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April 2002
A New Kind Of Wednesday
Wednesday, April 3, 2002 -- 1:29pm
Posted by Bar
I'm in Heaven - our local coffee shop.
For the first time in many weeks I've run into someone I know well who
hadn't heard that Forrest had died.
"How's the little fella?" He asked.
I thought that he meant Peter. Silly me. When I told him that Forrest died
7 weeks ago, his color changed and his balance faltered. In that moment I
realized that the last time I saw this friend named Jimmy was exactly a week
before Forrest died. We were at the local diner for dinner that Saturday
night and Jimmy was there too. Peter, Forrest and I were playing with the
gumball machines in the lobby of the diner when we spotted him. He was so
excited to see Forrest because it had been awhile and Forrest was so much
stronger and he'd grown hair and he was running around with so much
enthusiasm.
When I told Jimmy just now, he went into the same shock that all of us
experienced nearly 2 months ago: he shook his head, he looked confused, he
had no words, he held back tears that were dying to flow. I kept saying,
"I'm sorry, Jimmy, I'm sorry", just like so many people have said to me so
awkwardly in the last few weeks. What else could I say? Finally I left him
to sit and have his breakfast. He's at another table right now trying to
make sense of the world and I cannot help him one bit.
I admit that I feel this odd sort of good feeling right now. Knowing that
there are still people who are just finding out about Forrest's death helps
me because I know that they are now deep in whatever grief or reflection
that they must go through, and that I am not alone. It also reminds me that
it still hasn't been that long. Soon enough, everyone will have completely
moved on with their lives - including Peter and me. That fact holds a
certain amount of sadness for me. When I was jealous a few weeks back about
Maria Housden's book, and when I was angry about how some of the parents at
Supertots wanted to sweep Forrest under the rug, what I was really trying to
say was:
Please, please, please, do not forget my son!
I see now that my anger and my jealousy were really pain, and that I was
hurting. I suspect that many people experience this same desperation when
someone they love has died. There's this need to forget and an equally
powerful need to never forget. It's as if I have to prove my love for
Forrest by remembering every moment of his life for as long as I possibly
can. I don't know who I am needing to prove that to. Forrest? You? Me?
God? I guess I am scared that I might forget him myself, and that that will
somehow mean that I don't love him anymore. It's an awful feeling.
Thankfully, there is you.
It never fails. When I write about my desperation, and even if it's been a
while since I expressed that part of my grief, someone always writes me a
thoughtful letter about how they never knew Forrest but that their life was
forever changed by knowing about him, or, someone else that I do know will
tell me on the street how much they miss him. I LOVE when people tell me
how much they miss him. It feels really good. It feels REALLY good.
(hint, hint) :)
Before I go, I do want to let you know that for the most part, Peter and I
are doing well. We grieve differently, and our cycles of good, sad, and ok
are not in sync, thankfully, so one of us is always stronger than the other.
There's lots of soul-searching going on and adjusting to our new reality.
One of the hardest things is losing not only Forrest, but all of the dreams
we began dreaming in our childhood about finding a mate, starting a family,
building a home and creating all of the good stuff that comes with family
life. We have a lot of redefining to do for ourselves. It can be exciting,
but it can also be daunting.
Be well everyone. Enjoy the spring,
Bar
Heads Up
Friday, April 5, 2002 -- 8:02pm
Posted by Bar
Hi everybody,
I have finally had the strength and focus to finish writing out a
description of Forrest's last days. It's been very good for me. I have to
trust that those of you who want to read it will; and that those of you who
don't will delete.
There are 5 parts.
They will follow tonight.
Much love,
Bar
Part 1
Friday, April 5, 2002 -- 8:04pm
Posted by Bar
It's time for me to describe the end, and for me that began on
Tuesday January 29th:
Forrest and I were lying on the bed that night looking up at the skylights
in the ceiling which we often did. Peter had put storm windows on the
inside to keep us warmer, so Forrest and I could see our reflections as we
lay on the bed. We would wave at each other and make faces and generally
laugh and act silly.
Out of the blue, Forrest looked at a different part of the ceiling - a
junction of the wall and the ceiling just above the door into our room - and
said, "Look! There's a hole". I had a sense of what hole he was referring
to, so as casually as I could I said, "oh yeah, what's inside the hole?"
and he answered, "Lights". I asked, "what color lights?" and he said, "oh,
you know, regular lights". (Which I interpreted to mean 'white' or a
familiar sort of lamp light, as opposed to a purple or blue light). Then I
asked him if he wanted to go in the hole or if he wanted to stay here, and
he said, "I want to stay here".
At the time, I figured that Forrest had just rejected Death's invitation,
and needless to say, I was glad that he wanted to stay "here". We carried
on playing, jumping on the bed and generally doing what we always did. I
felt a weight lift from my shoulders.
Wednesday the 30th:
No school. It was parent conference day and I went to school with Forrest
to talk to Cheryl about how he was doing. Every parent had 30 minutes. We
were scheduled for 10am. Cheryl's comments were exciting and warming and I
thought I could not be prouder of my son. She described him as energetic
and enthusiastic. She said she never deferred to him because of any
physical weakness because there weren't any. My most cherished memory of
that morning was her telling me how she had never met another 3 year old who
delighted in her victories and her happiness as much as he did his own. He
liked when she won a game and he shared in her joy. She also reported that
in two and half years at school, he had never engaged in any confrontational
behavior. That he was a peace-maker, she was sure.
I felt considerable love for him and basked in the glory of who he was. He
had obviously already become his own person. I mean, I am a lousy loser and
a real competitor, so his traits were ones that I admired.
In the back of my head I could not help wonder about whether he would live
long enough to share some of his great qualities, but he had seen the hole,
had chosen to stay here, and I felt real hope.
We left school and went over to the church for a meeting I had at 10:30. I
had told Forrest that I needed to pay attention at this short meeting, so he
would have to play in the playroom while I sat in the next room. He was ok
with that, and loved the playroom, so I was ok with it too. During the
meeting he was a little more needy than usual and I was a little surprised.
But we left a little while later and headed off to gymnastics. On the way
we stopped at the bagel store to pick up some lunch. I pulled him out of
his carseat and as I walked toward the store, it was clear that he did not
feel good. He put his head on my shoulder and I knew his tummy was sour. I
took him home, he got sick just as I got him into bed, and then he slept
like a baby for a couple of hours. I cancelled my rehearsal for that night,
not knowing if he would feel better after his nap, but when he woke up he
looked and seemed just fine. He didn't get sick again and we carried on as
usual. A lot of the kids around town were having a similar tummy bug so we
figured he'd gotten it too.
Friday the 1st of February:
Cheryl invited Forrest to stay at school for the whole day (as opposed to
just the morning with the younger kids in his class). He did stay, had a
great time and I picked him up at 2:30. He was a little tired, but so was
everybody else.
Saturday the 2nd of February:
Forrest and I went to see our healer, John, at 9am. John thought Forrest
looked great and that his energy was strong. To me, Forrest seemed clingy,
but since I thought that he might have the tummy flu, I explained his
neediness that way. In retrospect, John was surprised that he had not
picked up on the brain tumor although he does remember placing his hands on
Forrest's head and wondering why.
After we left John's, Forrest and I went out for our weekly lunch date
together in Woodstock
Sunday the 3rd:
Forrest went to school in the afternoon to have a private play-date with
Cheryl. This had become their routine on the weekends and was a
much-anticipated time for both of them. I walked home from her house after
Peter dropped Forrest and me off. On my wyk, I thought about how I wanted
to do yoga with Forrest everyday so that he would understand the value of
this kind of self-care throughout his life without having to discover it
when he turned 20 or 30 or 40. Peter, Forrest and I started family yoga
that night by candlelight. It was very sweet and sort of comical and lasted
for only three nights.
Monday the 4th:
Forrest went to school. I worked in my studio at home. Got a call from
Cheryl at 10:30: "Forrest has gotten a little sick. He'd like to stay here
but I think he needs to come home and get into bed". I picked him up,
brought him home, and again, he slept all afternoon. When he woke up, he
looked and sounded great, had dinner and was himself again.
