I tried to take a walk...

I tried to take a walk last nite,
but could only get a block away
before having to come back home.

I kept wanting to duck under trees -
the heavens seemed too big
for me to be out loose in the open.

I can remember when walking
under the stars was supposed to be romantic;
when stars were magical,
and someone hung the moon,
and the darkness was a cover for secrets,
and touches.

But now, the night is too large,
I feel exposed and vulnerable -
is my baby "up there",
is God frowning down at me?

The stars blink with my doubts,
the moon is too bright on my pain,
as I duck for cover.

Where are the answers?

Now is the time -
when my insides are spread out
all over God's wide open space -
now,

Now, is the time to answer me.
.

Because my faith...

Because my faith is so shaky
and I'm not getting any help here,
I think I shall re-evaluate my belief.

After washing cloth diapers
for two babies in the bathtub
for a week, (because the washer just died) ...
and having no money
for the laundromat next door,
I have decided to drop God
and worship the person ...
who invented Pampers.
.

The first man

The First Man
After Divorce
and Jacob's Death

If and when, my dear friend,
I hope you will have the kind-sight
to remove that wool-rest
mattress cover from your bed...
How can I explain that
not only am I afraid of you,
but I am also afraid of sheepskin things.

My baby died on one of those things,
and the feeling is unspeakable.
Please, please try to know
without my spilling my hurt all over.
Otherwise, you just might find out
what frigid really is.
.

Note to Self

A Note to Myself

1. Call the March of Dimes.

2. Tell them the commercial they keep showing late at nite makes me cry.

3. Tell them it makes me cry, because the baby they keep showing to promote their campaign is dead.

4. Tell them that I am the mother of that dead baby.

5. Just tell them

Make me

I don't WANT
to do anything
to make me better.










I like it down here.
The fall will be
so much shorter
for the next time.
.

Paradox

Paradox

What a paradox I find myself in,
so angry with God,
rebelling at His presence in my life,
refusing to cooperate with His will,
refusing even to acknowledge it.

I prefer to make sinful bargains, instead:
"Take me, too, or give me my baby back".
Then I'll cooperate, start listening,
become the gracious Christian again.

I resent human implications
that the devil is winning
the battle I'm fighting,
that he's the cause of my anger
and my doubts. I have a mind of my own.
I am not a pawn pushed
back and forth on a chessboard
between the Lord and the devil.
They should settle their differences
between themselves.

I resent good vs. evil
continually preached at me,
that my negativity, denial,
anger is the work of the devil -
it is the work of grief,
and you are adding guilt
to my grief because
this isn't a religious matter anymore.

If it was, I would be lost.
But I am lost anyway,
because what I was just beginning to believe
doesn't feel true anymore.
.

Sick to death

Lord, I am sick to death of being a Christian.
I must not have the faith anymore... the peace and acceptance.
I'm tired of being nice, pretending to accept and understand.
I must be praying wrong, or else you don't care about me either.

What can I do to get it back, when I feel such nothingness?
The sin of guilt eats at me; I've lost my faith.
But I've lost my baby too, and I cannot find him.
I want to add brutality to my list of sins, strangling those with pious platitudes.
You should pray, they say - all thing work together for the good.
I want to throw up at their feet.

Too Much Thinking

This is Too Much Thinking

How can I be the mother of a dead child?

If the child is dead, are you still a mother?

I still find it unbelievable that I have a dead child.

Do you get the feeling that I'm trying to drum it into my head?

How can a person "have" a dead child?

I mean... I obviously don't "have" him, he's not here...
.

Not afraid of the hole...

The little girl
is not afraid of
the big, black pit -
But she is afraid
of the python
who protects
the black hole.
He is the
guardian of death
and he will let her
in only when
he is hungry enough.
She would welcome
the act of being
eaten up alive -
rather than
just the sensation.
.

A Season for a Reason

Everyone tells me there's a reason,
a season for everything.

So far, all I can recognize
is the anger, bitterness,
love, hurt, pain, hating.

oh yea... and I cry better, easier.

I wish I was special...

I wish I was special,
but I'm not.
I feel as if
I'm the only one
in the world
who has felt
such pain,
but I'm not.

And that
makes me angry.
Because I want there
to be some reason for this.
.

I have to write...

I have to write -

because all my head
can hold is Jacob,
and his dead
is spilling over
into my life.

Leaving the house...

I hated to leave the house.
I never knew
what was going to happen
when I left the house.
Would we be sent back
into the hospital,
would my furniture be home
when I got home,
would Jacob throw up
in the car seat
and choke to death
before I could stop the car?
.

Would he explode with urine
if I didn't cath him on time,
cause we were too long
at the physical therapists?
How many bags
did I really need
to go to the store?
Jacob's diaper bag,
Jeremy's diaper bag,
a cathing bag,
AND my purse?
With a newborn
AND a toddler?
Yea right.

