This weekend, I took a short road trip to my hometown to participate in a very special (Cupcake!) 5K to support two of my high school friends who have a child with Duchenne Muscular Dystrophy, a rare, cruel and incurable disease.
It was a family affair, including my sister and brother, as well as my son and his girlfriend (eating cupcakes above). Even my mom joined us at the start and finish*.
The event was really well-organized — and the outpouring of support from the community was amazing. Check out the tutu and tiara team. So. Much. Fun.
But here’s the real reason we were there. This sweet little boy. I took this photo of him for different reasons, mostly because he appears to blend with his peers. He deserves to look and be like every other kid. He deserves to be able to laugh and play and have friends without fatigue, fall risk, or a wheelchair. He deserves to be able to answer the question “what do you want to be when you grow up” without asking the question “will I grow up?” He deserves all of this and more, but does not have any of it.
And frankly, I used this faceless photo because, as I have unfortunately learned with my own children, disease can happen to any one. Disease doesn’t have a selection process based on fairness or any identifiable criteria. It isn’t picky. It doesn’t care how cute you are. Disease is unapologetically random, careless and cruel. It shows up, wreaks havoc upon entire families, and, with utter nonchalance, leaves everyone to piece their own lives and hearts back together, whether or not they are equipped to do so.
What is amazing about this particular family is the way they have responded to the stress and heartache of illness. My friends have been fierce and tireless advocates for their child. They have reached out and educated their community. And while they acknowledge that their battle is a tough one, they are quick to add that they do not battle alone. They thank God in all things, marveling at the unshakeable hand that supports them. “Amazing grace” is what they feel they have received.** I have to wonder if God watches my friends with a gentle smile and says, “You two really do get it, don’t you.”
What a privilege to play even the smallest role in their support network. And if you would like to play a part as well, please keep this child and his family in your prayers.
After the race and after everyone cleaned up, we went to lunch and requested seating on the patio.*** What a beautiful view.
And what a beautiful day.
As promised in yesterday’s post, today I was grateful for:
1.) *A fun day with family.
2.) **Hearing a friend say out loud they’ve been granted “amazing grace” — and feeling their gratitude in your own soul so much that your breath catches.
3.a.) ***The most gorgeous weather we’ve seen in weeks, with sunny, blue skies and cool breezes. (3.b.) Fields of summer flowers.
4.) My brother patiently running a 5K with me, encouraging me to reach closer to my potential — no matter how much I whine or complain about the hills on the course.
5.) Becoming more convinced than ever that there are angels among us.