Mama, Will I Ever be an Uncle?

Grief is not linear my friends. I know that better than anyone. One day you are fine and the next you are not. That’s just how it goes I guess.

But lately, I have reached a place where I am okay with my son’s autism. I’ve done the crying thing. I’ve done the heartache and worry. I’ve done the desperation. I’ve come full circle. I’m in an amazing place. My son is thriving. He is farther along than I ever thought he would be. At age seven he is communicating with his Speech Device. He is potty trained. He eats, sleeps and is even starting to interact with the world around him.

Everyone in our family is on the same page. We have amazing services and his village in tact.

I can talk about autism with realistic hope. That one took years.

So, you can imagine my surprise yesterday when the grief snuck up and blind sighted me.

It happened during a conversation with Sawyer, my four year old. Sawyer is an amazing, insightful, busy, outgoing, social little kid. And he has the most amazing thoughts about autism. We have been talking about Cooper’s autism since he was diagnosed. We are very open about it. And I credit that to Sawyer’s wisdom around being a special needs sibling.

Many of my favorite conversations with Sawyer happen in the car. I’ll be driving along and he will be chatting away. Most times I can’t even get a word in. He talks about dinosaurs, space ships, Teenage Mutant Ninja Turtles and Santa. I can say with certainty that Sawyer never stops talking the whole entire drive. And I love every second of it.

Yesterday’s conversation was especially tough. He managed to bring up something I had never thought of before. And as a mom to a disabled child I thought I’d worried about it all.

It started like this.

‘Mama, what will I be like when I grow up? What will I do? Where will I live? Can I be a Digger Man? Or a Power Ranger?’

Well Sawyer, you can be whatever you want. You won’t be a little boy anymore. You will be a grown man. You will have a job. You will get married and have babies. Do you want babies?

I watched Sawyer’s huge brown eyes in the rear view mirror as he exclaimed, ‘WHAT? I will? I’ll be old mom? Like you and dad? What will I do with a baby?’

I started giggling and and answered, You will love them honey. Babies are the best. You will have your own Cooper and Sawyer.

‘What if I don’t want them mama?’

I told him he didn’t have to have babies. Although I reminded him how much he loves them. He’s always the first kid to run up to a baby and kiss and hug them.

I watched him thinking and then give me the hugest smile.

‘Mama, I think I just want to be an uncle. I think uncles are the best in the whole wide world. They play and have fun. That’s what I want to be. An uncle. Mama, how do I get to be an uncle?’

I was stunned. I didn’t know what to say. I felt like I had been punched in the stomach.

For years, I’ve thought about the future. I’ve pictured Cooper living with us. I’ve pictured myself caring for him well into old age. I’ve pictured shaving Cooper. Bathing him. Dressing him. I’ve pictured Jamie and I traveling the world in and RV with Cooper. Cooper will be with us forever. And it took me years to truly accept that. Not the fact the he would be with us. That’s a no brainer. Of course I want him with us. He is my baby. But accepting the fact that his future was different than the one I’d dreamed of for him was hard to accept.

I call it realistic hope. A realistic picture of the future.

I grieved everything I wouldn’t have as Cooper’s mom. I grieved his college graduation. I grieved his first job. First girlfriend. I grieved dancing with him at his wedding. I even grieved the grandbabies that I would never have. It was awful to say goodbye to those milestones. Those typical parts of life.  But I did it. I said goodbye to that future and turned my energy and focus to giving Cooper his best future.

I sat there driving, staring straight ahead. I felt like time had stopped. I felt sick. In all of my scenarios where I pictured Cooper’s future, never once did I picture that it would be different for Sawyer too. I mean I knew he didn’t have a typical brother or a typical relationship. That part I got. I knew that one day I would have to have a conversation with him about caring for his brother too. But never once did it dawn on me that he wouldn’t be an uncle.

I felt silly. How had I missed this?

Sawyer repeated himself, ‘Mama, how do I get to be an uncle?’

I tried to think about my answer. I tried to hold back the tears that were burning my eyes.

Well, baby, you become an uncle if Cooper has babies.

I watched him again in the rear view mirror as he processed what I just said.

‘Mama, am I going to be an uncle? Just tell me? I don’t think Cooper wants to be a daddy. He doesn’t like babies. I’m never going to be an uncle, am I mama?’

By this point tears were streaming down my face.

I was blindsided by this simple question from my four-year-old. By this tiny glimpse into our realistic future.

And there it was. Grief. Sometimes I feel like raising a disabled child is like have a fork in your side. Some days you don’t feel it. Some days it is twisted.

This one shocked me. It had come out of nowhere. I immediately saw visions of Sawyer being alone at holidays. I felt guilt over not having more children. I felt the pressure of Cooper’s diagnosis and future on not just me but Sawyer too.

If you live outside the special needs world this might all sound ridiculous too you. My kids are seven and four. Why would I be thinking about them being adults and having babies. The answer is simple. I’m human. And having a child with a life long disability changes everything. It changes relationships, emotions and futures.

I pulled myself together and said, Oh, bud. I don’t know if Cooper will have babies. He has autism honey.

And in true amazing super hero fashion Sawyer replied, ‘I still love my brother mom. But I really hate autism sometimes. Now I don’t get to be an uncle and that’s all I really wanted to be. I would have been so good at it. It’s just not fair.’

I finished crying by the time we pulled in the driveway. I parked the car and scooped him up as tight as I could in my arms and said, It’s not fair babe. None of it is. But you sure are doing a great job as a little brother. Some would say the best.

And just like that he smiled and ran off.

I felt like I’d ran a marathon. He had no idea what we’d just talked about. I did though. I saw a whole future before my eyes. And just like that, with a twist of the fork, the grief was back.

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.