Without a Word_ How a Boy's Unspoken Love Changed Everything - Jill Kelly [32]
Because journaling is so personal, journals can often give the reader a perspective on the events being chronicled that other forms of writing cannot. So in this chapter, and the four that follow, I’ve chosen to give you a glimpse of Hunter through a chronological gathering of my journal entries. Hopefully these will enable you to see his life through a new lens and appreciate how truly extraordinary his life was. I’ve never been this transparent or risked sharing my heart and my Hunter like this, until now.
Those of us who knew Hunter will tell you that he changed us in profound ways. The grass somehow appeared greener, and the array of beauty that colors our world and the intricate details of creation became more vibrant. Simple things we were usually too busy to appreciate filled us with gratitude because, incredibly, God used the simplicity of the common to show us how uncommon simple things really are. Hunter loved life… all of it. His suffering didn’t take away from his ability to enjoy life; it only made him enjoy what he could that much more.
Year One, 1997–1998
July 14, 1997—Hunter turned five months old today and weighs 14 pounds, 6 ounces. We celebrate every day with him because we don’t know how long he’ll be with us. Every day we try to encourage him to smile by tickling his cute, puffy toes and smooching his neck. We act goofy and make silly faces for him, but he’s still very irritable. Poor little guy. I guess it’s just too hard for him to smile. I think he’s beautiful, though, even when he cries.
What’s making my boy so miserable? Dr. Duffner doesn’t know what part of Krabbe causes irritability. I just hope he’s not in pain. If Hunter’s crying because he’s in pain… I can’t even go there. Lately he’s been twitching a lot too. I wonder why.
We spend a lot of time trying to keep Hunter busy with toys, music, and massages throughout the day. He calms down some whenever we kiss his feet and rub his legs. We still try to give him a bottle even though he has a feeding tube now. I’m hoping he’ll be able to taste and swallow at least for a little longer. Hunter loves his moon-and-stars pacifier and knows when we try to give him a different one—little stinker. He won’t move his mouth at all if it’s any other pacifier. I’m so thankful he hasn’t lost his ability to suck yet.
At least one doctor calls us every day to make sure everything is going okay. We never know when we’ll have to take Hunter to the hospital because the effects of this disease sneak up on you. As time goes by, more of Hunter’s normal bodily functions will shut down, necessitating his need for continuous medical intervention. In the meantime, even though I dread going there, I’m so thankful that we can take Hunter to Children’s Hospital. I wish we knew more about this horrible disease.
August 14, 1997—Hunter’s six-month birthday is today. He weighs 14 pounds, 13 ounces. He’s less irritable now, though he hasn’t smiled yet. Maybe the medication they put him on to help with his irritability and seizures is what keeps him so out of it now. We need to find out. And ever since his operation to have his feeding tube in, he hasn’t opened his eyes. People keep asking me if he’s asleep. I know he’s awake, but how do I explain to them what I don’t understand? Why are Hunter’s eyes closed? I don’t know. I have no idea what’s going on inside his precious, diseased body. I’d do anything to make Krabbe disappear. Hunter’s green eyes are so incredible. I wish he would open them. What if he can’t? What if he never opens his eyes again?
We had an appointment with Dr. Duffner today at Children’s Hospital to discuss the option of a cord blood transplant for Hunter. She said there’s talk in the medical community that a transplant might actually stop