Friday, August 14, 2009

This one is for Danny

Sometimes you know things in your heart but having them said out loud, on display for all to see and hear, is much harder to accept than keeping them tucked away undisturbed. Danny's check up was Wednesday and the day started of as usual with me yelling "Get Up!" over and over until he snaps "alright, already". You'd think this was a school day in high school. Later he said he would have paid me $150 to leave him alone to sleep a few more hours. Ha! It would have cost him more than that.

His checkup was the same as always, still breathing and getting out when he can. Then we went on to meet with his surgeon, the one with the magic hands, the one who will be putting that unfathomable gift of life into his chest, Dr. Vega. I wanted to understand exactly how antibodies were measured, what Danny's levels were, and what that meant relative to finding "a heart" for him. (It has always felt rather weird to talk about "a heart" as we all do when it actually means someone else has died. But I am closer to imagining the feeling of death turning into life.) Dr. Vega explained and we sat and listened. Antibodies are your bodies defense against germs (so to speak). If Danny has an antibody and a donor has an antigen (the germ) then Danny's body will reject the heart. You get antibodies from infections you've had, blood transfusions, and if you are a woman, from pregnancies. Danny's antibodies are high. When a heart becomes available his antibodies and their antigens are compared. If they find matches, the transplant will not work. Danny does not match 90% of the donor pool in Georgia. And so we wait and wait some more. They may try to reduce his antibodies but that brings other risks. The question becomes, are we, is Danny, willing to take the risks to get a heart sooner to possibly loose it later? Will his heart last long enough to find a donor that is a good fit? There are many more questions floating around in my head that I dare not let out. Danny sat quietly listening, staring at the table top, asking a few questions. I sat, asking a lot of questions, holding tears in, wanting to be told "here's the answer". But that didn't happen.

Next week we will find out what the consensus is from all the doctors that take care of Danny.

When some one is given another chance at life they may write the donor's family and try to thank them and let them know what that gift means to them. I wrote to Danny's donor family many times over the 12 years he has had his 2nd chance. They have never answered. I could never imagine the pain that came with the loss of, in their case, a child. I do know the donor was a boy Danny's age (14). All I could say was "thank you" and it seemed such an empty statement compared to the grief I knew they suffered. After that day many of my long standing religious beliefs faded away and most have yet to return. I quit trying to understand and just kept living with a massive amount of "I love You's" thrown in every single day.

Now I understand enough to know that giving that 2nd chance to Danny and others, was the last grasp at turning death into life. I am heartbroken (catch that?) to have to tell them Danny's 2nd chance is fading. I have waited 5 years to write that letter. I'm not sure if I can. But, I do understand....... now.

I Promise You

How do I survive to face another day

when the only thing I want is to retrofit my fear

And how do I endure the cataclysmic sight

that continues to invade this uncharted frontier

Oh, I hope that you can see what I’m tryin’ to say

Don’t give up on me, I will fight another day

I will fight another way, another time, I will fight another day

It seems I must subsist on the conflicts of the mind

while the ever present truth is just a blue illusion

I only can subsist by trading my heart in for a mask

the smile upon my face you see is just my own delusion

It’s just the same you see, no matter where I go

Don’t give up on me, I’m trying to fight this foe

I will fight this nemesis, insidious bane, I will fight this foe

The only challenge that I know or understand to be

is the one I hope to face when you’re right beside of me.

Right beside of me, holding tight, sitting right next to me.

Don’t give up on me, I’ve got a long, long way to go.

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