Tuesday the 5th:
Forrest's new babysitter, Sarah, came at 1pm so that I could get into my
studio and get some work done. They played very well together. When I came
upstairs two hours later, they were sitting on a chair in the living room
happily watching Blue's Clues. When she left, Peter, Forrest and I went in
to Kingston to drop one of our cars at the mechanic's. Forrest and I went
to the grocery store while Peter took his car to the shop. We picked him up
later.
The grocery store has these great shopping carts that are shaped like
trucks. Kids can sit up front and pretend to steer and the whole thing
makes food shopping a blast for moms, dads and their kids. Forrest loved
it. We went up and down every aisle. He jumped out periodically to help me
push the cart. We laughed a lot and disturbed the peace a lot which we
loved to do. People seemed to enjoy seeing us have fun, so we always tried
to.
We left and went off to retrieve Peter. On our way home, Forrest didn't
feel so well again, and so we went directly home. But, we thought, it was a
false alarm, because when we got home, he ran around, had a big dinner of
swordfish (his favorite) and baked potato (also a favorite) and we proceeded
to jump on the bed and play Candyland like we always did.
That night, however, he began getting sick in a bigger way. The flu was
kicking in finally and we spent the night doing what parents do when their
children have a stomach bug.
Wednesday the 6th:
No school for Forrest, needless to say. His friends called from school to
say hello and to say that they hoped he felt better soon. That message is
still on our voice mail. During the day, he asked me to take his picture
for the first time in his life. It's a sad picture for me to look at now,
but somehow he knew.
That evening, Forrest seemed to be stronger again, so Peter decided to go to
Albany as planned. He goes the first Wednesday of every month for a class
he's taking. Forrest and I were alone and I was a little worried because I
wasn't sure he wouldn't get sick again. He did not. Yay! And we stayed up
late, as we often did, lying in bed giggling and talking about whatever it
was we talked about. We both loved that time of day and we indulged
ourselves big time that night. Later in the night he was sick, but so much
less so than the night before that I felt sure he was on the mend.
Thursday the 7th:
One tired and hungry boy. He couldn't hold a thing down, but he sure was
trying. The day went slowly. Around 8:30pm, we called his pediatrician to
let her know what was happening. She prescribed a suppository to calm his
stomach, but agreed that waiting until morning was reasonable.
At night, the sickness returned, and by 3am I was truly worried. It still
did not occur to me that he was dying. He wasn't in pain. His belly, where
we would have expected to have felt a tumor, was soft as could be. His
breathing was strong, so his lungs, where we knew there was cancer, were
working fine. This flu, I thought, was really as nasty as everyone had
reported. I thought to wake Peter and head off to the hospital, but I knew
that arriving at the hospital at 4am would result in a long wait in the
emergency room for a bed that would probably not become available until
later in the morning. It was better for Forrest to stay home.
Friday the 8th:
Gave the suppository and Forrest's stomach became calmer. Called his
pediatrician and his oncologist to alert them that we thought it might be
time to get him to the hospital, that we didn't want his dehydration to
weaken him so much that he could not fight the bigger fight. At 2pm we
decided it was time. We realized that we were putting off going to the
hospital because of our fear of putting an IV in Forrest. Up until the
previous two weeks, he'd had a catheter to access him - either to give meds
or to take blood. Our fear of sticking him was keeping us from taking
better care of him.
We carried him to the car and he seemed better for getting outside. He
drank a whole glass of water on the way there and he kept it down so I
thought that maybe he would feel better by the time we got to Albany an hour
away. He slept peacefully all the way there.
When we got out of the car he got sick, so our last hope of going home
without an IV was dashed.
When we got to the floor, everyone was so glad to see us and particularly
Forrest. Our room was quickly filled with all of the staff we hadn't seen
for 7 months. They couldn't believe how well he looked. His whole mood
changed in that hour or so. He just seemed to be a very tired version of
his normal self. He made a few little jokes and took stickers from the
resident who admitted him. The whole scene was familiar and comfortable and
he seemed to enjoy himself.
His nurse, Adrian, put his IV in without a glitch, and plain fluids started
flowing into his body. Everyone felt much better. We gave him some anti-
nausea drugs to help him get some sleep, un-packed our bags, and settled in
for a long hospital night (all nights in any hospital are long!!).
His oncologist came to visit Forrest in the early evening and they tickled
one another. Forrest was not his usual self, but he held his own. Mandy
noticed nothing abnormal.
Forrest slept pretty well, but he was still a little restless and his nurse
recommended giving him a little pain medication to help him rest around
10pm. She said that dehydration could be very uncomfortable and she thought
that he needed rest more than anything else. And he was VERY dehydrated.
Around midnight I could tell that he was still uncomfortable. He was asleep
but he was not truly resting. His nurse suggested trying a low dose of
morphine just to get him through the night. The little boy in the bed next
to ours was having trouble, so the lights were going on through the night,
x-ray technicians, surgeons and doctors were in and out all night long and
generally disregarding the three of us, so that was part of Forrest's
problem, I thought - or maybe it was just part of my problem? Anyway, the
morphine helped. At 3:30, he needed another dose. He was still not peeing
much at all considering the amount of fluid that was going in him, so the
dehydration explanation still made sense and we were all working on the
premise that he would feel better with sleep and fluids.
At 9am, the attending doctor came in for rounds. He decided that Forrest
had still not peed enough, so he called for a bolus of fluids (a lot of
fluids in a very short time). He also explained that Forrest's need for
morphine was normal and that he would only "ask" for it if he needed relief.
Morphine is, he told us, a very good indicator of how a child is feeling.
They sleep well with it, and when they need some more, they squirm. They do
not overuse it, nor do they become addicted to it under the circumstances.
He explained all of that because he recommended that Forrest have a constant
drip of morphine to get him over the hump. We all agreed that that would be
ok, and it was set into motion.
It's getting harder to write now, and I know this is long, but I have to
finish.
At around 10am, Forrest woke up for a moment, and I was lying on the bed
with him. Peter was not there and no one else was around. Forrest seemed
upset. He seemed disoriented. I calmed him down by holding his hands and
talking to him. In a minute or so, he quieted down and I sang to him for 45
minutes before anyone else came into the room. It was lovely. He seemed
very comforted and he slept well and easily. I sang him all of his favorite
songs very quietly and it was a very nice little period of time.
Just before 11, he woke again and seemed to want to get his IV out of his
arm. We were still alone. I told him he needed to leave the IV alone. In
retrospect, that was probably the first of three seizures and he was
probably already in a coma after that one. I didn't notice that his legs
had also seized up - rigid and straight out in front of him. The second
seizure came shortly thereafter when both Peter and the resident had come
into the room. She examined him, and as she did so, I told her that I
thought we needed the attending who I knew was right out at the nurse's
station. When he came in, Forrest had the third seizure. His right arm
clung to Peter's head and I held his left. The resident noticed his legs
and the fact that his eyes weren't right. His left eye's pupil was
completely dialated and his right was teeny. The attending doctor knew
right away what was happening and he said, "Bar and Peter, I can't be sure,
but my experience tells me that there is a tumor on Forrest's brainstem and
that he will go very quickly. Prepare yourselves". I looked him right in
the eyes and I said, "fast is good", but the reality of Forrest's dying soon
was hard to take in. Only moments before we were all thinking dehydration.
Now he was dying and quickly.
The doctors asked us what we might need and we asked for a private room. By
12:30, we were moved to what is known in the inner circles as the "dying
room".
There is much more to write and I want to do it, but Peter has just come
home and I need to be with him now. I will finish this in another e-mail,
or perhaps I won't send this one until I am done with the whole story.
Bar
Part 2
Friday, April 5, 2002 -- 8:06pm
Posted by Bar
It's another day. I've just re-read the first part of this e-mail called
"The End", and I know that I need to continue, so here we go.
