A Little Thunder Goes a Long Way
Wednesday, October 3, 2001 -- 11:31am
Posted by Bar


Last night I wanted to write but I knew that if I sat at my computer, I would
never sleep afterwards so I decided to write in my much-neglected journal
instead.  I wanted to write so badly because I have some real favors to ask
and messages to communicate and I'm a little crazed about what I want to
say.  Here's some of what I wrote in my journal last night:

"The anger I feel is from the grieving that other people insist on engaging
in with me.  I wish they would STOP!  It's dragging me down at a time when I
most need to be propped up.  I want to scream:  STOP GRIEVING IN MY EAR!  MY
SON IS ALIVE.  HE IS WEll AND HAPPY AND ENERGETIC.  I AM HAPPY ABOUT HIS
LIFE.  I AM NOT SAD ABOUT HIS DEATH BECAUSE HE HAS NOT DIED!"

Now this morning I have some time while he is at school to calmly request
that anyone who feels that Forrest is bound to die needs to stay away from
me!  Much as I love you, I cannot help you with that.  Here's how I see it:
Forrest could die.  Yes.BUT, Forrest is very alive right now.  When I say to
myself, "Forrest can live", I hear how silly that is because Forrest is
already living.  He is proving to me day after day that he intends to live
and so I have decided to stick with him on that thought.  Please stay with
us in that way too.  I figure that if it's true that we all are part of God,
and that collectively we are part of God's energy, then if we all believe
that Forrest will continue to live, then he will.  If we all believe that he
will die.........

I found myself driving in the car on Friday - when my anger was a little
more acute - saying out- loud to myself and to the universe and everyone in
it:  "Prepare Yourself For A Miracle!"  I can't explain it, and I no longer
care if people think that I am nieve or in denial, but I know that Forrest
can live and I want him to be surrounded by people who agree with me (and
him!).  The other day he asked me again if he was going to die, and I said
again that, yes, he would.  And he asked when again, and I said that I
didn't know.  But in this conversation he did not say he would die Friday.
He said he was not going to die for a long, long time.  So there you have
it.  Who knows?  God knows.  It's all in His hands just as it has been all
along.  Our job is simply to live fully.

Enough of that.  I'm guessing that you get my point:  I have no room for
gloom.  Now I feel better........

There's so much to communicate that doesn't carry such thunder.  Like, I had
the great fortune to meet Forrest's angel yesterday afternoon.  Forrest took
me out into the woods to meet him and we took him flowers and grapes that
grow wild next to our house.  We planted our gifts in the path out to our
woods just where angel was.  We visited for a good long time and it was pure
magic.  We looked at the honeybees nearby and I finally took a moment to
distinguish between honeybees and bumble bees.  It was also wonderful to
listen to them for a few moments as we three (Forrest, Angel and me) sat
amongst their buzzing.  What an honor.

After we visited with Angel, we went over to Jesse's grave and said hi to
her.  Jesse's our much-loved dog that died about two years ago.  Forrest
asked if she was under the rocks, and I said that she was.  But - and I
added this so he wouldn't be scared of burial - her soul is not under there.
So, naturally, he asked me what 'soul' is.  Now I ask you, how would YOU
answer that question??  It's a toughy.  I don't think I did it very well.
He changed the subject.

I have also been dwelling on the perfection I feel about the situation I am
in - we are in.  It's another thing that's hard to explain, but it's worth a
try.  People worry that this situation is so awful; so unbearable.  I can't
deny any of that, but at the same time, it is such a rich time.  So Alive
and so deep and demanding.I have this sense that on a certain level
Forrest's having cancer is the perfect scenario for me and I find myself
being grateful for the challenge.  I have been given so much and I have been
taught so much.  This probably sounds wacko, but I am desperate to
communicate it and to assure everyone that on a very deep level I am ok and
so is Peter.  And Forrest, there is no doubt in my mind, is just fine.

On Friday, I reconnected with a counselor that I went to for a number of
years before Peter and I got married 7 years ago.  Her name is Debby, and
she has helped me through loads of stuff and I credit her with guiding me to
a healthier version of myself.  Anyway, I got in touch with her mostly
because I wanted to hear her story again.  She was diagnosed with terminal
cancer 20 or so years ago.  There was no therapy available, so on the day of
her diagnosis, her doctor told her to prepare herself.  She did a lot of
very cool stuff to heal her body and is living proof that miracles happen.
I needed to talk to her.  She is local, so she's been hearing about Forrest
and has been on top of his situation.  I don't need to go into details, but
suffice it to say that I gained much strength from talking with her.  We
agree that faith is what it comes down to.  And thatultimately, Forrest's
life is in God's hands.  And when she and I talk about faith, we are talking
about deep faith in whatever you have faith in.  I've been reading "The
Illuminated Prayer" which is a beautiful book that describes the 5-times
prayer of the Muslims and in particular, Sufis.  I recommend it (especially
now).  But in reading it, I see again how deep commitment and faith can
change life.  And as Debby says, real faith can change body chemistry just
as surely as chemotherapy can.  She knows this to be true and I believe her.

