In Memoriam:
For Jacob
An Honors Thesis (ID 499)
by
Rebecca L. Waggoner
May 5, 1990
Thesis Director
£~~
Dr. Daryl Adrian
Ball State University
Graduation Date:
May 5, 1990
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Dedicated to Jacob James Waggoner, whom I miss very much.
Many thanks to all who have helped me through this, both in
the living and the writing of it.
Thank you Dr. Adrian,
Dr. Johnson, my parents, and my husband to be.
December 15, 1987
BIRTH
One more push, one more!
OK.
Harder!
one more push after this one.
Here he is!
I feel him hit my leg.
He is on my stomach now. Oh, my Beebee.
My smile won't relax.
The doctor is still serious.
She is taking him to the warmer.
The other doctor is there and
they are pumping on him,
pushing on him, beating his feet.
Nurses run everywhere,
and I watch.
Is he OK?
They take him to another room,
and I wait.
I don't know what to do or think.
I am exhausted.
I tell everyone there is no use
in worrying right now.
I say a prayer,
but I fall asleep before Amen.
Page 2
December 28, 1987 12:37 am
am really tired, but I want to start
I
baby
is sick.
this.
My
He may die or have severe brain damage.
I am really sad.
I love him very much.
10:10 am
I named him Jacob James Waggoner.
December
15,
1987
at
11:09
pm.
I
had
chills just going to see him.
on
I never knew there
would be so much pride involved in being a
get
him
mother.
I
I get to say that I
am the mom, I love to say that he is my son.
But
all
of this is also very painful because he is very sick.
I don't know where to start.
he
had
the
umbilical
cord
When Jacob was born,
around
his
neck.
This
doesn't explain all of his problems, but it is the only
way I know how to start.
Jacob has been on a ventilator since birth.
days
ago,
A few
they did try to let him breathe on his own,
but within an hour he was having difficulty keeping his
throat
well.
soon
clear.
I was so disappointed.
The doctor told me if he doesn't start improving
and fast, we will have to discuss what we will do
if his heart starts to slow down.
and
He was doing so
off
for
24
hours
straight.
I think I
If
cried
on
tears weren't
Page 3
streaming out, I was at least crying inside.
The worst problem Jacob must face is the injury to
his
brain.
explain.
normal.
That
is
Tests show
so
ambiguous, I can't begin to
that
his
brain
does
not
look
Also his electricity patterns are abnormal and
involve seizures, and show he needs seizure medication.
Dr.
E.
can't
say
if
the
damage
permanent, or how severe it is.
is temporary or
Also, right now,
they
can't tell me how the damage will effect Jacob.
Jacob has a huge bump on his head
delivery.
We were in labor for 27 hours.
about the bump.
it.
The
Yesterday they did
results
will
be
back
results are often hard to take.
getting
from
an
the
I am worried
ultrasound
today, I bet.
It
is
long
kind
of
back an algebra test you know you failed.
on
Test
like
You
don't really want it back, but you do want it to get it
over with.
I am living at
the
Ronald
McDonald
House
now.
People don't realize what the function of the house is.
It gives a place
hospital
scared.
here
is
a
place
for
to
parents
stay.
of
I'm
sick
in
the
really nervous and
I'm not sure why, but I feel like
not going to do any good.
kids
my
staying
I feel like I will
be a burden to the doctors and nurses caring for Jacob.
Page 4
I
feel like
I
will be in the way.
I
hope
I
am wrong.
11:58 pm
I saw Jacob twice today.
I
got
to
change
diaper which makes me feel more like his mother.
his poop looked like real baby poop because
started feeding him.
grease.
really
for Jacob.
about
moving him.
I
cried.
I
So
was
All of those tubes
I hope tomorrow will be a good
I feel a lot better when it is.
ask to hold him again.
when
have
Before, his poop looked like axle
are so fragile looking.
day
Today
they
Also, a nurse let me give him a bath.
nervous
his
I haven't since the last
much
time,
emotion is packed into that
little guy that when I can hold in my arms, I fear
day that I won't be able to.
I may
the
Page 5
December 29, 1987 10:14 am
I'm going to the hospital
good
early
today
for
some
I have no reason to expect it, but as far
news.
as I can tell, no reason not to expect it either.
Last night they drew some liquid
bump.
Maybe
out
Jacob's
today they will know more about it, like
maybe there is some secret in that bump
the
of
answer to all Jacob's problems.
on
his
head,
I hope there will
be at least a little good news today.
I keep waiting for
first.
day
He
He isn't
in
his
asleep
sleep.
open.
The
like
most
babies
He
lies
still
and
As my dad drove me home that night ( Was it
less than a week ago?) I
"When will he wake up?
cried
We'll
all
the
way
saying,
Why doesn't he wake up?"
Now I can't wait till
nice.
to
doesn't wake up and cry in the night, and
he doesn't move
breathes.
eyes
I saw him, I couldn't believe that he could
always be asleep.
though.
Jacob's
he
does.
Won't
that
be
show those pessimistic doctors a miracle
yet.
Tomorrow will be a big
coming to visit.
-
day.
My
Aunt
Linda
My parents are coming, too.
I like visitors, but they make me very nervous.
is
In a way
I feel
Page 6
responsible
for their grief, their sadness.
now, I can't wait to have some company.
haven't talked in months.
But right
I feel like
I
-
Page 7
December 30, 1987
,Jacob and I want to stop this world and
We
are
tired of the way things work.
get
It is so unfair
that we have to be the ones going through this.
plans,
too,
just
like
looking forward to them.
decides
everyone
off.
else.
We had
And we were
Now I have to be the one
who
if Jacob will be restored to breathing when we
take him off the ventilator.
I have to end the life
I
am so proud of, so in love with, and so attached to.
I
also hate the idea of what life is like
for
him
now.
He wouldn't be able to function past his functions now.
I hate things this way, but I
way, too!
things
the
will I ever be a happy person again?
always have this on my
agrees,
hate
even
mind?
I
hate
it!
other
will I
Everyone
me, that not turning the respirator back
on is the fair thing.
I wish someone
would
speak
up
and say there is still one more chance, one more reason
to hope.
I don't want to give up this easily.
When Jacob was born and taken to Riley,
in
the
wanting
hospital
for
to
him,
abruptly
his
hold
off
portable
emergency
looked on.
team
of
five
and
my belly.
ventilation
from
Riley
I stuck my hand
days.
the
I
stayed
I kept remembering
doctor
lifting
him
I remembered looking into
chamber
as
all
of
the
and my family and friends
in
the
gloved
hole
and
Page 8
tried
to hold his little foot.
tried to touch his belly.
of
his chest.
There were tubes corning
I tried to touch his forehead.
to sit up and reach it.
tired.
It had an IV in it.
His face looked
I
out
It hurt
strained
and
I wanted to cry.
Lying in my hospital bed, I kept thinking
of
the
song, "My little playmate, why don't you play with me?"
Every time I did I would
keeps
running
Jacob.
through
cry.
my
Now
head.