Would the doctors
say something else
for me to worry about?
Should I keep Jeremy with me
or with a friend?

The heat in the car made
Jacob's skin look waxy
and often I'd have to poke him
to see if he was still breathing.

I hated leaving the house.
.

The helping vehicles...

Jerks

It's always the same,
first the fire engine,
then the yellow paramedic truck,
and then the ambulance drives by.

Once, they all came to my house
and took my baby away. Did I mention that?

Anyway.

Not too long after they took Jacob away,
the fire engine, the yellow paramedic's truck,
and the ambulance came again.

A doctor was returning my call
as they parked themselves
in my driveway once again.
I could hardly think for the shaking,
as I tried desperately
to remember where Jeremy was.

I wanted to grab him
and run out the back door,
positive they were after him too.

It was a mistake,
they were here for the neighbor next door.
Wrong address, buddies -
you've already got your quota from this house.
.

Dream 1984

July 1984

Dream

Jacob was in infant seat, 3 months old, when I turned to him to pick him up. But as I reached for him, he put down his bottle, waved to me and stood up and walked. I cried as I listened to all the people who saw him - it was a miracle! The doctors were wrong! Then Jacob started talking too. He wasn't a cripple after all, nor did he have possible brain damage. I just sat and treasured the sight of my healthy baby. I called the doctor to tell him come see. As soon as I hung up, I regretted the call, because I knew he'd tell me it was some fluke.

Sure enough, the doctor walked in, taller than normal, and said Jacob was experiencing a "nerve shock" and it would wear off by morning. I got it into my head that as long as I stayed awake, Jacob would continue to walk and talk and be normal. But I fell asleep and when I woke, Jacob was back in his infant seat, paralyzed all over again. 
.

No more faith

It's Gone

Talking to God, or praying, isn't enough to dull the pain. A broken heart is broken.

I'm afraid I've come to the end of my faith. Which isn't the same as saying there is no God. There is. And He knows how I have struggled to "just go on faith". But I feel betrayed. I can no longer pray because the security is gone. I know that just because one is a Christian, it doesn't mean bad things will never happen to you. But after they happen, isn't one supposed to have the grace to accept, understand, pray when the going gets rough? Maybe my faith was never there in the first place - defrauded myself with religion. All I know is that He WAS there, and now I've lost the faith and the desire to keep Him there.

If there's a hell, I just hope I'm too dead to notice.
.

Funny ha ha

...Now THERES a joke!!!!

IF there's a hell, I just hope I'm too dead to notice?????
There IS a hell, and I know it intimately, for I am in it.
And unfortunately, I'm not dead enough,
because I know every inch of hell
all too well cause I'm wide awake.

Tommy Lee

Tommy Lee - A baby

Tommy Lee was a special baby to me
cause he made me remember,
and therefore, he was a hard baby for me.
I picked him up, grabbed his bottle
and adjusted him in my arms.
Then I looked at him, and knew he was my kind of baby.
The nurses hadn't yet clued me in -
they tried to warn me, concerned
if there was a Spina Bifida baby
on the Pediatric floor. 
He were my first surprise and they were right.

I would have been okay
if a familiar lady doctor hadn't come in just then
and remembered me and my son.

I would have been just fine
if a familiar therapist hadn't come in and cried,
missing my baby too, at seeing me there with Tommy Lee.
She said it took her breath away when she walked in.

I would have been just perfect
if a familiar respiratory therapist hadn't come in,
and asked why I looked so familiar.
"I used to have a baby up here, and you used to thump him", I said.
"Oh" she says, "how is he?". "He's dead", I say.
"OH!" she says, she's so sorry, she didn't know.
"Thank you" I say. Dead silence. It was too much. I fled.

I would not have cried so much
if I hadn't run into a favorite nurse
who remembered the month of May
wasn't the easiest time of year for me.
Everyone's kindness at remembering
made it hurt all the more.
I wanted to appear strong,
so they wouldn't chase me off the pediatric floor,
thinking this volunteering was too much for me.
But Tommy Lee got to me.

I would have been okay
if he hadn't weighed the same as Jacob's birth weight;
reminding me that I was unable to remember his newborn days.
I would have been just fine
if Tommy Lee's eyes hadn't been blue
or if he hadn't just started to smile.

I would have been just perfect
if I hadn't met the mother
and recognized the phony wall of strength
that made her believe she didn't need or want support.

She was single, fighting with the father,
and had a 2-year old at home,
and she was on welfare. Talk about de-ja-vue.

I dropped out for awhile.
No more babies for me.
I'll just take the summer off
but then I started to miss the babies, so I went back.

