A Letter to My Son on His Birthday

My sweet boy,

Today is your birthday. You are growing up. I think most parents would say, ‘where has the time gone?’

I don’t feel that way pal. I remember every single moment. Every high and low. Every regression and every victory.

I feel like I can remember every sleepless night. I think about the hours I spent rocking you in the recliner and pacing around the living room. I can even vividly remember being a new mom and crying at the side of your crib because you didn’t sleep.

You consumed every ounce of me.

I would stare into your eyes and wonder. Hope. Pray. Smile. Even cry.

I feel like we’ve lived a lifetime together Cooper. And we’ve experienced every single moment together.

I can tell you about every one of your milestones. I remember the exact date you first jumped. I know it by heart because we worked on it every day for three months.

You were standing in front of the television watching Thomas and those little feet left the ground. You were almost four years old. You would have thought you spoke a second language by the way I reacted.

I remember the day you ate your first raspberry. Drank from a cup. Used the toilet. Slept through the night. I remember it all Cooper because we worked countless hours on every victory.

None of them came naturally to you.

Your victories are my greatest moments Cooper.

I can recite all of your behaviors from memory too. Your dad and I mark periods of time by them kiddo. We still laugh about the days we sat in the dark. And the months we couldn’t use our chairs. Or the hundreds of toothbrushes you’ve destroyed.

My heart will forever melt at your love for photos.

You and I have walked, crawled and scooted every inch of this journey together. We’ve moved five times. Three different cities.

Countless hours of therapy. Different schools. Different programs. And oh, my lord, kid don’t even get me started on the doctors we’ve seen. You probably don’t remember them all. I do. I’ve yelled, advocated, persuaded, demanded and cried all on your behalf. All while chasing and wrestling you.

I’ve explained autism to people way smarter than me.

I was your voice right from the very beginning. I remember demanding x-rays, tests and appointments with such determination even your father was afraid of me. Being told no only made me try harder.

I believed if I did more, more everything, I’d fix you. I’d make you better. And you’d be fine.

I think about the hours I’ve spent on the phone arguing with insurance companies.

I remember times where I’ve explained autism to total strangers over the phone while watching you sit on the floor and hit yourself in the head. Or squirm in pain and think, ‘help me! My kid needs help and you are making this so impossible for me.’ I remember asking one social worker if she’d ever met an autistic child. Did she know what I was going through.

I think about the number of people I’ve told about your vaginal birth. I’ve filled out dozens and dozens of evaluations. I’ve checked boxes, summed up your behaviors in five sentences.

I’ve described our worst day.

I remember fighting to prove that you had autism, all while hating myself. I was the one that had to do it Cooper. I felt like I was letting you down.

I secretly hated myself for pushing for a diagnosis. I knew from the day your were born that something was different. I felt it in my stomach, my heart and my soul. It was so blatantly obvious to me. I was the one that told the Pediatrician.

I remember every second of that day vividly. I had stayed up late the night before, long after I should have been sleeping, researching autism. If I answered the online questionnaire just right then you didn’t have autism. Then I’d doubt myself.

I said the words out loud to your doctor while wrestling your squirming, screaming body in my arms. I was covered in sweat. I was exhausted. I remember the doctor looked at me and said I was worried about nothing.

Boys did everything late. I should relax. Enjoy my son.

I cried the whole drive home from that appointment. And so did you. Just like you always did. I remember being bombarded by thoughts and emotions. I felt guilt for asking about autism. I felt anger, confusion and sadness. But most of all I remember thinking…’If it’s not autism than what is it?’

Your dad and I used to joke that you were our challenging child. We’d joke that you would always live with us. And then the joke started to become a reality.

I’ve been with you every step up of the way kid. I’ve made every phone call. Researched every therapy and diet. Sometimes I wonder if you ever think I’m crazy. If you could talk would you say, ‘chill out mom. I’m fine.’

Certain sad moments are burned in my brain. I remember the woman that told me you would never talk, make a friend or ride a bike. You were 18 months old. It was, to this day, the most difficult thing that has ever been said to me.

I remember driving home from therapy appointments, crying, exhausted and wondering what was happening to my child. I’d call your dad at work. I’d whisper into the phone because I didn’t want you to hear.

‘Something isn’t right Jamie. This is really serious. I don’t know what to do.’

I think about our happiest moments too. I remember when you hugged me for the first time unprompted. I cried. I remember when you finally pooped on the potty for the first time. There was no greater joy. Or when you wrestled with your brother for the first time. Or the time Sawyer said to me, ‘my brother loves me mama. He’s starting to like me.’

You and me kid. We’ve done it all. In the beginning I carried you in my belly. And over the years you’ve moved from my arms to my back. You’ve gotten bigger. Stronger. Smarter.

