What a Hike Revealed About Our Journey With Our Son’s Krabbe Disease

Krabbe disease is a progressive genetic and potentially terminal disease that affects the white matter in the brains of children and adults. It robbed our daughter, Mabry Kate, of almost every physical ability she had until it eventually took her life just before she turned 11 months old.

Krabbe disease is currently on the newborn screening in only two states, according to Huntershope.org. Had it been tested for in Tennessee and caught before the onset of symptoms, Mabry Kate could have received a life-saving cord blood transplant. Because of Mabry Kate, her baby brother, Owen, has a fighting chance. Because of his sister’s battle, we found out early that Owen also had the disease and were able to get him a cord blood transplant shortly after his birth at Duke University Hospital. Though proven successful, the transplant comes along with an aggressive chemotherapy regime. The average time in which it takes a transplant patient to fully recover and return home is 6 to 8 months.

But now that Owen is at a point where my husband and I feel comfortable leaving him for short amounts at a time, we’ve taken turns going to our hometown in Tennessee on a couple occasions. It’s a refreshing way to keep our sanity and helps pass time a little more quickly until we can bring Owen home for the first time.

Each visit is quick and doesn’t leave much time for visiting every person we would like to. Sometimes we even choose just to stay home and relax on our couch.

The last time I went home, I had a longing to be outdoors. After going straight from losing Mabry Kate during the winter to being in a hospital with our son for 110 days, to now not being able to go anywhere in public or in the sun with Owen, it’s just where I wanted to be. Outside.

I started that Saturday with a much-needed trip to the lake with my mom and dad. It was bittersweet simply because the last time I was on that boat with my parents, we were with Mabry Kate taking her on the lake for the very first time. As I started to dwell on it and become emotional, Mabry Kate showed up, just as she always does.

Even though there was not one drop of rain in sight, much to my surprise, I literally watched as a rainbow was painted on one of the few clouds in the sky. Yes that’s right. Not one raindrop or gray cloud nearby, and she painted me the most beautiful little rainbow.

Following the lake, I made up my mind that no matter how hard it would be for me, I wanted to hike the Chimney Tops trail in the Smoky Mountains with my best friend, Jill. The trail did not disappoint. For me, it was a challenge.

It wasn’t until I returned to Durham and was having a conversation with Jill that I realized how much that hike represented my family’s life.

The way up the mountain was so tough on me, just like this whole journey with Owen has been.

There were parts that were smooth and flat that we just sort of coasted through, much like some intermittent days at the hospital here and there, especially before his chemotherapy.

But those smooth parts were far outnumbered by the steep and rocky parts, just as they have been through Owen’s transplant journey. At times, I’d become worn, tired and discouraged, but my focus was on reaching the top. The views there are breathtaking and so worth the hike. So with the help and encouragement of Jill, I continued. Just like in life.

Our focus is on getting Owen better and getting him home (the top). There have been an uncountable number of times when we have become worn, tired and discouraged, but we have been blessed with an incredible support system who continually encourage and pray for us. So with what we believe is God’s help, and the support of our family, friends and prayer warriors, we press on, our eyes focused on the top.

When we finally got to the top, you could rock-climb the rest of the way to get to the very tip-top. As we began the rock climb, it began to rain. Even though we could see the top and we were so close, there were still obstacles.

In this journey with Owen, we are at the point in which we can see the top. We are almost there. Owen has fought so hard and is so close to getting to go home, but there has been “rain” this week. I’ve become frustrated knowing we are so close, and small obstacles keep getting in the way. But he continues to fight, and we will continue to move forward with him as we approach the top. When we get home, what a homecoming that will be. It will be breathtaking, just like the views from the top of that mountain.

As Jill and I journeyed our way back down the mountain, we both learned quickly that it wasn’t going to be smooth sailing. There were times we slipped or tripped ourselves up, but we finished the hike, and a sense of accomplishment came along with it.

The way down the mountain was a reminder to me that once we reach “the top” and Owen gets to come home, there are sure to be some slick and bumpy places. It won’t be smooth sailing, but it will be beautiful.

This journey we have traveled with our son has been tough, but it will be so worth it. He is battling head to head with the same illness that took the life of his beautiful sister. To see how far he has come only gives me that much more hope for how far he will continue to go.

The hike Jill and I took is just one moment in the midst of the many we have lived. In that same sense, these several months we’ve been here at Duke watching Owen take on Krabbe disease will be a moment in the past as he continues to live life fighting and winning this battle. And Mabry Kate will continue to paint us rainbows as a reminder that she is always with us, and that we will all be together as a family one sweet day.

Follow this journey on TeamMKO.