After the Parade
Thursday, November 2, 2000 -- 3:27pm
Posted by Bar


We are experiencing unusually fine fall weather.  I am grateful.  Life
seems so much easier in many ways when the sun is shining.

The Halloween parade was fun, but also un-settling for me.  I came
home exhausted and stressed out and I could not figure it out.  I
mentioned my anxiety to Peter and he said he'd been noticing it all
afternoon and evening at the parade.  I just could not relax and I had
very little attention span for friends and neighbors who we saw in
great numbers throughout that afternoon.  When I took a moment to
think about it, I could see that my problem is that everyone is
looking at us now.  We've become well-known around these parts because
so much energy has gone into helping Forrest.  Everyone, whether we
know them or not, seems to be looking at us.  Everyone looks either
concerned or worried or joyful or sad or sorrowful or whatever.

It's wonderful and it's difficult.  I'm very concerned that we respond
to everyone and their kindness.  And at the same time, I don't want to
tell everyone every detail of our situation over and over again not
because I mind, but because I don't want Forrest to have to hear it
over and over again.  I want his life to be more than his illness.  I
want to be able to walk down the street and say very superficially (if
you know what I mean) "How are you?"  and "I'm fine".

It's hard to be famous.  Needless to say, this is not the kind of fame
that I was looking for.  Peter feels differently.  He wants to talk to
everyone all the time.  I do too, but not when Forrest is there.  As
you can probably imagine, he hears about his situation all the time.
He's doing so well that naturally everyone is really glad to see him.
They bend down to his height - something we adults don't but should do
for children all the time - to look him in the eye and see whatever
they can see.  We all want to know what the future holds for
Forrest.....and ourselves??

I am not quite sure what to do with my very
brief attention span in social situations these days.  I am sure that
my anxiety is as uncomfortable for Forrest as is any talk of his
condition in his presence.  My strategy to date has been to excuse
myself and leave Peter to do the explaining while Forrest and I go off
to look at something different.  It's not polite and it doesn't feel
good, but it's a survival technique that seems to work for me.

In a way, I guess I'm apologizing to any of you who I have been brief
with these last few months.  I know that everyone understands.
Mostly, I think I'm missing the good ol' days when noone knew who I
was.  It's also really odd because before Forrest got cancer people
unknown to us would admire our cute little boy - like we all do when
we see babies and toddlers.  Now when people admire him, I study their
faces to see if they can see anything wrong, or to see if they know
the situation and are just trying to be nice.

It's wacko, I know.  It's driving me nuts.  In many ways the hospital
is our safest haven in this regard.  All the kids are sick.  Some are
really sick.  The ones with no hair are very sick indeed.  We all just
say hello, commiserate, wish each otherwell and hope to ourselves that
we never see one another again.  We all want our private nightmares to
end and for each of us to be home safe and healthy and done with
whatever's ailing us.

I feel as though I have been crying the Bar Scott blues in the last
few e-mails.  Crying about the land that sold in front of our house,
crying about how people look at Forrest, crying about how tired I am.
Truth of the matter is that mostly I am happy despite it all.  Forrest
continues to amaze me with his good spirit.  He has had virtually no
reaction to his latest round of chemo.  We are sleeping better,
there's been no nausea (active or otherwise) and he's running around
like most other two-year-olds.  Peter and I are getting along better.
I feel strong and proud when I think about Forrest.  I feel courage
for the road ahead.  But every so often the blues do take over and I
want my old life back.  I know that someday we will see what we will
see about lessons learned from this or deal.  I look forward to those
days.  But I don't want to miss these ones by looking too far forward.

I realized one other thing and it has to do with these e-mails.  I
guess you could say that I write them from a position of anxiety in a
way.  I feel as though if I stop writing these updates, I'll loose
you.  When the news is too good, I wonder if you'll stop reading; and
when the nasty stuff happens in a few months (the surgeries etc), that
I'll be left alone.  That possibility scares me to death.  It's almost
as though you all are our cheerleaders....I think I've used that
analogy before.  Sorry!!  But it's true.  I'm like a running back
going for a 90 yard touchdown - like him, I need you to be screaming
your buns off the whole way in order to have the adrenalin I need to
make it down the field.

