My Son, In the Moments You are Still

This morning I watched you sleeping. On a mattress. On the floor. Next to my bed.

You were still.

There was no sound. No silly songs blaring. No grunts or squeals coming from you. Just breathing. You were not moving. Your arms were not flapping. You were not running or rolling.

You looked like an angel. Your body and mind were content.

Seeing you still and peaceful Cooper is the most beautiful thing ever.

The fact that you are near us at night is very new in our world too.

Prior to a few months ago, you really had no time for us at night. You’d tell us with a hand gesture when you were ready for bed, you’d grab your treasures, and your blanket, and up to bed you’d go.

We’d follow behind, brush your teeth and put you in jammies and you’d be sleeping in minutes.

You never fought us. You never argued or asked for a dozen drinks of water or one more story or song.

You just went to bed.

And honestly, we’ve been thankful for this because for the first four years of your life you never slept.

But lately, you want to be near your family. And I soak up every single second of it.

Sleep has always been a tricky concept for you to grasp.

From day one you were always awake. Eyes wide open. Alert.

As a newborn, you slept 6 hours max in a 24 hour period. I remember your daddy coming home on his lunch break after being gone for four hours and me bouncing you up and down frantically and saying, ‘he hasn’t slept yet.’

Your dad did not believe me.

Just like no one else did. Not your doctor. Or grandma. Or my friends.

And even when you did sleep, it was for mere minutes. Your body was always moving. Always shifting.

I couldn’t figure out why.

Before I knew it, I’d lost 30 pounds. I was pale. I had huge bags under my eyes. My friends started questioning me about post-postpartum and depression.

I wasn’t sad though. I was just physically and utterly exhausted.

But you, you were big and healthy. You ate from morning until night. And then all night long.

What else is a baby supposed to do when they can’t sleep. Or shut their brain off.

I try to accurately describe you as a baby Cooper. Because people assume when I say you didn’t sleep that you must have cried all the time.

Well, that’s not true. It wasn’t that you cried. It was that you were never content. It was like your brain couldn’t shut off. You needed something that we couldn’t give you. Because we never figured out what it was. And I don’t think you knew either.

So we moved you ever second of your life. From the floor, to our arms, to the stroller to the swing. As long as you were moving you’d be okay. Car rides were a nightmare. Sitting was unacceptable. Laying down wasn’t allowed.

I remember when we moved you out of your crib to your big boy twin bed. Your brother was coming and needed your crib. You got the boot.

It was at that point that your dad and I alternated laying with you. You didn’t quite understand why you had to stay in the bed. And since you woke up ten times a night, we didn’t sleep either.

So, we’d lie with you. We’d hold you until you gave up the fight and fell asleep.

I want you to know just how much bothh of us looked forward to that every night.

We treasured the moments when your body was finally calm. Not because it was easier. Or quiet. But because you always seemed so full of anxiety when you were awake. Busy. Never content. You always seemed to be doing something. But never actually doing anything.

We joked that you were the only two year old that lead a purposeful life. We just were not sure what you would define as your purpose yet.

Your third birthday came and went and you still hadn’t slept through the night. By this point, you were obsessed with television and sound. You seemed to be surrounded in it. If we took you away from the TV you’d scream.

From morning until night it was Barney, Thomas the Train and Caillou.

You were never quiet. You never sat. You were never still.

But then bedtime would come.

I remember those days well because you were diagnosed with autism at age three. Our world is very neatly split up into before diagnosis and after diagnosis.

Every night, I’d hold you so tight. I treasured those moments more than I can even put into words.

I’d smell your hair. Of course I’d have to wait until after you fell asleep. Because these were the only times you weren’t moving.

I’d touch your face. And kiss your neck so gently.

You wouldn’t protest. You wouldn’t squirm away.

I’d tell myself that you knew how much mommy loved you.

Sometimes, I swear I had to remind myself that you COULD actually be calm. And that there was hope for the future. I’d tell myself that one day you would talk to me. And play with me. That this would be okay. If I just waited.

I’d use these moments to pray. I’d pray so loudly in my head and on repeat. I needed you to be okay. I needed you to start talking. I needed you to stop scaring me so much.

I needed this all to be okay.

Autism. That word. I knew it was coming.

But in those moments, the ones where I got to hold you, I could calm myself down. I’d trick myself into believing you were fine Cooper. Because, for a moment, you were. There were no behaviors. No screaming. Your anxiety was gone. And your body would be calm.

You would be still. For the first time in 16 hours.

You were just a boy. A perfect three-year-old boy.

Today, you are seven. We still hold you at night Cooper because during the day, you still never sit. With the help of therapy you are up to maybe 15 minutes a day. It isn’t much. But it’s something. Otherwise, you are moving. You are always rolling on the ground, crawling, flapping your arms or running.

You are like a flash sometimes.

So you can bet when mommy and daddy get the chance, we are loving you up.

I will be downstairs watching the news at the end of the day and daddy will come down the stairs and I will know he’s been holding you. This is your time. I don’t interfere. Just like he doesn’t interfere with mine.

I know we each say our silent prayers. Over the years they have changed.

We pray that you are happy. We pray that you know just how loved you truly are. We pray for words. We pray that we are giving you your best life. And, we pray for strength.

For the past five years or so, I’ve whispered the same words in your ear. The same words every single night.

And even though you are drifting off to sleep, I believe you hear them.

‘How lucky am I to have a Cooper. The smartest, cutest, funniest most perfect boy. Not every mommy gets a Cooper. Just me.’

In my eyes, there is nothing more true.

My son, I treasure the moments you are still more than I can even put into words. Because I know for a second, your anxiety is gone. And that’s all I’ve ever really hoped for.

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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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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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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