When we got to the dying room, I felt like I couldn't breathe. The air was
stale and all of the hospital's windows are inoperable so I couldn't open
one of them. I had to get outside. I got up close to Forrest's ear and I
said, "I have to go take a walk. I will be right back, but if you need to
go before I get back, it's ok." And I hope I said, "I love you".
I went outside in a daze. It was a beautiful, sunny Saturday and there
weren't many people around. I wept without caring about who might overhear.
As I came up beside the hospital to go back in through another entrance, I
heard a woman coming up behind me saying: "are you all right? Can I help
you?" Her presence in my memory has a surreal quality to it, but I need to
try and describe it:
I sat down on a wall outside the hospital and she came right over to me.
She held me and pulled my head to her bosom and let me cry loud into her
chest. She patted my back with considerable strength, and spoke to me in a
very comforting way. She said things like, "Oh, this is so sad. God's ways
are very mysterious. Oh, I just don't understand." I cried and cried and
then realized that I had to get back inside. I told her that my son was
dying, that I had not even weaned him yet, that I needed to get back to him.
I told her that she was an angel and asked her her name. She said it was
Maxine. I told her that I was Bar and that my son was Forrest. Then I left
her and walked up the stairs to the hospital. I remember seeing her in the
lobby in front of me when I got inside. I did not make eye contact with her
then because I needed to get back upstairs to Forrest.
In retrospect, I know that Maxine WAS an angel. Everything about the
encounter was extraordinary. When she first approached me she seemed to
have come out of nowhere. When she spoke to me, her words were not the
words I would have expected from a stranger. I can't explain it. She just
seemed to know something that I did not know. Her compassion for me was
inexplicably comforting. And, even though I walked away from her first, she
was in the lobby before I got there. The other strange thing I remember is
that no one else was around when she was. It was a Saturday afternoon.
There should have been others coming in and out of the hospital. Yet, I
don't remember seeing anyone. In retrospect I wonder if I went into some
sort of time warp thing, met Maxine, and then re-entered what we know as
Time. I don't know. I can't prove it, but I know she was an angel. What
more can I say?
I can tell you what she looked like though:
Maxine was a short woman with very dark black skin. She dressed as though
she were on her way to church: navy blue wool coat with rounded shoulder
seams and big, round, dark blue buttons; a narrow-rimmed black hat on top of
her black, curly-wigged head; white gloves and a square, black leather bag.
She also wore those great little-old-lady shoes - the ones with ties and
maybe a one-inch heel. She was the perfect angel for me. Since that day,
Maxine has come only one other time. The second time she was not physically
present, but she came into my mind in a moment of despair and I was
instantly calmed.
When I got back to Forrest, Cheryl had arrived. Thankfully, I had caught
her by phone before she came for her visit so she knew what she was in for.
Her buddy was dying. It was about 1:15, I guess.
Around 1:30, I got the feeling that Forrest could stay in the condition that
he was in for quite some time and I knew that I could not keep a 24 hour
vigil, but also that I could not NOT keep a 24 hour vigil. It was going to
be very tiring and I didn't know if I could handle it. I asked his nurse,
Kelly, if what he was in was a coma, and she said. "yes".
I began thinking that a miracle was still possible if that was God's will.
I thought about praying for it, but I realized very clearly that it was time
for Forrest to move on to his next life. I did not pray for intervention.
Then, Peter asked if Kelly could suction some of the mucus that was building
up in Forrest's throat so that he could breathe more comfortably. I wasn't
keen on the idea, but Peter was right: Forrest would be more comfortable.
Kelly came back with the tube for suctioning around 1:45. It's a pretty
simple thing to do. A very small tube is basically connected to a vaccum
that can pull out mucus from the mouth or nostrils. She did his mouth and
then we decided to do his nose too.
When she put the tube in his right nostril, Forrest's heart began to beat
very quickly. I said, "His heart, check his heart". She withdrew the
suction and pulled out her stethoscope. Then his lips went blue, and I
said, "he's going", and Kelly said, "yes". She left the room very
graciously, and let Peter, Cheryl and me be with Forrest. When Cheryl saw
that his death was immminent, she left too. Then Peter and I told him it
was time for him to go - that his body was of no use to him anymore. I told
Forrest that there would be beautiful colors and wonderful music and not to
be afraid. He was not rebelling in the least. His heart rate was quickly
becoming quite slow. Peter needed to hold him so he picked him up. He
asked me to disconnect Forrest's IV and I panicked but he reassured me and
reminded me it was just water and to clamp it off first so that the water
would not run all over the floor. He needed to walk around freely with
Forrest. He was weeping. I was in shock. They were bound chest to chest
and Forrest died. It took about 5 minutes. It was peaceful and beautiful
and as intense as anything could be.
I motioned to Cheryl that he was gone. The resident must have been notified
because she was suddenly in the room listening for signs of life. There
were none. Peter held on tightly. After death, a body can have false
breaths as air moves out of the lungs. It's awful. I kept thinking he was
still alive, but he was not.
Peter eventually put him back in his bed. I called Peter's parents. My
mother was already on her way, thinking she would be visiting a dehydrated
little boy. My father, who had decided not to come with my mother earlier
in the morning, was also on his way, knowing that Forrest was dying, but
assuming that he would get there in time. Likewise, Peter's brother,
Lincoln, and his sister, Gray, were on their way.
Lots of things happen after a person has died that you wouldn't know unless
you have experienced it. The body begins to fall apart pretty quickly.
Blood gathers in the lowest parts and you can see it happening - it's sort
of like a bruise. Fluids and things flow from holes and it's generally
messy. Since Forrest had been so dehydrated, his body was relatively clean,
but we had to wipe his nose for hours after his death.
About 30 after he was gone, two of his nurses came in to bathe him. They
wore purple rubber gloves and masks which made me sad. I asked if I could
wash him and they said, "sure". It was good and very strange. He was still
supple and he wasn't dirty, so he didn't really need a bath. I changed his
diaper, and we covered him with the blanket which is now underground with
him, and began our vigil waiting for family members to arrive.
I remember rocking back and forth trying to make sense of what was happening
to me. No amount of cancer prognosis could have prepared me for the loss
that I felt. Shock is a wonderful thing, really. We'd all loose our minds
without it.
Part 3
Friday, April 5, 2002 -- 8:08pm
Posted by Bar
It's now 6 weeks since that moment; Saturday the 23rd of March. I've spent
the last hour re-reading the first two parts of this e-mail so that I know
how to begin this new one. Naturally, re-reading Forrest's death puts me in
a quiet and unsettled frame of mind, but I want to finish this, so I'll do
as much as I can this afternoon.
I remember being in Forrest's hospital room that day as the afternoon light
changed and we waited for family members to arrive. The hospital delivered
all kinds of junk food for us to sustain ourselves. No one could eat.
Forrest's look changed as the day wore on. I told you we kept having to
wipe his nose. Bubbles of mucus would form and I needed for them to be
gone. It's funny how quickly we adjusted to his body being in a new state.
We just cared for him as usual but he wasn't anywhere around by then.
The family whose son was in the dying room when we needed it, leant us their
cell phone so that we could call anyone we needed to call. Matthew, the boy
who'd moved out of the room for Forrest, was now in Forrest's double room.
I went to visit him. I don't know why. I really don't know him. But I
figured he might be pretty freaked out by the events of the morning and I
needed him to know that it was all ok. When I got to his room, I asked him
if I could give him a hug, which, in retrospect, was really akward and
probably not such a good thing to do. Poor kid. He knew Forrest had just
died. He's 10 or so and he's got cancer too. Pretty heavy stuff these kids
with cancer have to cope with. He let me hug him but we were both
uncomfortable. I think his parents are reading this e-mail, and I have
already expressed my apologies and my gratitude to them, but I do so again.
Matthew is doing fine by the way, which is very good news.
I used the phone to call anyone I needed to call whose number I knew by
heart. In the meantime, Forrest's pediatrician, Monica, and her husband,
Gordon, arrived. Our oncologist, Mandy, came in too. She was in shock.