Thank you for the gazillionth time.  I feel as though we are
collectively righting Forrest's body and keeping him alive and well.
How can I thank you enough for that?

Enjoy these wonderful days.  Bar

More Good Stuff
Sunday, November 5, 2000 -- 9:45pm
Posted by Bar


It's hard to remember that anything unusual is happening in our lives.
This past week has been remarkably normal and except for the fact that
we have to go to Albany tomorrow for Forrest's weekly blood check,
life is as it was or would have been before he got sick.  So much
great stuff has happened, but what is the greatest is that he has felt
really good; we've all slept reasonably well and we've
all-but-forgotten what is going on underneath his skin.

On Friday, some people that Peter knows and who are readers of these
e-mails, invited us to their weekend house up here in Woodstock.  They
knew that Peter and Forrest love to 4-wheel, and since they have
several 4-wheel vehicles, they invited us to come over and play.  It
was a wonderful day!!  I had my own "car", Peter and Forrest rode
together, and our hosts distrubuted themselves on the other vehicles.
What a blast!!  We rode all over Tonche Mountain, one of the foothills
of the Catskills - up steep climbs, down steep falls, over colorful
paths looking over the Ashokan Reservoir.  It was truly a wonderful
day.  I thought that Forrest would split a gutt.  When we started out,
I figured he had about a half-an-hour of energy for such an adventure.
After our first hour-and-a-half, all he could say was, "MORE!"

At the end of the day, he, Peter, and three other little people went
off on an overland jeep ride that really capped the day for Forrest.
He slept for three hours when we got home!  What a joy!  We all felt
like we'd been on a mini-vacation.  Good stuff!  I realized as I was
driving over Tonche Mountain with my helmet on and the sun shining on
the fallen leaves, that this was a once-in-a-lifetime experience.  I
got pretty emotional as I rode along wondering what all of this
intense life does for Forrest.  He's done more in the last four months
than most of us do in a year.

We tend to procrastinate in our lives.  When death is a possibility,
procrastination is not an option.  As I got a little foggy and weepy,
my 4-wheeler went a little too far left waking me up with a start.
Nothing major.  But I had to remind myself to drive rather than think
too much.  Nothing like a cliff to remind you to pay attention to the
moment!

On Saturday, we drove to NJ to have lunch with Peter's parents (Olma
and Olpa), his sister, Mary, and her daughter, Liza.  Forrest adores
these particular people and it was worth the long drive.  I think that
visiting with family is very important.  Right now it means a lot to
Olma and Olpa, and to my parents, I think, to be in close touch with
Forrest.  It does him a world of good.

A few other cool things happened this week:  I got an anonymous gift:
It's a beautiful amethyst pendant.  The sender, a woman I think,
judging from the handwriting, wrote that she hoped that Forrest would
be enchanted by the pendant's sparkle now, and that I would look
forward to giving Forrest the amethyst for his bride on their wedding
day.  What a gift!  So full of hope and love and affection for both
Forrest and me.  These not-so-little acts of kindness do so much for
me.  It's not even the actual gift that matters.  It's the fact that
someone took the time to imagine such a thing.  Like me, she is a
parent, so her note disclosed, and she knows, like all of us parents
know, that our children embody our dreams and hopes for the future.

Peter and I have had to imagine losing some of our dreams for
Forrest....as much as we don't want to lose them, it is natural for us
to prepare for the worst and to grieve for them......  Sometimes we
feel like we are being fooled by Forrest's good response to the chemo
etc.  We keep feeling that one of these moments Forrest will suffer a
downturn and that suddenly life will be awful again.  Anyway, the
pendant, which I am wearing right now, offers so much to look forward
to.  Thank you, whoever you are!

Last night, another benefit was held for Forrest at Lower Moreland
High School outside of Philadelphia.  A friend of Peter's niece, a
young woman named Leah McQueen, created the event.  It's really
inspiring to think that a 17 year old would think to organize a
benefit for a little boy she has never met who is sick.  Just the
thought of a teenager having that kind of compassion gives me much
hope for the future.

