My Friend Asked What It's Like Being a Dad to a Child With Special Needs. I Should Have Said This.

jack123456 Last week I met up with one of my single friends. He’s the world traveler type. He’s the guy who wanders the earth doing odd jobs to fuel his crazy adventures while putting whatever beer he can find to his lips. He’s the guy who exudes excitement and adrenaline. He’s the guy every guy wants to be when changing a diaper at 3 a.m. or getting “the look” because you forgot to put the toilet seat down.

He asked me, “What it’s like being dad and having all of that responsibility, especially to a kid who has special needs and leukemia?”

I answered, “It’s got its up and downs, but you know… It’s all good,” and shrugged the question off without giving it much thought. I guess my eagerness to hear his next story about kayaking in Mexico or parachuting in New Zealand made it easy to escape my own life for a minute.

Since our meet up, I’ve been thinking a lot about his question, and more important, about my stupid answer. I wish I’d told him the truth.

I wish I’d said…

“It’s the most difficult/rewarding thing I’ve ever experienced. These little patience-sucking minions keep you on your toes at all times. It’s freaking awesome to be a dad and watch your kid look up to you as if you were the coolest thing since flip flops were invented.” Side note: Seriously, flip flops are cooler than any dad. Period.

I wish I’d told him my reality. I wish I gave him an honest glimpse of what I think parenting a child with special needs is like. However, I don’t think too many fathers like me want to admit they have dark feelings/thoughts at times. Not many fathers like me want to say how jealous they are of kids who can verbalize they want to ride their bike or throw the ball. Not many fathers like me want to sit and tell you how scared they are if something were to happen to them, especially without setting up a special needs trust. Not many fathers like me want to chat about their kid who gets left out because he’s different. Not many fathers like me want to tell you how it took three years for him to hold a fork. Not many fathers like me want to admit their 5-year-old can’t say, “Dadda.” Not many fathers like me care to share how it hurts to see their son look at them with a blank stare, as if they don’t even see them. Not many fathers like me want to acknowledge they pin their kid down every night and force medicine down their throat in hopes that the doctors know what they’re talking about. Not many fathers like me want to admit this is really f*cking hard, and sometimes we want to crawl into a hole and pretend this didn’t happen. It’s that — and also people just won’t understand.

I wish I’d said….

“Yes, this is difficult. Yes, it breaks my heart. Yes, to all of the above and more. But I wouldn’t change a thing! My son has taught me the real definition of love and friendship. He’s brought me more adventure than any kayak run in Mexico or cliff jump in Patagonia. He continues to bring me joy, smiles and gut-wrenching laughter. He pisses me off like no other with his stubborn ways and sometimes encourages my alcohol consumption, but hell, he’s my kid! Go figure…”

I wish I’d said, “I am one lucky dad.”


Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

We Love This Glee Star’s Advice for Fans With Disabilities

Lauren Potter is an actor with Down syndrome best known for her role on Fox’s popular television show, “Glee.” On the show, Potter played Becky Jackson, a member of the school’s elitist cheerleading squad and henchman to its head coach, Sue Sylvester (played by Jane Lynch). Last night, “Glee” received recognition at the National Down Syndrome Association Masquerade [...]

Why You Don't Need to Look at Us With Pity

Tonight when I put Baby #4 to bed, he gave me a long hug. He doesn’t hug that much anymore. You see, he has faucets to find, dogs to bother, cabinets to clean out and laundry to scatter. He might play with toys if he feels like it, for sure if somebody plays with him, but [...]

Dear New Parents of a Baby With Down Syndrome, I Feel Compelled to Tell You This

Dear New Parent, If you’ve found this place, you may have just discovered that your baby has Down syndrome. You’re likely standing at a fork in the road. Whether your baby has been born yet or not, you’ll need to make choices now, in action or thought, that will change you forever. I don’t know you, [...]

When a Stranger Asked If I Was Going to Keep My Son With Down Syndrome

When my younger son was born, I was handed a sheet of paper, dated 1960. It described my beautiful, blonde, blue-eyed preemie as a “mongoloid idiot who would probably die before his 50th birthday.” I remember the heat wasn’t working in our hospital room. My son kept turning purple because he couldn’t maintain his body heat. His unexpected [...]