Without a Word_ How a Boy's Unspoken Love Changed Everything - Jill Kelly [39]
And in the midst of everything I passionately pursued the heart of God. Hunter’s struggles drove me to my knees—and God, in His mercy, kept me there. The more Krabbe disease tried to steal, the more life God poured into our family. Miracles were happening almost daily, none more significant than the realization that we all needed Jesus as our quarterback.
Chapter 10
Hunter at Five and Six
Year Five, 2001–2002
My journals start to read more like prayers now. My thoughts are so intertwined with prayer that it’s hard to determine the difference… and I guess that’s okay.
January 11, 2001—Days go by so fast, I can barely keep up with the daily demands, much less journal. Hunter has been so busy doing all sorts of fun activities with Team Hunter. Since he can’t move his arms to play, Kristin taught HB how to use his breathing instead. At their latest session, she brought some colorful feathers and placed them close enough to Hunter that he could move them ever so slightly by breathing. Amazing. I could tell by the look on Hunter’s face that he understood that he was the one moving the feathers. Those fleeting moments of independence mean so much to him. They mean the world to me too.
Hunter made a delicious chocolate chip cake with Elizabeth and Marion the other day. He got very messy but I could tell he was having a blast. I guess we’re into baking lately because Grammie had Hunter frosting cookies, too. He’s not the only one that gets all messy—it’s always a team effort.
While Hunter gets a lot of exercise throughout the day, I think he enjoys the movement involved with baking or creating artwork. He doesn’t mind hand-over-hand help. In fact, he welcomes the creative activities so much that I don’t even think it bothers him that he’s not the one moving. As long as his limbs are active, his body can relax some and he can play.
Today, my cousin Justin played the guitar for all of us. He’s musically gifted and loves to share his talent and time with HB.
We’re concerned about Hunter’s hips, so we’ve scheduled an x-ray to get a better look at them. When we exercise his legs lately, you can feel his body resist. It’s much easier to move his legs in the water, but he can’t be in the bath all the time. Hopefully it’s nothing serious. He needs his exercise.
February 15, 2001—We spent a lot of time opening Hunter’s birthday presents today; actually, Camryn opened most of the gifts for her brother. That’s what little sisters do.
Hunter was fitted for “the Vest” today. [The Vest Airway Clearance System is a medical device that helped Hunter to manage and mobilize secretions in his airway. Most children with cystic fibrosis use the vest.] I was nervous and insisted on trying it out first. Although I didn’t really like how it felt on me, Hunter seemed to enjoy it. Besides, it will help his lungs and make chest therapy way more effective.
We have so much to be thankful for. My pumpkin boy is four years old! How can that be? Lord, You’re so good to us, so good.
March 20, 2001—Okay, I don’t know what it is with boys and cars, but they obviously go together. Hunter was up in his stander today and could have spent the entire day pushing his little cars down the makeshift ramp we made. He was fascinated with his ability to make the cars move all on his own.
Such simple little things bring him joy. A life so simple and yet so intense and complicated. Simplicity motivates him to live; yet complexity sustains his living. This concept is ironic. Lord, he needs what only You can give him: comfort in the midst of suffering, peace in the midst of chaos, and an undeniable hope that cultivates extraordinary courage. Please relax Hunter—his muscles are so tight and his little body is rigid… he needs to loosen up so he can play.
April 12, 2001 (Orlando, Florida—Disney Trip)—Thank You for getting us through our Disney trip. What a disappointment