And then this morning, Karen Pignataro ran the New York City marathon
for Forrest.  She called us when she got done.  Finished the race in
about 4.5 hours - better than her time last year.  What an amazing
thing to accomplish.  I am soooooo impressed by the motivation and
strength that that requires.  We will meet Karen next week sometime.
I can't wait.  The woman deserves a huge hug and a 3 hour massage,
don't you think.  Fabulous.

I tell you all of these wonderful things because it is amazing to us
how much great stuff continues to happen in our lives.  The
undercurrent of our life is this thing called cancer.  But e verything
on top of it is so great and so alive and so loving and supportive.
We feel lucky and grateful and full of life ourselves.I hope that you
are all well too.

Take good care, Bar

Maybe More Than You Wanted To Know
Thursday, November 9, 2000 -- 7:43pm
Posted by Bar


All is well here.  Forrest is fast asleep after a hard day of playing
at school.  Peter is at the tax assesors.....oh, I forgot to tell
you......the people who bought the land in front of us backed-out!!
Hallelujah again!!  Apparently the land is crappy (we already knew
that), and would have cost them a fortune to build on.  YAY!!
SO........Peter is looking into the possibility of our buying it.  The
question is:  how cheap will the owners sell it for?  And how much
will our taxes go up if they'll sell it to us cheap?  I'll know more
soon.....

I spent the morning getting a massage, thank you very much, and it was
great!  Nothing like a massage to rejuvenate this woman.  If you don't
get massages yourself, start today.  It will change your life.  Find
someone that you trust and that others recommend and you will be
amazed at the improvement you will feel.  I actually feel good right
now.  Fancy that!

What else?  Hmmmmm......I've been listening to my instincts more and
more through this whole ordeal.  Trying to trust my self more and more
in that way.  We have come to learn that doctors, God bless 'em, are
not, in fact, gods.  They are learning and experimenting and making
their decisions based on what we tell them...especially in the field
of oncology.  Last night I realized out-loud to Peter that I really
don't want Forrest to undergo more surgery once chemo is over.  I
figure that there are probably some serious oncologists out there in
the world that are questioning the need for surgery too.  So we made
some calls and have be gun to connect with a group of big-time
oncologists in New York City who are studying the compatablity of
western style medicine (chemo/radiation/etc) with "alternative"
methodologies including diet/nutrition, aromatherapy,
accupuncture/pressure etc etc.

I feel intuitively that our culture is on the threshold of
understanding the need to combine ancient healing arts with the modern
stuff we've gotten together over the last 100 years.  I am very
excited about the western medical establishment beginning to see the
benefits of hundreds and maybe even thousands of years of healing arts
know-how.  To that end, I have been rubbing lavendar oil on Forrest's
feet.  So many people have sent us lavendar, and so many people have
said, "oh, just rub a little on his feet ", that I have done a little
homework and decided that using a little lavendar not only makes his
feet smell better than they usually do, but that it might actually do
him some good.  It certainly won't hurt him, and in the meantime, I
feel like I'm actually doing something to improve his health.

A little control goes a long way......It occurred to me that one of
the things you might be interested in is what chemo actually is.  If
you are like I was, you have no clue.  When this all started, I think
I thought chemotherapy was some enormous machine that inflicted
torture in some way on its unlucky recipient.  In fact, chemotherapy
is a liquid, or series of liquids, affectionately called "cocktails"
that cancer patients are given in various ways.  In Forrest's case, it
is given intravenously through his Hickman catheter which is
semi-permanently installed in his chest.  The catheter delivers these
nasty but very effective liquids directly into Forrest's blood stream
and he sleeps through most of it.

Here's what his chemotherapy looks like:  Each round of chemo begins
with pre-hydration.  The doctors have learned to offset some of the
side-effects of the chemo drugs by flooding the system with fluids.
These fluids include extra salt and minerals which they know the chemo
drugs will deplete.  The fluids also protect the organs by diluting
the chemo drugs and flushing them through the system.

