Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #28: RUN

John takes over tonight for one of the kinds of advocacy that I have stayed away from… running.

When Tessa was about a month old, Maggie signed us up for a seminar on inclusion.  If you haven’t figured this out already, Maggie is a bit of a planner (this is also known around the world as a diagnosis of “Type A”).  Anyway, my planning wife was planning for our daughter’s future school three years in advance, while I was just trying to get through a Saturday.

While Mag walked into the seminar with a plan for our future… I walked into the seminar (begrudgingly, I might add, as I am still aiming for personal growth in the advocacy department) with no plan and no idea what I was in for.  When I sat down, I noticed a brochure to be part of the Ups for DownS Charity Running Team.  I looked through the information and here’s what it boiled down to:

  • Run the Chicago Rock n’ Roll Half
  • Raise money for Ups for DownS
  • Raise awareness for Down syndrome

I took home the brochure and told Mag that I felt compelled to run and she told me I had her whole support.  She was tired of me doing races just for “fun” because she always said I could just do that on the street for free.  Being a charity runner made much more sense to her.  Her support was really important because in training, I can be gone on these runs for 2 or 3 hours sometimes.  And while I’m gone enjoying my music and shuffling along, she is there taking care of every burning need of my children.  To those of you who say it’s only a couple hours…clearly you haven’t met my children.  Sorry…back on topic.

When I signed up I thought:  Well, it’s for a good cause, it will be fun to run a race in Chicago, why not?   I mean, the worst case scenario was that I would end up paying most of my commitment to fundraise $250, but it would still be for a good cause and I didn’t really care if that happened.  Two years later, Team Tessa has collectively raced over 100 miles, raised over $8,000 and had 8 people join our team in support of a great cause.

Here’s the point I would like to make about running and advocacy… just like running, sometimes advocacy is difficult.  At times it’s hard to keep advocacy in mind.  At times advocacy asks us to step our of our comfort zone and step up for the people we care about.  And at times running for a cause seems as substantial or more so than those other challenges.  But here’s the thing:  People in our life continue to step up to support her and people like her.  You see, advocacy doesn’t have to be grand and with pomp and circumstance.  Sometimes it can be as simple as shuffling one mile after another to run for a little girl who deserves our love and acceptance just the way she is.  Thanks to all of you that do that…and a shameless plug here: There’s always room on Team Tessa for more runners!



Leave a comment »

Team Tessa Rocks Chicago

The last week and a half was so busy and went so fast that I’m trying to figure out if it actually really happened or not.  I’m looking forward to sharing some pictures from our great vacation in Saugatuck, Michigan.  But first, we had the most amazing day on Sunday.  Team Tessa absolutely rocked the Chicago Rock n’ Roll Half Marathon and 5k!

We raised over $5,000 for our favorite parent support group, UPS for DownS and were the top fundraising team for our group.  When totaled, all of the runners who came out to race raised over $34,000!!!  Amazing!!

Team Tessa is ready to race!!


While the day started a LOT earlier than any of us would have liked (especially me, as we were at a wedding the night before…), it was so cool to walk through the city early in the morning, watching the sun rise up over the buildings as 30,000 runners made their way to the starting line.  Ellie was very excited to see the skyscrapers and to wear her Team Tessa t-shirt.

Ellie can’t believe that she has her two favorite people, her grandmas, (almost) all to herself!


As we waited for the race to start, Tessa managed to have her own little monumental moment… she held her bottle on her own for two full ounces!!  I was able to send this picture to John right before he started running:


But apparently, that milestone really took it out of our little rock star, because she slept for most of the rest of the race…



Ellie had a great day too, despite the fact that she got up at 5:00 in the morning.  She managed to be three-year-old-meltdown-free until we didn’t let her take off her shoes in Subway after the race.  She loved watching the race with her Papa.



Somewhere between miles 4 and 5, we saw some of the racers.  Clearly, they weren’t too worried about their time, because they took a second to say hello!

Waiting for the finish, the Team Tessa supporters who were able to come to the race on Sunday gathered for a cute picture.


While I hoped to catch all of our runners out on the course, three of them were just too fast for me.  But  here’s a picture of John and Uncle Mike crossing the finish line:



It was such an awesome, inspiring day.  We met some great people, enjoyed the great city of Chicago, were blown away by the supporters of our group… and were amazed at the outpouring of love and support from our family and friends.  We can’t wait for next year’s event!!



Will Run for Beer?

I am not a runner.

John participates every year in a half marathon at the end of August and it kind of makes me crazy.  I’m glad he takes the time out to keep himself healthy and moving, but the race at the end of the training costs money and I hate paying money so that he can do something that he could do for free.

But tonight, John found a cause.


Here is his letter to our family and friends:

Hello Everyone,

I want to let you all know about a charity race I have decided to join.  This summer on July 20th I am running the Rock “n” Roll Chicago Half Marathon for the Ups for Downs Down syndrome foundation.  As many of you know, my daughter Tessa was born with Down syndrome earlier this year.  Since Tessa was born, Maggie and I are on a mission to help people see the ability in all people with Down syndrome and not just the disability.  Needless to say, I thought this race is one small way I can help the cause (and maybe lose a few pounds while I’m at it).  
How can you help?  Well, I’m glad you asked!  There are three ways you can help.  
1) Prayers, encouragement, and well wishes.  You can even go watch the race if you want! 
2) Financial support for the Ups for Downs Organization.  Think of it this way: Any small contribution you make (from $13.10 and up) is like paying to put me through 13 miles of running! It’s almost like getting back at me for being a smart aleck all these years by making me run for two hours and supporting a great cause at the same time!  Below is the website you can use to make donations if you are moved to do so.  
3) Join the team!  You may also sign up as a part of our running team (Team Tessa) and do some fundraising of your own.  I have a feeling this option will get the least positive response, I mean who would be crazy enough to run 13 consecutive miles? 🙂 I digress, but let me know if you want to run and I’ll give you some information. Just know that the sooner you sign up, the less expensive it will be and the more time you have to raise funds, so let me know sooner rather than later. 
I can’t tell you all how much Tessa has taught all of us in just a short time and she can’t even really do anything yet except smile!  Let’s help spread the love and start to change the way we think!  God’s blessings to all of you! 

Now there is a race that I can throw money at.  🙂

1 Comment »