Christie Taylor Uncategorized

Blending Scenes

“The Buddy Walk is only one mile walk. I think you can handle it,” I joked. “And really, with so many people with Down syndrome, we don’t move fast!”

When The Peanut Butter Falcon was available for streaming, I didn’t want to watch it on my own. The viewing experience would be fuller with friends who knew Down syndrome. Whether the movie was good, bad or otherwise, we’d share in that knowing together.

A group of us moms got together at my house. The majority of us were raising teens, or kids that teetered on the edge of teenage-hood. We poured generous glasses of wine, loaded tiny decorative paper plates with dense dips, sturdy crackers and crunchy veggies, squished together on the couch, pulled up spare chairs, and settled in.

We erupted in laughter in the same scenes together, we shared audible silences in the same scenes together, tears leaked from the corners of our eyes in the same scenes together, and we enjoyed scenes of pure entertainment in the same scenes together. And we all wondered together, over the rolling closing credits, why Zak’s (the main character with Down syndrome) duration in underwear was deemed necessary.

Then in our post-movie review, we all first recalled the same scene together: Tyler’s adamant assertion to Zak that he stop asking him questions; there was a slight pause then Zak picked right back up with more questions. We broke out in laughter again and remarked on how our kids would do the same.

Our review continued along the same vein; how relatable Zak’s behaviors were to our own kids’. And where there were varied differences, we could still fully relate.

If you are a parent, it’s highly likely you have your own friend group of parents who have children in a similar age group.

Though your kids are fully their own individuals, you easily laugh together over shared traits; you easily share audible, thoughtful silences over certain situations, and likely enjoy the pure entertainment in others. Though each child has their own unique differences, a group of friends raising children of a certain age group can fully appreciate and relate to another’s experiences through their own.

There is running joke at our annual Buddy Walk: “Who is going to win the Buddy Walk this year?”

I’ve been to 15 annual Buddy Walks (since Wil was 7 months old). I can guarantee about 70% of the kids will either decide at some point to sit it out (more than once), run to a play structure, or take some sort of tangent. Our kids can be very quick, and cunning in their moments of escape, but typically in any other direction than the paved walk. (Some may argue my statistic is on the low side).

Laughing about our kids taking their time to get to the finish line is not a slight against them. Its relating a typical scene in our lives that we share together. Any one of us parents would say our lives are fuller for it.

So sometimes I forget when I make “off the cuff” comments like that. It’s not a familiar scene to everyone yet — it wasn’t one to me once — and we are both watching a movie of our own. When those scenes find a way to merge, I have no doubt we’ll share in that laughter together.

Christie Taylor Uncategorized

Growing Together

Families and friends gathered for the annual Down Syndrome Support Team Buddy Walk the last Sunday of September. It is traditionally held on that date— though here and there over the years the Buddy Walk has jumped up or back a week. The Buddy Walk takes place on a one mile loop in Gallup Park, then walkers return for Pizza House pizza, music, a silent auction, raffles and games. Last year due to the pandemic we cancelled the walk. It felt good to be back, even with a few changes. 

With the strain of the pandemic on businesses we chose not to solicit for the silent auction. However, many beautifully generous raffle baskets were donated and we held a 50/50 raffle. The popcorn machine was going and the band, Know Obstacles, was playing. Leonardo, the lead singer, always packs extra instruments for the kids to play and invites them to jump up on the stage. We chose not to have open pizza due to the pandemic (though we sure missed our Pizza House pizza!) and instead offered pre-packaged snacks that the kids loved.

The weather was an incredible blessing. The skies were a high, bright blue and the temperatures hovered in the low 70s. A light breeze offered just the right refreshment. 

Wil’s first Buddy Walk was when he was 7 months old. At the time, the University of Michigan gymnastics team volunteered at the Buddy Walk. I have a photo of all the gymnasts gathered together holding baby Wil. It was 90 degrees that day. 

The next year the Herron family joined us and have nearly every year since. Theresa Herron was Wil’s speech therapist at the time. I met her daughters, Ivy and Amelia, and they began to babysit Wil. Each year at the Buddy Walk, it became tradition for Wil to take turns getting piggy-back rides along the walk with Theresa, her husband Jordan, Ivy, Amelia and their brother Elijah.

Beckie Brewis, Wil’s Early On coordinator joined us each year, too, as did the Helquists, Desbroughs and Gregorys; friends we made through a program led by Beckie called First Steps. When Wil entered preschool then elementary school, he met Sarah Stommen, Ashley Bobo and Lila Harvey. Their families have joined us nearly each year since. As Wil grew, the love from our Manchester community grew too, and many more families have joined and supported the Buddy Walk. Manchester’s very own SteeleGrafix made the Buddy Walk t-shirts this year! 

The Buddy Walk love has now extended to the friends I have made in my workplace, Orangetheory Fitness. It always awes me how love can spread. 

This being our family’s 15th Buddy Walk (we had our own personal Buddy Walk with friends last year in Manchester), we have walked through rain, sunshine and unprecedented heat. We now walk through unprecedented changes in our lives. However, the spirit of the Buddy Walk remains constant – the love and support of individuals with Down syndrome. 

Christie Taylor Down Syndrome

A New Flight Path

On the day of Wil’s birth, the nurse said he was “floppy” which is a soft marker for Down syndrome. He melted into my chest. The soft, defined curve of his eyes warmed my heart like I’d known this love forever. At the same time, the shape of his eyes sent a hard marker of knowing deep into my gut. I wouldn’t let the knowing climb up to be processed by my rationale. I held it down like a child with hands clamped over her ears, singing, “la-la-la-la.”