When she visited Forrest the evening before, there were no signs that Death
was upon him. I felt sorry for her. I am sure that Death creeps up on
oncologists often and that they probably feel some sense of responsibility.
They have none. Death is much bigger and more powerful than any one
individual, and more determined than any thing that a doctor might do to
stop it.
While we waited for my mom and the others to arrive, I called the funeral
home and arranged for them to pick Forrest up at 8pm. I was worried that my
mom would show up, walk into the room and see Forrest or be told about his
death before I saw her. I wanted to tell her myself. The whole staff was
put on alert to watch out for her and insulate her. She finally got there
at 5pm. Someone told her to go into the playroom, but I saw her before she
went there. I walked up to her and without any preamble, I said, "Forrest
is gone". The confusion in her face still haunts me. She didn't know what
I meant. She was in no way expecting to hear those words and she wobbled
when she heard them. I wasn't able to be more careful. I needed to tell
her right away. She came into the room and I don't remember her response.
I remember that the next few days I wasn't able to express my grief with
her. It was as if she was the only one who could possibly understand how
excrutiating this was for me because she was MY mom. I think I felt as
though I would dissolve completely if I got too close with her in those
first few days, and I could not do it. I regret that now.
The only other regret that I have is that I moved away from Forrest in those
last three hours. I put a distance between us that I guess was self
preservation. Usually at the hospital I would lie with him in his bed both
at night and at times of particular stress - like when nurses were hanging
chemo or a doctor was checking him. Physical closeness was very important
to both Forrest and me throughout his life. But when he went into his coma,
when it was impossible for him to communicate his need for closeness with
me, I did not lie down with him. I don't understand why I didn't. It still
makes me very, very sad. I wish that I had. I wish that I had snuggled up
with him one last time. I wish that I had held him so that he would have
known that everything was alright.I wish that I had said all of the things
that I loved saying to him when he was still full of life.
Thinking about the fact that I distanced myself at the end makes me crazy
now. I simply cannot stand thinking about it. And yet, there it is. I
did. And I must allow for that part of me that could not do what I wish I
could have done.
We asked Kelly, Forrest's nurse, where the funeral home would pick up
Forrest's body, and the answer was, of course, the morgue. In our 18 month
tenure at Albany Medical, we'd tried to figure out how they got dead bodies
from a hospital room to the morgue. My guess was that they faked a fire
drill on the floor where the dead body was, then closed all of the patient's
doors and wheeled the body to a secret elevator that visitors could not use.
Peter thought I was nuts. He knew that there had to be a more clever way.
He was right.
At around 7:30 - after our family members had come, learned that Forrest had
already died, and had all gone back to Woodstock to wait for Peter and me -
the secret to moving dead bodies around the hospital was revealed: they
have a stretcher that has a secret compartment under the mattress part. The
body is put in a plastic bag and placed in the secret compartment, the "lid"
is closed, and then it's taken to the morgue and no one knows the
difference. Incredible!
I decided that I did not want to take part in the plastic bag part or the
stretcher part, so I said good-bye to Forrest and arranged to meet Peter in
the front lobby. Peter needed to be involved in every step, so he put
Forrest in the bag, zipped him up, and then took him to the morgue. He's a
strong man, that Peter. I admire him enormously.
I have more to write but no more time. The three days after Forrest's death
are important to recount and may take some time, so I'll end here. I'm
tired from re-living this, but I am glad to do it. Already the details are
fuzzy. Somehow knowing that it's all recorded is comforting to me. In the
years ahead, I can come back to these e-mails if I have any questions about
how things happened.
I'm off to sing at a friend's party tonight. Hopefully Peter will be home
when I get back. I learned my lesson last week about being home alone at
night. I don't like it yet. I want him to be here.
Love to you all,
Bar
Part 4
Friday, April 5, 2002 -- 8:10pm
Posted by Bar
One week later. 7 weeks now from Forrest's death. Peter and I are in Bryn
Athyn, the town where he grew up outside of Philadelphia. I wasn't going to
come since I was in Philadelphia throughout the early part of this week, but
the thought of being home alone again was not appealing to me, so I
cancelled my plans and joined him. I am glad I did.
So, I've just re-read "Part 3" to get a sense of where I finished off last
week. When I re-read the paragraph describing my inability to be close to
Forrest in his last few hours on this planet, I got very sad again. How can
I describe the loss I feel at not taking those last few moments with him. I
mean, I KNEW that Forrest was going to die and soon. I KNEW it. But I
didn't respond. I mean, I guess not having any experience with such things,
it did not occur to me to take the time. I guess I just didn't really
understand the finality of it all. And now, almost two months later, I'm
still not sure I understand the finality of it. Some part of me is still
expecting him to come in the room at any moment. Hide and Seek is over.
Alli alli in come free.
Anyway, I must finish the story.
Peter delivered Forrest to the morgue and we met up in the lobby. It was
Saturday night and the hospital was very quiet. Funny how very little
happens on weekend nights and holidays in hospitals. It's as if everyone
waits to get sick or to visit during regular business hours.
We drifted into the garage and then to our car and started home. It was the
strangest, quietest trip I have ever taken. It was dark. The stars were
bright. Peter drove. No one was in the carseat. I sat in the front with
Peter for the first time in a long time. I always prefered to sit in the
back with Forrest so that we could play when we travelled. The afternoon
before I had held Forrest in my lap as we drove up the Thruway. He was too
sick to sit in his chair. As a family we had decided long ago that carseat
laws were not for us. There was simply no way to make it through our
journey by always doing the legal thing. Some laws are made to be broken,
and for us, that was one of them.
I remember wondering what I would feel like when we walked into the house.
We had left in a hurry the day before and I was sure that toys and other
Forrest reminders would be all over the place. When I got home, I felt glad
for his things. He was still very much there and I missed him physically so
much that his things somehow helped me.
We went to bed after our family members had gone. Peter and I lay beside
each other not knowing what to do or say. It was very quiet. Several times
in the night one of us would wake up unable to breathe. Fits of weeping
were frequent. I don't need to describe all of that. No doubt you can
imagine it.
The next day was intense. Peter had decided to build Forrest a casket long
before he had died. He had chosen what wood to use - purple heart - but the
wood had not yet come. In December we realized we wanted to build Forrest's
coffin but we didn't know if we would have the wherewithal to do it on short
notice. So, we decided to make one for each of us as a way of solving a few
different problems. We asked ourselves what length to make Forrest's, which
brought up the question of our faith, which is why '6 foot' was the only
possible choice. As it turned out, Forrest did die suddenly and the coffin
needed to be made within 24 hours. It was 43 inches long.
But before I tell you about that project, I have to first tell you about
going to the funeral home at noon that Sunday. We were meeting Ken Peterson
for the first time. He owns the local funeral home and does an excellent
job. We entered his office not knowing what to expect. Forrest's body was
somewhere, but I'm not sure where. Anyway, we went through everything:
where he would be buried, who would write the obituary, where the memorial
would be held, how much it would all cost etc etc. It was very
business-like and strange as can be. He had asked me to bring the clothes
that Forrest would be buried in. I gave him those, and we all left together
to go to the cemetery to pick a plot. "Pick-a-plot". Sounds like some kind
of weirdo board game, doesn't it?
At the cemetery, we met Eddie. We had met Eddie months before on a visit to
the cemetery. There was a beautiful fallen cherry tree that Peter had spied
that he wanted for wood turning. Eddie had given him several logs and knew
who we were from that encounter. He also knew Forrest because everyone in
town knew Forrest. We picked a site, 3 sites actually, right in front of
the place where that cherry tree once grew. Peter and I will someday lie on
either side of Forrest. I always thought that I would be cremated and
scattered somewhere. But Forrest's death changes that impulse for me. I
have this strange vision of lying underground with him and being able to
hold his hand again. What a nice thought.