"Abide
I
With
Me"
even sang it to
Then I gave him a bath and held him
tight.
I
have to enjoy him while I can.
My aunt did visit today, but so
father.
love.
We
aren't married.
I used to think
haven't
really
that
thought
did
Torn,
Torn and I aren't even in
was
a
big
problem.
I
about it much lately, though.
He was so charming, I thought I was in love,
he
Jake's
met another girl and got engaged.
and
then
I think he would
have impressed my aunt if she didn't know what happened
to
Jacob
and
me.
He
got his batch of bad news.
don't know what he is thinking.
could
Chills.
change
it
all,
too.
I am sorry.
I wish
I
I
I love my son very much.
Page 9
January 1, 1988 1:30am
Tonight my mom and dad
Pursuit
here.
with
me
came
in my room.
and
played
Trivial
I was so glad they were
Then my friend Laura and her parents called
They
came
to
visit
me at the Ronald McDonald house.
Then I took them to see Jacob,
Laura
and
lobby.
her
mom
me.
saw
and
my
parents
left.
Jacob, her dad waited in the
Then they left, and I rang in the new year with
my favorite man.
He fell asleep in my arms.
January 1, 1988 in the morning
Dr.
E
said
we
would
ventilator today or tomorrow.
probably
do.
I
live?
That's
will I feel
though.
guilty
what I feel now.
and I feel guilty.
for
I keep
imagine
long
meantime?
continuing
to
I know he won't live,
I don't want to
live
without
him
No other baby will be the same.
What will happen when they turn the
to?
can't
the
losing him will be like, or what life without him
will be like.
How
off
I said tomorrow.
trying to think of what I will
what
turn
will
Jake
live?
What
will
Will he die when I am there?
machine
I
off?
do in the
Do I want
him
Will I just show up one day, and they will tell me
-
Page 10
he passed away?
I don't want to go through this.
Cathy is coming to visit today.
to
I don't know
I want company,
My parents are coming, too.
act.
but I don't want
visiting
and
company,
making
I
too.
small talk.
don't
feel
like
I don't want to act
I
happy, or feel guilty for feeling happy.
feeling
how
hate
that
I get when I have been feeling happy, and then
I realize that I have something bigger to be sad about.
It
is
like enjoying yourself at a funeral.
When I do
show how I feel, I feel responsible for everyone else's
I
grief.
don't want to put anyone through this pain.
I would like to shield everyone else from it,
have to take it.
want to talk to him.
I hate to.
I think he is relieved.
If Jacob dies, I am afraid
so much trouble when he
got
formula
change his tube.
I
knew
what.
-
say
I
I hate to see Jacob suffer.
Re
something
I don't even
I feel like he is only pretending
to care about this situation.
tube.
I
They don't.
Maybe I should call Tom.
too.
too.
threw
up
will
feel
relief,
The other day he had
in
his
respirator
in his lungs, and they had to
I felt like I did when he
was
born.
was wrong, and no one would tell me
But when I asked if he would be OK, no one would
yes.
They went about their duties as though I was
Page 11
not there.
I was sitting
wide
after
open
ignore me.
But
that
the
there
birth,
wide-eyed
how
split
and they found a way to
I understand Jacob was the
is
and
important
one.
it is in this situation, too.
They
just said we would have to wait and see.
been waiting since then.
And
we
have
I have been just sitting back
and watching him suffer.
I wish he would wake up and be fine.
I
hate
tubed.
hard,
to
see
my
boy
It has to hurt.
A
miracle.
poked and prodded, stuck and
I feel like he has to work
just to breathe, to stay alive.
so
I don't want to
lose him, but I want to see him happy, too.
I want
to
be happy.
I am going to the hospital
still OK when I get there.
now.
I
hope
he
is
Page 12
January 3, 1988 11:30 am
Today is the day we are supposed to turn
ventilator.
Jacob
could
breathing indefinitely.
can't
today.
I don't know
Am I supposed to be crying?
I am not.
die
off
He could go on
how
to
behave.
I feel so terrible because
In fact, I feel the way I do every
understand
why
the
this
day.
is happening to me.
I
What
purpose is all of this pain going to serve?
My brother and his girlfriend
Tom
might
come,
too.
are
coming
It makes me nervous.
Tina haven't been here yet, so I have to
in a way.
today.
Andy and
prepare
them
Tom makes me nervous anyway.
I feel like I should be the only person there when
they do it, too.
like I am the
Everyone else has a right, but I feel
closest
person
to
Jacob.
That's
reason to be selfish, but selfish is what I am.
no
I want
my boy all to myself.
I do need support though.
myself
with
I am just afraid to
too many people around.
responsible for their pain, too.
Jacob
at
the
Greensburg
I feel like I am
I feel like I have to
comfort them before I am comforted.
were waiting for the Riley team to
be
It is like when we
come
hospital.
and
pick
up
I told everyone
there was no sense in worrying until we knew
what
was
Page 13
I had to take charge to keep my own emotions
going on.
intact.
Just saying it made me feel like it was
true.
Why do I feel like I have to calm everyone down?
I think the feeling I want to get rid of the
is
that
I
am
somehow
doing
Jacob
restoring his life if he should die.
am
doing
him.
it
a
abort
If I am honest, I
I don't want to
favor by ending his life.
is that?
favor by not
for me just as much as I am doing it for
I feel selfish in that, too.
Jacob
a
It is like the logic
their babies.
people
use
poor.
wouldn't
have a father.
best thing for the child, but for
have
when
He would be
But it is not the
the
parents.
to deal with the baby anymore.
have to deal
with
they
They say it is the best thing for
He wouldn't have a happy life.
don't
do
What kind of logic
the child.
He
most
the
uncomfortable
They
They don't
situations.
I
don't want to end Jacob's life for me.
But also, every
time
up
I
think
respirator
sick.
about
tube
and
He was so
working
so
Jacob
stopping
stressed
hard
just
spitting
out
his
into
his
breathing, I feel
after
to stay alive.
that.
He
was
I felt like we
were forcing him to stay alive when all he wanted to do
was
rest.
Everyone says he will be going to a better,
happier place.
-
Why shouldn't he go?
Page 14
Hospitals are so cold, even
there
all
the
time,
Riley.
I
can't
and even though I want to be, I
feel like I need to get out of there sometimes.
is so little I can do.
I am helpless.
I can change his diaper, I can
feet, belly, ears, and hair.
play
He is like my doll.
with
stay away.
his
hands,
I can peel off his strips
I can give him
a
He doesn't complain or cry.
He doesn't go anywhere when I
can't
There
I can hold him,
of dry skin has has from the warmer.
bath.
be
set
him
down.
But
I
No other baby could make me feel the
way my son does.
What makes me sad is when I think
could have been.
of
what
Jacob
I think of all the things little boys
do, all the things they do with their moms, and the way
everyone
feels about a healthy baby.
to hold a healthy baby.
around
them.
People
are
No one is afraid
naturally
happy
Only an elite few have been able to find
happiness with Jacob.
Being one of those few makes
me
feel important.