I would be just perfect right now
if this wasn't the month of August,
and if I hadn't just learned
that Tommy Lee's mother
had just given him up for adoption.

I would have been the perfect mom for him....
.

Black Cloud

A Little Black Cloud

There is something wrong.
I feel as if I am lurking around corners,
slinking along the walls,
trying to hide from something.

I am running,
but from what - I don't know.
I close my eyes so as not to see,
but I have to open them again,
cause it's there in the dark, too.

Could it be...? Nah...
Sure the anniversary date
of the death of my child
couldn't be bothering me THAT much...
No way. I'm done with grief.

The image I have of myself is slipping.
.

August 1984

August 1984

It's almost been a year, Jacob. And I really think it's about time you got your little butt back home. You're much too young to be away from your mother this long. I only put up with it this long because they told me you were dead. But if you were dead, I'd know it by now. So get on home before I REALLY get mad.

Anniversary

Anniversary Day of Death

I have a cat, a very nice cat normally,
but every once in awhile - she attacks.
If you're foolish enough to get too close,
her royal little highness during one of her moods -
you'll pay.

There's nothing to be done,
but keep your distance, or lose your skin.
Simple as that.

I am like her on this day.
I want to unsheathe my claws,
and hiss my rage.
Tell me "good morning" and I'll say "go to hell".
Simple as that.

Don't come near me,
I am like glass, eggshells,
and you are the one walking on thin ice
if you tell me "good morning".

I don't want to look back and remember,
that's all I've been doing for the last year.
But not on this day.
Today, I want to hate with all my heart
the pain of the past and the pain of the future without my son.

On this day, I want somebody else to pay.
.

Shadow of Death

Yea, though I walk threw the valley of the shadow of death - Psalm 23

I have walked, stumbled, tripped,
and sometimes I have run through that valley.
And for the most part, I did it alone, as it must be.
No one can do your walking for you.

Every once in awhile,
someone walked with me,
or gave me a helping hand out of the dirt
and cleared my eyes of tears and dust.
Sometimes I stopped, refusing to move -
afraid, but someone gave a nudge,
a push, or a shove to get me going again.
Sometimes I had to stand my ground for my own sake.

Many times, I went too fast
and had to retrace my steps to pick up some pieces.
But I made it to the other side.
I can look behind me at that valley - that knife slash in my soul.
There's green grass growing back there now.
And I am confident that someday... there might even be flowers.
.

Year of grief...

Oh gooooood....

my year of grief is almost over.
Now maybe I will be taken seriously.

.... maybe I don't want that.

Maybe so...

Today,someone told me
that they thought
I was finally getting better.
?

Just because
I've been gone for the last year?
Gone, but not really.
I know, I know,
I stood before you in my flesh
but my presence was vacant.

Vacant?

Just because I looked
without seeing,
or listened without hearing?
Or maybe cause I forgot
what I was saying most of the time,
or wondered why I was
bothering with speech at all?

Come on.
What makes you think anything was wrong with me?????
.

Amazing

August 1984

My year of grief is almost up.
Am I healing?
I alternate between
total acceptance and total unbelief,
nonacceptance, rebellion.

Except I think
my "total acceptance"
is really passivity, hopelessness,
giving up.
It will never change -
I am forced to believe it.

So I guess,
after a year of not having him,
and the basic belief
that he wasn't kidnapped
because there doesn't seem to be any
"Jacob Is Missing" posters,
and knowing he was too young to be a runaway...

I guess I'm into... Forced Acceptance.
.

I am still walking...

AMAZING.

I am still walking around.
Walking, talking, cooking, driving and sometimes I even smile.
Even tho I am the mother of a dead child.
ABSOLUTELY AMAZING.

I am beginning to live again.
Thinking, planning, loving, hoping and sometimes I even laugh.

I only have one question...
how can I be the mother of a dead child????
.

A Week Later

A Week Later

There.
I am all done
with wanting
to kick and scream,
stomp and stamp.

It's still not fair,
but I guess
I can be a grown-up
about it now.

Simmering

Simmering

The birth of Jacob is very painful to me.
It's taken this long to approach it -
even so, my mind is trying to sidestep it,
hoping I won't recognize it as my own,
or it won't recognize me.

It's very painful -
it was the beginning of a new life and yet,
it seemed as if it were the end of the world.

How wrong I was,
but to remember
is only to open up a deep wound
that threatens never to heal -
and an anger that constantly simmers.
.

September 1984

September 1984

Jacob changed me and sometimes I can no longer think of who I was before I had him. But then again, I don't want the fact that I had a handicapped child, and that child is now dead to be the single most defining feature of who I am.