By the time we got home, Peter's brother-in-law, Dale, had arrived with the
boards that would ultimately be Forrest's coffin. He is a tree surgeon and
a fabulous woodworker himself, so beautiful wood abounds in his life. He
brought long lengths of a sort of mustardy-brown colored catalpa wood. Dale
lost his three-year-old daughter, Bethany, 20 years ago, so needless to say,
Forrest's death, and Peter's emotional condition were powerful triggers for
him. Along with the two of them, Lincoln, Peter's oldest brother - a man
with considerable love both for Peter and for Forrest - were a building
force to be reckoned with. They measured and cut and sanded and routed and
cut some more for about 7 hours straight. When I peaked in to the shop, it
was very intense. Very focused. Very powerful to see them sharing this
intense sadness of Peter's. By 9pm or so, Lincoln was exhausted, Dale
needed to quit and Peter was running on very-empty. There was a little left
to do and he had to finish. The coffin was due at the funeral home by 10am
the next morning.
In the meantime, some of us women-folk were upstairs embroidering a pillow
for Forrest's head. I found a couple of white linen napkins I had bought on
a solo sojourn to New Zealand about ten years ago. I went down to recover
from too many bad relationships and one of the only things I brought home
with me were these four linen napkins. I never knew what I would do with
them and then they were the perfect thing. Cheryl came over and sewed on
some trinkets, my friend Janet came by with tulips and she embroidered,
Forrest's best friend Lucia and her mom and dad came by and Katy sewed, and
my mom did some too. It was subtle and sweet and I don't know if anyone
noticed it, but it was a wonderful thing to do. I was so grateful to be
involved. What else would I have been doing? Making the pillow gave me
purpose and allowed me to continue taking care of my baby. Otherwise I
would have just been sitting there dwelling on my pain. It was very
therapeutic and I recommend it.
At around 10pm, Peter told us he was done. He brought his masterpiece of
love upstairs and I couldn't believe it. It was fantastic. A work of art.
The wood was beautiful, there were rails along both sides, he'd put silver,
coin-sized angels on the ends of the box - angels that we had been given
early-on in Forrest's journey and that Peter had carried in his pocket
everyday - and there was a cedar heart right in the center of the lid. He'd
originally made the heart for me for Valentine's Day years ago. For the
coffin, he sliced it in half like a grapefruit so that Forrest would have
one half and we would have the other. After we all had finished admiring
Peter's work, we put old fabric on the floor of the coffin to make it cushy,
then put a blanket that my niece Catherine had given Forrest on top of that,
and then we folded up the quilt that his friends from school had made for
him right after his diagnosis, so that he and they would be forever together
under ground. All of this sounds a little funny now, but it was so
important, and it means so much to know that his body is surrounded by the
things that he loved. We had the good sense to take pictures of it all, so
we can still take a look every now and then....
I am going to stop now. I am afraid that these lengthy e-mails might not go
across the internet in tact, so I'll start another one just to make sure.
It's good to be putting all of this down. I'm enjoying the trip back in
time. It was such an intense thing. Already it is bearable and even
enjoyable to feel all of the love that went into Forrest's death - just as
it went in to his life.
I love you all for being out there,
Bar
Part 5
Friday, April 5, 2002 -- 8:17pm
Posted by Bar
Monday morning we delivered the coffin to the funeral home. Ken asked us if
we would like to see Forrest, and of course we said yes. We were dying to
see Forrest - almost literally. So off we went to another building where
viewings are held and bodies are kept. He asked us to sit in a very
particular place - a spot in an adjacent room where we would not see them
carrying Forrest's stiff little body into the viewing area. Peter wanted to
see so he peeked. When Forrest was in place, Ken invited us in. There he
was. Beautiful as can be. Sleeping as dead as can be in his new home - the
coffin that Peter, Dale and Lincoln had worked so hard to build the day
before. He wore his green-striped shirt like Steve from Blue's Clues, his
denim overalls and his little brown-suede tie shoes. He was under his
blanky that our friend Michelle had made for him. His make-up was silly but
made him look kind of like himself. His hair was just as it had been when
I'd seen him last. He was cold as can be. Absolutely absent in every way.
I loved looking at him, seeing him again, knowing that I would not see him
too many more times. It was all very intense, but also manageable and not
nearly as awful as my nightmares had been months before. He had died so
peacefully and had lived so fully that in those first few days, when I was
still in shock, I managed to manage the fog I was in pretty well.
I do remember that the night that Forrest died, when Peter and I were trying
to find a way to sleep, I began to have heart palpatations. I really didn't
feel right and I was struck that I might actually suffer a heart attack and
maybe die. I heard myself say to myself, "No, I don't want to die. I have
too much to live for." I remember feeling relief that I knew I did not want
to die. And just as I was thinking that thought, Peter began to cry and he
said, "I just want to die." I listened. I did not tell him that I had had
the opposite realization a few moments before. In the intervening weeks, we
have both experienced wanting to die and wanting to live. Neither of us has
felt suicidal, but both of us have wanted to die as a way of not feeling our
pain, or, as a way of maybe seeing Forrest again. Since none of us really
knows what happens after death, suicide is a pretty big gamble if visiting a
loved-one is the goal. We figured that out pretty fast.
So, where are we? We're at Monday night - the night of Forrest's viewing.
I will never forget that night. The funeral home was open from 7-9pm. When
we arrived just before seven, the place was already full. I couldn't
believe it. I saw people inside as I entered that I hadn't seen for ages.
People were sad. Some were crying. All were looking at Peter and me as
though they were desperate to see if we were holding up. Ken took our coats
and we went into the room where Forrest had been moved to. He looked
exactly the same. He hadn't moved. His lipstick was still in tact. It was
good to see him again. After I said hello to him, I turned around to the
people sitting in the room and announced that Peter had made the casket.
They were not thinking about that, but responded with their appreciation.
What followed was an incredible out-pouring of love and support. We were
there for 2-and-a-half hours talking to a steady stream of people who had
come to love the three of us. I had no idea I knew so many people. I had
no idea so many people were listening and watching our life unfold. I had
no idea how many people had fallen in love with Forrest. I felt so full and
so cared for. People waited very patiently to speak with both Peter and me.
There was no rush, no pressure to hurry any conversation. I knew
practically everyone's name. The people I did not know came because they
were so moved by Forrest and the energy he exuded. Several of the people I
did not know were young men who seemed to be unmarried or at least were
there by themselves. They expressed their deep love and admiration for
Forrest and told me how much they enjoyed seeing him when we would walk
around town together. It was truly remarkable.
Late in the evening an older woman approached me to introduce herself. Her
sister was lying in a coffin across the hall. Their viewing was
simultaneous to ours. Her sister was in her 80s I'm guessing. Turned out
that the sister was a relative of Louise's. You remember Louise. She's
Forrest's very dear friend who works in the local pharmacy. Louise was
saying good-bye to two good friends that night. It was tough on her,
believe me. The woman I was speaking with pulled me aside and asked me if
she could put a present she'd brought for Forrest in his coffin. She told
me that she had lost her daughter when the girl was 9 many, many years
before. Seeing Forrest, and knowing him through Louise, tore her up too. I
encouraged her to put her gift in the coffin. It was a hot rod car. He
loved them. Louise gave him one almost everyday and he loved each and every
one of them. When we put the car in there with him, I noticed all of the
other gifts that had already been anonymously given. I don't remember most
of them, which is frustrating for me, but there was a poem. I read it and
wondered if I was supposed to. It was beautiful and full of love. I
marvelled then as I still do at how much love that little boy was able to
inspire. He really did change the world.
Then everyone was gone except Peter, Maiya and me. Forrest lay there and it
was time to put the lid on his coffin. Maiya left us. Peter and I stood by
Forrest and said good-bye. Ken came in with a screwdriver, we put the lid
on and screwed in the two screws that would keep his body safe. I had had
awful nightmares about someday having to close a coffin on Forrest. At that
moment, though, it was not as bad as I had imagined. It was matter of fact
and it had to be done - just like chemo and liver surgery and macaroni and
cheese. It was the stuff of life; it was another detail in the caring of my
son. It was our job. We walked away, said good-night to Ken, grabbed a
hold of Maiya and walked to our cars. Two other friends were waiting for us
and they went off with Maiya to sleep at her house. The night was over and
we were exhausted.