I am more accepting now.
on
trying to reach for what could have been.
focus on the way things are.
baby,
I
am
told.
little boy things.
mom.
I have tried to give
Jacob will
up
I try to
always
be
a
He won't wake up and do all those
I am always
I love him very much.
going
to
be
Jacob's
I hope he fools the world
Page 15
and defies all logic and wakes up a normal baby.
is
probably
impossible
the best for him.
will be happy.
though.
We can only
I dread today.
That
We can only pray for
hope
that
somehow
I hate to lose him.
he
.-
Page 16
January 6, 1988
We turned off the ventilator Sunday.
of
losing
That
him.
I
got
I knew that Jake could
to his module, I was so afraid.
I wasn't
die, and we expected him too.
When
really
afraid
I was afraid of
was just sad.
what he would have to go through to die.
We left for a while to eat.
noticed
that
his
and
his
going off.
oxygen,
When
alarm
we
returned,
for
left,
he
was
I was really afraid.
They
he
was fine.
horrible for me.
almost
turned
up
but he continued to have poor color.
then
we
low oxygen saturation was
noticed that the line was still cut.
and
we
oxygen hook up was cut in the line.
We told a nurse.
yellow
Before
his
Later we
They fixed
that,
Just that little incident was
I hated seeing him suffer, but I
so afraid of the end coming.
was
I felt relieved for Jacob
and me, even though I didn't want it to
end.
We
are
going through so much.
Jake is
haven't
yet.
needed
still
breathing
three
days
later.
I
seen him yet today, but they haven't called me
Yesterday, his new doctor, Dr.
to
start
thinking about i f
Y,
I
said
that
I
want to take him
home or put him in a nursing home facility.
afraid to even think about either option.
I
I
am
so
think, and
Page 17
I can't get past the
idea
unfair to Jacob and I.
that
either
would
be
so
We are one unit, even though he
probably doesn't know I exist.
It is like he is one of
those
after
people
who
linger
on
supports are turned off and
more
grieving.
the
their
family
breathing
goes
through
I should be happy he is alive, right?
But knowing he may die, that is what is scary.
feel so terrible.
I
Jake
to die.
I almost
feel
like
I
want
His hanging on is so hard on him and me.
I don't want to lose him, but he looks so sad.
He
doesn't
seem
to rest anymore.
stressed look on his face, and
because
of
all
the
he
mucous
is
always
rasping
in his lungs and throat.
Only when I hold him does his
even
He always has this
rigidity
relax.
Maybe
than relaxation is my imagination and pride.
he isn't even awake.
He doesn't see his
toys,
And
and
I
don't know if he can hear his music box.
It is almost noon,
hospital
yet.
I won't be
myself
he
anything for him.
OK,
and
is
haven't
satisfied
still
until
been
then I will watch him.
He just sleeps.
as
used to.
to
the
I am about
I
see
for
OK, even though I can't do
When I get there I will
hours.
he
I
I have been doing laundry.
to go crazy.
that
and
see
he
is
I could watch him for
I don't think he moves as much
I tickle his feet and he squirms, but
Page 18
he wrinkles his face now when he squirms.
little
more
when
he moves.
doesn't want to be touched.
He
rasps
a
It makes me feel like he
Maybe that is painful
for
him.
He is three weeks old
much.
today.
I
love
him
very
I am going to get ready to go so I can see him.
Page 19
January 8, 1988
I am going to be busy for a couple
friend
Donna
is
coming
All
know it is
of
a
these
bad
My
Cathy
and
maybe
people make me nervous.
situation,
understand how bad.
days.
tonight, and then my parents
Saturday morning, then Deb, and then
Regina.
of
but
they
They
could
never
My parents may understand, but not
from my perspective.
Yesterday, I
watching
TV.
She
holding her hand.
wish
I
was
watching
a
mom
and
her
son
had her arm around him, and he was
I kept thinking of Jake
could do that with him.
and
how
I
I guess I will always
feel like Jake and I missed out, that
we
were
gypped
out of being a happy mom and son.
I thought the other day that I
see
Jacob for very long.
couldn't
mine).
But
when
thought, how could I not be
alive?
He
is
to
I felt so guilty for wishing
that he would pass away and end his
selfishly
bear
misery
(and
more
I got to the hospital, I
happy
that
he
is
still
so beautiful, so quiet, so peaceful, I
couldn't help but be glad to see him.
and hold him for hours.
for an entire afternoon.
I
had
to
stay
I could just watch him breathe
Page 20
I hate the idea of putting him in a home.
selfish
for
wanting
to
go
on
I
feel
with my own life.
I
almost feel like I am cheating on him or being disloyal
if
I
try
to
go
on
without
him.
A nurse told me
yesterday that it would be best for Jacob,
put
him
in
a
home.
getting the best care.
too,
if
I
She said that there he would be
I couldn't possibly provide
as
much
care as those nurses do.
They don't sleep on the
job.
They have relief come in
at
shift.
That's
the
end
of
their
the first time anyone has said that it
would be better for Jacob.
She even said that
parents
fool themselves when they think they can provide better
care than a nursing
home.
She
might: not even know I am there.
to him.
admitted
that
Jacob
I may not be a comfort
I may be, but my constantly being there
probably
be
meaningless to him.
in my mind is made.
matter.
Maybe
I
I
don't
should
have
would
I think the decision
a
choice
in
put Jake in a home.
have to convince myself it is the best thing.
the
I just
I
have
to learn to like the idea, or at least tolerate it.
I still think Jake knows when I am there.
care
what that nurse says.
right now.
I don't
That is one of my few joys
Page 21
January 11, 1988
I finally got rid of all my guests.
of
their
company,
but
people come to visit.
Everyone
wants
questions.
All
truthfully,
answers.
last
but
get
see
the
they
Jacob,
I
always
I
they
try
disregard
I say he hasn't.
improved
all
have
to
my
answer
truthful
any
in
the
Then they say, well, at
I don't know what to
say
know he is still breathing, but that is all.
I can see that he isn't going
always
and
questions
least he is holding his own.
then.
all
too stressed out when
They ask if Jacob has
week.
enjoy
I feel like I have to entertain.
to
of
I
I
to
change
much.
They
say that kids are strange, they can change from
sick to well in a minute.
I give up.
My visitors don't really say these things,
acquaintances
do.
But
my
visitors
They say they
heard him cry.
They want to believe that a miracle may
even
prayed
his
for
eyes
their own
little tricks.
pastor
saw
have
mostly
a
move
miracle.
or
happen.
My
I
welcome
that miracle, but I can't expect it to happen.
If I expected it, it wouldn't be a miracle anyway.
I made myself feel terrible this weekend.
sarcastic
with
my
parents.
they couldn't come on Saturday.
I am so
My mom called to tell me
I really
wanted
them
-
Page 22
to
come.
I
need
them sometimes.
She says they can
come on Sunday and maybe go to church.
what
to do.
I really didn't know.
I
didn't
I got mad and said
they could come whenever they wanted to,
see
them
up.
Then, I had to go back to my room
McDonald
whenever they got here.