Before I sign off from this meandering and hopefully meaningful e-mail, I
just want to say thank you for being there listening.  I want to say thank
you to all of you who came to my show on Saturday night which was a real
treat for me.  I feel so loved and surrounded and supported and I am very,
very grateful.  I also want to apologize to each of you who I haven't
responded to via e-mail.  This is sort of a one-way dialogue and that is
frustrating for me.  We still get tons of e-mails per week and I am so moved
by each one.  Mostly I feel frustrated that I cannot respond to each one.
It's not my style.  Perhaps someday I will be able to.  Finally, I look
forward to seeing any of you in the Philadelphia area who can get to our
show in Bryn Athyn on Saturday night.  It's going to be a special evening.

Much love to you all,
Bar

Hello from Woodstock
Wednesday, October 10, 2001 -- 11:10am
Posted by Bar


I have been so anxious to be back in touch with you.  That last e-mail
provoked all sorts of great feedback.  Mostly I have been feeling a little
guilty; that I might have come-on a bit strong with my request for only joy
around me!  I've looked inside myself for a bit of an explanation - as
oppossed to an apology - and I realize that I was writing that last e-mail
to myself as well as to you.  My grief is sometimes so gigantic.  It comes
over me unexpectedly and at the strangest times.  The other night, for
instance, Peter and Forrest and I were visiting with Peter's best friend.
He and his fiance have a lovely house that they light with candles and
dimmed electric lamps.  It's very relaxing.  Forrest was having a wonderful
time.  But at one moment he turned around with this big huge smile and he
looked at me with such love.  His eyes, though, looked grey, and it put me
over the edge.  I didn't burst out in tears, but I sort of over-flowed
quietly.  No one knew except for Peter.  He always knows.

The important thing is that I hope that I did not alienate anyone.  I feel
so strongly about surrounding Forrest with life and positive energy that I
may have scared some of you away.  I hope not.  It was and still is very
clear to me that in order to keep my strength and faith in place I must be
around life that's living - if you know what I mean.  In every way that I
think about my life and any one person's life, I realize again and again how
little we know.  Truly.  Anything can happen at any moment and we must live
now.

We had a wonderful week visiting with our families in and around my show on
Saturday night.  The show was a blast.  Erica and Jen sang their socks off
and the audience seemed to really enjoy themselves.  We got our first real
standing ovation and I was overwhelmed.  (Granted, I did insist that they
give us an encore.  I did not, however, require them to lift themselves off
their chairs.  What a thrill!!)  So, thank you all of you who came out.
Sorry that I did not get a chance to say hello to many of you.  One of my
greatest pleasures is connecting with each of you after a show.  As
audiences grow, that gets harder and harder to do.  That's a good thing and
a sad thing.

Anyway, Forrest stayed for the whole show.  Sat through some; ran around
through some.  When we got to bed later, I asked him what he liked best
about the evening and he said "running around and hearing you sing".  WOW!
That's the greatest compliment I've ever gotten.

I hope that you are all well. Much love,
Bar

P.S.  Forrest took Angel to school this morning for show-and-tell.  Wish I
could have seen that presentation!

Hi
Tuesday, October 16, 2001 -- 8:48pm
Posted by Bar


Hi everybody,
Life is so crammed with things to do that I haven't had a momentto be in
touch.  When I'm away too long, I worry that some of you are worrying about
Forrest's health.  But I can assure you that he is doing great.  He's
remarkably energetic and happy.  Yesterday, when he'd gotten home from
school, he spent the rest of the afternoon saying "happy, happy, happy" to
himself.  Don't know where that came from, but it made me smile.

I don't think that I ever mentioned that Forrest's make-a-wish to meet Steve
from Blue's Clues, was postponed because of the attacks in NYC.  It was
supposed to happen the weekend of the 15th and 16th of September.  It's all
been rescheduled and should come together this coming weekend.  YAY!
Forrest is totally excited and READY.  We'll have a limousine ride to the
city on Saturday morning, spend the afternoon on a shopping spree at FAO
Schwarz, and then meet Steve at our hotel for a private lunch on Sunday.
It's going to be so great.  And to make it even more fun, we're going to
stop at Forrest's school on the way and say hi to all of his friends who
will be there for their annual fall breakfast extravaganza.  Forrest's
teacher and I thought it would be fun for all of the kids to experience some
of his adventure.  When we get home Sunday, Peter's sister Mary and her
husband Rich will be here to visit, so it will be a whirlwind sort of
weekend.  Can't wait.....

