Matt Runs a Marathon (for Noah)!
Help me support Hope Story!
When we first started telling people about Noah’s diagnosis, we often heard a sentiment that went something like this: “God only gives children with disabilities to people equipped to handle it.”
To be honest, I was never quite sure how to take this. There was comfort in the idea that we might be “gifted” in some unique way to parent a child with Down Syndrome. But in reality, I knew how untrue this was. It’s not like I had any special training or understanding in this area. Surely there were thousands of other people out there - more patient, more kind, more educated than myself - who would be a better fit. Why can’t God have given this to one of them? Was he playing a practical joke?
The only thought I had over and over in those first few days was, “I can’t do this.”
And then I spoke with Rick Smith.
You’ll remember Rick from Katelyn’s post last month - he and his wife Abbie started Hope Story, a nonprofit committed to providing hope to parents who receive a Down Syndrome diagnosis. When I talked with Rick, I realized that I wasn’t in this alone. There were other parents out there - not to mention training, advocacy groups, books, classes, and more - to help me on the journey.
I also had to understand that I didn’t have to have all the answers right away. Raising Noah was going to be a marathon, not a sprint.
And speaking of marathons…
When we met in March, Rick mentioned he might be putting a charity team together to run in the New York City Marathon. Because I’m a glutton for punishment, it’s always been a dream of mine to run that race. I told Rick that if the opportunity arose, I’d be honored to be on the team.
I guess I should be careful what I wish for, because:
I’ve been a runner for years, but I’ve never run a marathon. Honestly, I’m terrified. The feelings aren’t unlike those I had when Noah first arrived. How will I do this? What if I can’t?
But you know what I realized? Training for a marathon and learning how to parent Noah isn’t that different. They’ll both take time, effort, and patience. Dedication and hard work. Passion and love. A clear goal, and a plan for how to get there. One day at a time, one mile at a time.
There’s another common phrase that gets thrown around often, a variation on the above: “God never gives you anything that you can’t handle.” Show me where that is in the Bible (hint: it’s not). Because that’s just not how he works. If that were true, you wouldn’t need him for anything. Rather, God likes to give us challenges that ensure we keep depending on him. Put another way, he doesn’t call the equipped, he equips the called.
I can do this, but not on my own strength. For the next 26.2 miles and the next 26 years of Noah’s life (and beyond), I’ll need help!
Speaking of, that’s where you come in!
Help me support Hope Story
My goal is to raise $5,000 by November 1. Will you help me reach it? Any little bit helps, and your donation will go towards helping families like ours!
For a donation of $75 and above, you can add any song to my training playlist (the more annoying the better)!
For $150 and above you’ll also get to “sponsor a mile” and have your name on my donor page!
For $250 and above, I’ll also record a video message thanking you while I’m out training!
And if I reach my goal by November 1, I’ll run the entire marathon…in a Superman cape!
Whether you give or not, I’ll make sure to keep you all informed on how the training is going, so look out for more updates soon!
This run’s for you, little buddy!
The Importance of Inclusive Language
One thing we’ve had to learn a lot about since Noah was born is what’s the best language to use when talking about Down Syndrome.
In the NICU, they only used “Trisomy 21,” even going so far as to tell us not to use “Down Syndrome.” But when we used that term outside the hospital, no one knew what we were talking about. And what about “Downs” or “Down’s,” which was widely accepted fifty years ago (and is still commonly used in the UK today)?
Recently, there’s been a push to use more inclusive, “person-first” language in the disabled community. John Langdon Down, who first described Down Syndrome (even though there’s evidence of it as far back as 3500 BC!) might have put his name to it, but he did not have it himself. So since “Downs” or “Down’s” indicates possession, advocates in the U.S. have tried to change the terminology to “A person/child with Down Syndrome.”
Also, saying “a Downs child” or “a Downs person” identifies the person by their condition, rather than as a person who has the condition. We always want people to see Noah first, and Down Syndrome second (if at all).
Prayers and Praises
Praises
We started Early Intervention telehealth! Noah continues to make huge strides in PT - he’s reaching for toys, and is starting to roll himself over on his own!
Noah’s maternal grandparents are visiting us this week.
Prayers
That Matt stays healthy and injury-free while training for the marathon.
Noah has some follow-ups in the next few months - pray those go well.
Two amazing parents with an even more amazing son!
Exciting for the run! Also, that inclusive language is so important. Noah is not his condition. Thank you for reminding us of the best way to speak of Noah.