House.
I
had
to
face
know
and
I
would
I cried when I hung
the
at
the
Ronald
people in the
hallway saying, "Are you all right?" and then go to
room
where
my
visiting
friend
Donna
was
my
waiting.
Uncontrollably crying.
Donna didn't understand why, but she said she did.
I
some more.
My parents came on Sunday when my
friend Deb was here.
I tried to treat them kindly, but
I
cried
still
came off as a bitch.
support me the most, and I
wanted
them
They are the people who
treat
them
this
way.
I
to stay longer, but I knew they couldn't.
Why can't they come and stay a long time, play
and maybe watch TV?
a
game
I am lonely.
Maybe I have stayed up here at the Ronald McDonald
House too long.
I don't know how I am supposed to act.
Maybe after you find out that your baby isn't
by
your presence, you are just supposed to go home.
hate not being there, though.
feel
effected
helpless.
And when I am
there,
I
I
I feel like people are watching me and
wondering why I continue to hang around when
there
is
Page 23
nothing
I
can
do.
Those
people
watching me can't
understand why I have to put Jacob in a home.
I wish there were someone who could help
parents
don't
address
the
whole
pleasant whenever possible.
help?
the
who
has
focus
on
I am tired of being
No one understands when
them, and they don't believe me.
to their own little world.
will
our
to explain everything and make sure
everyone understands.
When
In
Can't they see I need
I am tired of being strong.
one
My
problem.
conversations, we avoid the sad subjects and
the
me.
something
I
tell
They adjust the story
Optimism hurts me too much.
start
to go my way?
Or Jacob's
way?
Yesterday Jacob and I had some
thought
relaxed.
Then
I
opening.
(I
know
I
it was fun.) I patted his stomach until he was
His left eye
would
tickle
would
his
slowly
feet.
squeeze his eyes shut tight.
stomach
fun.
for
a
while
open.
He would squirm and
Then
again.
partially
His
I
would
eye
pat
would
his
start
I did this for about an hour and a half.
The nurse showed me how to
do
range
and
motion
exercises, and how to suction all of that mucous out of
his nose and throat.
of
feels
It isn't hard.
good to do something.
Actually, it kind
I enjoyed being alone
Page 24
with him again last night.
page 25
January 13, 1988
Yesterday they told me they were going to
the G-tube on Thursday.
put
The G-tube is an easier method
to feed a baby who does not suck, like Jacob.
of
in
Instead
feeding him through a tube which goes down his nose
and into his stomach (which is very irritating), a tube
is
surgically
through.
it
is
placed
his
a pretty routine procedure.
won't
to feed him
be
able
doctors
are
draw
a
blank.
around,
and
trying to think of a question to
trusting.
of
any
All
I
ask
questions.
say
question
to think of any questions.
standing
think
They
They asked me if I
I think they ask that
time they ask that, I
can't
stomach
I am not worried about it really.
had any questions.
you
into
of
so
Every
these
am on the spot
them.
I
still
I guess I am pretty
Jake has been through so much, this
doesn't
seem too bad.
Last night I
Jacob.
That
started
to
learn
how
to
percuss
is a method of beating on his chest with
this little plastic hammer which breaks up the junk
his
lungs.
In jealousy, I have watched the nurses do
this to Jacob, and wished I could
scared
thought.
to
in
do
it.
It
do
it.
Now
I
am
is much more technical than I
Page 26
The nurses have been teaching me things this week.
I
guess it is because I may take Jacob home.
I know I can't, but
me want to take him home.
to.
One
It makes
I
want
nurse said I should try to keep teaching him
to suck.
She said, "One never knows, he may pick it up
someday."
I
was
amazed.
damage was irreparable.
otherwise.
I
want
I thought they told me the
No one before her had told
me
Jacob to be everything he can be,
and I thought what he is now is what he always will be.
I
feel
like everyone (the important people) is giving
up on Jacob and waiting for him to die.
almost
convinced
me,
too.
any
good, now.
leave though.
think
they
I feel like they think I
should go home and visit my boy less.
doing
I
Maybe
Maybe I am in the way.
I would be even more sad.
I'm
not
I can't
Page 27
January?, 1988
Whatever date, today is Saturday.
surgery
is
over.
I
don't
everyone else keeps saying
well.
I
he
can't believe that.
He looks yellow.
G-tube
think he looks well, but
tolerated
the
surgery
All day Thursday he had
seizures, and he is still having them.
is low.
Jacob's
His blood count
I hated watching him look so
sick, so sad.
I told a nurse I was glad no one was
that
day.
She
couldn't
understand it either.
I
don't
want
to
understand
I don't
be responsible for their sorrow.
me,
when
they
I
are
When I cry I feel like I have to be sure everyone
else is OK.
they
that.
me
I don't want to make anyone sad.
don't want them to try to comfort
sad.
visiting
I don't know if I can
comfort
them.
If
knew what I know about Jacob, they probably would
need comforting.
I keep thinking that they
aren't
close to Jacob as I am, so why don't they layoff?
that is ridiculous.
as
But
They care about Jacob and me, too.
Page 28
January 23, 1988
This week
gone
has
been
able
I
must
be
getting
to go for a week without
better.
I
writing.
I did write a few letters, so I have
something.
have
fast.
That is a sign of wellness, too.
written
I usually
can only write letters when I am happy.
Jacob makes me happy though.
what
I
used
to
wonder
I would do if he would stop breathing in my arms.
Last night I was holding him and he
breathing
slowly.
breathing short
percussing
of
I
did
mouth
(beating
kept
gagging
everything
to
mouth.
to
I
keep
suffer.
a
home.
I
don't
want
would
I don't
him
to
I want him to be happy.
he
is
not
having
The anesthesia lessened his control over his
muscles even more than what it is.
immature
I
I don't want him to die.
We found out with an EEG that
seizures.
stop
on his chest to break up the junk
him a little.
want to send him to
him
would
in his lungs) to make sure he was breathing.
shake
and
movements
that
he
He was just
couldn't
stopped making strange motions now.
stop.
making
He has
Page 29
His eyes were open so wide last night.
his
eyeballs.
He
I have tried to make his eyes move, and
just when I think he reacted to me, he does it
own.
moves
on
his
Last night I tried to see if he reacted to things
coming at him.
I would move his "Ernie" toy quickly to
his
though it were dropping.
face,
as
him flinch.
him
do
Three times.
things
other
I swear I saw
Am I going to keep on seeing
people
can't
somet.hing for me and no one else?
see?
will he do
Does he know
who
I
am?
I had such a great time with him
gave
him
a
bath,
last
night.
I
percussed him, put his clothes on,
helped move him to a crib and put moisturizer
on
him.
I felt really needed and important.
He is so beautiful.
more
and
there
proud of him.
He doesn't
need
oxygen
is no more tape on his face.
any
I am so
He has gone from not breathing at all to
no oxygen!
I wish he would get better.
even
though
they say he won't.
Everything I get in the mail,
tells
me
that
nothing
is
And I pray for
It is so frustrating.
everything
impossible
faith stopping him?