Next he is given an anti-nausea drug called Kytril to prepare his
stomach for the nasty stuff that follows.  Kytril works a charm and
Forrest seems to be very happy and comfortable for the duration of the
therapy.

The next step changes depending on which round of chemo he is on.
With odd numbered chemos which last 2-3 days, he is then given
Cisplatin (related to Platinum) and Vincristen (which is the one that
makes his legs wabbly).  Our comments on Forrest's legs being wabbly
caused the oncologist to cut that dose in half this last round and he
seems much better for it.

After those drugs drip into his body, which happens over 6 to 10 hours
depending on the drug, he is given Mannitol, also IV, which is a
diuretic.  They want to make sure he pees all those extra fluids and
toxicity out, and believe me, he does!

Throughout the therapy, he
continues to be hydrated, and then right before he's disconnected he
gets a quick and final shot of Cisplatin to go home with.  All of this
happens through his catheter, thank God, so he feels nothing.
Anti-nausea drugs are given before each chemo drug to continue to
protect his stomach.

On the even numbered rounds which last 3-4, much is the same, but
instead of Vincristen, he gets Adriamycin, a very ugly red drug that
is probably the scariest for me.  It looks like the color of
strawberry jello before it goes into the fridge and it somehow just
doesn't look like God had anything to do with it.  In fact, it IS a
scary drug and they monitor its use, I would say, more carefully than
the other drugs.  They have to do what they call a blood return at the
beginning and end of each Adriamycin administration to make sure it is
not leeching into his skin which would be deadly.  Doesn't that make a
mommy feel good?!  If they can't draw blood back through his catheter,
they administer another drug to thin any blood clots that might be
obstructing the catheter.  That's happened twice to Forrest.  We've
learned that if we dangle a $20 bill above his head, he'll reach for
it and blood will come spirting out of his catheter into the nurse's
syringe.  (This proves that getting a good blood return from Forrest
is positional.  It also proves Forrest's love of money, especially big
bills!!)

Finally, they give him a drug called 5-FU as sort of a chaser.  He's
given Cisplatin in the even rounds, too, which is his main chemo drug.
Some of these drugs kill cancer (and other cells), some cause cells to
discontinue their duplication.  Together, they are mighty powerful,
and as I have said before, I am thankful for them all.

And since you're getting an education in cancer treatment, I'll tell
you that at home we do very little nursing now.  Each day, Forrest and
Peter flush the catheter to keep it clean and his blood flowing.
There's a large and small (or, as Forrest says, "fwom") catheter and
each has to be flushed with saline and heparin.  Forrest reminds Peter
about flushing every after noon and actually helps push the fluids and
swab the catheter ends.  The only other thing we do is change his
dressing on the catheter site.  This is not fun, and we have to do it
every 5 days.  It requires Peter to hold Forrest down while he screams
in terror.  I then make the environment sterile by washing my hands a
million times, wearing sterile gloves and a mask, pulling off the
bandaid/patch (ouch!)  cleaning the site with alcohol and betadine and
then replacing the patch.  Everytime we finish that exercise, I say to
Forrest, "Well, sweetpea, that's one less time you have to do THAT!"

By the way, he's fine the instant we're done with the dressing
change.  Meanwhile, Peter and I are left exhausted.  The idea, though,
is to keep that site very clean so that it does not become infected.
So far, there have been no infections. So, that's more than you ever
wanted to know, perhaps, but maybe you have a better sense of what our
life is like.

It's not too bad, really.  We do what we have to do, and in the
meantime, Forrest continues to inspire us.  He's begun running which
he does with tremendous glee particularly when he's wearing his La-La
slippers...that would be La-La the yellow Teletubbie for those of you
without little children.

We're off to Albany on Sunday for round #6.
Hoping to be home by Wednesday night.  Best wishes as we all prepare
for Thanksgiving.

Bar
PS How 'bout this election stuff??  I think it's great!  It's good,
clean drama and I'd love to see the whole thing stir up so much
attention that we all see t he value of every vote cast.......We'll
see........

irritation
Monday, November 13, 2000 -- 09:29am
Posted by Bar


There's a lot to be irritated by, but I've been
particularly aggitated these last few days. Biting Peter's
head off. Short with myself and generally not the most
pleasant person to be around. Apologizing to Peter and others
does not pardon me. I need to calm down and change my
ways.