And yet, there are times when nothing else matters but the fact that I am the mother of a handicapped child and that child is now dead. I am touched in a way that is both bitter and sweet. Sweet because nothing can be taken for granted anymore. Bitter because of the loss of perfection for my baby, and despite being his mother, I could not fix him. Pain for his death, which was not a blessing - we didn't even get a chance. Would we have been one of those families who spoke of our "special" child as a blessing? I would like to think he would have been one of the "sunny" ones.

And then I do an about-face, and I rage against the day my baby came out handicapped. How can we parents cover up the pain by using such euphemisms as "special" or "blessing", when it is so damned unfair for our children to suffer? How many of us walk about with a serene attitude, acting blessed to discourage pity, while inside, we are really shaking our fist?

September 1984

September 1984

Doctor,

I want Jacob back - please, please get him back for me. Surely, YOU can do something. I mean, there's got to be some reason I put you way up on that pedestal. It's time to earn your keep up there.

Isn't this ridiculous? I can go day after day, being a near normal person, accepting things as they are, adjusting to life without my baby (sometimes by just ignoring it, I can get by) but I am learning that life does go on, sometimes happily.

But tonite. Crashing for no reason. None that I am conscious of anyways. And I usually know what my unconscious is running from. No... tonite, I am back to disbelief, it's all a nightmare, and I'll be waking up any minute now.

Damn it, why CAN'T you get him back for me? I know that's what you'll say. A perfectly logical thing to say, I admit. But I don't believe it. Way back in the middle of my brain, I know it's all just a cruel trick. A way to teach me something, but I must be flunking, cause I don't have him back for learning whatever I'm spose to learn.

And you know what? I really don't know that I can't get him back. That is pretty damn spooky. To think that my baby is somewhere out there and I, as his mother, can't find him.

So... you are it. Jacob is out there somewhere, needing me as much as I need him, and I need your help. Or something. If you can't do it, who do I go to that's higher up than you?
.

November 1984

November 1984

I thought babies came with a life-time guarantee.
They certainly SHOULD, for their parent's sake.

December 1984

December 1984
Dream

My cat is lost and my sister and I are looking for her in an old, rickety barn. It's creepy and spooky, with pigeon poop and little creatures scurrying at our footsteps. Then I saw her, my cat, across the way and noticed she had lost her tail. "There she is, but she's lost her tail - she'll never be the same!" She came to us, and I picked her up. I asked her what had happened to her tail, but she was too traumatized to explain.

On the way out of the bar, we came upon a child's swimming pool, and Kitty's tail was floating on top of the water. I picked it up to see how it had come off, but underneath the tail, there was a black cat sitting there - under the water. His eyes were open, but I knew he was dead. I picked him up out of the water, knowing that if I held him long enough, he would awaken. My warm, alive body would bring him back to life. And sure enough, it did. His cold, stiff body became warm again.
.

Deep Dark Secret

Deep Dark Secret

Jeremy is a middle child,
although he won't have middle child problems.

His mother has them instead.

A day of shopping...

It Didn't Hurt

A day of shopping with a friend
Peaceful and happy,
the babies don't upset me.
We walk through sleepwear
and my eye catches a sign;
"Nursing Nightgown Sale".
I used to own two.
I put my hand to my breasts,
surprised at the sudden, sharp pain.
My friend, having lost a baby too,
noticed and understood.
I walked away with a little smile;
I still remember.
Healing is beginning -
rather than being upset or dismayed,
worrying if I was going crazy -
it was a nice feeling to have - ... to remember...
.

December 1984

December 1984

Shopping downtown by myself.
Parked the car - stepped out.
Christmas music
blaring in the streets.

Oh God.
I ducked back into the car.
Christmas.
Another Christmas.
Another stocking battle,
another large dose of emptiness.

It's amazing how the mind protects itself...-
... I was downtown to do some Christmas shopping.

I love you, Jeremy

Jeremy got me this cause he thought I should have somebody to sleep with too.  The red heart goes inside the bear and vibrates like a real heartbeat.  It was a wonderful gift and incredibly comforting.  He did more taking care of me than I did of him...

I love you, Jeremy,
my first-born son.

There was a time
when I would have said
"more than life itself",
but I have been close enough
to death to want it for myself
as an escape from pain -
and even you weren't enough to keep me going...
although you were also the reason I stayed
in the world.
But sometimes I definitely resented
having to stay...

I pushed you away emotionally,
cut you off from me with too many long baths,
too many naps, and hiding behind my books or my writing.

How many times have I said
"I need to take a nap" or " you can do it yourself"???
It didn't take too long
before you didn't even try to reach me -
you got used to "the look".

Not too many days ago,
I woke up before you did.
After conquering the fear enough
to check if you were still breathing,
I got dressed. I made breakfast. A real breakfast.
You came out, eyes and mouth wide open...
"Mommy, are you really staying up?".