Someone else?
people
to
doesn't he do something about Jacob then?
of
that,
Is
say,
God.
Why
my
lack
Why does he let
Page 30
my boy suffer?
Why can't Jacob get better?
any baby have to suffer?
Why
does
They don't do anything wrong.
Page 31
?, 1988 Tuesday
Jan.
Tomorrow
children's
I
am
home,
to
going
visit.
I am afraid.
like it, and I want it to be a good
But
place
I have weird thoughts about it.
will forget me.
nurses
House,
Heritage
to
I don't want him
a
I want to
for
Jacob.
I am afraid Jacob
to
love
and the staff) before he loves me.
them
(the
I feel that
I can be easily substituted.
At Heritage House, I want them to tell me they can
help him in some way.
I want them to say that they can
make Jacob better instead of just waiting
die.
for
him
to
I can't stand the thought of it.
I have been really weepy lately.
nowhere
to
turn.
No
I
one to talk to.
Jacob late Saturday night.
feel
I
have
I went to see
I was crying and I couldn't
sleep.
I keep imagining him
isn't
as
bad
as
they
getting
say.
better.
Doctors
Maybe
should
reminding you somehow--little updates of doom.
it
keep
Instead
I get a mass report once in a while detailing how there
is no hope for Jacob, he will remain this way.
Nurses
should know who they are taking of.
false hopes when they talk to my baby and act
can see.
I am so afraid.
Asleep.
They build
like
he
Page 32
?eople wouldn't leave me alone when I wanted to be
alone.
Now
no one is around.
me and help me.
right
to
I need someone to hold
I can't ask for help.
burden anyone else.
It wouldn't
be
I want someone to care,
who understands, and who won't cry or get upset when
cry and talk.
I
I feel like I have to help them, or that
I am responsible for their sorrow.
Basically
I
need
superman with emotions of steel.
I can't understand the hospital.
vibes
that
I
am
weak
because
Sometimes I
If you talk too much to
worries
that
encourage you
to
feel
silly
I don't want to go home until Jacob
leaves.
you
get
there too much, others I feel guilt
because I'm not there enough.
and
Sometimes I
a
nurse,
the
are getting too attached.
talk.
supposed to talk too?
Who
in
the
hell
staff
But they
are
you
How do you not make friends with
the nurses you are around daily?
I am so proud of Jacob.
I feel so alone.
He has been wrinkling his
eyebrows.
Why?
see
or
I don't know.
hear, but I couldn't say why I think that.
isn't consistent.
sleeping hours.
-
He sometimes acts like he can
He seems to have
waking
hours
He falls asleep when I hold him.
makes me feel important.
He is beautiful.
I
sure
He
and
That
do
Page 33
love
him.
I
know
what real love is now.
other feelings come out
of
it.
happiness,
of
them.
pride,
insecurity is.
all
Fear,
All these
guilt,
I
Also
hate,
know what
I see it in Jacob
I feel it in myself.
sometimes.
My favorite nurse, Jacob's primary
days
now.
feel
is
on
better
more
often.
She
keeps
mentioning that she wants to
take
me
for
pizza
sometime.
I
nurse,
out
I wish we really could go out some night.
know it's not going to happen though.
Dangerous.
I
She
could even lose her job.
I feel almost stable here sometimes.
afraid to leave.
-
Maybe
I
am
Page 34
January?, 1988
My grandma and my great
They
are
so
feelings.
optimistic.
grandma
to
visit.
I hope I didn't hurt their
I tried to tell them,
never wake up.
came
Jacob
probably
will
But they tried and tried to convince me
otherwise.
We took a lot of pictures.
pictures
of
all
of
us
It is neat.
together.
We
Great
Grandma,
Grandma, Dad, Jacob and I are five generations
(or
sleeping,
once.
in
Jake's
case)
took
walking
on this earth all at
We decided to take the pictures when we kind
thought
about how long Jake might live.
of
We need to do
what we can with him before he dies.
Jacob has been moving his eyes
grandmas
really liked that.
every time I think, well,
there.
a
lot.
I do too.
maybe
he
I
think
I get a chill,
does
know
I
am
Page 35
February 9, 1988
Beth, Jacob's primary nurse, and
out
for
pizza tonight.
I
finally
We have talked about doing it
for a long time, but I never really believed
happen.
it
We had to kind of sneak to do it.
at
the
would
She went to
I
her car, and then I left the module and Jacob.
her
went
met
emergency room entrance, and then we were
off.
I expected it to be different though.
but I wanted to talk more about Jacob.
she couldn't say at the hospital.
Jacob,
protect
him
as
much
as
I
talk
about
She loves Jacob,
work.
do
talked,
Find out things
She did
but it was different for her.
I can tell that, but he is also
We
She
from
tries
to
rotten nurses,
heartless doctors, and pessimistic attitudes.
But
she
knows these things so well, it is overwhelming to me.
After we ate, she dropped me off at the
I went up to be with Jacob again.
I felt kind of weird
because it was like I had never left.
hospital
with
me,
embarrassed.
It
was
a
the
A nurse asked
little
shocked
and
I didn't think anyone knew about Beth and
I going out for pizza.
fun.
I had taken
and now I was back.
me, "Did you have fun?" I
hospital.
just
felt
"Yes," I told her.
strange
seeing
I did
have
Beth out of the
Page 36
hospital.
Will
it
hospital,
be
too.
be ready to go.
then
strange
seeing
Jacob
out
of
They keep saying any day now, he will
The other day he was
he had a fever.
all
ready,
Can't go with a fever.
go
while.
with
all that either.
I can wait.
Being
here
and
Then his
stitches around his G-tube were all swollen and
Can't.
the
pussy.
We will be waiting a
is
comfortable
now.
The home will be a change, and it is one I am afraid to
make.
Jacob
strength
and
in
I
have
his neck.
been
practicing
developing
Beth showed me this.
really anything which will prove anything.
something
neat
to
do with him.
It is
just
I hold him on my lap
and t:hen pull him up by his arms.
his
It isn't
Sometimes
head up with the rest of his body.
he
holds
Other times he
doesn't, and then his head dangles back, looking
It
looks
limp.
and sounds terrible, but it really is OK.
I
love it when he can do it though.
I have
lately.
been
helping
with
Jacob's
care
a
lot
I bathe him every night, change his clothes (I
bring in clothes people gave to me at his shower.), and
percuss
him.
Then I play games with him.
get to help weigh him.
Some of the
nurses
Sometimes I
will
even
Page 37
let me apply medicine to his stitches which are swollen
and angry looking.
Page 38
February 11, 1989
I
I went home today, but it was not fun.
am
not
very
comfortable
I worry about
at home now.
Jacob, and I am afraid the hospital won't
something
is
I
call
me
if
They never have needed to call,
wrong.
but I still worry.
usually
I feel guilty that I am not
there.
shouldn't be having fun when Jacob is lying still in
a hospital crib.
I ate
I actually had a good time at home.
with
my
parents
and
watched
some
dinner
TV with them.
