Moments that matter: 2013 WALK NOW FOR AUTISM SPEAKS

I never knew. I never knew how amazing the WALK NOW FOR AUTISM SPEAKS event is. Until this past weekend when I had an opportunity to participate.

Founded in February 2005 by Bob and Susan Wright, grandparents of a child with autism, Autism Speaks is the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families (www.autismspeaks.org). Pretty fabulous, right? Miss Minnesota, Dora, Diego, TC Bear, SpongeBob and Cassadee Pope think so. Joining many Minnesota families and individuals, they all took a moment to participate in this year’s event.

My adventure with the 2013 WALK NOW FOR AUTISM event began with a simple invitation from my cousin-in-law, Jessie DeCorsey: The Autism Speaks event is Oct 12 this year. Any interest? They are looking for photographers to do candids and I’m thinking I’ll be able to volunteer again this year. Jessie and I both love taking pictures. My response: That would be awesome! Saturday, October 12, 2013, I spent my morning working as a volunteer photographer documenting the event.

At 5:45 Saturday morning Jessie drove into my driveway. Pulling the front door shut, I scurried down the steps through the darkness to her vehicle’s passenger door, waving and smiling as I enthusiastically climbed inside. “Jess, it’s here! It’s here! Wahoo!” Jessie giggled and backed out of the driveway.

You know that feeling you get just before you open a present? That anxiousness? The butterflies in the stomach? The excitement inside you coming to a boil at the very tippy-top of what you are able to contain, ready to spill out? That’s how I was feeling about this event. I wondered how many people would be there. What the layout of the walk would be like. If we’d find an okay parking spot and be on time. If I wore the right clothes, the right shoes, brought the right gear.

For the next hour while we traveled down the road Jessie and I talked photography, last year event details, and laughed at our GPS and where we were when it announced: “Now arriving at AMC Mall of America.” We really should have taken a picture.

The WALK NOW FOR AUTISM SPEAKS event starts early, before the mall opens. Shortly after 7 a.m. we entered the parking garage. With “ribbon cutting” and the start of the walk scheduled for eight, we wanted plenty of time to find Sadie Miller, our coordinator, and get to where we needed to be. After parking and purchasing something to eat quickly, the two of us walked to the Rotunda where we spotted Sadie.

“The backdrop is all set up for team photos,” she informed Jessie. Looking at me she said, “If you can just walk around and take some pictures, and go up to the second floor where the top fundraisers are.”

“So, anything that tells the story of what it’s like to be here. Yeah, I can do that,” I assured, smiling and shaking my head.

Knowing Sadie was busy with the buzz of the morning Jessie and I went to check out the team photo space.

Have you ever been to the Mall of America? You know how big it is? Yeah, I was a little nervous about that. Being unfamiliar with the walk, I worried I might find myself lost somewhere and miss the most important parts. Well, I worried for nothing – all parts of this walk are important (smile).

So why this event? Why Autism? What is it that made me want to get up at 3:30 a.m. and spend an entire morning taking pictures? Honestly . . I love it! I love meeting new people. I love hearing their story. I love being a part of something special, something positive. And autism is special because it’s something my sister deals with on a daily basis: my youngest nephew. Jace, is autistic. We found out shortly after he was two. My sister Amber was the first person I called when I decided to volunteer.

She contemplated coming to the walk with her sons, but this year, making the three-hour drive to participate wasn’t working out. Disappointed, I decided I would do my best to somehow share the experience of the day with her. In honor of Amber and her children, the week before the walk I designed, ordered and rush shipped two special t-shirts. Wednesday, October 9th, they arrived.

My plan Wednesday was to drive the two hours from my home to Amber’s to surprise her. So tired my eyes were closing on their own, I had to accept that was no longer a good plan. So, excited, I snapped a picture of the shirt design and sent it to her via text.

She responded: I love it! Honestly, I love it! And she wanted to post the picture to Facebook. Instead, I uploaded the original design which was easier to read with the pictures a bit bigger. She posted it with the caption: How amazing is this?!? My heart plumeth over and over again!!! I think everyone needs a shirt like this!!!! Thanks Heidi;)

That evening my husband arrived home from work and I explained how I had wanted to get the shirt to Amber before Saturday, but I was too tired to make the drive safely.

“Lets go,” he said.

“What?”

