Well, this week had the makings of a craptastic week, but a group of 16-18 year old high school boys saved it. Seriously. No joke.
I had this master plan to take some time off for myself (insert hysterical laugh).
My son’s semi-annual Duchenne Muscular Dystrophy clinic visit was on Monday and Tuesday across the state. TJ and I stayed in a hotel Monday night. He had a medical issue at approximately 10:00 p.m. on Monday evening. Did I mention I somehow came down with something and was running a low-grade fever earlier that afternoon?
Here we are in another city, and I’m trekking to Walmart to buy supplies I am praying works to hold us off until my son can meet with a general surgeon back home on Wednesday morning. Long storty…details not important here… y’all get it. Just another day in the life.
Oh, Wednesday afternoon, as I’m doing yoga with a head cold (go me!) I must have been breathing wrong or something (who knows), but I pulled out my back doing a basic downward dog I’ve done ten thousand and one times. Seriously?! Come on.
Fast forward to Thursday morning. Forgive me while I give a little back story. Our community opened up a new high school four years ago. My youngest son’s class will be the first graduating class to attend all four years. Wanting TJ to get plugged in early (and our family being avid soccer fans – my husband coaching and my oldest playing throughout high school and some in college), TJ wanted to be the soccer team manager. They accepted him with open arms.
Yesterday, they surprised TJ with a new tradition for the boy’s soccer program: The TJ Clime Award! Who is the first ever recipient of the award? My son, TJ!
There are so many aspects of this award that warm my heart. First being that a teammate thought up this award on his own, presented it to the head coach, and saw the entire process through from start to finish – all because he wanted to see TJ’s legacy live on at the high school.
Second, they reached out to us to (1) see if we approved and (2) to get our input on the “TJ-like” characteristics that the recipients should possess in order to win the award going forward (see pic below).
Third, the seniors each recorded a message to TJ about how he inspired them and how they are honored to call TJ their friend. They signed a soccer ball and gave him a trophy. They thought of everything they could have to make TJ truly feel special.
I could go on and on about what is so amazing about this, but being TJ’s mom, caregiver, and advocate, I’d be remiss if I didn’t point out what I find to be one of the most remarkable aspects of this entire surprise. When deciding how they wanted to present it to TJ, someone suggested to the boys multiple options (like at an assembly). Still, they immediately said no and chose to do it in a way they knew wouldn’t overwhelm TJ. They didn’t go with flashy or what would bring attention to themselves. They decided what they knew TJ needed to feel secure.
Another thing I think most would overlook was mentioned several times in the video. It was a theme carried throughout their friendships with TJ. Several brought up a favorite memory: “coach yelled at TJ for driving his scooter on the field.” It was hilarious, but that’s not my point. “Coach yelled” is my favorite part. TJ was treated just like the other players; he did a bone-headed thing and got called out. We could hear the coach yelling, “TJ! GET OFF THE FIELD! WHAT ARE YOU THINKING?!” It was amazing. We loved it!
Another is that his teammates have never let him live it down. Too often, TJ is handled like he’s made out of glass, but his teammates SEE him. And who doesn’t truly want to be seen? Individuals with disabilities don’t always have the kind of support TJ has had. We understand how blessed we are. Our sincerest thanks to the coaches, players, parents, fans, administrators, community, and even our opponents for your unwavering support. My son was diagnosed over eleven years ago and I have numerous moments where I know our advocating has made a difference. This is one of those times when I know our advocacy has impacted future generations. I can see a ripple effect. This isn’t a boast of my husband and my efforts, but of the open mindedness of our youth when we give them tools to make the proper impact.
Don’t lose heart! Just when you feel like giving up, keep advocating! There will be one person who will listen. One person will take notice, open up their heart, and choose to do the right thing by your child. Will it be easy to feel like you are being thrown up against the brick wall of defeat that we call advocacy time and time again? No, it will not. But it will be worth it. Eventually, someone will be there to not help you scale that wall, but they’ll make sure the wall is broken down for your child – even if it is for a moment when they are acknowledged for the fighter they are.
Now I’m thinking about these young men and where they will be going in life after they graduate in a few short weeks. Who will they make an impact on next? Who will be the next “TJ?” Will they be on campus and notice someone who needs a friend or a helping hand? Will they be on the job and invite someone to lunch who is rarely included?
Where will their next ripple reach? This is bigger than my little family. That makes my heart happy.
This week had all the makings of a craptastic week. Then a group of young men reminded me that life is all about perspective and a willingness to keep trying to make the world a better place one moment at a time. Plus, you never know who is taking your words to heart and impacting others.
You know how we keep saying our children are amazing? Well, people are listening!
You are creating ripples, even if you don’t see them.