown parts. This part is pretty amazing though.

We are learning to breathe again.

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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 and subscribe to our newsletter.

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  • Michelle

    September 17, 2018 at 5:29 pm
    Reply

    Oh my, he looks soooo much like you in the boating photo!!!

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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 my page!

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