Weathering the Storms Together

It has been a while since I shared an update on Wyatt and our family. Since school let out for the summer, we’ve been filling our days with trips, making memories, and bracing ourselves for a major milestone: Wynston’s senior year.

I’ve been meaning to write this for a few weeks now, ever since Tropical Storm Arthur came through Luling. It brought endless rain, roaring thunder, blinding lightning, and an exhausting string of tornado warnings. That night was terrifying for all of us, but it gave me a profound reality check about what Wyatt—and anyone else who relies on a caregiver to get into a wheelchair—goes through during a crisis.

As scary as a nighttime tornado warning is for anyone, it is absolutely paralyzing when you cannot get out of bed on your own. When the very first siren went off in the dark, Wyatt called out from his room: "Mom, get me in my chair. I'm scared, and I don't want to be stuck in bed."

We got him up, woke up Wynston and Ava, and all huddled in the pantry watching the news. Once the warning expired, we breathed a sigh of relief and got back into bed. Then the sirens went off again. And again. Eventually, Wyatt just looked at me and said he might as well stay in his chair because sleep wasn't happening anyway. Two tornadoes actually touched down within miles of our house that night.

I want everyone to pause and think about that for a minute: What do you do when you entirely rely on someone else to get you to safety?

My heart broke that night out of sheer fear for my son. But it was also completely filled with love and awe. During the final siren—the critical one warning of imminent danger—Wynston leapt out of bed and got Wyatt safely into his chair before he even woke Patrick and me up. I honestly don't know how to fully explain the profound pride and awe I feel for Wynston.

Not long after that exhausting night, we headed east for the Connect Conference, and it was there that I saw just how much Wynston has matured. He didn’t just join the sibling tracks every day; he made it his mission to ensure the boys with Duchenne Muscular Dystrophy (DMD) were included in every single fun event, including a group trip to Hollywood Studios.

Wyatt and Ava also loved the trip, participating in sessions and soaking in the comfort of being surrounded by families who truly understand this life.

Ava learned so much more about DMD, and this summer is just the beginning of her joining us on this deeper journey. She will be right there by Wyatt's side when we travel to St. Louis for his clinical trial, and again when we head to Ohio for his annual appointment at Nationwide Children's Hospital. Having her love and support beside Wyatt means everything to us.

Speaking of his trial, Wyatt has now been in it for three and a half years, and the medication is finally going before the FDA! At the end of this month, Wynston and I will be traveling to Washington, D.C., joining many other families to show our support for this drug. It has done so much for Wyatt, and it desperately needs to be approved so other boys who aren't in the trial can finally access it. In the coming days, I may be asking for your help in writing letters to the FDA to help us shout from the rooftops that this drug works.

Finally, our recent trips have brought a bittersweet realization: Wyatt’s fur baby and service dog, Wrigley, is slowing down. We had been bouncing around the idea of starting the process for a new service dog, but we weren't sure if it was the right time—until I received a surprise text from Wrigley’s original trainer. She let me know she is starting to train service dogs again and would love to help Wyatt on this next chapter.

It is not an easy decision. The commitment and financial cost are significant. She is going to help us find the perfect match—either a young puppy or an older puppy around eight months old that already knows basic manners. Please keep us in your prayers as we search for the perfect fit for Wyatt and our family.

Alongside the dog, we are also actively working on getting Wyatt a robotic arm that will attach to his wheelchair to increase his independence. It will allow him to hold items and reach things on the ground or above his head. As we all know, insurance companies never like to make things easy. We are asking for all the good vibes you can send our way that this won't be an uphill battle. Wyatt deserves every ounce of independence possible.

If you’ve read this far, you know that our days are consumed with keeping Wyatt independent, moving forward, and making sure our family lives and loves through every single minute. Life is far too short to do anything less.