Tuesday, burial day, finally arrived. As I am writing this I remember the
day a long time ago when Forrest, Peter and I sat on a hill in the cemetery
and Forrest told us he really liked it there. That same hill looks over the
place where he is now buried. It's a good memory.
The morning was full of house cleaning and generally getting ready. Family
members were still arriving. I remember sitting in the living room alone at
one point when everyone seemed to understand that I needed time to myself.
I cried. I was stunned and confused. It was all more than I could
understand so I did not try. At 2:30 we got in our cars and headed over to
The Colony where the funeral procession was to begin. We arrived at 2:45
and the building was already filled with people. Now I gotta tell ya,
Woodstockers are not known for their timeliness. To be early for ANYTHING
is unheard of, and yet, there we were - completely surrounded 15 minutes
ahead of schedule. The hearse was outside. Peter and a couple of our
friends and I carried Forrest in. Peter had found one more thing that he
wanted to put in the coffin. Ken clearly thought that opening the coffin
was a bad idea. I agreed, so the item - Forrest's handy dandy notebook
(from Blue's Clues) - was placed on top of the coffin instead. The huge
room was quiet as can be and very unnerving. I noticed that my friend
Joshua Pearl, and his wife Cora, were there, so I asked Joshua if he
wouldn't mind playing the piano to take some of the sadness and quiet out of
the air. The piano had been placed on the stage just where Forrest was and
it looked like it was expecting to be played, so Joshua, as gracious as a
daddy-of-2 could be, approached his instrument and played. It was the most
lovely, perfectly perfect inspired music I could ever have dreamed of. I
watched him and l listened and I was so moved and grateful. He had his eyes
on the casket almost the entire time as though he was being told what to
play. It was amazing. Just amazing.
At 3:25, Peter stood up and said it was time to begin our walk to the
cemetery. We had gotten 400 tulips for everyone to take out to the grave to
put on the earth. I had asked my father and Peter's sister Mary to initiate
the procession with Peter and me. The box with Forrest in it was heavier
than expected. We had to walk maybe a quarter of a mile, and the idea was
for others to take over when one of us grew weary. It all flowed perfectly.
Many people stepped in to help. I was interested to see who wanted to carry
Forrest. It was very sweet. My friend, Baird, began "Amazing Grace" as we
walked outside. When that was done, Peter and I started to sing songs from
Blue's Clues and other Forrest favorites. It was fun. We laughed and
enjoyed ourselves.
Finally we got to the site. The hole had been cut earlier in the day. We
placed Forrest on the hydraulic thing that drops a casket into the ground,
and the service began. (By the way, did you know that a person's head faces
a certain way when they are layed in the ground? They face the direction in
which the sun rises. In Forrest's case, it feels like he is facing the
wrong direction. You'd think his head would be on the edge of the cemetery.
Rather, it is his feet. To me, he seems upside down....)
Tom Miller led the burial. He said some prayers and introduced Mary who
would say something more personal. As it turned out, Mary had had her own
nightmare about Forrest's funeral, which she proceeded to share. The
nightmare was that she was going to have to sing in front of everyone at his
burial. Mary is not a singer so the dream was, in fact, very upsetting to
her. But sing she did. She started a hymn that all of the people from
Peter's hometown knew by heart, and it was great. They all sang-out loud
and clear, and Mary's nightmare became this incredible expression of love
and faith for all of us.
Finally it was time to lower Forrest into the ground. As we attempted to do
so, it was clear that the hole was not big enough. Peter had given the
grave digger the wrong dimensions! It was just a little too small. I made
some comment about how one must measure twice and cut only once, which drew
a laugh, but there were these few akward moments of not knowing what to do.
It was like a bad film. Peter had his foot on the coffin trying to force it
down. I thought that the lid might be pulled off and that horrified me. A
part of me seemed to understand, though, that we were being presented with
the quirks of life and that we might as well just go with the flow. We
pulled the coffin out, grabbed our shovels and dug away at the hole. In a
couple of minutes, all was well, and Forrest easily fit down into the earth.
Tulips were covering him now, and Peter and I began to cover him with dirt.
Several others joined in, others helped move the dirt closer to us as we
shovelled. It was important and powerful for me to take part. It was hard
work and really drove it home that Forrest was truly gone. I looked up at
one moment while I was digging and the sun was just breaking through the
overcast skies. By the time we were done and we packed down the earth, the
sun was fully out. Peter and I were on our knees packing the dirt and I
looked at him and said, "we're done". We stood up, embraced, cried-out in
pain, and then went through the crowd, walked away up to the hill which he
and Forrest and I had sat on months before. The view looking back on the
crowd that was gathered was amazingly beautiful. I will never forget it.
People did not quickly depart. Like us, everyone was stunned. Everyone
wanted to linger and try to figure out what had just happened. It took
quite some time for everyone to move on. We enjoyed the quiet and the
perspective that we had from the hill above.
When nearly everyone was gone, we walked back down. The last burial rite
was spontaneous, and improvised, and perfect too. Forrest's music teacher,
Jayna, played an Irish jig on her piccalo, my friend, Simon, sang an a
capella hymn that sounded truly as though an angel were singing for us, and
Peter's niece, Liza, ended the day by singing one of Forrest's favorite
songs: "Take Me Out To The Ballgame" - or "ballgane" as Forrest would sing
it. I learned later from an on-looker that when we all began to sing with
Liza, the cemetery caretaker, Eddie, got really into it and began to sing
along with gusto. I wish I had seen that. What joy!
When we got home, our not-so-big house was a mob scene. I don't know that I
saw everyone who was here. I was too overwhelmed to be focused. I do
remember sitting on the combined laps of my niece, Alison, who is 14, and
her brother, Ben, who is 12. They were having a tough time, understandably,
and I wanted to connect with them. I wish that I had spent more time with
them, but everyone wanted to speak with me and there were tons of people
here. Peter's family built an enormous bonfire so that people could get
outside for air and not freeze themselves. It was another wonderful sight.
I think some people even got to singing out there.
Another remarkable thing was that somebody made tons of food for our
makeshift reception. Apparently Cheryl organized the entire town to get
food into our kitchen while the burial was going on. What a great place
this is, huh?
I think I've told you before about how wild and awesome the weather was at
the very end of that day. Many people have told me that they experienced
that weather too and that they also thought that it had something to do with
Forrest.
I cannot imagine a more perfect and meaningful way to have gotten through
that day. I look back and I am filled with such joy thinking about it. I
know that sounds hard to believe, but I tell you, it was great. So much
love. So much presence and focus and compassion and soul-searching. It was
truly incredible and I am grateful beyond any words I can use to express it.
I know that everyone who was there was deeply moved. Forrest did something
while he was on this planet. I know that for sure. He lived and he loved
and he happened to have cancer. Everything about his short physical life
feels perfect to me now. I can't explain it. It just feels that way. At
his memorial gathering I told everyone about how I had worried during his
lifetime that if he died I would never know what he might have become. I
said that he might have been an engineer because he was very smart and
seemed to have a mind for 3 dimensional objects and for putting things
together. I said that I thought he might be a drummer - a thought that
thrilled me because I have always wanted to play drums myself and I figured
that I might be able to learn if we had a kit around. I told them that he
might have continued with his kindness and compassion to be a healer or a
mediator. He had an uncanny knack for bringing people together and for
creating an environment in which to find peace. It was his nature. He was
very, very kind. And now I know what Forrest has become and I cannot
imagine a life more beautiful or more wonderful or more meaningful than the
one he has already lived. He filled this world with joy and love, and for
me, that is THE stuff of life. When he died, I felt like he expanded out
into the heavens, and, even now, that he continues to grow and love and Be
all that he ever was. I love him more than words can say and I feel
incredibly lucky and honored to have experienced such a person.
