James is not in any pain.
He sleeps a lot.
He has been pretty close to seizure-free.
He still has a ready smile for his dad and his friends. Recently I realized that James cannot smile insincerely; if he smiles, he beams.
He can still eat Cheetos and drink through a straw some of the time.
When he needs something, he will tell us.
He has wonderful caregivers and lots of people who love him.
He believes in and loves the God we also adore, and we know that He will work James's situation for His good and His glory.
We will be getting a new wheelchair in the near future. James needs one with a reclining back, since he can't sit up straight on his own anymore. A harness to hold him up was deemed inappropriate because of James's scoliosis. (We've known about that for years. In the grand scheme, it's minor.)
James had a bunch of friends visit his house recently. He had an "open house" for his supported living agency, so potential clients could see how it works. He made sure and told us about his friends' coming.
Mostly James has been making it to his day program and eating solid food. We substitute tube feedings when he is weak or asleep. He's lost abot 4 more pounds this month (127). He has a little runny-nose virus right now and will stay home tomorrow.
James may get a a special, slide-in-and-out bathtub chair, since no one can really transfer him anymore into or out of the tub. He may also get a speaking device like a friend of his has, since he does not talk much anymore. His care agency is ramrodding these projects.
James's mom and dad are making sure he is loved and safe at all times. We don't think we will ever do better as far as seizure meds go, and he may not ever be any stronger. His needs are many, and yet they are mostly simple, and they are met. I don't know how to tell you to pray for him; there are no crises, but he grows weaker.
Mary and I were talking about the so-called stages of grief. We were in denial most of James's life in one way or another. We were angry when we couldn't get what we thought was appropriate diagnosis and care. We bargained with God a lot; I can't tell you how many times I offered myself as a substitute. I think I went through depression (stage 4) earlier than Mary; she is still having a very hard time. We will be ready to accept James's fate, whatever it is and whenever it comes, but we still pray for our own strength and that James remains happy, pain-free and very obviously loved.
Words fail me, but I know God's love does not fail. Keep praying. B
Friday, March 27, 2009
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