Oh my little son, has it been that bad?

All that day,
I marveled at your growth and development.
Where did the time go and where had I been?
As I watched you play,
I wondered what it was
that made me so afraid of loving you.
I suppose I was trying to protect myself
from hurting again in case I lost you too.
But now I know I can't be afraid of losing you
and to stop wasting this time we do have together.
It broke my heart that day to see your gratitude
at any little attention from me -
"Are you happy now, Mommy?".

Honey, I'm so sorry.
I saw your look of fear on another day,
when I went back to bed,
but I managed to pull myself out of it,
because you had become important to me again.

We're having a hard time
re-establishing a mother-child relationship,
you're so used to being a little man.
All this attention and discipline
is wearing both of us out, but we'll find our way eventually.

You're learning to believe in me again -
I think it will get better from now on,
no more months away from life and you.





















I love you, Jeremy, I really, really do.


September 2012 Extra Note - And I'm so so sorry, SonOne.  I love you more than I can say.

.

Execution

Execution

The hour is late -
can't sleep.
So what do I do?

I put the execution squad
on the stereo,
and curl up in the dark.
Neil Diamond John Denver Judy Collins Willie Nelson Roger Whittaker, B.J. Thomas

They all hold a gun to my head -
pleasant misery, this.
.

Eventually, I must force myself out
of the self-imposed depression
with blasting speakers
vibrating the walls
so that I can't hear myself think.

I end up doing housework in the middle of the nite.

Aloneness

Aloneness

I wear it like a secret badge of honor -
I did it all by myself -
survived the previously thought unlivable.
What did I do? I grew up...

And I never want to do it again.
and I don't want to do any more of it,
because something is lost.
Child-like faith, and trust,
and the in-born belief that the world is good.

Maybe that is why it was so hard -
I had to drag myself
kicking and screaming the whole way.

And don't you think
you can do it for me
"for my own good".

Leave me alone,
it's much better to hurt myself by myself.

Then I have no one to blame, and I learn.
.

December 1984

December 1984
Dream

My car needed snow tires, so I took them to a shop where I had heard there was no charge if you agreed to test a new kind of snow tire. I left my car there for the work to be done, and when I came back, the mechanic drove it out to me. The two front tires had sheepskin all around them - like chains.

I screamed at him, "TAKE THEM OFF, they'll kill me!!"




Oh, wait. That would be handy... leave em on.
.

I give in...

Okay, Kelly, I Give In

Yes, I needed him -
a whole lot more than he needed me.
You keep saying I should learn something from that -
not to put all my eggs in one basket.
Or not to put my faith in those things of the world.

Believe me - I won't anymore. I promise.

Things change. Love leaves, babies die, and people grow up.

Right to grieve...

Right to Grieve?

I don't know why I cry, really.
For what do I mourn?
My baby's death or for his life?

He was spared actually of living his life
when you think about it.
Anyway, that's what most people seem to think.
Not only am I cheated of his life,
I am cheated of respect
for my grieving because of his handicaps.
I feel selfish wanting him to be alive.

My body produced his hurt little body.
He paid for my imperfect system.
They say I can't blame myself,
but a mother does -
every time she watches a medical procedure,
or see's someone staring,
or hears someone
making comments of her "different" child.

Her heart bears a double burden.

So maybe I was spared, also.
.

To the Powers That Be

To the Powers That Be:

Jacob's death was a mistake.
I want it corrected
and I want an apology.

The dentist chair...

Neil Diamond and The Dentist

I went to the dentist
and took both my boys.
Jeremy "babysat" Jacob
at the foot of my dentist chair.

The girl said,
"would you like to listen
to some music with the headphones?"
Well, sure. What a nice idea.
I picked Neil Diamond
and tapped my foot to the beat
while they worked on my teeth.

Months later...
I went again to the dentist
without my boys;
mostly because Jacob was dead.
But I didn't remember.

The girl said, "would you like some music?"
Well, sure. Neil Diamond would be nice.
Something hit be hard
right between the eyes
and in the very pit of my stomach,
at the first sounds of the tune.

I ripped off the headphones -
startled at the painful shock.
And then I remembered.

I began to cry and couldn't stop.
I tried to explain,
but they didn't understand
and hurried through.

The dentist and the girl
kept looking at each other
not knowing what to do
about my silent tears.

There was no reasoning
or rationalizing the tears away.
I'd been hit in the heart
totally unprepared
while in the dentist chair by Neil Diamond.

The receptionist asked
if the dentist had hurt me.
I said no, and cried some more.
Then I drove toward home
still unable to stop the tears,
and stopped at the dam in the river.

