Friday, June 30, 2017

Why I'll Always Wear A Gracelet

There's a decent chance that if you are reading this, you know what a Gracelet is, but for those who don't, a Gracelet is the purple rubber bracelet that hasn't left my wrist for the better part of the last two years.
My family has given out thousands of these purple bands, which feature the phrase "A Grace-Filled Journey" on them for awareness of my five-year-old daughter Grace's battle with the rare genetic condition Infantile Neuroaxonal Dystrophy or INAD.
Our first photo with our gracelets.
Mine said that too. Or at least it used to. With constant wear, the letters on my band have faded from sight like  a sand castle washed away by a wave. 
There's also a small cut on my band, a victim of some careless scissor work when I tried to remove the hospital band from my wrist after we made it home with Grace's little sister, Charlotte.
Gracelets on Grace's Make-A-Wish trip to Hawaii.
Even with the damage, the Gracelet has been on my wrist, looking worse for wear but still hanging on. That is, until Sunday, June 25.
That Sunday morning, with a slight pull, my tear in my Gracelet became terminal. Instead of a perfect circle of purple, I now held in my hand a strip of rubber with two jagged ends from where the separation had occurred.
Gracelets at Red Rocks Park in Colorado.
I did this of my own volition as a part of the children's sermon at our family's church. I wanted to prove a point that while this bracelet hadn't left my wrist for two years, it was what the bracelet represented that was truly important. Sort of how the cross means something more important to Christians.
The Gracelet represents a reminder to embrace the positive in everything you can, because life is extremely short and unpredictable. It represents the support that we have received and is a reminder of all of the people who care for our little girl. But most of all, it represents our family's fight to give Grace the best life possible while we still have her on this earth. 
Gracelets at Walt Disney World
We strive to give Grace these special "Wow" moments, even if she can't fully comprehend what is going on.
We have had the opportunity to present Gracelets to pro athletes like Zac Kerin, Steve Cishek, Keynan Middleton and Lisa Roberts and make them part of our story.
Gracelets at an Avett Brothers concert
We have watched as team after team has embraced our family as part of their own, hosting Grace games and even A Grace-Filled Tourney this upcoming volleyball season.
We have marveled at the places that friends have taken their Gracelets, like Japan, Scotland England and all over the United States. The fact that we can share some of those photos on our blog and on our Facebook page never fails to make us smile at the impact that Grace has had on people.
Gracelets at Busch Stadium in St. Louis
Ultimately, it doesn't matter that I am now wearing a new Gracelet. This one will likely get stretched out or cut or damaged in some other way eventually, but what this little purple band represents will never go away.

I don't need a band to help me remember Grace; she's in my thoughts constantly and I imagine she always will be. But I could use a reminder sometimes that life is way too short to be angry or negative or unkind. That's why I'll always wear a Gracelet.

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