9.30.09 - Up and down

It's late and all of a sudden I am all mopey and sad. I'd better get to bed, but first a report. A week and a half ago, James had a terrible episode of seizures while he was visiting us. Instead of his usual one night a week spent with us, he stayed two so we could get him under control. Mary went and changed into her hospital outfit (green pants, Hawaiian shirt, all permanent press and comfy) and grabbed her hospital bag (plastic, covered with watermelons, containing useful things one might need while staying with James in the hospital). Several times she was ready to haul him to the emergency room, but we gave him more Ativan and waited. Seizures came, stopped for a while, came again, stopped again, came again, and finally stopped on Sunday morning. By this time he had had 12 mg of Ativan since midnight Friday, and he could do nothing but sleep. It took all Mary and I both had to get him in the car and to his place on Sunday.

What a difference a week makes! While James slept a lot, as he frequently does now, he was awake and talking. One of the things he was talking about was slings, like David used to kill Goliath. James's favorite Bible video features the voice of Robbie Benson as David and Herschel Bernardi as Goliath. He told us, "I wish I had a sling so I could kill lions and bears!" For about an hour after that, we all pretended to sling rocks and kill various feral imaginary creatures in our backyard. We all had a good laugh about that. James was able to help more with transfers from and to the wheelchair, which is certainly a blessing.

Please pray for James's tummy. He is going to see the ostomy nurse next month. We have lost count as to how many gastric tubes he has had, but (without grotesque details) the site is red and a little oozy. We would have lost James two years ago without the "G-tube", and he still gets most of his nutrition (and all his meds) in liquid form through it. Now he is a big fat pig of about 140 pounds, well-nourished and medicated to the point of absurdity. I don't know how he stays awake at all.

Tonight I thought about how impulsive and hyperactive and just plain wiggly he was as a preschooler. I remember it was impossible for him to sit still in church, much to our frustration. I wish I could go back 20 years and hug him hard and apologize for not being grateful for that energy and joie de vivre. What a gift of love and faith and patience he is! I can't help mourning what we've lost, but he still has a huge part of our hearts. Good night, B