Brian here – I’ve been in Cincinnati for the last two weeks and, as often happens, I’ve fallen behind on the blog. But it’s back to school for me tomorrow, so here we go…
Frankly, the hospital weeks run together. It’s a series of long drives, hotel rooms, early mornings, big needles, lengthy treatments, and fast food. The highlight was the 72-inch inflatable basketball hoop that Jodi picked up at a garage sale: JT and I set it up at the Hannaford Suites and had a great time shooting indoor hotel hoops. Between the slam dunks and the celebratory shouts when an outside shot dropped in, I’m a little surprised that we weren’t kicked out. It was hot outside, so this was a fun way to spend some air-conditioned down time. Otherwise, long hours in hospital room 93.
On Monday, August 18, JT celebrated his 5th birthday. We recognize that each new year is a gift, from God and from his bone marrow donor, so we celebrate big. All of the grandparents as well as Aunt Carolyn, Uncle Jeff and cousins Dean, Cole, and Max came for the party. We played, opened gifts, launched water balloons. It was a sweet day and we pray for many more like it. Thanks to all of you who have prayed for Jacob and supported our family – I believe you’re all part of the reason he’s come this far.
In terms of the medical routine…our schedule changes a bit next week. Both Cincinnati Children’s and Hoxworth Blood Center have been very accommodating; since JT is in the M-W-F preschool class, we asked to switch his treatments to T-W-Th so that he can attend Monday and Friday, only missing Wednesdays. Technically, this means that the photopheresis will cover him for one less day / week but opportunities like preschool are the whole reason he’s endured so much. It’s all a balancing act. Please pray that he continues to make healing progress as he transitions to the new schedule.
Other big news…the doctor gave us permission to enroll Jacob and Justice in private swim lessons at the YMCA. This is huge. To celebrate, we went up for an open swim last weekend and it was great. The boys both love the water, and it’s a natural environment for kid who isn’t able to sweat, so we’re all really looking forward to this new opportunity.
And in terms of other prayer requests…we take Jacob for his preschool orientation tomorrow evening. He’ll be in the hospital Wednesday, so Friday will be his “first day of school.” He’s very excited and we are too, but we’re also anxious. Of course we worry about his health, but I find myself even more worried about how he’ll fit in with the other kids – his scarred skin and steroid-swollen face and pointy teeth will certainly make him stand out physically, and he’s a little behind in the social arena too; it’s hard to learn interpersonal skills when you’ve been isolated to your own hospital bed for much of your life and have been strictly prohibited from being around other children. We want so much for him to catch up swiftly and make friends and enjoy himself…please pray that it might be that way. Kids can be mean, and he’s already suffered so much that I really hope he won’t get his feelings hurt too much. I’m hesitant to send him out there. One of the real blessings throughout this journey has been Jacob’s complete lack of self-consciousness and I’m very sad to think that this may come to and end after a few comments from his classmates…then he’ll start asking the really hard questions, “Why me?” etc.
But, “the times, they are a’changing.” And in my head I know that’s a good thing, for all of us. The world is opening up for Justice too; he’s been limited by Jacob’s parameters for long enough. Justy will also start pre-school this week, and knowing him, I take for granted that he’ll love it and the other kids will dig him. Now maybe Jodi will finally be able to make friends with some other local moms…it’s all promising. But it’s hard to let go, especially after being so vigilant for so long.
To those who have sent us anonymous gifts: many, many thanks. And to those reading, thanks for checking in on us – this upcoming week is a big one so we’d appreciate being remembered in your prayers. Thank you.
And finally, next Saturday morning, the Grove City band named “Treebeard Brown” will be playing live on the Saturday Light Brigade, a radio program produced in Pittsburgh. They go on air at 11:05 a.m. We’ve been invited to come along to hear the music and share a bit about Jacob’s story…please listen! You’ll be able to stream it live – check out http://www.slbradio.org/ for more information.