Forrest and I ran in to a friend of ours at the grocery store the other day.
She privately told me that the night before she'd learned that a biopsy of a
lump she'd found on her breast was cancerous.  She was shook up, naturally,
so I gave her a big hug.  Then I told her that she should tell Forrest
herself.  She got down to his height and told him and he listened.  When we
got out to the parking lot, I asked him what he thought about her having
breast cancer and he said, "hmmmm.......I think she is going to need some
help."  So right.  Thankfully, she caught her cancer very early and she will
be fine.  Nevertheless, she is understandably upset.  When I spoke with her
last night, I was really glad to hear that already she understands that
cancer is an opportunity to reevaluate her life and to live for each day.  I
guess we're all sort of feeling that way these days.  Despite the discomfort
of our collective fear, it is great to see people re-thinking their lives.

We had dinner with a man who is re-thinking things so much so that he has
decided to retire from a remarkable career teaching at the Culinary
Institute to spend more time with his family.  The meal that he prepared for
us was so incredibly wonderful, that I have now put it at the top of my
Best-Meal-Ever list.  Before Saturday, that position had been held by a meal
at the Four Seasons in Philadelphia that I had in the mid '80s.  Our
friend's dinner was not only better, but also amazing because he prepared it
in a dinky mountain cabin with a very small kitchen and was served on
not-the-most-attractive pyrex plates.  We all ate on the screened-in porch
and couldn't believe our good fortune.  And now, Rudy, our friend and chef,
is giving it all up so that he can cook for his family and friends.  WOW!
What a courageous step.  BRAVO, Rudy.  (In the meantime, his wife and three
kids have moved to Colorado while he stayed behind to take his master chef
exam which only 59 people in the world have ever passed.  The day he
finishes the exam (which he expects to pass), he will retire.  How's that
for a big finish?)

Finally, many of you asked about Forrest's show-and-tell with Angel.  I
didn't witness it, but I learned from his teacher, Cheryl, that Angel being
there inspired a discussion amongst the kids about whether Angel was real or
pretend.  Many, including Forrest, voted that Angel was pretend.  But I say,
what's the difference between pretend and real?  I mean, the other night, I
accidentally squashed Angel by rolling on top of him in bed.  Forrest was
really upset - enough to make him cry.  We both spent a fair amount of time
repairing Angel's wings so that Forrest (and Angel) would feel better.  I
felt lousy, and I was very aware that I could not take Angel's injuries
lightly without hurting him in turn.  That's pretty real to me.  xxxAt this
moment, Forrest is singing into my microphone having turned on the drum
machine by himself.  He's singing "The ABCs" to a hip hop beat and having a
dancing good time doing it.  What a blast.  (Yes, we did get out the video
camera....)

Time to sleep. Much love to you all,Bar

Steve, Blue and New York City
Wednesday, October 24, 2001 -- 11:40am
Posted by Bar


What a weekend!

Our trip to New York for Forrest's Make-A-Wish was a blast.  All three of us
- and especially Forrest - suffered an awful cold, but nothing was going to
stop us.  The limo that was meant to carry us down to the city broke down on
its way to our house Saturday morning, so we went in a decked-out van
instead.  Forrest thought it was the greatest because he got to sit in a
big-boy seat without a car seat.  He also got to put on his own seat
belt.....simple pleasures.  Just as we were piling into the van, Peter's
mother and a bunch of her siblings and their spouses, showed up to wave
good-bye and say bon voyage.  It was great to see them sharing in our
adventure.  Then, as we went a mile or so down the road towards Forrest's
school, lo and behold, right there in front of us, blocking the road with
banners, balloons, people and signs, was his entire class and their parents
cheering and clapping as we pulled up.  It was AMAZING!  Pure magic and so
wonderful that I could not take it all in.  All I knew was that a lot of
people were expressing their love and well-wishes and I will never forget
it.As we got out of the van and wandered around getting hugs and generally
smiling 'til our jaws hurt, I just could not believe how wonderful life is
and how powerful love is.  Thank you, Supertots. Yours was my favorite
moment of the weekend.

Forrest sang several of his songs for the Make-A-Wish representatives and
the driver on the way down the Thruway.  He's very good with "Take Me Out To
the Ballgame" and "ABC".  They all fell in love - so much so that, Bob, the
driver, managed to land the longest, fanciest limo in his company's fleet
for our return home on Sunday night.  When the limo showed up, I jokingly
said to Peter that I thought it would be funny if that city-block-long limo
were ours sitting out in front of the NY Hilton.  Sure enough, Bob stepped
out with the biggest grin on his face.  He knew he'd made our day.  And we
were exhausted, so lying down watching new Blue's Clues videos all the way
home was the best.  (Once we got home, the limo didn't even fit up our
driveway so Peter had to run up the 900 feet to the top and get our car to
ferry a sleeping Forrest up to bed.)

