When People Think Life Is Rough Because My Child Has Down Syndrome


It’s 10 a.m. I’ve had two cups of coffee but am dreaming of something stronger. I’m not even a drinker. I also can’t stop thinking about bedtime. Oh, precious bedtime. I need you. It’s been a hard day, so far. Really stinking hard.

When people hear that our youngest daughter, Willow, has Down syndrome, I think many jump to the conclusion that our lives must be rough. They’re right, kind of. Most of our days are peppered with problems, but Down syndrome isn’t one of them. I also don’t know if I can call our lives “rough.” Busy? Yes. Challenging? Yes. Abnormal? No. Take today, for example:

Willow woke up with a cold. I can’t blame Down syndrome. I can blame my daughter’s desire to put everything in her mouth, including the germ-infested belt that’s supposed to keep her strapped into my shopping cart. I sure hope it tasted good.

My dog got sprayed by a skunk. I can’t blame Down syndrome. I can blame a very rude rodent. Did I mention this happened in our backyard? At 6:30 a.m.! We live in the middle of the city, right next to a busy college! What business does a skunk have in my backyard?

I ran out of waffles and had to deal with crabby kids. I can’t blame Down syndrome. I can blame my husband. I buy my waffles from Sam’s Club and he always makes fun of me when I shop there. He claims I can’t go there without dropping a small fortune. In an effort to avoid his jokes, I’ve avoided going there. Apparently, that plan backfired.

I forgot to comb my hair and apply antiperspirant before leaving the house to run errands. I can’t blame Down syndrome. I can blame mommy brain. It just sucks that one of the places I had to go was the high school to turn in paperwork for a dance clinic my eldest daughter wants to attend. As I walked the halls, I felt like I was back in school myself. Everyone staring, whispering. I suppose I should also mention that I was wearing a bleach-stained shirt and Crocs. So not cool.

I dropped a small fortune at Sam’s Club. I wish I could blame Down syndrome, but I can’t. I blame stress. I also blame the skunk stench at my house. I needed to clear my nostrils so I shopped as long as I could. It worked! My nose felt much better! Unfortunately, I can’t say the same for the people around me. Remember the whole antiperspirant thing? I’m pretty sure the skunk smell is also stuck in my clothing.

It’s now 11 a.m. and I realize I’ve got a lot of work to get done. Laundry, dishes, more laundry, more dishes and I suppose I should also fit in a shower. Why am I still sitting at this computer? I can’t blame Down syndrome. I can blame life. While I know I should get some stuff done, this pile of words is the only thing bringing me pleasure at the moment. It allows me to forget about the smelly dog in the kitchen, ignore the fact that Willow’s runny nose might abruptly end her nap soon and dream about the good times. Because, when you have a child with Down syndrome, there are many.

Sure, life is rough. But Down syndrome is not to blame. In fact, Willow’s extra chromosome almost always gives me reason to smile. Like today. Amid the madness, Willow cruised along the couch for the first time. It’s something she’s been working on for months, and today she finally did it on her own. She was trying to get the container of yogurt I put on the other end of the couch. She got it! And, the yogurt? Well, it went all over the couch. Figures.

October is Down Syndrome Awareness Month. If you’ve read this far, I’m hoping your eyes have been opened to the fact that Willow’s diagnosis is not the reason for our hardships. Everyone has rough patches. Everyone has challenges. Life can beat us down, stomp on us and spray us full of stinky stuff, but that’s life! Blame luck. Satan. Skunks. Whatever you want! Just don’t blame Willow. Her 21st chromosome has definitely made our lives busier and has taught us more about the medical world than we ever wanted to know, but I can honestly say I wouldn’t change a thing. Willow is awesome. Willow is perfect. And, Willow is the only reason I smile on this stinker of a day.

Follow this journey on The Mighty Willow.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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