“If we’re going, lets go. Get your shoes on.”

I couldn’t believe it. Spontaneous family road trip? I love my husband! The kids shoved their feet into their shoes, pushed their arms through the sleeves of their coats, grabbed their blankies, books and LeapFrogs, and out the door we went. Two hours later, I walked through my sister’s garage, into her house, up to where she was sitting, and said, “I’m sorry, I couldn’t help myself.”

“What? What are you doing here?”

“I know you can’t come to the walk,” I smiled, handing her her shirt.

“I love it!” she said. Unfolding it, sliding her hands through the arm holes and pulling the shirt over her head, she wrapped her arms around me and squeezed.

“The kids are outside,” I told her.

Outside she hugged my children, thanked my husband, and took a few pictures with me. In one, the two of us stood side by side, arms around each other, smiling, though the picture was the back of our shirts. In another, my sister held her long limbs out balancing my cell phone to capture a shot of the two of us cheek to cheek.

After only twenty minutes we had to leave. Her Facebook post read: My sister, kids n husband road trip two hours just to hand deliver my shirt at 10 p.m. and surprise me….love has no boundaries!!! Love my shirt!

The walk hadn’t even started and already it was impacting my life. My sister was so excited I deemed the t-shirt the best gift ever. Ever.

If you want a whole bunch of people to find out about something quickly, Facebook is the place to go. Facebook helped us spread the word about the WALK NOW FOR AUTISM SPEAKS event being held at the Mall of America. We were able to reach at least one woman who had never heard of the event, and she has a daughter who is autistic.

Most friends and family could not make the trek to the mall on such short notice. However, several of my sister’s friends told her they would like to go next year, and many of them want to purchase a copy of the t-shirt featuring Amber and her sons. Support for my sister – how great is that? The walk, still three days away, makes another impact.

The night before the walk, Friday night, I was so excited I couldn’t sleep. Guess what’s great when you can’t sleep? Facebook! My post read: Since we were small children, my sister Amber has loved snow globes. To this day I cannot see one without thinking of her. For that reason and so many others, I absolutely love what she wrote regarding what Autism means to her:

“Autism to me is like a snow globe. You shake it, turn it upside down, and watch it like a whirlwind. The image is never clear while the snow and glitter are falling; it’s mesmerizing. And when the snow settles, the picture is crystal clear.

Autism has brought uncertainty into my life. Chaos. The ability to be very flexible and adapt to change quickly. It has made me realize the joy and wonder of innocence, and shown me what determination and belief in someone can accomplish.”

Autism: like a snow globe. Beautiful. My day tomorrow is dedicated to you, Amber Cunningham. I LOVE YOU!

Instantly people were clicking like and leaving messages. Within minutes, I received a private message from a friend of a friend who is the marketing manager for the Autism Society of Minnesota (AuSM). It said, “I just read your sister’s description on autism. I would love to share it on our page if your sister would be okay with it.” What? That’s fantastic. the woman also shared her hopes that my sister and I would consider becoming involved with AuSM, pointing out that she is proud of the fact all funds raised and all programming done by their organization stays in Minnesota to support Minnesota families. Very cool. I called my sister.

Immediately she agreed to allow the use of her words on the site (https://www.facebook.com/AuSM.org). We giggled that a Facebook post accomplished that, in a matter of minutes. The next morning Amber’s Facebook read: Leave it to my sister to get the word spread! The marketing director asked her if they could use my words on their AUSM site! How exciting…spreading awareness is awesome!!!! Hoping my sister’s day is amazing and can’t wait to hear all about it! Thanks for representing Jace with all your heart Heidi, love u!!!.

With all my heart, I stood Saturday at the Mall of America watching people connected in some way to Autism, gather. Next to Jessie, near a WALK NOW FOR AUTISM SPEAKS banner, I pulled items from my camera bag piecing my equipment together, missing my sister terribly and wishing she were at the mall too. I smiled that I had my shirt on.

White with a navy blue top portion and short sleeves that have navy blue stripes, the design on the back of the t-shirt is two photographs in the shape of puzzle pieces. (Puzzle pieces because they are the symbol for Autism.) The first larger puzzle piece contains a picture of my nephew Jace. The second smaller puzzle piece contains a picture of my sister looking at her youngest son, Jace, whom she is holding, while her other arm is wrapped around her oldest son, Cade. I don’t see my nephews often and I love the way they smiled in these pictures.

