Bellin Buddies

If you're familiar with our family, then you know about myTEAM Triumph (MTT) and I Run 4 (IR4). Both are non-profit organizations that aim to build relationships and foster inclusion through partnering athletes with people with disabilities. MTT focuses on in-person relationships within local communities, and IR4 takes advantage of technology to build an online community. Both have had a tremendous impact on our family, and this past weekend combined the two together for  the first time.

Teddy's running buddy Heather, from IR4, made the (extra) long drive (thanks to horrible traffic) from Michigan to our house in Wisconsin. She and her husband Steve had volunteered to be Teddy's angels through MTT for the Bellin Run this past weekend. That meant they both fundraised a minimum of $100 (to cover entry costs for themselves and ensure captains like Teddy can race for free). They took time off work. Then, after spending most of Friday driving here, they got back in a car at 5:30 a.m. to head up for the race.

Captain Frumpy Face Teddy

Teddy was a bit sleepy, which actually worked out well because he wasn't trying to escape from his race chair during the pre-race preparations. (He was in his chair longer than usual because there were a record 41 MTT teams, which required a bit extra coordination.) He perked up about a third of the way through the race and realized he could play with the balloons we had attached to his chair. (I'd definitely do that again because it let the runners passing us from behind know Teddy's name to cheer for him.) Teddy got stopped by Davon House, one of the Green Bay Packers, for a photo opp (that unfortunately didn't turn out but was still pretty darn cool). He loved every sprinkler we went through, which was quite a few. Teddy shared a freezie pop with Heather. (It was so hot that several people along the route were handing out freezie pops out of their Midwestern hospitality and generosity. We passed up the free margaritas, though, because we thought we perhaps shouldn't tarnish Teddy's and MTT's image.)

Teddy flying with his MTT (and IR4) Angels

Each race with MTT has been incredible in its own way. This race literally flew by, even though it's the first time Teddy's done a 10k instead of a 5k. I've done the Bellin more than 5 times, and this was by far the most fun I've ever had doing the Bellin. I think my PR (personal record) from last year will stand for quite some time because I don't see myself running the Bellin again without Teddy and MTT. Not only did Dave and AJ join us, but we also had both sets of grandparents cheering on Team Teddy. (And his speech therapist found us before the race, which is remarkable considering that we were among 13,000 people there!)

The rest of the weekend spent with our family and Heather and Steve was equally awesome. After Teddy took a much-needed nap, we  headed to the waterpark in town. He led Grandpa through all the sprinklers in the kiddie area while the rest of us watched in amusement. AJ loved the lazy river, and so did Teddy, especially all the sprinklers. We went down the waterslides a few times, which is Teddy's favorite part.

This is one of my favorite photos of the weekend!

It was incredible to meet Heather, who's basically a celebrity among our family because of how supportive she is of Teddy. Now Teddy knows there's a person behind the photos I show him when Heather shares pictures with us. Teddy adored her and was a bit infatuated with Steve (probably because he convinced Steve to give him a piggyback ride). This weekend reaffirmed our desire to get to Michigan to meet my running buddy Luke and AJ's running buddy Miss Bridget. We'll see ... we already started plotting doing the Detroit marathon in 2018 as a relay team of running buddies!

Carrying Mountains

Life with Teddy is an emotional roller coaster. Sometimes, it's cycles of days, weeks or months where things are mostly positive and then a slump. And sometimes, in the course of a day, I manage to hit both depressingly low points and amazingly high points. The last week or so has been one of those funks for me, which is why this quote from Najwa Zebian struck a chord with me:

"These mountains that you are carrying, you were only supposed to climb." 

I feel as though I've been carrying mountains instead of trekking up them, enjoying the views and the hike along the way. This was what I needed to hear last night.

And then, of course, I had one of those roller coaster days today. While I was at work, I was typing a witty reply hinting about when I might be able to return to work on a schedule that resembles full time more than my hodgepodge of hours now. As I went to type, "It's only two more years before Teddy is in regular kindergarten," I almost ended up in tears. 

The reality is that Teddy will not be in regular kindergarten. He'll never be in regular school. He'll be in classrooms adapted to his needs that maximize his potential. He'll have a smile and personality that light up those classrooms. He'll be amazing because he's Teddy, but he'll never be regular. 

As his mom, that reality hurts sometimes when it sneaks up on me and makes me reword my e-mail to something along the lines of "It's only two more years before Teddy is in school for a full day." It's nothing, but it reminds me of everything.

After my work day, I picked up two very happy boys who spent the day playing outside at a park with their fantastic sitter. We came home to find a package from Teddy's running buddy Heather from I Run 4.

He looks so big opening his mail.

That's when my day went to top of the roller coaster, incredibly grateful for the support of our running buddies. While Teddy opened his mail, AJ responded to two of his buddy's messages, sending her more silly pictures and dictating his messages.
 

Teddy's too excited to hold still for a picture.