I
decided to go back about 9 o'clock, so I would be there
about:
I drove back, feeling a little nervous.
10: 30.
I usually do,
different.
before.
I
shouldn't.
but
I
I
felt
wanted
kind
of
think
this
time
was
an urgency which I had never felt
to
drive
faster,
but
I
knew
I
I was tired when I got there, but I had to
go see Jacob immediately.
The module
thought
Jacob.
at
looked
first
normal
everything
He was on oxygen.
as
entered,
was OK.
He seemed
OK, but still, he was on oxygen.
I
to
so
I
But then I saw
be
breathing
We had worked so hard
to get past that, and we were back to it.
Page 39
A doctor came up to me and
trying
to
call
you.
I
telephone number." What?
they
need
to
own.
think
They
"Jacob
to
we
"We
have
never
call.
have
been
the
wrong
Why
did
stopped breathing a few
We were concerned about
hours ago.
continue
call?
said,
whether
he
would
He started breathing again on his
live.
H
Fear
breathing,
apnea.
rushed
over
me.
How
and then start again.
It is like what happens to
from Sudden Infant Death Syndrome.
happen again soon.
could
he
not
be
The doctor called it
babies
who
suffer
I asked if it would
He said he couldn't say
for
sure,
but it was likely.
I cried a lot leaning
nurse
didn't
really
on
bother
his
me.
crib
I
today.
kind
someone to, just so I could talk to someone.
The
of wanted
Page 40
February 14, 1988 Sunday
I am still spending all my time at
Jacob
doesn't
change.
children's home.
Probably
next
We
just
Everyday, they
week.
But
the
hospital.
to
go to the
maybe
tomorrow.
wait
say
then Jacob has a fever, or
maybe he has a little infection around his G-tube.
needs
to
have a clean bill of health to leave.
He
So we
wait.
Today all of the babies had little
Valentines
on
their cribs.
The nurses made them
babies
signed
them
with
for
the
little
mothers,
ink
Jacob's little footprints were adorable.
me
of
when
he
was
it
what he is.
said,
the
prints.
They reminded
born, and his feet were so tiny.
They still are, but he is getting a little
Inside
foot
and
pudgy
now.
"Mom, you're special." Funny, that's
-
Page 41
February 23, 1988
Jacob and I had been rocking for two hours
before
the sun began to lighten the dim private isolation room
of the children's home.
"Breathe!"
It
All I could think
seemed
about
was,
like that was all I had thought
abou1: since we arrived at the home only a week
before.
Had
Jacob's
it
only
been
one
week?
Unbelievable.
chest rose and fell inconsistently.
*
*
One week before,
riding
car.
home
from
*
a
*
*
Tuesday,
Jacob
and
I
were
Riley in the backseat of our family
My mother drove, but her eyes were mostly in
backseat,
and
the carseat.
sleeping.
not
on the road.
I thought he looked
His
chest
rattled
the
Jacob was perched in
as
though
he
were
from the mucous in his
lungs, as he seemed to labor over every breath.
Maybe
we should have let him ride in the ambulance.
But this was Jacob's first time in two and a
months
(his
life)
outside
the hospital.
He was not
within sight (if he could see) of a single
doctors
in
this
Ford Taurus Wagon.
used
to
clean
babies'
Mom's friend, Bev, followed close
nurse.
No
Only me, my mom,
and my son (and a portable suction device
those
half
a
lot
like
ears) were in the car.
behind
in
her
own
Page 42
car.
And we were rejoicing.
(secretly
We had collected his gifts
given to Jacob as going away presents by the
nurses), put him in his car seat, and we
there.
I
almost
at
the
out
of
skipped through the hospital lobby.
No more rules, no more gowns, no more
Maybe
were
Riley
hospital!
home we could take Jacob home sometime.
Maybe there would be hope.
Jacob's primary nurse, Beth, carried
the
car.
It was a rule there.
him
She
seemed
happy for me.
Jacob
like
this
breathing.
about
the
hospital
Jacob leaving, but
It was time for me to go home, too.
breathed
Indianapolis,
his airway.
upset
to
She had to ensure that
we had a car seat and that he got out of
safely.
out
fine
until
we
got
out
of
but then he began to slouch, cutting off
I propped him up
was
difficult
for
a
little.
Sitting
up
a baby who had trouble
He slouched again, and I
propped
him
up.
up
out
He began to rattle, and Mom turned around.
"He's a little blue, Beck," she cried.
In fear and frustration I picked my Jacob
of
the
carseat.
What if he died before we got there?
What if I lose him right here and now?
I suctioned him
Page 43
as
best
me.
I
could with the little thing they had given
I couldn't tell if it was really working or not.
I told my mom to drive faster, and she
friend
did.
Our
following us seemed to disappear in the traffic
behind us.
I held Jacob almost the whole way to the home.
kept
suctioning
more and more.
and
suctioning,
By the time we
but he just rattled
arrived,
Jacob
blue tinge that made me feel like swallowing.
be dying without Riley?
I
had
a
Could he
Were we killing him?
And the worst part was that he couldn't be revived
if he were dying.
it daily.
take
It was my decision, but I questioned
How could I let my baby die?
him to a home to wait to die?
wouldn't wake up?
true?
It
How
could
I
How did we know he
How could we believe the tests
were
made me feel sick to watch him labor to get
oxygen, knowing it may be the last time I would be with
him.
Somehow we got into the home.
nurses
who
I didn't know, "He needs suctioning, BAD!"
without crying.
finally
I tried to tell the
It
seemed
like
forever,
but
they
brought a machine and a tube that was the size
we used when he was a newborn.
suctioning
in
A nurse
did
his mouth, and then went on.
a
little
After she
Page 44
left the room, I tried to
throat
myself,
with
get
the
goop
little luck.
out
of
his
There was just too
much for that tiny tube.
The nurses at the home were surprised at my desire
to
help
with Jacob.
Actually, I didn't want to help.
I wanted to do it all myself.
home?
I
G-tube.
job,
home.
could suction.
Why didn't
take
him
I could feed him through the
I loved to bathe him.
too.
I
I
did
such
a
better
I would have to have him all I could at the
No one could take my Jacob away from me.
Jacob's color returned.
the new baby.
a toddler.
Everyone
wanted
to
see
They had only one other baby, and he was
Jacob was the youngest client there.
And I
took some pride in that, until I thought about why.
was there by my choice.
I couldn't take
He
care
of
him
some
of
the
and live my life as I knew it.
I think every staff member and even
clients got to hold Jacob when he was supposed to be in
twenty-four hour isolation.
attention,
back.
but
soon
At
first
I
enjoyed
the
it became a fight to get my baby
How can all of these people hold him?
Never had
he been passed around this way, except once when we had
a five generation picture taken with
close
relatives,
though.
him.
They
These were strangers.
were
The
Page 45
rest of the time at Riley, he had never had
more
than
inspection.
She
two visitors at a time.
A nurse came to give
asked
a
an
lot of questions, but really didn't listen to
my answers.
nurses'
Jacob
I
don't
notes
from
even
Riley
think
she
had
read
the
yet.