Beneath the larger puzzle piece, next to the smaller one, it reads: Jace is Autistic. To him, bugs are beautiful and nothing is better than bacon. Jace is awesome. We love Jace. Bacon and bugs both instantly make me think of my energetic, strong, loving nephew. Bacon and bugs instantly turn up the corners of my mouth. Saturday, I was proud to sport a special t-shirt inspired by a love for bacon and bugs.

“Well, have fun,” I smiled at Jessie, walking to the escalator to go up to the second floor. Up, up, up I went, and my shutter button released the moment I stepped off the moving stairs rounding the corner toward the table with blue and white balloons: volunteers handing out information, bottled water and snacks to walking participants. The people in the background tirelessly work hard to make a difference in the lives of others, and that my friends, is worth a picture (smile).

Past the tables I began to meet the children and mothers and fathers and coworkers gathering near their team sign preparing for their two-lap adventure.

“Smile,” I’d encourage, hoisting my camera up in front of my face.

“Okay, now on the count of three, give a cheer or a thumbs-up. Ready? One. Two. Three. Ow-ow-ow! Yay, Autism Speaks!” I’d shout, continuing, “Thank you for being here today. Have a wonderful walk.” I said it sincerely, looking directly into the people’s eyes. I was thankful each of them showed up. I was thankful each of them helped to raise funds for an organization such as Autism Speaks.

After one or two families, I spotted a familiar face: the mother of a little girl in my son’s class. Do you know how lovely that was? It was wonderful.

“Hi,” I squealed, running over to give her a hug.

“Hi,” she smiled.

Yeah, I’m that girl. Some people shake hands, and some people hug. I hug. But I do try to be conscious of the fact that some people don’t like hugs from strangers. I do try to be aware of that.

I knew this woman and her family would be at the walk. This is their first year participating. (First year and they’re one of the top fundraising groups! Hooray!) I wasn’t sure we’d see each other. I was glad we did. She stood next to her husband behind their two children who sat in strollers. I snapped a picture. “Enjoy the walk!” I said as I gave them each a hug.

For forty-five minutes I wandered through the halls of the mall talking to strangers and doing what I could to document who was there and what was happening. While I did ask some people why they were participating and how they knew the name of the person on their t-shirt, I was way too brief. I worried I may not be near the stage when I should be or that I might miss the start of the walk. I missed a great opportunity to hear more about what it’s like to experience autism on a daily basis and find out why people were inspired to get involved with this walk.

Next year, I plan to talk to people a little more. I plan to hear why they participate. I plan to find out how Autism has impacted their life. I plan to share a longer moment and smile. All of that matters. All of that is important.

There were dancers and teddy bears and prizes and petitions, and all sorts of things. And as eight o’clock neared, the Rotunda space filled up with family, friends, coworkers and strangers all walking together to show their love and support for Autism. With minutes to go, I bounced onto a padded bench perched in the middle of the mall hallway and took a minute to really look at all the people; all of their faces, smiling; their bodies shoulder to shoulder. It was beautiful. Diverse, full of variety, spunk, creativity, strength, endurance, and emotion. It was beautiful like my baby sister. A lump began forming in the wall of my esophagus.

KARE11 stood by filming while Miss Minnesota, Rebecca Yeh, cut the banner beginning the walk. People flooded through filling the hallway on either side of me. The t-shirts, the talking, the signs and the strollers, it was difficult to decide which direction to point my lens.

After the final walkers passed me by, I jumped down from the bench hoofing it through the hallway, gently weaving through the crowd.

A father said to his son, “Oh, do we need a rest already?” The boy had plopped down on the bench just beyond the start of the walk. I giggled. It didn’t look like he planned to leave anytime soon, and what made me laugh was thinking of my nephew. When his mind is made up, it’s definitely made up. He’s a lot like his mama that way (smile).

I snapped a picture of a man holding a child, the back of his t-shirt reading: Autism Matters. Autism does matter. It, too, makes a difference.

And that’s when it began to happen. Walking around that man and a few others, I smiled bigger and bigger hoping somehow the apples of my cheeks would encourage some sort of gate that would keep the tears I could feel swelling in my chest and stinging my nose, from passing through and flooding my face.