Teddy's buddy Heather sent him two medals, one from a 5k and the other a Darth Vader half marathon medal. Teddy especially loves the Darth Vader medal because the inside middle part rotates, so it's a perfect toy for him. Heather also sent him a runner version of Mickey Mouse. Teddy prompted attempted to nibble Mickey's nose while grinning his mischievous smile. Heather tucked in a Mickey Mouse tsum tsum (little soft Japanese-style toy for those as tsum tsum illiterate as me until I read the tag) for AJ, so he didn't feel left out. This package of goodies for the boys reminded me how lucky we are, how thoughtful people who were strangers 6 months ago can be and how good the view on the hike is instead of being buried under the mountain.

Both boys love their respective treasures!

My Little Celebrities

I know I shared our experience with I Run 4 recently, but I have an update. AJ's running buddy Bridget contacts race organizers prior to events to see if she can score a second medal for AJ. When she contacted the organizer for the Flintstone Challenge, the request came back to do a feature about I Run 4 and our family specifically.

The Flintstone Challenge is a 5k run/walk sponsored by Michigan State University- Flint campus medical students that benefits the school system in Flint, Michigan. We are always more than happy to share our story because we feel it's important to create awareness for Teddy's rare disease.

We were asked a series of thoughtful questions, although it's a bit tricky to interview a 4-year-old. AJ's answers depended on his mood, so we did our best with that part.

You can check out the full interview online: http://flintstonechallenge.org/i-run-4-siblings

They also shared a copy of the event newsletter with us with a really nicely done article.

It's getting hard to live with these celebrities.

I Run 4

In the past couple months, two complete strangers have become two people who bring an immense amount of happiness into our world. I Run 4 is a non-profit organization that matches individuals (children or adult) with disabilities with able-bodied athletes. The athletes dedicate their workouts to their buddies, and the buddies cheer on their athletes. It's basically the modern version of a pen pal. Instead of writing letters, everyone posts through Facebook. It's also one of the most positive groups I've ever encountered, with people cheering on each other and offering prayers and kind words whenever needed, even through the night. (I learned that last part on nights that I've been up with Teddy.)

When I signed Teddy up for a buddy in December, I was surprised that he was matched the very next day! Teddy's buddy is a wonderful woman named Heather who lives in Warren, Michigan. She is an awesome person who cheers on Teddy's accomplishments and makes our world better.

Heather loves Disney! (And Teddy!)

The timing of their match couldn't have been more perfect because Heather completed a Disney marathon about a week later. It may seem like a silly thing, but the picture she sent of her ready for her race brought tears to my eyes:

Seeing this still tugs at my heart.

The fact that someone who just "met" our son ran 26.2 miles with this on her legs, giving a voice to Teddy and encouraging our family, showed me how amazing I Run 4 can be. Heather is one of the first people I tell about Teddy's latest tricks because she's someone who selflessly has agreed to cheer on Teddy.

Because Teddy's non-verbal, I type all his messages for him. Teddy smiles, though, every time I show him a picture Heather posts. I also realize that in some ways Heather is as much my running buddy as she is Teddy's. Having her in our lives has been such a blessing, and I'm grateful beyond belief for the role she plays.

Not only can individuals with disabilities be matched, but there's a partner organization called I Run 4 Siblings: The Unsung Heroes. This group gives the siblings a spotlight, so I immediately signed AJ up for a buddy. It took us a few months to get a solid match for AJ, but it was absolutely worth the wait!

AJ's running buddy is Bridget, who lives in Flint, Michigan. She is an incredible woman who takes the time to acknowledge every one of the 25 silly pictures AJ may send as comments to her posts. She is someone who will be a fantastic role model for AJ as he grows older and learns about overcoming challenges and obstacles in his own life.

Bridget loves running races! (And AJ!)

Bridget is the perfect match for AJ! She sends him messages frequently, which he loves. She also answers every message he sends her. And trust me, since AJ is dictating his messages, they're often a bit unique.

Although it's not required or even implied with I Run 4, some buddies send medals to their matches. We just so happen to have buddies who've done this for our boys. Believe me, it's not about spending money, sending packages, etc. It's about the relationships and the support. But I won't deny it's an awfully exciting day if a package arrives from either Heather or Bridget.

AJ shows off his bling from Bridget's first run for him!

Since both our runners live one state away (and are only an hour apart from each other), I'm hoping we can meet sometime this year. I know both boys would love to meet their buddies in person, as would Dave and I.

I signed up to be matched the same day as Teddy. Teddy got his buddy the next day. It's been nearly four months, and I'm number 780 on the waiting list. This amazes me because it shows how many good people there are in the world that there's more than 2,000 people currently waiting to cheer on and support individuals and their families. I'm hoping to get matched in the next couple months, and I'm excited to be able to pass along some of the happiness, joy and support we've received.

Not only are there groups to support siblings, there's also a remembrance group called Keri On: I Run 4 Remembrance. It's one way to keep someone's memory alive and continue to share their story.

If you know of someone who would benefit from a buddy, please share this with them and encourage them to sign up through I Run 4. Remember, there's 2,000 people just waiting to cheer on people with different abilities and become one of their biggest fans. No buddy waits long for a match ... only the athletes.

Teddy's diagnosis comes with a whole slew of challenges and obstacles. At the same time, so much good has come along this short journey, and I count our running buddies as two of the blessings we've received.