02 November 2011

1 November 2011

I have 45 minutes free and the day is glorious! Warm. Warm. Warm. In the 60’s and sunny. This is temporary, I am ever so sure, so I am taking the chance to sit on the front deck and type away while warming this body and soul. I could be raking, I could be inside vacuuming, but I will be tapping on these keys and enjoying the sun.

Julia really scratched and picked on her bad leg last night. I had been giving her benedryl at night to calm the itching and to knock her out, but the night she mightily peed in my bed was a benedryl night that she was also exhausted from the day. So, I’ve been a bit more judicious with the drug to save another late night bed change. This morning when I asked why she scratched, Julia said she had trouble sleeping. I asked why she didn’t wake me up and she had no answer. Obviously, scratching was more satisfying. She scratched hard at a number of sores that were so close to healing that I only bandaided them and did not wrap her leg. I cannot stay up all night and watch her. Nor can I sleep lightly enough to always wake when she stirs. I can do this at times and for a few nights, but a good walk in the cold like we did last night certainly put me out.

I was very frustrated this morning. These sores when they bleed stay wet for a long time. They were all wet this morning, some of them actively bleeding or weeping. I can be sad or upset, but right now, I am just resigned to wrapping and bandaiding for months to come. I am sure that last night’s work added another month onto healing time. I wonder if she will be healed before school lets out for the year. Yes, a bit pessimistic, to be sure.

I am pessimistic more often than I ever have been. I have been accused of being quite the Polly Anna but no more. I would jump to say that it is realism, not pessimism that I have saddled myself with, but . . . . I was able to see that half full glass when the glass was full of present love and future promise. Was it that it was easy for me to see this as half full? There was always another hoped for job, project, possibility and in the meantime there was the strong team that was my family of choice. A bad day ended in a hug, and although the hug did not solve problems . . . but it did. It was a person to talk to, to share the worst of, to take the edge of doom and gloom. I need to figure out a way of doing that for myself.

Today, I wrote a short note to the family who’s son’s death brought David a new heart. David had written to the donor family soon after his transplant. The donor organization connected with the hospital acts as a go between between transplant patience and donor family members for awhile after a transplant. I am sure if David had lived, I would know more about it, but suffice it to say the recently the donor family asked to be direct contact with David. They -- the father and grandmother of the donor -- had written to David in January but I could not answer. Initially, I was thrown back to July and death. It did not help that the hospital had addressed the cover letter to David and inquired about his good health. This time when I received the same letter, it did not cut my heart out.

The heart that David received was 16 years old. A boy who was a good mechanic, liked to drive fast, wanted to join the Marines after high school graduation, and was popular with the girls. There are those who say that heart recipients take on some of the characteristics of their donors. I wonder how much of that we would have seen had David survived. Would David have bought a pair of work overalls and scooted under cars? That seems a bit far from reality but it would have been so sweet to wonder about.

16 years old. How does one ever recover from the death of a young person?

This was part of my dilemma when I received their January letter. What was I going to tell them? I could not bring myself to share more grief. Didn’t they have the right to believe that their child’s death brought some happy life to someone? I could not bring myself to break that bubble, even if the bubble was only there for me.

And so, I put the letters -- one from the boy’s father, the other from his grandmother -- in a file, deciding to leave it until another day. Lately it has been on my mind often but I did not move to write myself until receiving the notice from the hospital. And so, I jotted a short note, explaining why I did not get in touch and filled out the form. I have no idea whether the hospital will honor my request as the surviving spouse, and I have no idea whether getting in touch with me will satisfy the donor family’s wishes and longings. But I have sent the note and form off.

Rethinking this process of becoming aware of and getting to know donors and recipients, it is meant for the living not the dead. There is no provision for surviving spouses/parents/guardians. And yet, at least in the case of heart transplants, 20% die in the first year. With such a percentage, shouldn’t the organ procuring organizations have thought about people like me. Can ‘t they put a note on David’s file that he died and that letters be addressed to me? I had called them when I received the first letter and they basically told me there was nothing they could do. Or couldn’t they just close the file? Something. Anything. It seems overly cruel to make me (and those others like me) understand their lack of a system. I don’t know. It just seems a bit callous to me today.

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