This weekend was the worst. Something terrible happened to Mommy's friend Liz's mommy. She was killed by a gun. Liz used to babysit you every now and again. You remember her -- she is super nice. Her Mom was just as nice. I met her at the Hope for Henry Foundation benefit concert we had a month ago. Liz and her Mom loved each other the way Mom and Nana love each other. Liz's daddy is a sheriff. I know Mom told you about him. I am so sad for them. They didn't get to say goodbye. We are going to the funeral on Thursday, the first anniversary of you dying.
Jack was supposed to go to a birthday party this weekend but wasn't feeling well. His chest was hurting him. What was troubling him and making his chest hurt was something he heard at school. It took Jack a while but he finally explained that he was upset because he heard that there is a gun at the birthday boy's house. I am glad he told us. He felt better after knowing he didn't have to go to the party.
Yesterday a bunch of years ago John Lennon, who was one of the Beatles, was killed by a gun. He was the same age that I am. Who was your friend who really liked the Beatles? Mom will remind me.
This is today last year.
Monday, December 09, 2002
henry is laying there like one big bloated catatonic boy. we talk to him all of the time like he can hear us. it is incredibly painful to do this. we talk in that loud voice one uses when they talk long distance on a cell phone, like it's going to make any difference. putting lotion on his body is a treat. we keep him all lubed up and moving from side to side. i hope that touch really does heal. it is sad that you cannot hold or hug him with all of the tubes and wires that have sprouted out of his body.
one thing that has been really bugging me the past 72 hours is that i cannot remember henry from any time before 7 am on friday morning. it is so strange not to be able to remember the past 7 years at all. i cannot bring into focus any images of henry playing, singing, fighting with jack, swimming, eating, cuddling, reading, hitting a baseball, kicking a soccer ball, watching movies, dancing anything. i have stayed home and taken care of him the past two years and my memory is blank. it is like how my memory of my mom is frozen on the day she died. to correct this i am going to watch a copy of the nightline dvd that we brought with us. henry was featured on it earlier this year and they captured a lot of wonder what is behind that phenomenon. why does the body punish you for crying. everyone always says, "go ahead and cry."
posted by Allen at 4:24 PM
the renal folks just came in and let me know that they want to start peritoneal dialysis sooner rather than later. peritoneal dialysis uses the lining of the abdomen to filter blood. a cleansing solution (dialysate) is introduced into the abdomen via a catheter. a surgeon will place the catheter in henry's abdomen and the procedure will either be up here in the room or down in the OR. there is always concerns about bleeding with any invasive procedure with henry. his platelets are very low, but he is receiving a lot of transfusions. we are waiting for a surgeon to let us know his availability, but it looks like it will happen tomorrow. they describe this dialysis as more "gentle" than the kind where the blood leaves the body and is cleansed by machine, hemodialysis. henry's blood pressure is too questionable to go the route of hemodialysis. the way this works is that fluid, wastes, and chemicals pass from tiny blood vessels in the peritoneal membrane into the dialysate. after several hours, the dialysate is drained from the abdomen and replaced good footage of henry being henry. i cannot wait. i have a feeling this will make me cry a lot. i keep having this headache (so does laurie) that is a result of not crying but feeling like i have to cry. when you weep a lot you get a headache. i with new solution. we're now learning all about the kidneys. fun.
what is disturbing is that all of this has no impact on the kidneys' recovery. that will happen organically, kinda like the first breathe from a baby. they told me that the small size of henry's kidneys and the trauma they've endured in the past (from toxic meds) will lengthen the recovery period. it could take as long as 4 weeks for them to start to work on their own. what the dialysis will do is clean henry's blood and take away a lot of the excess fluid that has caused him to blimp up over the past 3 days.
laurie is back at the ronald mcdonald house with her mom, her aunt and joe and jack. i bought her an aero bed because i cannot bear to see her physically uncomfortable in addition to the emotional anguish.
henry is being brought out of his deep stupor and he just squeezed his eyes shut a little tighter when i asked him too. yeahhhhhh! i asked him if he wanted to see laurie and his eyelid flickered. i called her and told her to get back here. he hasn't responded to anything since.
posted by Allen at 3:20 PM
smile, smile, smile
every time i think of you i smile for a while
that's the one thing you always do
you always smile, smile, smile
acting out stories and hugging your friends
i smile for a while
you know what i'll do when i see you again
i'm gonna smile, smile, smile
like ripples in a pond and runners who pass the baton
good feelings will go on for mile after mile after mile
and your big heart circles the world every time that you smile
doing those voices and telling your jokes
i smile for a while
your crazy hairdos and thriftshop coats
they make me smile, smile, smile
every time you break into a broadway song
i smile for a while
everyone around you starts singing along
they smile, smile, smile
like ripples in a pond and runners who pass the baton
good feelings will go on for mile after mile after mile
and your big heart circles the world every time that you smile
o' you know i love you and i am glad you're my friend
i smile for a while
you know what i'll do when i see you again
i'm gonna smile, smile, smile
smile, smile, smile
dan zanes and friends
night time
festival five records
20002
posted by Allen at 9:11 AM
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