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• He had a dad who was a famous football player; my dad is just a regular guy.

• He was older than me by six months. (See above.)

• He liked to wear his hair spiky; I kept mine flat.

• My head was bigger (physically, not mentally).

• I wore glasses; Hunter didn’t.

Sometimes, I would try out some of Hunter’s special equipment to make sure it was okay for him. I did that because I loved him and didn’t want him to get hurt. It was cool going into his equipment. I especially liked trying out the Trixie Lift, which was a kind of roller-coaster ride with Hunter at the controls. Funny—he had no interest in riding the lift himself—he merely wanted to take me for a spin. I tried out his new wheelchair, too, and let his mom take me for a ride in the new van so she wouldn’t be as worried about Hunter when it was his turn.

That’s what friends do, and Hunter was my best friend.

What an amazing young man.

Robert’s words make me cry and yet fill me with great joy. They remind me that while change is difficult, it can also be the uncharted pathway to uncommon joy and unexpected miracles.

Hunter taught us how to live with change and anticipate it. Change we grudgingly succumbed to kicking and screaming… and change we somehow welcomed with open arms. He taught us that the unknown doesn’t always have to be scary. Though initially fearful, we learned to expect and embrace the uncomfortable and the unfamiliar. We learned to surrender the need to control because so many things were out of our control. And even though we didn’t know what the unknown held, we learned to trust the One who holds the unknown.

Chapter 7

Hunter and His Sisters

A few months after Hunter was diagnosed with Krabbe disease, we had Erin Marie tested. Dr. Duffner wanted to determine whether or not Erin was a carrier of the deficient gene.

At first I was reluctant and anxious. Even though Dr. Duffner assured me that it was highly unlikely that Erin could have the disease, I was scared to death. When we took Erin to Children’s Hospital to have her blood work done, she was such a big girl. Almost three at the time, she didn’t fully understand what was going on or why they had to stick her with a needle to draw blood. But she walked in with confidence and didn’t flinch or cry throughout the entire process. I was amazed at her demeanor and proud of her for being so courageous.

A flood of dreadful outcomes crossed my mind as we waited to hear the results. I imagined Dr. Duffner calling us into her office again to tell us that Erin, too, had Krabbe Leukodystrophy. Waiting was horrible. The longer we had to wait, the more anxious I became. Finally, after what seemed like an eternity, the phone rang. Reggie answered it and called me from the kitchen: “Jill, Dr. Duffner’s on the phone.” Erin and Hunter were cuddled next to each other on the living room couch watching Franklin the Turtle. Erin’s treasured “fruit blankie” was spread out evenly between them and her “juice ba ba” was tucked between the couch cushions. (Whenever they snuggled she made sure everything was perfect.)

My heart started to race as I hopped up from the couch and went into the kitchen. Reggie handed me the phone and kept the kids occupied so I could talk in private. Dr. Duffner was not much for small talk and got right to the point: “Jill, Erin is not a carrier. Her enzyme levels are completely normal, so she’ll never have to worry. This is great news, isn’t it?” Then she softened and added, “So, how’s my Little Rabbit doing today?”

Dr. Duffner had nicknamed Hunter “Little Rabbit” months before. She was very affectionate toward him, and her bedside manner was always gracious and loving.

After I hung up the phone, I ran into the bathroom to compose myself so Erin wouldn’t see me and ask, as she often did, “Why are you crying, Mommy?” My tears came freely, and they were mixed with emotion. I was thankful to hear the good news, and yet, at the same time, my heart ached for Hunter. Why did he have to suffer?

Although Jim and I spent very little intimate time together