Last week I got into a frenzy that I am still struggling with
about doing whatever I can to help Forrest get better.
There's a sort of desperation that I haven't felt before.
As his initial chemo therapies come to close (at the end of
the year), we will be faced with the facts about his life. I
am feeling like I need to fix him NOW so that he will make it
through the next hurdle which is potentially surgery.
I say 'potentially' because they will only do surgery(s)
if there is a high probability that they can remove the
tumors completely. Right now, that's still iffy. My take
is this: I want those tumors to be gone before then so that
they don't even need to do surgery.In other words, I am
still focusing on a miracle that would thrill us all! And
in my more pessimistic moments, when I doubt the existence
of miracles, I want there to be another way to get those
tumors out of his body.

To that end, I have been doing some homework in what Peter
describes as a frantic style. He sees my desperation. Until
now, I have been comfortable letting things go as they will.
As we approach the critical end of chemo, I am crazed and
desperate.

I have found some alternatives. I am still doing research on
them, so I'll let you know what I find when I find something
I feel good about. With all of this insanity in me at the
moment, I am having a more difficult time with being in
Albany this time around. I am reading between the lines of
everything I here. A bit paranoid, I guess you could say. It
seems that this time everyone is basically saying "enjoy
your wonderful moments with Forrest - they will end." I
may be imagining this, I don't know.

Forrest is doing so well that when we were out for lunch
Saturday, the waittress asked if he was all better. I am
sure that everyone thinks so. Sometimes I am convinced that
he is. Maybe he is. Who knows? If he does what other patients
with his disease do, he has a very long road yet in front of
him....I hate the thought that we're doing all of this to him
(for him?) just so that he has a few extra months of life.
My heart is breaking, I think.

I think that I'll go take a hot shower and try to lift my
spirits. The truth is that what I have said over and over
again to myself and to you all, is that we just don't know.
We just don't.

We'll be done round #6 tomorrow night. A prayer or thought for
us right now would be greatly appreciated.

Much love,
Bar

Alive and Very Well
Saturday, November 18, 2000 -- 8:54pm
Posted by Bar


Hi everybody,I hope you haven't been worried about me or us.  I
haven't written all week, and my last message was a bit, slightly,
mildly blue, I know.  My spirits have lifted dramatically in the last
24 hours and I can reportthat life is very good around here again.

My panic has subsided.  And I am regaining my composure.  Forrest's
6th round of chemo was uneventful.  We shared the best room in the
hospital with Julia - another little person with hepatablastoma.  She
is exactly Forrest's age and a delightful, very, very smart little
girl.  Despite some initial anxiety I suffered when we met her and her
family, we had a great couple of days together.  I was a little
nervous at the beginning because we parents naturally wanted to share
notes and compare our experiences.  Julia is further along than
Forrest, and started off not as ill.  I also didn't want the kids to
have to talk cancer the whole time we were in the hospital.

Anyway, all of my stress subsided after a bit, and the two of them
shared toys and videos.  Both were very keen on Baby Mozart, a video
that a friend of mine had leant us.  Very sophisticated kids, let me
tell you....

We got home late Tuesday night and the days following have been a
little harder than usual.  Forrest has felt pretty awful.  But
yesterday his discomfort subsided and today we are back to life as
usual.  He and Peter have just finished doing 20 - count 'em:  20 -
full body slams on the bed.  Full body slams involve Forrest climbing
on Peter's back and being rolled over onto the bed on his back in
utter joy and laughter.  Who would have thought that they would be
doing full body slams three months ago???  This is good stuff.
Forrest is in heaven!

 last night in Woodstock was wonderful; so good for me.
Lots of people came and we just had a great time singing for them.
Callie Hershey, Erica Cohn, Jen Starr and Maiya Greaves sang withme
and they NAILED their parts.  I was quite proud and very rejuvenated
by playing music again.  Reaffirmed my commitment to that part of my
life.