She asked questions
which were obvious, yet she didn't seem to care what
said.
Then
she
taught to avoid.
eventually
could
took
an anal temp., something I was
They hurt the poor
damage
use here," she said.
I
baby's
his muscles.
"More accurate."
butt
and
"That's all we
Yuck.
I
felt
like throwing up.
After she left, and the commotion died down, I sat
and
rocked Jacob who I thought felt tired and worn.
felt the first peace I had
feared
the
rattling
felt
all
in his chest.
day,
but
I
still
Could he die from
lack of efficient suctioning?
I cried and pretty soon
think
she
knew
a
nurse
walked
in.
I
I was crying, but did not mention it.
She did start talking to me though.
"I am so glad you chose to come
hope for him you know.
here.
It is all in the attitude.
hospital sometimes makes people pessimistic.
suck?"
There
Does
is
The
he
Page 46
"NO," I replied.
"We can teach him that-- I have seen babies really
progress."
Suck-- I couldn't believe it.
Jacob had never had
this ability, hence his G-tube.
"Has he cried?"
I got him to make a few sounds once though."
"No.
"Vocal
cords
are
Maybe
intact.
he'll
cry
someday."
I tried to imagine that.
to hear him cry?
Wouldn't it be wonderful
Music to my ears.
"Keep praying,
Becky.
Don't
God!
give
up
on
God.
He'll pull Jacob through."
Suddenly I didn't mind Heritage House so much.
I
hoped she was right.
*
*
*
But watching him breathe that morning,
have
never
breathe.
thought
about
Keep breathing.
sucking
*
*
or
you
crying.
would
Just
Page 47
By
seven
o'clock,
my
mother
was
there.
She
coached him verbally as I held him, trembling inside.
*
*
*
*
To the surprise of his nurses, I
the next morning.
was
*
back
early
I found Jake in the children's wing,
already out of isolation.
He was already dressed and bathed.
baby
shampoo.
He
reeked
of
I know he had been, but I asked anyway.
"Did he already have his bath?"
"Oh, I think the night nurse bathed him.
You
can
bathe him again though."
Like I would want him to
just
for my pleasure.
sit
through
baths
Why couldn't they just tell me?
Why couldn't I have something to do?
and
two
I hid my jealousy
said, "Can you save his bath sometime for me?" She
said, "Oh, sure." But I never got to see where to
draw
the water.
He seemed to
be
doing
well
that
day.
Pretty
normal behavior, although he still rattled quite a bit.
A little movement.
We rocked all day.
By the
end
of
the day, they were even starting to leave the rocker by
Jacob's bedside for me.
-
*
*
I liked that.
*
*
*
Page 48
I looked into
Jacob stopped breathing.
and he didn't move.
arms.
my
arms,
For minutes, he lie lifeless in my
I tried to speak, but all that escaped
my
lips
was a whimper.
The nurse came over to me, and checked
rate.
Slow
gasped.
but
present.
Suddenly,
his
he
heart
gasped.
I
again.
I
The nurse gasped.
I laughed in delight.
He
was
alive
could breathe more easily now, as though his lungs were
mine.
We had fooled the world.
I talked to Jacob, but I
said.
He would live!
don't
remember
Some sort of encouragement, I think.
what
I
I kept him
rocking, believing it was keeping him alive.
*
*
*
*
*
On Jacob's third day there, I was a little shocked
when
I
saw him.
He looked yellow to me.
him, his arms and legs fell lifeless over
arm.
Usually he felt rigid.
to loosen his muscles.
When I held
my
cradling
We did exercises with him
But that day he
was
limp
and
lifeless, like a rag doll.
We walked around the home, something
do
at
Riley.
We
could
we
couldn't
go anywhere we wanted.
favorite place was the front lobby because
it
was
Our
so
Page 49
quiel:.
Bibles were there.
I read to him sometimes.
That day we visited the
teacher
use.
showed
us
school
of
his
*
*
one
could
*
Jacob had apnea attacks more and
began
temporary.
stimuli
We never got to go back though.
*
I
to
ignore
more
*
frequently
them, believing they were
It began to become difficult to tell
ended,
The
I looked forward to returning anytime, as
she suggested.
then.
too.
the stimuli toys Jacob and I could
She said my manipulation
benefit him.
room,
and
the
where
next began, his breathing was so
shaLLow.
*
*
*
*
On Friday I made it there early,
nine
o'clock.
register.
I
was
My life was
supposed
to
I
to
think
go
continue,
before
to school to
not
Jacob began his stay at Heritage House.
*
stop,
when
It was time to
move on, as much as I hated to leave him.
Everything was
really
needed
kickEld in.
to
planned
to
be
quick
get to school by noon.
today.
I
But reality
When a nurse saw me come in the front
door
with my mother, she immediately approached me and began
to escort me to Jacob.
"Jacob is having
breathing,"
as
she
said
though
she
some
trouble
were trying to
Page 50
lessen the blow.
Jacob wasn't in his
fronl:
of
the
nurses'
oxygen mask on it.
enouqh
room.
He
station,
was
and
directly
in
his face had an
They didn't have a nose piece small
for Jacob's face.
Again he appeared blue.
he been suctioned?
His chest rose
and
seemed to be making deep sighs over
visibly.
He
and over again.
and
fell
Had
abruptly
He rattled from deep in his chest.
face must have shown fear and worry.
My
The nurses seemed
to spring into action.
"I've called the RN.
She's on her
way.
He
has
learned
was
the
just become this way, this morning."
We waited for
thennometer
doctor.
the
maniac.
RN,
who
I
When she saw Jake, she called the
The doctor ordered a chest X-ray.
They called
the ambulance, and we waited.
*
*
*
My mom held Jacob for a while.
to take his vitals.
but
she
She
was
*
The nurse came
Heartbeat present.
it would disappear.
temp . ,
*
supposed
in
I dreaded when
to
take
his
was nice and gave Jacob's poor butt a
break.
-
*
*
*
*
*
Page 51
The ambulance drivers came.
the
stretcher,
all
neat
They loaded Jacob
on
and bundled like a papoose.
Mom and I rode in the back with Jacob and a
paramedic.
He held Jake still.
When he heard the rattling, he suggested Jacob
suctioned.
Jacob
I about screamed, "All right!" He suctioned
with
improve,
be
a
and
portable
I
felt
talked to us a lot.
machine.
a
Jacob
lot better.
The really seemed
seemed
to
Both of the men
sympathetic
to
the situation and concerned.
The test results came back.
Jacob had
pneumonia.
He would need oxygen, to keep him comfortable.
I hated leaving him that day.
and
alone.
I felt so
helpless
He lie on the crib, sighing repeatedly.
worried the whole time
and
I
couldn't
return
I
until
Saturday morning.
*
*
People began to pass
*
by
the
*
open
*
door
to
our
private room.
The home was beginning to come
the
passer-bys
alive.
Sometimes
would glance in at Jacob, Mom, and me.
It seemed that everyone knew.
