My Son has Never Been a Burden

I received an email last night. It was from a disabled adult. She self identified that way. She told me that she feels like a burden to her family. She feels guilty. She feels sad. She feels awful for the stress her disability has caused her parents. She worries that her siblings resent her.

She said she lies awake at night wishing she could make her parent’s lives easier. She feels like a burden.

I read the email over and over again.

And I felt like I’d been punched in the stomach.

I have a son who is disabled. He needs around the clock care. His autism has impacted our life in every way possible. This is our life.

And yet, he has never, not once, been a burden. But what if he someday feels that way too.

I think as parents our words can be perceived negatively sometimes. Especially if we share our struggles out loud. We talk about the hard times. Our exhaustion, worry and fear shows in our faces and actions.

When you live in the special needs world, we often talk about the hard times because we need too. We need to find others that live in our world. We need to know that there are other kids out their like ours. And that other families feel the stress too. We need to know that we aren’t alone even though the isolation can often be deafening.

I think sometimes it can sound like we are complaining. Even though we are not.

I’ve learned over the past seven years that it’s the hard times that almost break us. And it’s the hard times that bind us together. The hard times make us stronger too.

We talk about the struggles because they matter. Because they can be shocking, scary and isolating. We talk about them because sometimes we have to remind ourselves that we will make it through. We will come out stronger.

And it doesn’t mean we love our babies any less. It just means we are going through something hard.

As I reread the email I couldn’t believe this young woman could ever feel like a burden. Now, I don’t know her story. I don’t know her disability. I don’t know her parents.

What I do know is the intense love for a child.

My son is seven. He is autistic. He is nonverbal. He has medical issues. For years he didn’t sleep. He struggled to eat. He refused to communicate.

We still can’t really leave the house. We’ve had to make really tough, agonizing decisions about his care.

We’ve felt the strain on our finances. Our jobs. Our marriage. We’ve lost friends.

For years, Jamie and I felt like we were straight up surviving. That’s the truth.

But never, not once, has our son ever been a burden. Never. The thought has never crossed my mind.

We’ve had to have really tough conversations about the future. We’ve accepted that Cooper will most likely live with us. We will buy a home to accommodate his care and needs. We will start saving for his care after we are gone. Some day, we will have a discussion with family and our other children about Cooper’s needs after we gone.

Oh the tears we have cried over the future.

We aren’t saving for college. We are saving for a group home. A good one.

But through it all, my autistic son has never once been a burden. Nor will he ever be.

I think about the events we’ve missed. And there are a lot. Jamie and I are constantly divided between our children. One takes Sawyer to his t-ball game or play date. One stays home with Cooper. I think about the family vacations that could have been. I think how different the summers could be.

And never once has the word burden come to my mind.

Hard at times…yes. Challenging at times…yes. Burden….never.

I think about all the times I’ve bathed him. Wiped him. Dressed him. The kicks I’ve taken during haircuts. The sprints after him. The bear hugs to keep him safe during a meltdown.

And then I think about the kisses. The hugs. The smiles at his trains. The games of Peek-a-Boo and This Little Piggy. I think about how he has the best laugh of any child ever. His smile can literally melt your heart.

I think about how he rests his hand on my cheek when he needs to know I am near. And how he demands that we snuggle him every single night. I think about how he is my shadow. How he loves to be tickled. And dances naked in front of my mirror while I do my makeup in the morning.

I think about how he brings me more joy than I ever thought possible and how I couldn’t love him anymore. I think about how blessed I am to have him. God picked me to keep this little, vulnerable boy safe for the rest of his life.

I think about every milestone he has accomplished.

And I think about how his dad and I do it it willingly. We do it with love and patience.

And I will never stop. We aren’t looking for a pat on the back. Or a gold medal.

Simply put, we are his parents. And Cooper is our son.

Just like our other son he is a blessing to us and only made our lives better. The hard times could never overshadow that.

And while I know I will worry and care for him until the day I die, I can say with utmost certainty that he will never be a burden.

So, to the woman who emailed me. While I don’t know you personally, I’d like to think I can speak for your family. You are their daughter. You are their light. Their love. Don’t ever doubt that. Your parents would lay down their lives to give you a better one.

Please don’t ever feel like a burden. You are a blessing to them. I can say with certainty that you are the best thing that has ever happened to them.

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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