It was the closet
I'd come yet to the river,
and I stood there over the dam
reflecting on my presence there.
For a long time I stayed -
the mist joining the tears
until there was nothing left to feel.

My heart was left somewhere
between the dentist's chair
and the waterfalls -
cause I never want to be hit like that again.
.

Cher

Cher

Not being able
to have a baby
must be as inexpressible
as losing one.

How to behave in public
when there is a baby
being passed around?

How to suppress the longing,
the envy, the staring,
to keep from reaching out
and walking away
with the baby in your arms?

It must be
a feeling of incompleteness -
as mine is a feeling
of missing a piece of my heart.

I wonder if the world is aware of all us potential kid-nappers?
.

Social Suicide

Social Suicide

Don't feel so sorry for me,
I will let myself drown in it.
I feel weaker than I know I am.
Give me half a chance
to survive my way - not yours.

It's so easy to feel sorry for myself
when I have so many to root for sorrow.
I submit far too often -
it is so hard to pull myself together
when I'm in such pain,
and with you fully expecting me to crash.

I know you mean well,
but I have to separate myself
from those of you
who have only pity for me.
.

Kelly

Kelly Again

Not one single thing is solved -
although everything
looks better on the outside.
Circumstances are better,
and problems don't seem so huge.
My future looks bearable,
but the past overshadows it still.

I want Jacob back,
now more than ever.
The stronger I get, and more stable -
the more I feel like the past
was a bad dream
and I should do something
to clear up the misunderstanding.

Where the HELL is my baby??????

Everybody thinks
I've done remarkable well,
but I honestly ask myself every day -
"Where is my baby?"

It makes me angry
to think my life has come to this -
this still wanting him
as hard as I ever have -
with every fiber of my being.

Why?
What was it he did for me -
besides fill me up with a purpose?
.

My counselor...

Kelly, My Counselor

Kelly, you were the glue
that kept me together.
And then I moved away.
You should have used super-glue.

I want to go to someone else
in this new place,
but I'm afraid
they might think all my edges
are messed up with crazy-glue.
.

Jacob

Jacob,
How could you die
and leave me
with all these feelings?

Words left on paper
instead of kisses
on your face.

Kelly

Kelly

I still need you -
I'm afraid to go to someone else.
It took us so long to get where we needed to be,
and we were only beginning,
to get to the guts of Jacob.
We looked at and solved many other things,
partly because I needed to,
and partly because the other things were safer than Jacob.

Funny - I began to talk about Jacob
only after I decided to move away.

About Jacob.
His name is becoming nearly sacred,
and I have a feeling that's not healthy.

I gave you my poems,
only to refuse to talk about it.
You said you cried after only a few pages,
and I felt panic at the thought
that you might finally understand
why it was so hard to talk about it.
I was afraid you'd pronounce me cured,
as far as it was possible
to be cured from losing a child.

I didn't want you to understand,
or talk about it,
because that meant getting better,
it meant letting go.

And I didn't understand "letting go".
Until I understand what letting go means,
and what the benefits are, I will not.

It just doesn't feel safe.
.

I hate the way we say...

Let's be Honest

I hate the way we say,
"I lost a child a little more than a year ago",
or "that couple over there lost a baby in a car accident".

Lost?

Then why the hell
are we just sitting here
talking about our lost children?
Shouldn't we be out there looking for them?

That is the question...

Why do cats have nine lives
and babies only one?

Anger

To Hell with It

"Letting go" be damned.
I resent resolving an issue
and not have the reward
back in my arms.

Anger

Don't stand there
in front of me
and tell me
this is God's will,
and that He knows
what is best for me.
God is listening
to you comfort me,
and if I sense
he agrees with you -
I'm done for.

He was special...

He was so special.
The special serenity
of his little being.

His cup was full.

Dear Jacob

Dear Jacob,

Were you scared?
Did you think I'd deserted you?
How I wish I had been with you.
I wouldn't have understood
any more than I do now,
but I would know
that I had finished taking care of you.

What rot death is in this society.

I would do it all differently now, son.
.

Dear Doctor

Dear Doctor,

How do you feel personally
about me personally
losing my personal little baby?

What does it feel like to you?

The aftermaths...

The Aftermaths of Losing a Child

Some take pictures -
I take pen in hand
wanting to capture
my son in the sand.

He advances in bravery
after each visit with Dad,
tackling bigger feats,
making me proud but sad.

Will he grow up sure and strong
with me as his mom?
Fear lasts so long.

He runs away from me,
daily he grows...
more boy than baby
in every way, it shows.

He rushed back,
Mom, mom, did you see?
Yes, honey, I did.
"I'm big", he says, "Watch me".

Please be careful.
How am I ever going to be able
to let you grow up
without my eagle eye
to protect you every second?
.

Awaken...

