Wednesday Night with Julian. . . . .

With his eyes closed I can feel his calmness . . .

Julian does not like me taking his photograph, but by recording it - he can look back and see where he has been.

Visiting with Julian at his mothers house is not the easiest thing for me to do. I am out of my element there, and can only look for the day he is healthy enough to resume visitation with me. Although this past Wednesday when I went to visit him I got a little gift of 30 minutes of alone time where it felt like I was the only person in his world with him. We sat on the couch and I simply held him. No words, just Julian curling up and getting comfortable. I could feel his body straining, the deep muscles weakened from chemo, meds, and atrophy were vibrating deep down in his body as he moved to get in the right position. It is moments like this when I want the world to stop, just for a while, and let me savior the quiet love that we have for each other. Just holding him for that 30 minutes recharged my heart that has missed him so much since May 21st. I gently rubbed the tiny stubble of new hair growing in on his head, without my touch hurting his skin like it did last week.

I covered him up to keep him warm and just held on tight. It felt timeless, and it felt like I was at home with him again. The quality of those minutes was the best gift I had gotten for months . . . . like all good things that must end, so too did my time visiting. But, unlike the 40 minute drive there in the dark rain and traffic - wondering how I could ever make up for the lost time since his illness. The drive home was warmed by the dancing rain happily hitting my windshield creating kaleidoscopic choruses of reds from the taillights in front of me. The best part was when he said he really wanted to see me tomorrow. . . . . .

I love you little buddy. . . . .


Dad

October 30 - November 2, 2008

Last week found Julian in the Hospital from 10/30 - 11/2. Reasons are still a bit mysterious, but needless to say I certainly wasn't happy to see him there. But, he keeps a stiff upper lip and does what he is told and guts it out. It could have been a fever from making too many trips to the hospital, or it could have been a bit of Graft Vs. Host Disease (GVHD). It is when Marie cells start to "wake up" in Julian and realize they are not in Kansas anymore. There are two types of GVHD: Acute, and Chronic. . . . pray for acute. It is the minor of the two. Acute is the most common between perfect match donors. Chronic is when there is not perfect matches, it comes wrapped in packages of serious rashes, and big time stomach pains.

Julian is so much tougher than anyone could imagine.

I love him so much,

Dad