And there you have it. I'm done.
Thank you for listening, reading, living this part of my life with me. It's
taken nearly 5 weeks to write it all down. I just couldn't seem to pull it
together any faster.
I love you all with my whole heart. You've made this amazing journey we've
been on not only bearable but downright wonderful. I've loved every moment
of it too. It has been the best-lived and most cherished 18 months of my
life.
"Big Hug!"
Bar
Friday
Friday, April 12, 2002 -- 1:15pm
Posted by Bar
Good morning everybody,
I've had a whirlwind week of excitement related in no small way to Forrest,
so I want to tell you about it.
Long story short, I was asked to do a concert with Phoebe Snow and Beth
Nielsen Chapman for a small audience in Red Bank, NJ on Tuesday night.
Those who were invited were mostly women who had lost their husbands in the
World Trade Center attacks. The concert served as a healing opportunity for
all of us. The producers contacted me three weeks after Forrest died not
knowing about Forrest at all. They knew my music and wanted to use some of
it in a documentary they were doing on the healing power of music. When I
told them why their call why so uncanny, that my son had only just died,
they were silent on the other end of the phone. What followed were phone
calls back and forth to Peter and me, a film crew coming to our house two
weeks later interviewing us about Forrest and about music and about losing
Forrest. One of the producers lost her husband on September 11th, so they
were very gentle and knew some of what we were feeling. They knew to treat
us gently.
Two weeks later, they called again and said that they would like me to do
this concert with Phoebe and Beth, and of course I said 'yes'. I feel like
Forrest is giving me a gift and saying, 'go on, mom, sing, it's what you are
meant to be doing. Your voice will help others to heal."
Needless to say, I was honored to be working with Phoebe and Beth. Phoebe
has long since been a hero of mine. Not only because of her spectacular
voice but because I distinctly remember loving the photograph of her and her
daughter on one of her early records. That daughter is the reason that
Phoebe was invited to take part in the concert. She was born with brain
damage and Phoebe has been an incredibly loving mother to her for the last
26 years. She is a beautiful woman, singer and mom.
Beth is a very successful songwriter living in Nashville. I have heard
about her for years but had not heard her music. She is powerful and
talented and beautiful too. Her husband died of cancer 8 years ago and she
was diagnosed with breast cancer 2 years ago. Learning her songs and
singing with her helped me enormously. She sees this world we live in as I
do: as a wonderful place of opportunity and as an invitation towards
spiritual growth.
We sang together, we sang alone, we cried, we laughed, we had one of those
nights that I wish all of you and everyone on the planet could experience at
least once. So many magical moments. So much to feel and experience.
It was all filmed and recorded and will, the producers hope, be sold to TV
for a series on healing. I confess that I don't really care what comes of
it. The event itself was so incredible, and I was so completely honored to
be included, that I could not ask for more.
If more does come of it, I will certainly let you know.
On a personal note, it was difficult to be away from home in a place where
no one knew Forrest. Even though he was the focus of my being there, I
missed him very, very much and I missed being around other people who really
miss him too. Showing his picture was about as hollow an experience as I
have ever felt. Pictures do not capture his being and his being is what I
love so much. I came home late Wednesday night and I've cried a lot since
then. Signs of some sort of career success somehow don't mean as much as
they used to. I know that feeling love for my son is far bigger than
anything that I might accomplish in the music business. At the same time, I
am acutely aware of the power of my voice and the gift that it is not only
for me but for people who need to hear it. I am grateful and moved by that
gift, and I do feel compelled to give it back just as I was given it at
birth. It's very important to me to do so.
Before I say good-bye, I wanted to add that a very good friend of ours, Dave
Cook, and his son, Ian, are doing a 60 mile bike ride in honor of Forrest
and another friend of theirs who is coping with brain cancer. They are
doing the ride to raise money for research. I am forwarding the
fund-raising letter that Dave created for his friends to you. I am deeply
grateful to him and Ian for their love and energy. Some of you have asked
how you can help, and this is one way that you could. Thank you in advance
for taking a moment to consider it. I will paste his letter below this one.
I hope that you are all well. Thank you again for all of your wonderful
messages recently. We continue to be propped up by you all and are hugely
grateful.
With love,
Bar and Peter
*********************************************************
DAVID COOK
599 Route 212
Saugerties, New York 12477
845.247.9617
davecook111@hotmail.com
April 9, 2002
Dear Friends,
Although the weather these days feels more like winter than winter actually
did, it is spring and that means cycling season is upon us. It also means
fundraising time again. A lot of you may remember the charity ride that
Julie (my wife), Ian (my son) and I did last year called "The Ride For
Research" sponsored by The Brain Tumor Society. The funds raised through
the Ride for Research are directed to support the work of scientific
researchers across the United States seeking a cure for brain tumors. The
ride is a beautiful 50-mile cruise through the Boston suburbs. It is in its
eighth year and it has raised more than $1.5 million to date. Last year's
amount was $524,000 raised by more than 700 cyclists. The goal this time is
to raise $600,000! This year, on May 19th, Ian and I are riding again.
Julie would love to be part of it again but seeing that she'll be seven
months pregnant, we didn't think it would be a good idea.
When we rode 2001, we were riding for Jeff Miller, a friend who has been
battling brain cancer for the last year and a half. He just went through
another brain surgery in New York City this past month and is having a
difficult recovery so, once again, we will be riding hard for him. This
year we also will be riding in honor of someone else. Just two months ago
our dear three-year-old friend Forrest, who had been living with a rare form
of childhood liver cancer called hepatoblastoma, died after slipping into a
coma due to a tumor that had unknowingly grown on his brainstem. This
amazing boy has touched our hearts so deeply as well as so many others, and
we will be thinking of him strongly throughout our ride.
As I said earlier, the goal is to raise $600,000 on this ride. This is
where all of you come in. Ian and I would very much appreciate your tax
deductible sponsorship. You can pledge anything that's comfortable for you
-- from $5 to $100 or more, whatever you can do. Please note that for
pledges of $100 and above, you will receive a receipt from The Brain Tumor
Society for tax purposes. Otherwise, your canceled check will serve as a
receipt. Our personal goal is to raise a minimum of $1000 by May 10th so
please don't hesitate, as it's now only a month away! You can make your
check out to "The Brain Tumor Society" and mail it to us the address above.
I would like to share some additional information about the ride with you:
The first Ride for Research was held in 1995 and raised $30,000 with only 60
riders.
The Ride accounts for almost 25% of The Brain Tumor Society's annual budget.
The Brain Tumor Society has funded over $3.67 million in research grants in
its 11-year existence and has provided support and education for patients
with brain tumors and their families.
In 2001, The Ride raised over $524,000 while the cost to produce the Ride
was less than $35,000. $.96 cents of every dollar goes directly to TBTS
research.
In 2001, TBTS provided $587,000 to fund the work of twelve scientists.
I would like to add that it's also lots of fun and creates a great spirit of
community for all involved. The joy of riding, riding for this cause, and
for us, putting real faces behind names who we are riding for, offers
amazing feelings of contribution, emotion and comfort.
For further information, I urge you to visit TBTS website.
www.tbts.org
so much for spring
Thursday, Apr 18, 2002 -- 11:03pm
Posted by Bar
It's Thursday night and I feel like I have nothing much to say, but I'm
thinking about you all and just wanted to touch base.