100% Pure Terror
Awaken instantly,
suddenly,
no luxurious laziness
into the morning.

I haven't heard Jeremy all night.

So this is what cold sweat feels like.
My body begins to react with hysteria -
headache, nausea, frozen heart,
forgetting to breathe.

But my mind is clear -
except for the fear itself.

I will not call the paramedics.

I will take care of him myself,
because I'm supposed to,
and I know what's ahead of me.....





Never mind.
.

My own death...

My own death
does not frighten me.
Only Jeremy's does -
and yet - if he died,
I would be free
to join both my children.

Life isn't fair

Damn It

I'm tired of
protecting myself
from feeling down
and depressed
because I can't see anything
but razor blades and pill bottles.

I can't even feel depressed safely.

Wounded

The Wolf in Me

I don't think this is self-pity,
it's more like emptiness.
I don't think it's loneliness -
I enjoy my time alone.
This isn't being suicidal,
I don't think.

This is being mortally wounded.
I want to curl up like a dog
who knows instinctively
that the wounds are too great for healing.
.

Again...

There Again

What is happening to me?
Five months ago
I wrote positively
about surviving
the shadow of death -
proud of crawling
to the other side in one piece.

but now - here I am.
Full of hurt and doubts
and memories again.

Maybe in one piece,
but certainly not in peace.

This stupid book will never be done.
.

Scares you?...

I wonder if this scares you.

I know it does in person.

That's why I always say
I'm fine when you ask.
But, you see -
people who are bereaved
seem to have a role to play.
Forced on us by others... ...
and ourselves for survival's sake.

But I refuse to play on paper.
.

Un-numb...

A part of me refused
to un-numb and I knew it.

I must wait till
I'm strong enough
to feel the rest of it.

There are times...

There are times -
like tonight
when I am absolutely terrified -
too scared to do anything
but drown in fear,
barely able to breathe.

Two thoughts do this thing to me.
The thought of an almost 4 year old boy
possibly dying,
and the sure-heart knowledge
that Jacob may have died
because I wasn't there to stop it.

Brains eating my stomach.
.

Permanently Suicidal?

Permanently Suicidal

Tonight, if I could - I would.
Only motherhood stops me.
I must wait
till my son knows what's wrong -
and can get help for himself.
Must teach him some phone numbers.

I can't keep up
this act of well-being any longer.
I almost fooled myself this time.
Before, I always knew how bad
I was and was prepared for the crash.

Now, they sneak up on me
while I'm busy acting,
and I can't even find a reason.
I need to know what it is
before I can fight it.

I'm so tired of living.
.

Born alone...

He was born alone,
without his mother
or father present
and he died alone.

I'm hoping being born
and dying isn't the important part...
I'm hoping it's the in-between he remembers.

Up in heaven...

I think people up in heaven
are so happy that they forget
what it's like down here.

I would have taught you better manners, Jacob.

One day...

Lord,

When I prayed
for a day off from Jacob,
I meant only ONE day!!

Maybe...

Maybe I loved Jacob too much -
more than I loved God.

Because Jacob was touchable,
and he responded to me.

Jacob

Jacob

He handicapped my insides
with bruising my baby building capabilities,
and my heart is suffering
from a defect called "Missing Piece".

I'm also sure there's been
some brain damage from
thinking too hard.

I guess it's true... you really CAN inherit from your kids.
.

Dear Jacob...

Dear Jacob,

I want to write well enough
to make everyone understand.
But I keep noticing
some of it is redundant.
I keep thinking
if I could just write well enough,
and say just the right things
in the right way - I'll earn the reward.

Getting you back.
.

Deep Breath

Deep Breath

Most mothers
check their children
to see if they're awake.

Some of us check
to see if they're still alive.

Dear Jacob...

Dear Jacob,

I think your dad really did love you.
He just didn't know how to show it.
He thinks love is all joy and perfection.

But we know otherwise, don't we?

Yikes

Sometimes...rarely...-
I write something
that feels so exactly right,
so perfectly how I feel,
all I can do is smile
as I rip it off the tablet
and put it hurriedly
away from me
so it doesn't get ruined.

Someone else...

Ooops

The "poem/story" called
"My first Month With Jacob"
needs to be redone and refined -
but I don't want to go back and look at it.

It must have been another person.

Breathe

Breathe, Laurie, Breathe

Jeremy brought out the lambskin
and asked if his Cabbage Patch baby
could take a nap on it. I said yes.
He hummed away happily.

While I had a heart attack in secret.

I hate this. God, how I hate this.
I am calm on the outside, so I won't frighten him.

I simply cannot be sensible about this one.

He's got the doll laying face down
on the sheepskin,
and is tucking a blanket around his baby.