We are getting ready to go away for Thanksgiving with family in
Pennsylvania.  It's our first journey away from home which is scary
but also exciting.  It will be good for the three of us to be
elsewhere for awhile.

One last thing:  We saw our healer, John Carroll, this afternoon and
much was gained.  He and Forrest were finally able to sit alone
together rather than with Mommy or Daddy right there.  It was
remarkable to see Forrest beginning to trust another person again.  He
has been made so scaredof "others" since this ordeal began.  Seeing
John brings Peter and I back into focus with what life is about.  He
told me that I need to be less heavy-hearted.  My anxiety and
desperation were definitely weighing Forrest down (and Peter and I,
too!)  making life even more difficult.  John is very good at
reminding us of what life is about and encouraging us to choose
joywhen we decide how to experience our lives.  He is right, and I am
grateful for the reminder.  I believe that we DO make choices about
how we are going to be in the world.  We can choose joy or we can
choose drama or we can choose detachment or commitment or whatever.
Forrest, too, reminds me to choose joy.  So, I am feeling better.

Have a great Thanksgiving with your families and friends.

With love,Bar

Belated Thanks Giving Greetings
Monday, November 27, 2000 -- 6:34pm
Posted by Bar


It's been a long week for me.  Lots of tears and lots of hiding my
emotions.  Holidays are difficult for us all, I think.  So many
expectations and so much energy expended to get where we are going and
getting home again.  We ate a lot.  We sat around a lot.  And I
thought about things way too much.

We spent five days with various members of Peter's family in a rural
town west of Allentown, Pennsylvania.  Forrest had a wonderful time
running around with his cousin, Isabelle, who is two weeks older than
he is.  She showed him all the great places to play and which toys to
play with and it was great to see the two of them playing together.
They both did a lot of jumping on the couch pillows which were
temporarily put on the floor for them.  I watched.  We all watched and
wondered how it could be that this highly energetic little man could
possibly be as sick as the tests say he is.  It's terribly confusing
for me and for us all.  I am so glad that he is doing so well; I am so
dreading how things could change.

I am feeling tested in a way that is driving me crazy.  I keep
thinking that if I could just figure out what the test is, then I
could figure out the answer and all would be well.  This frame of mind
must be rooted in some long-lost sense of who God is.  In my conscious
moments, when I can be rational, I actually don't believe in "tests"
as posed by God.  I don't think that is what life is about and I don't
think God would do such a thing.  Nevertheless, I am very aware of my
search for answers that are perhaps never found.

This week I felt the potential for my own madness.  Because of that
potential, I have cried and wept and even screamed when I had a moment
to myself where I knew no one would overhear or worry about me.  For
the first time, and I am not proud of this, I found myself asking God
'Why?'.  I asked him to show me some sign.  I asked him if he would
communicate with me in some way so that I could re-find my faith in
him.  It felt good to express some anger and desperation out loud.  I
keep thinking that maybe I'll have some revelation or something.  The
funny thing is that I don't think of God as someone that can
communicate with me.  Seems to me that God is bigger than some sort of
person looking down on all of us.  Collective energy from all corners
is more like how I feel about God.  Does energy communicate with
someone like me???  So why do I ask for signs??  It is all very
confusing to me.

All of this craziness and confusion inside me was brought on by one
simple number:  Forrest's AFP.  His AFP is a blood test that I've told
you about before.  It's a test that tells us how his tumor is doing.
To date, that number has been decreasing in very sizable increments.
(Zero is normal.  His started off in July at 388,000).  Anyway, this
week that number stabalized and then began going up.  It's now around
4000, up from 3200.  The fact that it is going up tells the doctors
that his chemo drugs are no longer working on his tumor.  His body -
those nasty tumor cells - have figured out how to resist his current
chemotherapy.  So, we start a new drug next week and hope that it does
the trick and that he will not experience any side effects (which for
now he has been remarkably free of).  The change in direction and the
increase in his AFP reminded Peter and me of how stressed out we are,
and how close to losing our minds we are.

