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October 5, 1998—I wish I could make this all go away—Hunter shouldn’t have to go through all this. He’s on oxygen pretty much all the time now. This is so hard. What a brave little pumpkin he is. He struggles from morning to night just to live. Even though I can’t even stand the thought of being without him, I want him to be in heaven where he’ll be happy and suffer no more. Every time he gets sick, I wonder if he’ll get better or if he’ll continue to deteriorate.

I love the way Hunter smells. When I kissed him good-night tonight, he smelled so fresh and clean. Grammie put Erin’s shirt on Hunter for bed… we were all laughing… I think Hunter was laughing too. Imagine that—laughing without making a sound. I don’t understand it all, but I know it’s true. I love him. I love him. I love him.

November 24, 1998—Hunter’s staying over at Grandpa and Grandma’s house tonight. He loves my parents, so I know he’ll have fun.

He’s doing a little better these days; no pneumonia right now—and that’s always a good thing. But unfortunately he’s been having really bad seizures. Dr. Duffner is trying to figure it all out. She might want Hunter to go on a medication that can only be purchased in Canada. We’ll go anywhere for Hunter. If he needs it, we’ll go get it because that’s just the way it is.

Tonight is the final candle ribbon-tying in Attica for Hunter’s Hope. The volunteers will be tying hunter green ribbons around thousands of baby-powder-scented taper candles. Knowing that people care and want to help us in any way they can is so encouraging. I can’t wait to see the sea of candles light up the sky at Hunter’s Day of Hope for Children. What a beautiful way to celebrate the incredible gift God has given us—our kids. That’s one thing Jim and I share every time we have the opportunity to talk about our story. We want people to appreciate the gift of life because you never know what tomorrow holds. It’s amazing what this disease has done to our family.

My mom’s taking Hunter to Wayne’s World for the candle-tying so everyone can meet him. She wants people to understand why we’re fighting for the kids. They need to know.

December 23, 1998—Erin and Hunter had doctors’ appointments today. They found blood and small crystals in Hunter’s urine and think he might have kidney stones. You’ve got to be kidding me. As if he doesn’t already have enough to deal with, now this. God, if You’re listening, please help Hunter… he needs You. We all need You.

What a whirlwind year two was.

Hope was renewed when we started Hunter’s Hope and our little buddy continued to battle so courageously. Because of Hunter’s passion for life, we stopped treating him as if he was dying, and as a result we all started living… really living. Regardless of his daily struggles, Hunter’s inner joy continued to radiate and penetrate the hearts of all who met him. It seemed as though even though the disease progressed, our hopes and Hunter’s zest for life somehow overcame it all.

Chapter 9

Hunter at Three and Four

Year Three, 1999–2000

January 22, 1999 (Florida)—Thank God for water because Hunter loves it. He loves the pool, the ocean, and his Jacuzzi bath. Every day, at least once if not more, he’s in the water. We’ve tried to take Hunter for a walk on the beach at least once a day, depending on how he’s feeling. The warmer weather seems to do wonders for his overall health, especially his breathing. He’s still on .50 liters of oxygen. What would we do without his oxygen?

Erin slept through the night all by herself last night. I’m so proud of her. She always wants to be with Hunter, but he’s up most of the night so it’s best for her to sleep in her own room. Is Erin getting what she needs? I hope so, because I’m doing my best. I wish I could be in two places at one time.

February 14, 1999—Happy birthday, Hunter and Jim… but not such a happy birthday—Hunter’s in the hospital. It’s 4:30 a.m. in the ICU and we need help. We need a miracle. Every time we come here I’m fearful I’ll have to leave without Hunter in my arms.

God, please do something. Where are