So, how 'bout Steve??  It was great.  We were all SO nervous (including
Steve).  We spent the first few minutes of our two hour meeting exchanging
presents.  We had each made Steve something and he seemed to like our
presents.  He gave Forrest two enormous bags full of Blue's Clues toys all
of which Forrest adores.  He has them all together in a single spot at home
now and is very glad to say, "look at all the presents that Steve gave
me!"  It's hard to describe the meeting.  Steve is/was very nice.  He's 28
and he's very famous and still a normal guy.  We talked a lot about the
music on the show which we all agree is brilliant.  Forrest was shyer than
normal but did sing a couple of the songs with Steve.  They talked about
their favorite colors and their favorite things.  Blue called at one point
and said "babowbow" to Forrest who was thrilled.  Forrest hugged Steve a few
times.  Steve hugged him back.  Now Forrest wants to see him again.  We have
had to explain that that was a once-in-a-lifetime opportunity.  He seems to
understand, but he still wants to see Steve again.  OUCH!When the meeting
was over, I felt like I often do after a show:I review every word I said, I
wonder if he liked us, I wonder if we'll meet again, I wish I had done
better, I feel a bit hollow and sad because the event is over.  It's
Wednesday now, and I still feel a little of that sadness.  We've been
planning our visit with Steve for so long that now there is sort of an empty
place where that dream belongs.  Slowly, I am realizing that Halloween is
near, my birthday, Thanksgiving, Christmas.......so much to look forward to.

We did a few other things is New York including a couple of rides through
the park on a horse-drawn carriage.  We went to FAO Schwarz but were too
sick to stay long.  It's just too crazy in there.  We also visited New York
Presbyterian Hospital where Forrest recovered from his liver resection.  He
really wanted to go and so we did.  The nurses were thrilled to see him
looking so well, and I think it was good for us to go there to remind of us
of how far we have gone with this disease.  It really is remarkable how well
Forrest has done.

It's nice to be home.  Home is definitely where I like to be.  Being in New
York after so much has happened there was very powerful.  The towers really
are gone and their absence is painful and haunting.  This is not a
nightmare, this is real.  Living here, even as close as we are, it still
doesn't seem possible.  There were walls of black and white photographs
everywhere we went with people's faces - lost presumably; gone.
Unbelievable.  I am reminded again that life is just terribly hard.  And I
see again how lucky we are to be safe and warm and with shelter.

Tomorrow we go to Albany for the first time in 4 weeks.  We're due to get an
AFP drawn and generally check in with them.  I don't want to go.  I don't
see the point.  But it's important for me to understand what's going on with
Forrest's body.  Peter and I agree that dealing with difficult news (and
also good news) is part of the test of our faith.  We spoke at length last
night about what faith is.  We both know we need it.  Peter said, "having
faith means you must have faith in SOMETHING.  You can't just have faith.  I
realized as he voiced that thought, that being able to articulate for
oneself what one has faith in is very important.  Having faith guarentees
nothing in this life.  What it does is offer peace and calming in an
otherwise unsettling world.  I believe in the power of love.  I believe that
miracles happen and I KNOW that I am watching one in my life at this moment.
Forrest's approach to life and his LIVING is a miracle - just as yours and
mine are.  We have been given a lot of advice recently, much of it from
people who want us to consider further medical treatments.  The advice is
often coupled with comments like "don't give up on Forrest" or something to
that effect.  It's hard to explain how completely and fully I am NOT giving
up on Forrest.  We have exhausted all reasonable and non-damaging
(thankfully) conventional therapy.  Forrest is so strong and living so
normally that we feel putting him through any more extremely toxic
experimental therapies may put his little body in jeopardy.  At this moment,
I am completely convinced that we are in exactly the right place; a place
that we were destined for when all of this began.  We are being asked to
trust.  We are being told that all is well - and it is.  Forrest is at
school right now running around playing just like all of his contemporaries.
Peter and I both feel that at a certain time, it is time to step back and
accept what is being given by fate or by God or however you want to express
it.  We are at that place and we are not scared or doomed or crazed (at
least not in most moments).  We are simply accepting what is.  It is a real
challenge and a real blessing.......

Thank you for being out there. With much love to you all,
Bar

PS I have just proofread this e-mail, and I must add that in fact, Peter and
I ARE scared in many moments.  I must be honest about that.  But
simultaneous with that fear is a stronger sense of rightness and of
acceptance.  Forrest is strong and well and alive and lit like a torch ready
for life.  How can we ingnore that?  I wish I could explain this feeling of
rightness.......And, it's important to remember that Forrest is not scared
one iotta.  That teaches me a lot.