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The Statistic I Didn’t Know When My Son With Down Syndrome Was Born

“We believe your baby has Down syndrome.”

You’ve just birthed a baby, a beautiful pink crying baby. And within moments, these are the words filling your brain. The thrill, the adrenaline of birth, the new, fresh excitement is weighed down, heavy, in the pit of your stomach, by that greedy monster of fear. The unknown. It feeds on fear like no other.

Then the statistics. Those cold, hard statistics handed to you in a perfect crisp folder that immediately begins to wrinkle under the sweat of your hands. Oh, and the faces surrounding you as you lay in your hospital bed. Everyone, the doctors, the nurses, family and friends, look down on you full of concern, sadness and the worst, pity.

Some well-meaning friends offer a half smile and “but he will always be happy.”

Your mind swirls with all of the new doctors you and your baby will soon be visiting: geneticists, endocrinologists, cardiologists, ENTs and ophthalmologists. How fast your mind can go from feeling bright, wide and expansive, to shrinking within the sterile confines of four white walls of a hospital room.

Where are the colorful bouncing balloons strung up with pretty ribbons? The flowers? The smiles, the laughter, the blue cigars?

Fast forward nine years later, we are at your son Wil’s birthday celebration. It’s in a bowling alley/arcade. He has just bowled a game with 11 of his friends from school, many of them girls; the girls just love him. Wil and his friends will soon enter the arcade, where Wil will swipe his game card and play all the same games as his friends. But now they are all about to dig into their chocolate cupcakes. Wil is poised over his cupcake, sucking in a deep breath, ready to blow out the bright flame of the number nine candle stuck in its center. His friends sit lined down the table, hands raised and waving in cheer.

Even outside the borders of this birthday picture, the story continues to unfold. There stand the mothers of some of these children who have helped pass out pizza and now the cupcakes. They are refilling cups of fruit punch and Sprite. Most importantly, they are raising children who love and support Wil.

According to Wil’s friend, Seeger, who is sitting at that birthday table, Wil spends 5 percent of his life giving hugs. He’s also quite good with his manners. Seeger wrote Wil a personal friendship note thanking him for “being a good friend and saying please and I hope your day is fun and awesome.”

Yes, those statistics in that heavy folder that was handed to me on Wil’s day of birth are very real and very important. But, what I didn’t know nine years ago that I do now is there is always a bigger story outside of the folder, outside of the four hospital walls and outside the border of every picture. No one snapshot can ever tell the whole story.

In March, Wil and I will sit on a panel in front of medical students at Wayne State University. They will want to know my personal story in how to present facts about Down syndrome to brand new parents. I will share with them what I believe is one of my son’s most important life statistics: that Wil spends 5 percent of his life giving hugs. Isn’t that just awesome?

9-year-old boy having a birthday party -- he and his friends are sitting at a table, eating pizza and cheering as he starts to blow out the candle on his cupcake

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

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