I’m like that sometimes. In very heartfelt situations I find myself soaking it all in, and it seeping right through me wanting to come back out. In that moment, I wondered what my sister would be feeling if she were on this walk. I wanted her to be on the walk to experience the camaraderie; to feel the love and support firsthand; to see her family and friends and mom walking with her and her children. I walked at a good pace for a few minutes not taking pictures of anything. Then, spotting a woman helping a young girl make her very own crown, I got back to the task at hand.

I loved the crowns and I loved the capes. Crowns and capes – you don’t have to be a child to find them fun. At the Autism Speaks walk expressing one’s self seems supported and appears to spread a great amount of joy. I love it! I loved the t-shirts, socks, pins, hats, bags. I loved watching the decorated individuals make their way over to the tables of vendors for information. I imagined that moment might reveal something that person has been searching for and needing, maybe for a long time. Maybe not. Sometimes it’s just about a little fun, too. That’s what the stops to take pictures with Dora, Diego and cardboard cutouts were for (smile).

Continuing my first lap through the first level of the mall, I met aunts and uncles hugging each other; kids holding onto their parents; parents holding onto their spouse; grandparents marching proudly. A few of the puzzle pieces were being put together and they were revealing a beautiful picture: autism united; an autism team. And being part of a team . . . I just think that in itself is so wonderful.

The walk was well marked and managed with signage and water and snacks for walkers. Just past the potato chips and plastic bottles of water, I stopped to tell a mother dressed in clown wear that I could not look at her or her son without smiling. Their bright outfits were adorable.

“We’re part of In the Company of Kids. We’re performing at 9:15,” she proudly responded.

“Oh, okay.”

“At the main stage.”

“Perfect. I’ll see you there.”

“Okay,” she smiled. And for whatever reason, which I love, she felt comfortable enough to continue, “You know, he (her son) was nonverbal until he joined the theater group. His first words were with them.”

Wow! How incredible is that? What an amazing gift that organization has given to that mother. I couldn’t wait to see them perform.

While we were talking, the woman’s son climbed into the photo booth in the hallway of the mall. “Perfect. If you sit next to him, I’ll take your picture,” I grinned.

She climbed into the booth next to her son, and holding the curtain open, the two of them shared their great smiles with me. Moments like that, a walk like this . . . unforgettable.

Despite fears, I successfully navigated the first floor of the Mall of America and completed my first lap of the WALK NOW FOR AUTISM SPEAKS walk, ending exactly where I was supposed to in the Rotunda. Figuring I would touch base with Jessie, I made my way over to the team photo space. Miss Minnesota and her friends were just finishing their shots, so I seized the opportunity to talk to Rebecca Yeh.

Pulling a Sharpie from my pocket, I approached her saying, “Hi. This is my sister and her son (pointing to the back of my t-shirt), and they can’t be here today. I’m wondering if you could write them a small message.”

Grabbing the Sharpie, she said enthusiastically, “Sure.”

“I’m so sorry. My shirt is probably sweaty and gross.”

“No, no. It’s fine. I just gotta think about what to write,” she said.

And then a woman came over and joined her. I’m guessing it was her mother, but I don’t know that for sure. She pulled the back of my shirt tight so Miss Minnesota could write, and again it started to happen: eyes welling up, stinking in my nose. Knowing Miss Minnesota was genuinely wanting to write a sincere message of hope to my sister was getting me all choked up.

In orange Sharpie she wrote: Amber, Jace is a blessing and I can’t wait to see the great things he will do. She drew a heart and signed Rebecca Yeh, Miss Minnesota.

As soon as she was done, I turned and hugged her briefly and thanked her for doing that. Then I took a deep breath and walked quickly toward Jessie.

“Oh, Heids,” Jessie smiled.

“I was going to have you take a picture.”

“I did.”

“You did? Awesome.”

Jessie, at her station, was having fun meeting incredible people too. After touching base, I returned to the space near the stage and enjoyed a performance by that mom and her son in clown wear and their theater group, In the Company of Kids. I also enjoyed performances by Gage Cook and Miss Minnesota. SpongeBob made an appearance dancing and twirling in-between taking pictures with walk participants, and I imagined my children and nephews would have had a good time seeing SpongeBob and Dora and Diego. I made a mental note to tell my sister no one is bothered if your child plops down on a bench and doesn’t move the rest of the walk. Or squeals loudly with excitement because he sees SpongeBob.

