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Many times on the road, by myself in my hotel room, I would cry and ask WHY? I wasn’t comfortable showing my emotions, but sometimes I had to let them out… but only when I was by myself. Jill never realized I cared as much as I did because I never showed my emotions in front of her and the kids. That was how I was brought up. You never cry. No way. I was born and raised in a family of six boys. I never wanted to cry in front of my dad or my five brothers, so I didn’t.

I was hoping for a cure for Hunter. After we went public with his diagnosis, I was hopeful that maybe there was a treatment out there somewhere. But there wasn’t, and Hunter continued to suffer.

I hated watching my son struggle. It killed me. I tried not to think about it.

Chapter 6

Change

Following Hunter’s diagnosis, my life and the life of every member of our family changed drastically. We soon discovered that change is extremely hard; it rips us out of our comfort zones. Change takes us to unknown places where fear is palpable and the longing for normalcy and the safety of the familiar is consuming.

Krabbe disease is ruthless. The prognosis is grim and the average life expectancy for a child with Krabbe is fourteen months. Its victims typically suffer from severe and rapid deterioration of mental and motor functions, become deaf and blind, and eventually succumb to the disease as a result of pneumonia or heart failure. As Krabbe progresses and the sufferers deteriorate, the need for specialized medical intervention—as well as various therapies, medications, and medical apparatuses—increases.

By the time Hunter was a mere four months old, it was already evident that he was unable to achieve the physical and social developmental milestones that infants his age normally do. Hunter’s inability to move on his own kept him from lifting his head, kicking his legs, and reaching with his arms as healthy infants do. Hunter couldn’t swallow either, necessitating his need for a suction machine and feeding pump. Suction machine… what in the world is that? I remember how afraid I was when we were first introduced to the apparatus and taught how to use it. It was horrible. The machine was so loud, and the thought of sucking sputum out of the back of my son’s throat was very unsettling.

Although the suction machine, feeding pump, oxygen tanks, wheelchair, stander, and other equipment we needed helped Hunter live, the adjustments were difficult for all of us, no one more than Hunter. Eventually we embraced these changes, but it took time.

As Hunter’s disease progressed and he required intense specialized medical intervention in every area of his life, his extreme needs demanded that we open up our home and lives to complete strangers. By this time I was used to life in a fishbowl; it came with the territory. Throughout most of Jim’s NFL career, and especially during the four Super Bowl years, we could not escape the glare of the spotlight. But this was different—it was our home. It was our son, our family, and we didn’t know how to handle life and cope with a desperately sick child. We wanted to run away from people, not invite them into our lives and pain. But we were also determined to do anything and everything to help Hunter. If that meant allowing strangers into our home on a daily basis, reluctantly revealing the deeply personal details of the worst time in our lives, then we would.

When Hunter was an infant, I was initially reluctant to let anyone other than my mother hold him. Even Jim got reprimanded a number of times for not holding him the right way. I was radically overprotective—to a fault. But my son’s deteriorating health required the specialized care of professionals. I had the hardest time letting other people take care of Hunter, but he needed what I was unable to give. I wanted to do everything for him, but I didn’t know how. Over time I learned to let go—but it wasn’t easy.

It took an incredible amount of patience for us to adjust