Tuesday, December 10, 2002

well this isn't hollywood or hogwarts. my tears just didn't do it. nor did my kisses and hugs. this afternoon we spoke at length with henry's transplant doctor, john wagner, who told us he wasn't entirely convinced it was aspergillus. we decided (laurie wasn't too psyched, but did it for me) to go ahead with a lung biopsy to find out for certain if it is a bacterial or fungal infection. this was scheduled for tomorrow. about 20 minutes after we finished a BMT fellow came over to us to explain that they just received the results of another culture confirming the presence of aspergillus. that's it. no more. aspergillus is unbeatable, Fanconi anemia wins. this stupid genetic disease that i was sure was no match for the latest medicine and the greatest love beat us to a pulp. the ultimate defeat.

we are now focused on keeping henry comfortable. we'll discuss a strategy with the PICU attending for letting henry go gently. family members will start arriving tomorrow. we want to have everyone here when henry dies. we will have jack and joe front and center. laurie and i took jack to dinner tonight. jack drew a picture of the family, everyone has on kippot because of hannukah. henry has tubes and wires and is happy because he is out of the hospital.

i explained to jack that henry will indeed be happy to be out of the hospital and it will happen this week. i told him that henry fought very hard not to be sick but in the end the sickness was stronger. i told him that henry was coming home but he was not going to live any longer. i told him that we are going to have a funeral and we need jack to help bury henry just like he buried grandma. i told him that henry loves jack and henry knows that jack loves henry. he sat in laurie's lap with his arms around her and wept. i told him that he didn't need to be strong. laurie explained that she was crying because she is so sad and it is just fine for jack to cry as much as he needs.

i dropped laurie off at the hospital and went to take a shower at the ronald mcdonald house. the water would only get luke warm.

laurie is writing a eulogy. she is writing a book about our life trying to save henry's life. i started this diary to help her understand the chronology of this visit, which was supposed to be a short one, and what i have been feeling. i didn't know this would become the final chapter. as hard as it might seem to believe, i really thought henry would be president of the united states one day. i thought he had the wisdom and disposition for the job (like his mother, but i don't think she needs the headache).

i am not comfortable writing about him in the past tense. it'll take some getting used to. i don't think i'll be able to say anything at the funeral. i want to make a cd of henry's favorite music and have it duplicated and hand it out at the ceremony. then people can take it home and always think about this special guy every time they listen to the music. i know i'll be thinking of him every waking moment and when i sleep. i just want the good memories back. i know we rode the roller coaster at the mall of america last month. i just can't get the picture in my head.

we've been saying goodbye for a while now, but it isn't very easy. the fact that his body is here but everything else is checked out is a good thing. it gets you used to him not being around. jack has just come over and is going to have a sleepover at the hospital with me and laurie. tomorrow he has a class field trip to a nature center. he loves that stuff. he'll be okay. joe is probably too young to know anything is wrong. maybe he does and that is why he won't stop smiling and walking and giving us joy.

how incredibly lucky i've been to not only know henry, but to be loved by him and to be his constant companion for so long. after two years of hanging with henry, my best friend, i guess it is time for me to go home, love laurie, jack and joe, find a job and get on with life. so long my superhero.

Henry and I used to sing this together all the time.

You've got a friend in me.
You've got a friend in me.
When the road looks rough ahead,
And you're miles and miles from your nice warm bed.
You just remember what your old pal said.
Boy, you've got a friend in me.
Yeah, you've got a friend in me.

You've got a friend in me.
You've got a friend in me.
If you got troubles, I got 'em too.
There isn't anything I wouldn't do for you.
If we stick together we can see it through,
Cause you got a friend in me.
You got a friend in me.

Some other folks might be a little bit smarter than I am.
Bigger and stronger too.
Maybe, but none of them will ever love you the way I do,
It's me and you, boy.

And as the years go by,
Our friendship will never die.
You gonna see it's our destiny.
You've got a friend in me.

Yeah, You got a friend in me.

You got a friend in me.