Around 10 a.m. as the event came to a close, I photographed Shelly Fanning from Kyle’s Krew. The top fundraiser, she raised more than $3,800. Incredible, isn’t it? Proudly she stood with her team. Proudly she stood with her family.

After Shelly, my lens focused on a young boy sitting on top of his father’s shoulders, and then a little girl in the arms of her mother or grandmother. Together. Connected. It made my heart smile and I found myself so happy to have had the opportunity to be a part of this walk.

Participants began to go their separate ways and I again made my way over to Jessie. Grabbing our camera bags, we walked to Barnes & Noble where we enjoyed a water and a tea while we talked about how great our day had been. We were giddy knowing the fun was not yet over.

Unexpectedly, my phone rang.

“Hello?”

“Hellooo?” my husband said.

“Hi.”

“What are you doing?” he asked.

“I’m in the bookstore with Jessie. What’s up?”

“Helloooo?”

“Hello,” I whispered loudly.

“If you can hear me, we’re on our way down. I’ll call when we get there.”

What? My husband isn’t a huge fan of any mall on the weekend let alone the Mall of America; it’s almost always busy. He’s coming down with the kids?

“Jess, he’s coming down here. I can’t believe it!” I smiled.

“What? That’s awesome.”

My husband knew this event was incredibly important to me and that I was very excited. I realized he and the kids could not make the early morning that particular day, but I had mentioned once – after I had learned Cassadee Pope, the winner of the third season of The Voice, was coming to the Mall of America to perform and sign cds – that maybe he could bring our daughter down, she loves music and singing. I thought she might like to see Cassadee Pope perform. But when I mentioned it, my husband’s look assured me that wasn’t happening. So the call and the coming to the mall was a huge surprise. Yay! I love surprises.

Jessie and I finished our drinks and prepared to head to a designated room where the top fundraisers would gather to . . . meet singer-songwriter Cassadee Pope. I know, right? How did we get so lucky? I have no idea. Jessie and I were thrilled.

As we prepared for picture taking, I officially met Sara Durham, Community Relations Manager for the Mall of America. For those of you who haven’t met Sara, she’s an incredibly kind woman who spends endless hours putting together fabulous events. I enjoyed the few minutes we spent talking to her, and then Jessie and I fired a few practice shots. My phone rang again.

“Where are you?” my husband asked.

“We’re photographing a meet and greet. I’ll have to call you when I’m done. Get in line and get a wrist band for Bean, okay?”

“What?”

“If we’re going to the performance we need to have wristbands. Get in line and get some. I’ll call you when I’m done.”

Knowing the meet and greet was going to start any minute I hung up my phone. I felt a little sad for my husband who drove an hour to surprise me.

The furnished room began to fill with the families who had raised the most funds. Little girls holding cds and moms and dads and individuals excited to meet this young artist. As Cassadee Pope and her entourage entered, all smiles seemed to grow. Sara, Sadie, Jessie and I enjoyed the experience for about twenty-five minutes.

Just as the line ended, much to our delight, Jessie and I also got to officially meet Cassadee. We had hoped we might get to, but we weren’t sure – we knew this day was not about us. While we did get a giggle out of joking about how we’d exchange emails and plan to have lunch with Cassadee, we were behaving. Were is the key word in that sentence (smile).

I behaved wonderfully right up until Jessie smiled at me and it was my turn to meet Cassadee and have my picture taken. This had been an unbelievable, spectacular day, and now I was meeting Cassadee Pope. What would you do?

With only a few people who came with her, Sadie, Sara and Jessie around, my excitement finally boiled over. I did a little jumping and screaming and hugging, because, well, I was thrilled. I enjoyed watching Cassadee on The Voice, I love her singing, and now I had a chance to tell her in person. She laughed at my craziness, and I asked her to sign my t-shirt for my sister. I smiled when she did.

The day was phenomenal. I spent hours observing, meeting, and documenting inspiring people and a purposeful event. I enjoyed standing beside my daughter and Jessie watching Cassadee Pope perform. I soaked up an entire afternoon in the Mall of America with my husband and children riding rides, laughing, making I-think-I-might-get-sick-but-I-love-this faces, and eating ice cream. I did what I could to show my support for my sister and her family. Moments. Most times they happen once. Every time, they matter.

 

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