I’ve held your hand during every walk, short or long.

Even today as we were walking out of school you fought me on the hand holding. You looked up at me and smiled and pulled your hand away. I squeezed it even tighter. I’ve restrained you when necessary. I’ve carried you over my shoulder more times than I can count. I’ve sat on floors of stores, parking lots and waiting rooms while you’ve melted down.

I’ve felt people’s stares. I’ve felt people’s judgement. I’ve even felt their silent support.

I’ve been humiliated, questioned, even yelled at by strangers. I’ve doubted myself. I’ve made agonizing decisions. I’ve felt isolated and alone.

I’ve been hit, kicked and scratched. I’ve taken a head to the eye and lip. I’ve watched you hit that beautiful head of yours in frustration.

I’ve administered medications and enemas. I’ve looked into those eyes as you’ve been put under anesthesia. I’ve stared into them as I’ve washed your feet in the bathtub and wondered if I will be doing this for the rest of your life.

I know every single inch of your body. I’ve studied it for bruises and marks. I’ve stared at your face and wondered if I’ll be shaving it one day.

I’ve begged you to talk to me. I’ve begged God to take your autism away. I’ve even begged God to transfer it to me. I can think of the countless nights where I’ve cried myself to sleep. Or even worse nights when the sleep wouldn’t come. I’ve pictured every moment of your life Cooper. I’ve pictured you as a man. I’ve pictured you after I’m gone.

Some days autism makes me so mad Cooper. And some days it breaks my heart. I need you to know where that anger and sadness comes from. It comes from a place of fear and unknown. I’ve laid awake at night wondering if I could remove the hard parts of your disability, would I? Would I take away your struggle?

I remember when I found out I was pregnant with your brother. You were just over a year old. We lived our lives in doctor’s offices. We had no words, no sleep. You had stopped eating all foods but milk and yogurt. You had never sat. I knew you were autistic. I knew it in my heart and soul Cooper.

I was so scared that I was pregnant. And also a little bit mad. You consumed me sweet boy. You were my whole entire world. I was your person. And you were mine. How could I be expected to love another person in that same way.

And secretly I’d lay in bed at night wondering how another child of mine could be any different than you.

Cooper, I want you to know that I’m scared. I have no idea what I’m doing.

I was given the gift of you and some days I don’t know if I’m strong enough to do it. I don’t know if I’m making the right decisions.

For years, and even to this day, I climb into bed with you after you’ve fallen asleep. I hold you and smell you. It’s the only time you aren’t moving. Throughout the years I’ve whispered different things into your ear. I used to beg you to talk. Then I asked if you were happy.

Now, I tell you that you are going to change the world. You can be anything you want bud.

I was never sad about you Cooper. My heart was never broke over you.

Mommy was sad because for years she couldn’t reach you. I would look into your eyes and I couldn’t tell if you even knew I was in the same room. It felt like I had a ghost in my house.

I had the crib, the toys, the clothes.

But the little boy could not be reached.

That almost destroyed me at first honey. But I never gave up. I told myself that some day I’d reach you. Someday you would hug me, kiss me and communicate with me.

And because of that, every single moment that you let me into your world is so special Cooper. I am so thankful for each one.

I don’t know what the future holds for us Cooper. But I do know that I will be with you every single step of the way kid. I’m not going anywhere. I’ll push when I need too. Motivate, encourage, and discipline too. I’ll put your quality of life and care at the center of every decision. I’ll fight for your best life.

Through it all Cooper I want you to be happy. Happy in every essence of the word. I want you to find joy doing whatever you want to do.

I want you to love your brother and know how much he loves you. I want you to play with him someday. He needs it so badly Cooper.

I want you to make a friend. I want you to know the joy a friend can bring into your life.

I want you be part of the world. I want you to be aware of your surroundings.

I want you to experience success and rejection.

I want you to have hopes and dreams.

I want you to talk my ear off about trains. I’ll listen Cooper. I’ll listen for the rest of my life.

I want you to know that you are safe and that nothing bad will ever happen to you. You are too loved kid.

I want you to know that I love you more than I can even put into words. I’m going to try though.

Thank you for making me a mother. Thank you for making me strong.

Thank you for bringing me so much joy. Thank you for showing me what it means to fight and defend. Thank you for showing me what it means to work for something. Thank you for opening my eyes to ignorance and pain. Thank you for teaching me resilience and perseverance. Thank you for showing me what really matters in life.

Thank you for including me in your absolutely beautiful world.

It was always you Cooper. You are exactly who you are supposed to be. And so am I.

Happy Birthday my sweet boy. You are, quite simply, the best thing that has ever happened to me.

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.