We all have dreams for our children. Even if our children do not step into those dreams. Even if we don’t really expect them to. It’s natural to form a moving picture view of the future ahead. Our dreams point the way. When I could no longer hold down the knowing of Wil’s diagnosis, confirmed by a doctor’s solemn nod, I found myself staring into a blank future. In what direction do I go? It was a stand-still in time.

I stared into Wil’s eyes and wondered at the seeming randomness of it all. Though I received many words of consolation and many words of encouragement, I felt directionless. I had no reference point. I was lost even though people all around me shouted directions.  

My first step was to call a trusted friend, Beckie Brewis. She ran the First Steps Parents as Teachers program which Katherine and Elizabeth were enrolled in. She was also the Early On service coordinator (a program for children with special needs ages 0-5). She put me in touch with therapists for Wil. He soon started speech, physical and occupational therapy. Beckie and Wil’s therapists not only helped him take his first steps into speaking, walking and picking up Cheerios, they also helped me take my first steps into this life too. 

When Wil first learned to walk, his physical therapist, Shelly, helped him up onto a balance beam. Shelly held one of Wil’s hands and I held the other.  On a balance beam the only reference point is forward, or you fall off. “Look how he does that,” Shelly said as Wil advanced along the beam. “He doesn’t know how to walk on his own yet, but he is now able to place one foot in front of the other.”

Today Wil and I run like airplanes – our arms out wide, we dip, we skip, we circle, we jump, we zig, we zag, all through the landscape. Our path may seem directionless to some, but we know where we are going because our grounding is solid. Imprinted in the earth are our footprints, one in front of the other, the path of trusted friends alongside steadying our gait. 

Learning to walk through the blank space was how I learned to fly. You can’t spread your wings standing still with your hands clamped over your ears. The knowing that I once held down is now the air that lights my wings….arms out wide, ears open, eyes curved to the sky, la-la-la-la onward we go.

Photo: Beckie and Wil

Christie Taylor Down Syndrome, Uncategorized

Just Friends Being Friends

“I was just wondering if Wil wanted to be part of the 7 dwarfs. We were thinking he could be Snuggly, Giggly, Silly, or Smiley! Considering Wil has all those traits!” I received this text from Ashley about Halloween costumes. Ashley and Wil, now in 8th grade, have gone to school together and been friends since preschool.

I read Ashley’s text aloud to Wil. He jumped up and responded, “Yes!” Wil chose Smiley, then I received another text from Ashley: “Or Seeger was thinking he could be the prince if he wanted to.” (Seeger is another good friend of Wil’s from school.)

“The prince!” Wil said without an ounce of hesitation. Which is quite apt, as Wil’s friends, who are planning a Snow White-style Halloween, are all girls.

Our Down Syndrome Support Team holds an annual Buddy Walk the last Sunday of September to raise awareness and acceptance for individuals with Down syndrome. With the pandemic, the decision was to hold a virtual event. Wil and his friends were not to miss out, so we held a small, local walk to which about 30 friends participated in. Wil, of course, walked with his close buddies, Ashley, Seeger, Lila and Sarah. At one point during the walk, Wil decided he needed a break and sat down on the sidewalk. Wil’s friends stopped and cheered him on. With their encouragement, Wil jumped up and they all started running. The friends joked it was the “Buddy Run.”

Near the end of the walk, we climbed to the top of school bus loop. Once at the top, Wil’s friends ran down the steep, grassy hill along the side of the bus loop. Wil remained at the top, looking trepid. Once again, the cheering section arose. His friends’ cheers nudged Wil over the edge and he tore down the hill. Once united, the friends jumped, laughed and cheered in a circle. It’s just as rewarding to be the cheerleader as it is to be the cheered.

Last year, I was talking to Ashley after school. She told me about an activity in gym the group of friends enjoyed participating in together. Then she said Wil grew tired and laid flat out on the gym floor. She shrugged her shoulders, smiled and said, “That’s just Wil being Wil.”

When Wil doesn’t have the words, his actions are his communication. Wil’s friends understand his language. Wil doesn’t judge others or create drama; it’s simply not in his arsenal. In that way, his friends are fully free to be themselves. If you are sad, he accepts your sadness without question. If you are happy, he accepts your happiness fully. If you feel goofy, he’s more than willing to join you in the silliness. If you need a hug, he has one at the ready. If that’s your clothing style, then it’s cool. To Wil, that’s just you being you.

As a parent of a child with special needs, I know first-hand the fight for acceptance. I also know first-hand that acceptance is quite fundamental: It’s just friends being friends.

Christie Taylor Down Syndrome, Uncategorized

Our Own Little Buddy Walk



The DSST Buddy Walk was virtual this year, but thanks to Wil’s amazing friends and this caring community, we had our own fun walk of about 30 people (and dogs!) in Manchester. Our local Steelegrafix LLC made our shirts this year and not only donated a portion of the proceeds to DSST, but also matched that amount! Manchester Mirror wrote an article about the event: http://themanchestermirror.com/2020/09/28/annual-buddy-walk-goes-virtual-for-2020/?fbclid=IwAR0_R7peFOfYsXal3REQWOTEXy-oZogfEFm6ps0SZ3y43ET1ofljqRZO11Q


Thanks to all who supported and/or walked!! If you’d still like to donate, Wils link is:
https://secure.frontstream.com/buddywalk2020/team/924124