It's very hot here. 88 degrees a couple of hours ago. I just got back from
taking my evening walk. Peter and I have taken to walking every night - a
habit we had before there was Forrest - but Peter couldn't go tonight, so I
went out by myself. As I headed off, I thought about how the local bear and
their cubs have probably come out of hibernation by now and that they might
be in the woods along with me. Over the years I have seen several bear in
the woods, and I've even played a not-so-fun game of chase with two cubs, so
I am always excited and a little bit scared at this time of year when I take
off on my walks. I know that the bear are not interested in me, but
nevertheless, there's a nervous thrill in the notion that I might encounter
one. Tonight I did hear something big-ish off to the right beside my path,
so I did what I always do - I sang as loud as I could to let that critter
know that I was in the neighborhood and that I meant no harm. I wasn't
feeling that confident, though, so I sang, but I also turned around and
headed back to the house. About 100 yards later, I turned around again and
in full voice, went back into the woods. I decided that I was absolutely
not going to live in fear on any level. I told myself that if I was going
to be eaten by a bear - hardly likely - well, then, that was my fate. At
least I might get to see Forrest. It's nice to live without fear - or
rather, to live with a little more courage than usual. I wonder if and when
my courage will diminish. I hope that it never will.
I have been thinking a lot about how much I am enjoying the rawness of my
emotional state. Needless to say, I am very fragile and right on the edge
of tears in many moments. It doesn't take much to push me over. But I have
to admit that it's a really great way to be. I have enjoyed the honesty
that I permit myself. I am loving that people are aware of my state and
that they are so kind to me. I love that the whole world seems alive to me.
It is incredible to have an excuse to slow down and actually smell the
roses.
One of the producers of the show that I did last week with Phoebe Snow and
Beth Nielsen Chapman, lost her husband in the World Trade Center. He worked
on the 105th floor. She knew he was gone as she watched the news that
morning. They have 3 children. One is 11 months now; 4 months on September
11th. She and I have already become close friends. She is a remarkable
woman - so strong and so committed to living. She loves her life, and, she
misses her husband. We've talked a lot about how much richer our lives are
these days. Everything seems to be so vibrant and powerful. We talk about
finding a way to live purposefully for the next 40 years when everything we
imagined is so different than we thought it would be. She sees the
perfection in it all and I am grateful for her ability to do so. Her
strength gives me more of my own.
A couple of days ago I got a very brief e-mail from a mom whose daughter,
Emma, died in her arms on Friday morning from hepatoblastoma. The image of
Karen holding her little girl, at home, as she peacefully left this world,
is unbearable to me. I did not know what to say to her. What words of
comfort are there except "I hear you, and I sort of know what you are
feeling"? I can tell her that she will survive if she wants to. I can tell
her to find a way to love life if she can. I want her to know that I want
to survive in most moments, but that if one of our neighborhood bear wants
to have me for lunch, so be it. I could tell her that my heart is so wide
open right now and that I am experiencing life so intensely and so fully,
that there is no longer anything to fear. There is no fear of death because
we've done that. There is no fear of living because we've learned how great
it is to be alive. These emotions we have are as intense as any could be.
If feeling these emotions is what I was afraid of, then I know now that
there is nothing to fear. I can handle this, and to be totally honest, I am
in love with the intensity of it all. For me, it is living. It is feeling
everything and knowing that I am alive and well.
These e-mails always help me to feel stronger. It's as though sorting
through my thoughts and trying to communicate them to you somehow lifts the
burden off my heart. Thank you for that.
I'm off to bed. I'm reading Conversations With God which I highly recommend
to those of you who like your brain twisted on matters of the universe.
The search for God continues.....
Much love to you all,
Bar
news from here
Tuesday, Apr 30, 2002 -- 2:22pm
Posted by Bar
I'm pretty shook up right now. I've been out all morning doing errands and
working myself down into a pretty deep cavern. There's nothing triggering
my grief in particular, it's just the way it is today.
The reason I am shaky is because I walked in just now having left two
candles burning from my meditation early this morning. When I walked up the
stairs I smelled the wax and knew immediately what I had done. When I got
to the windowsill where the candles live, the flame was extinguished in the
big one and the little one - with no plate under it, gulp - had melted down
into the wooden frame of the window and burned a one inch hole in the wood.
I don't know who blew out the flames. My first instinct was that Forrest
had somehow done it. Spirits, I assume, can do things like blow out flames
- it's in their nature, so to speak. But when I turned around after
thanking Forrest for saving the house and my marriage, I saw that the FedEx
man had delivered a package. It was lying on our dining room table which is
very odd. Normally he leaves packages outside on our deck leaning up
against the door. When he delivered my printer last week, he walked around
the house and put it under the roof to keep it dry not knowing that I was
sound asleep inside the house. Today, he must have felt compelled to come
into the house and lay the package on the table, and that's a mystery and a
miracle. I'm guessing that he saw the candles, realized that I was a
knucklehead and took it upon himself to blow them out.
Phew!
Needless to say, losing everything (like Forrest's pictures and videos and
the scrapbook everyone has contributed to for Forrest) would have made life
even more unbearable than it currently is. And lest you think that it is
truly unbearable, let me add that this grief is in fact bearable, but it's
downright difficult these last couple of days.
All kinds of great things are happening around me, though, despite, or
perhaps because of, my heavier mood. Last week I stopped in at Supertots on
my way home from town. All of Forrest's friends were outside on the
playground so I pulled over and went in. What a great thing to do! They
were all so glad to see me. I pushed some kids on the swing set as high as
they wanted to go, I clung to my buddy Sarah who I somehow bonded with the
day of Forrest's memorial service at the school the Monday after he died.
She jumped into my arms and stayed there for a good long time - in no rush
to move on until I could no longer hold her for lack of practice. Then,
someone spilled the beans: the families at Supertots pooled enough money
together to buy a gazebo for the school, and they're calling it "Forrest's
Place". It had been delivered a couple of days before and is located on the
edge of Cheryls backyard in a place she calls "Fairy Land". Forrest Loved
Fairy Land and spent a great deal of time wandering around its magical
paths. There's a spot for tea parties - a favorite Forrest pasttime - there
are loads of pinwheels and fairies and frogs and bugs (large and small) and
there's a hammock and bird feeders. Overhead are wonderful pine trees and
the light coming through them is wonderful. A gazebo fits right in, and the
fact that it is dedicated to Forrest is absolutely perfect. Some of the
kids were sanding it when I got there. I volunteered Peter to make a wooden
sign for the entrance, which has led to him offering to build benches inside
so that the kids can have story-time out there.
While I sat on the floor of the gazebo, 6 little girls jumped on top of me.
One of them asked me: "How does it feel not to have a child anymore?" I
told her it wasn't much fun but that I was doing ok with it. She asked me
if I was glad to see them, so I said, "Are you glad to see me?" and they
all chimed in "yes!" and so I said "well, that's how I feel about seeing
you, too". Everyone was very happy and it was really, really good for me.
Earlier in the week I had run into one of the older kids in Forrest's class
at the local Japanese restaurant. When he saw me he told me that he missed
Forrest. He asked me if I was going to have another child. He told me that
he thought Forrest was going to come back but with a different name "but
still the same Forrest". He said that his family didn't feel the same
without Forrest. On a previous meeting with this same little boy, he told
me that he loved Forrest; that he felt like Forrest was his little brother.
Needless to say, his words are music to my ears. I love that these little
people miss Forrest and love him so much. It means a lot to me.
On Sunday afternoon, Peter and I went to a concert that a couple of our
friends were doing in town. The husband, Peter Einhorn, played a song that
Forrest's music teacher, Jayna, had written for Forrest. It was incredibly
beautiful and caught me by surprise. I did not know that it was going to be
played - nor did they know that we were coming to the show. It was a real
gift. Thank you, Jayna and Peter E.
During that concert, Forrest's friend Sarah, the one who had jumped into my
arms at school earlier in the week, landed in my lap again. She was there
with her parents. She sat on my lap for a long, long time and it was very
nice indeed. I keep wondering where she came from all of the sudden? She
brings me a lot of joy.
Peter just walked in. He promises not to divorce me for the candle
incident. Hallelujah! Turns out he's the mysterious flame blower-outter.
He came home for lunch and found them lit. He never comes home for lunch,
so I still feel as though a miracle has taken place. I do feel protected.
I need to say hello to him, so I'll sign off. Thank you for lifting my
spirits again. I feel considerably better.
Much love to you all,
Bar
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