Just when we were feeling like we could handle how things are, they've
changed.  It makes the next month even more uncertain and uncertainty
is what is driving us wacko.  The good news is that this next drug is
one that we can administer at home.  It's called Topotekien, or
something exotic like that.  If I go look it up, I will exhaust the
time that I have to write this e-mail, and I need to write you more
than I need to know how to spell his drugs, so.....  anyway, I like
its name.  It sounds like a Polynesian King or island and conjures up
all sorts of green sort of rain forest images for me.  The last batch
of drugs - Adriamycin, Cisplatin and 5FU - didn't do much for me.
They sound very synthetic, sort of plastic-y and not biodegradable.

We'll begin giving him the new drug next Monday.  He gets it
half-an-hour a day intravenously for five days in a row.  Then he/we
will get two days off and do it again for five more days.  So, he
won't miss any school and we won't have nights in the hospital
(YIPPEE!!), but we will have the terror of administering chemotherapy
as un-trained nurses!  I'm sure we can handle it, but it's scary, I
assure you.

Tomorrow, we go to Albany for our weekly blood test.  (I say 'we'
because I feel very much like Peter and I are part of the chemotherapy
and the cancer.  We are doing this whole thing as a family and Forrest
is never alone.  Ever.  I think that we all feel better doing all of
the medical stuff together.)

Thanksgiving day itself was simple and uneventful.  The best part, and
the part that made me cry the hardest later in the day, was a walk
that Forrest and I took together.  It was a bitterly cold day, but we
went out anyway to visit the old trains that were a close walk from my
sister-in-l aws house.  As we walked down the tracks, I held Forrest's
hand with the sun shining on our backs.  A perfect shadow of the two
of us walked in front of us and we walked in complete silence - pretty
unusual for a two-year-old and his mommy.  As I watched us walking, I
was completely overwhelmed with love for him and for the two of us
together.  I realized that all I have ever wanted was exactly what I
had in that moment.  I had my son beside me, trusting me enough to
hold my hand and walk in silence.  Before I had Forrest, I remember
watching other moms with their children walking down the street and I
could not imagine a more blissful, or more satisfying thing.  I know
that Forrest felt love too.

We had a great walk and climbed on the caboose and walked around in
the tender and generally learned all about those trains by snooping.
I carried him all the way back up the track because he'd gotten tired,
and it was a great morning for me.  When I talked to God later that
day, I told him how much I love this little boy and that I can
understand why he might want him back.  But I think that the world
will be a better place if Forrest is here.  He is a fine person.  I am
repeatedly struck by his gentleness and his compassion.  I long for
more men like him on this planet.  I wonder what the world would be
like if the general temprament of the world were gentler.....

Tonight I am finally coming around.  I cried deeply at church this
morning when I heard that a woman I know had died yesterday.  She was
diagnosed with cancer a couple of months before Forrest.  I don't
think I can handle going to her funeral this week.  I am very sorry
about that.  One of the things that is hardest to think about and
which inevitably comes up for both Peter and me is Forrest's funeral.
Every time I think along those lines I try to re-direct my thinking so
that I don't think us right into that reality.  But unfortunately, and
I think it's totally natural, I do think about it.

There are times when I feel as though his death would finally bring
all of this to a close and I could grieve and cry and scream with
anger and drop all of this control that I must have right now.
Sometimes I feel like that's when I will finally be able to breathe
again.

And then I see Forrest again and I see the life in him and the joy
that he is most clearly experiencing and I am reminded of how
beautiful life is and how much joy this entire situation has brought
to me and to all three of us.  Sounds crazy, I know, but considering
everything, I would not trade my life for anyone's.  Our life is hard,
but it is rich and deep and full of the stuff that comes when one is
up against death.  Good stuff.  We should all be so lucky as to live
life to its fullest everyday.  And I thank God for that many times a
day.  And I ask for continued strength.

Thank you all for all that you bring to our lives and for giving us
the strength and support that we so need.  Much love to each of you
and to your families for this holiday season.

Bar

P.S I wasn't able to get on-line last night, so I am sending this out
a day late...We're back from Albany now, and have had another cat scan
today at the last minute......results tomorrow, Tuesday.  b