Chasing Charlie looks back at how the Buddy Walk, a nationwide event to celebrate individuals with Down syndrome, can become so meaningful -- especially when Maureen quits trying to plan the perfect photo op.

I'll admit it. This week, I tried to control a national event. Maybe not with a bullhorn or clipboard, but in my head, I had a formal run-of-show (hello, control freak PR woman) and a list of photo ops. I tried to create Maureen's Buddy Walk.

Now, the real Buddy Walk is a festival-esque community party held nationwide to raise funds for and awareness of Down syndrome (Ds), which is the most commonly occurring chromosomal abnormality. My son, Charlie, is 28 months and has Ds.

The Buddy Walk celebrates individuals who happen to have Down syndrome.

It's also one of the biggest off-site parties our family hosts. Each year, we are overwhelmed by the tremendous support Team Charlie receives.

Of course, each year, I learn important lessons about my event preparation skills. (Yes, I can even make a day within the National Down syndrome Awareness Month completely about me.)

Moms are underpaid MLB catchers

That was my lesson this year.

Like catchers, moms are smart and call the shots. (What? Am I wrong?) If we're really good, moms (just like catchers) can adjust quickly to changing conditions. Notably, catchers can be revered for their defensive skills even if they can't bean a pop-up gopher at a carnival.

Sometimes, we call a perfect game. At this year's Buddy Walk, I took a perfect game into the ninth.

And then my pitcher fell asleep.

Let's start at the beginning

At our first Buddy Walk in 2010, Charlie was only four months old. I wore running shorts, like we were actually going to get some exercise, and a size large T-shirt that made me lament my still-clinging baby fat (Charlie baby fat -- my youth was entirely fat free -- a regular source of nostalgia).

The reality of that first walk? I had a newborn. Everyone wants to hold a newborn. I never broke a sweat. I look back now at pictures of Skinny Me and wonder if I could get those shorts around my wrist.

That year, we raised $5,000 for the Down Syndrome Association of Greater Charlotte and marveled at the support from family, friends, colleagues and reconnected friends on Facebook. We thanked the hot dog vendors for feeding our family and friends in exchange for cash, because I had packed only bottles for Charlie.

Truly, it was an emotional day, because it was the first time we were surrounded by families with children who have Down syndrome and are all ages and demonstrate all levels of capabilities.

I will be honest. As a parent, reality up close like that can be scary as much as it can be comforting.

Buddy Walk: Round 2

The second year, we got more organized and again, incredibly, we reached our goal of $5,000 thanks to outstanding support. I also was about eight months preggers, so I wore flip flops and a men's XL Buddy Walk T-shirt stretched across my bursting abdomen.

I ordered a Team Charlie banner. We had a tent. I even baked pumpkin bread.

The reality of the day? I had a cute, smiley toddler -- everyone wants to play with or hold a cute, smiley toddler.

I broke a sweat trying to reach for more pumpkin bread.

My almost perfect game

This year was also the first Buddy Walk at which my favorite little buddy could actually walk.This was going to be The Year All the Hard Work Paid Off.

This year was our third Buddy Walk -- pretty impressive when you consider Charlie is only two years old. By this year, Team Charlie fever had spread nationally.

We had loved ones emerge with creative fund raising ideas, from wristbands emblazoned with "Charlie is my buddy" (Jarvis family, you rock!) to a Realtor newsletter advertising the Buddy Walk and our beautiful boy (thank you, Auntie Paco!).

We even had friends leverage their own friends to raise money (have you liked VP Coffee lately?). We had friends bring friends to the Buddy Walk.

This year was also the first Buddy Walk at which my favorite little buddy could actually walk. This was going to be The Year All the Hard Work Paid Off.

I envisioned tearful, candid shots of Charlie walking the path, with his sister, Mary Emma, on his heels. In one daydream, she learned to walk the day before The Walk. (It's OK to put unrealistic pressure on your children in your mind so long as you don't open your mouth or blog about it.)

This year, I was prepared. We packed cameras (both still and video), drinks for kids and adults alike, and enough sugary snacks to bribe an elementary school campground.

We packed two tents, chairs, a table. We re-hung our Team Charlie banner -- because I'd remembered not to date it last year, so it would be timeless. That's championship mommying right there.

The curveball: Naps

By the time Team Charlie rounded the first turn of the one-mile trek, both kids were snoring...

What I didn't take into serious account was something as basic and necessary as… sleep. As thousands assembled to begin the walk around the pond at Freedom Park, both children whined and squirmed from their double stroller, the sun beat down on us and my imagination dissolved into reality.

By the time Team Charlie rounded the first turn of the one-mile trek, both kids were snoring amid the chaos of thousands of individuals trying to walk, cheer and photograph simultaneously.

I broke a sweat trying to recline the kids' stroller seats so they could nap without their bodies pretzeling.

We stopped at the spot along the path where a photo of Charlie was secured into the ground, celebrating that we had raised a magic amount by a magic deadline to secure his glamour shot. The resulting photograph shows stroller canopies covering both children from the hot sun as they snoozed.

The Husband cleverly tried to recreate Charlie's pose but, in the blinding sun, he looks like he's pointing out a zit on the photographer's cheek.

We have several group shots of Team Charlie at different stages that day. As Team Charlie members passed in and out of our tents throughout the day, I typically had one eye, hand or both on a child while greeting and thanking each friend.

At times, I bounced between children so much, I couldn't recall who was clinging to my sweaty back until I peeled their sticky, chubby faces from mine to remember.

I forgot juice boxes. Mary Emma had pumpkin munchkins for lunch. Charlie had to pose for new pictures in our back yard that night, recreating my vision of discovering his lawn sign. My plans to make chili and have everyone back to the house dissolved into takeout and a cold shower, not in that order.

As we collapsed on the couch later that night, reflecting on the day, my mental checklist began, ticking all the things I need to do differently next year.

And then I glanced at the children's video monitor and saw my beautiful son flopped spread-eagle in his crib, recovering from a day of Buddy-dom.

His perfect, peaceful face brought the Buddy Walk back into focus and each year's experiences:

  • Realizing my children were surrounded by older kids jockeying to play with them.
  • Witnessing my daughter con morsels of treats from anyone who had them, including a startled squirrel.
  • Feeling grateful as friends from different corners of our lives get to know each other.
  • Bringing Team Charlie together, under one very hot tent, to spend just one afternoon celebrating our special boy and all the wisdom he's shared with us amid his Wiggles obsession and fondness for dancing monkeys.
  • Realizing that our little boy has expanded our family exponentially -- and in turn, our hearts.

I am very good at making things about me. And Charlie is very good at bringing me back to my senses.

Read more about special needs

Having a sibling with Down syndrome
One mother's plea to stop use of the 'R' word
The truth about my child with Down syndrome

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