A few nurses
popped
to say hello (but they said mostly good-byes) .
in
Page 52
The
days
that
followed
*
*
*
*
*
are
fuzzy.
don't
I
remember what happened from one day to the next.
One day I got a phone call fairly early that
they were afraid Jacob wouldn't make it.
I was there.
go
1:0
I went as fast as I
get there.
Dad came, too.
said
Would I come?
could
possibly
The nurse suggested
"Riley." The doctor said he needed that kind of care.
We
I was kind of excited.
Riley.
Our
intense
care.
old
nurses
The
who
place
I
were
knew
had
going
us.
back
to
Our special
already
won
some
Jacob
into
independence with Jacob.
The same two ambulance drivers loaded
the
ambulance.
Dad
followed
in
his
watching Jacob breathe, up and down,
car.
but
We were
suddenly
he
stopped.
The ambulance drivers
changed
their
reacted
quickly,
would revive him.
he couldn't be revived.
decided that.
they
destination to the county hospital.
were brought in, and for a few moments,
they
as
I
was
We
afraid
I knew if he was going to die,
We had decided
that.
But what if they didn't know that?
if they just started to save his
life
without
I
had
What
asking
Page 53
me?
Would
I
try to stop him?
Could I go against my
decision, so I could keep my baby for a while longer?
He started breathing on his own,
minutes.
The
ER
doctors
Riley said to talk
think.
doctor
in
ER
only
a
few
called Riley, our previous
destination.
The
in
to
me
about
it,
I
told me exactly what they
always told me at Riley.
"Taking Jacob to Riley would probably prolong
life.
They would isolate the virus, they could provide
excellent care, and he could improve.
arrived.
If he didn't die
before
he
thing.
But the point is, if Jacob goes to Riley,
he
returns,
Heritage House could do the same
this could all happen again.
time.
when
He could be
in and out of the hospital forever, only getting
each
his
worse
They suggest we do our best, and remember
what is best for Jacob."
How could this
returned
get
worse?
to Heritage House.
He
was
dying.
We
Dad drove, while I cried,
all the way home.
The next day, Mom, Dad, and I came to visit Jacob.
I
think
it
was Sunday or Monday.
limp and tired looking.
They
held him.
Mom and Dad
Jacob was still so
noticed
it
too.
He didn't feel the same, but he looked
a lit:tle better, didn't he?
Page 54
We
went
out
for
dinner
and
overate
to
make
ourselves feel better.
*
* *
*
*
I got the call about five-thirty in
I
told
Mom
and
Dad,
drivE~,
is
a
but I don't remember much of it.
skep1:ical.
Monday.
It
He seemed better, only
the
twenty
minute
I know I felt
night
before,
I hoped it was a false alarm.
I rocked Jacob and talked to him.
was
morning.
I'm not sure what
and I left.
transpired on the way there.
the
His
breathing
so shallow, I didn't even notice he quit breathing
the last time.
Page 55
Fade
His heart
it beats
slowly
but sure.
The nurse
listens,
but then
it's gone.
She says
I can't
find his
heart:beat.
And then
my heart
screaming, crying, exploding,
skips
every
beat
in pain.
-
Page 56
*
*
*
*
It wasn't long before Dad was there.
Jake's
holding
cold
body
I was
still
Dad held
when he arrived.
We all talked to him, and rocked
him, too.
*
him,
even
change
his
though we knew he was dead.
A nurse asked
When
clothes.
I
if
he
like
would
to
died, all of his body's secretions
escaped his body, so he had a dirty diaper.
would
like
to,
so
I
said
I
we picked out his best new outfit
(one his primary nurse had given him with a duck on it)
and
I
put
it
on
him.
surprised how fast it
His
got
body
cold.
I
was cold.
could
I was
feel
the
coldness go through his body, it wasn't a slow process.
After we
changing
changed
table
in
Jacob,
the
we
room.
left
him
on
this
He lay there while we
waited for the pastor and the funeral director to come.
When the pastor came, he
picked
out to read.
them.
some
Bible
them,
talked
While he
the funeral director came.
in our circle, and we all
we
verses
The twenty-third Psalm was one of
It kind of washed a calm over me.
reading
Then
had
about
held
funeral
hands
for
He sat down
a
arrangements.
quietly rested on the changing table.
was
prayer.
Jacob
Page 57
It was time to leave.
and
the
Everyone
was
up,
funeral director was going towards Jacob.
picked him up, covering his head with
was
getting
dead,
and
a
blanket.
He
He
I didn't cover his face when I changed
him.
It
We all walked out together.
outside,
so few words were exchanged.
felt we weren't supposed to talk.
As
1:he
white
carrying him.
didn't
very
windy
Or maybe we all
What would
we
say?
wind whipped my hair around my face, I watched
him carry my Jacob to his car.
lacy
was
blanket.
I
felt
Why wasn't I
even know Jake.
Jacob was swaddled in a
confused
carrying
when
him?
he was
This
man
He had no idea what he was all
about, and now he was carrying him.
Away from
me.
I
guess all of those thoughts were irrational, but I felt
them..
I wanted him to be in my arms again.
him back.
I
wanted
Page 58
April 1988
"All the Cool Poets Are Dead."
Keats, Shelley, Wordsworth, Donne,
But the coolest was my son
Because he could sum up the universe
With the wrinkle of an eyebrow.
He never said a word.
He didn't have to.
He expressed love, beauty, and sorrow
Eloquently.
I could read all of the world's poetry
and I'd find no better soliloquy
than a quiet sigh
of that little guy.
Why?
On December 15, 1987, my son, Jacob, was born.
was
a beautiful boy of seven pounds and ten ounces.
loved him more than I
Unfortunately,
when
ever
he
was
imagined
love
could
He
I
be.
delivered, the umbilical
cord was wrapped tightly around his neck causing severe
brain
damage.
At two months and ten days on February
23, J.988, Jacob died of pneumonia.
should
-
be
I used to
think
I
thankful that he lived at all, for he lived
two months and ten days longer than the doctors thought
Page 59
he
would.
But now I find all of this very unfair, and
I miss his breath on my face and his heartbeat
my chest.
against
To hold him again would be my wish, but that
would only leave me wanting more.
Page 60
April 1990
Epilogue
It has been over two years since Jacob died.
further
removed
from
I
the emotions, but I still think
abou1: him.
I wonder about what could have been, and
miss
Now I know it all was for the best.
him.
am
only respect for his caregivers at Riley
and
I
I have
Heritage
House.
Some of the experiences I had with Jacob
has
tried
more.
his
to
forget.
But
bubbles
a
on
my
lot.
chest.
His
him,
was
always
Gran1:.
He
had
warm,
and
grabbing
my
a tiny dimple on his chin, like Cary
He was beautiful.
him and be his mother.
believed them.
feeling
He could speak to me by just
wrinkling his forehead and hiccupping, or
pinkie.
and
He used to drool and blow
body
comfortable against mine.
mind
I would like to remember
I'd like to remember holding
breath
my
I felt important to be
with
Everyone said he knew me, and I