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We all learned a lot that first year. I became acutely aware of the fragility and sanctity of life; that life matters, no matter the breadth or quality of it. Life itself is a gift. Every single breath is a treasure.

Hunter treasured life. And his desire to live changed us.

Year Two, 1998–1999

March 2, 1998—Hunter sat in his Kid Kart wheelchair for the first time today. Kathy and Elizabeth positioned him perfectly and he looked like such a big boy in his new ride. Of course, we made a big deal out of it—we make a big deal out of everything. Erin couldn’t wait to push him up and down the hallway. I’m sure she’ll be asking to push him around every time he’s up.

Hunter’s equipment usually intimidates me at first, but realizing how much he benefits from it has made me more open and accepting of everything he might need. It’s a challenge, but I’m learning.

May 7, 1998—Start feeding, stop feeding, physical therapy, Albuterol, chest therapy, exercise, medication; start feeding, stop feeding, occupational therapy, Tylenol, massage, and Jacuzzi—it’s always something. Hunter’s routine dictates everything all the time. I just want him to be free. Free from pain and medicine. Free from everything.

I wish I could make everything better, but I can’t. I feel so helpless and sometimes hopeless. I’m afraid to leave Hunter, so it’s hard for me to go anywhere. When I leave the house, even if only for an hour, I worry about him the entire time I’m gone. This is horrible.

June 17, 1998—It seemed like a miracle happened today with Hunter. He was sitting on Grammie’s lap and his legs were dangling freely, and he started to lift his legs up and down all by himself. It was amazing. He pulled his right leg up first, and then his left leg in a circular motion like riding a bicycle. Hunter always tries so hard and he’s such a fighter.

August 1, 1998—Hunter’s Hope 5K Race was today. We’re trying to organize as many events as possible to continue to get the word out about Krabbe disease and other leukodystrophies.

I don’t know where we’d be if Jim hadn’t played for the Buffalo Bills. We need his fans to rally behind our efforts. What a miracle it would be if we found a cure for Krabbe before that dreadful disease steals Hunter’s precious life. Watching him struggle every day will surely put me in the grave. Without him that’s where I’d want to be anyway.

We’ve been trying all sorts of alternative supplements and treatments for Hunter. The list is long: Noni juice, Mannatech, herbs and essential oils, magnetic mats—all sorts of stuff I’ve never heard of before. Hey, if it works, I’m all for it. But what if none of these things help Hunter? What will we do?

We’re desperate. My mom is always searching for ways to help him. I don’t know what I’d do without her.

September 27, 1998—Hunter was really sick this morning and slept almost the entire day except for when he was in the Jacuzzi. He was showing off in the water. It’s so exciting to watch him try to do little things like moving his head ever so slightly to look up at me.

Every move Hunter makes is so amazing to me that I just want to bawl every time. Moments like these tell me he wants to live; he wants to move. I can see the desperation in his eyes, and it kills me. We can’t help but celebrate every one of his achievements; everything he does. We rejoice in the fact that he’s alive. He senses our excitement and we know that it motivates him to forge ahead and keep trying. It’s amazing what a little encouragement can do.

We think Hunter’s having a hard time digesting food and we’re very concerned. Hunter’s physical therapist always has great ideas to help him. The other day she molded special shoes that form to Hunter’s feet for him to use while in the stander. They’re so cute. Her name is Elizabeth, and she’s great. To think that I was so apprehensive about her taking care of Hunter…. You never know what change will do.

Erin Marie likes preschool but she misses her brother when she’s gone. They’re so cute together. It’s really late… gotta