I stood in the bathroom,
shaking violently. And then I threw up.
My stomach hurt, my head hurt
with the explosion of memories
of the morning my baby
who died on the sheepskin.

That thing.
That thing Jeremy was now treating as a toy.
Memories that I can't consciously retrieve.
Only the nuclear bomb sense
of my soul being obliterated of security, faith and happiness.

Recovery is impossible
with the after-effects of the bomb.

To say nothing of the waste.
.

Christians

Some Christians
are so Christian
that real life
doesn't seem
to touch them.

Are they to be envied
or pitied?

Broken heart...

A broken heart
needs protection
from the elements of life.

It is exposed
to every little slight -
real and/or imagined -
a true victim.

Imagination takes over
your life with dreams
wanting to be repaired
or restarted.

Life is dangerous if you're operating on a broken heart.

I promised...

I promised to send
these poems to you,
my good friends,
but I keep waiting
for a happy ending,
so you'll know grieving
is survivable.

The Lord and I...

The Lord and I
are in the middle
of a nasty separation.
Neither one of us
has filed for divorce yet.
He says he won't,
but I've heard that before.
He just keeps on forgiving me
and I keep on coming back.
It makes me feel guilty.
Is this what happened to my husband?
I keep forgiving him and he keeps coming back.
Feeling guilty isn't a good feeling to live with.
.

First Aid

First Aid

Once I needed band-aids
for my heart
and searched everywhere
for the doctor in charge of ego-repair.

The damage was too great -
no one can bandage a broken heart.
It has to heal from the inside,
and only time will heal it.

Although time
feels like the enemy,
you eventually learn to trust it.

You can't use
other people as
first-aid cream either.
They usually want your heart
for their own purposes,
and broken hearts
aren't much good to anyone.
Broken hearts just get used
and abused even further.

Broken hearts
are so busy looking
for the fixer-upper of hearts,
they don't notice what they really need.

Which is time. Only time.

His things...

Your Things

I pulled out the box filled
with his things today -
his second birthday.
The blue t-shirt, tiny diapers,
the front-pack carrier
that still smells of vomit -
even the stupid shunt.

And the sympathy cards
full of words, words, words.
The cards that remind me
of how terribly alone I was,
and how angry I was
to get the pretty words of "comfort".

I needed to touch his things
to remind myself that they were real,
and there's a reason for this pain.
.

Update

Update

Your mom is getting happy, son.
But sometimes I come crashing down
in the middle of being happy,
because I feel guilty about feeling good.
I've even laughed a couple of times.
The hard part is thinking
and believing I deserve it.

Uh huh

Right

"You'll be a stronger person
in the end", they all said.

I didn't care about the end
when I was so stuck in the middle.

Did Job's children...

Did Job's children know
or question why they had to die
to test Job's patience?

The Lord DOES take away one's children.
In Job's case - to teach a principal.

So I guess my anger can be justified????

The letter...

The Letter
19 Months After He Died

A letter came today
from the Children's Orthopedic
Hospital and Medical Center
of Seattle.

Pretty impressive.
Did I request information
or something?

No.
It's a letter requesting permission
to insure proper follow-up care
for Jacob.
?
It is dated March 13, 1985.
?
Jacob's been dead for 19 months now.
Hasn't he?
It says;
'Your child has been seen
at a March of Dimes
Birth Defects Community Clinic'.

I wish that they had specified when
the last time they had seen him.

Maybe he's not really dead -
maybe they just discovered
that he's missing a mother.

Somebody make sense of this for me.
I want to fill out the form
and agree on a date they can
see my baby.
.

That Letter...

The Letter

That letter
is scaring the hell out of me
with my wanting to pretend he's not really dead.
So many possibilities.

Maybe they staged his death
in order to protect me
from raising him
for my/our own good and future.

Maybe they decided
I was a bad mother
and placed him with someone else.

Maybe his dad
played the cruelest trick
and convinced the doctors
to go along.

He did, after all,
call the nurses,
after he died,
to tell them
I had choked my baby to death.
(True story)

Maybe it's all been
a bad dream after all
and I just haven't woken up.

Maybe a kind person
at the Children's Orthopedic Hospital
wants to correct the mistake.
.

April 1985

April 1985

Dream #1

Jacob's dead body is laying on my bed and there's a party going on in the living room. I keep checking on him, re-covering his body with more blankets, re-positioning his cold and stiff body and I am irritated with the stiffness of his body. The people at the party try to convince me to leave him alone and come out and have some fun. I know they are right. But as long as his body was there, I had to take care of it. I was torn between wanting to join the fun, and feeling compelled to take care of my baby. I kept wishing his body would just disappear, to I could have some fun.

Dream #2

I'm in a huge shopping mall, carrying Jacob's dead body, looking for a place to put him. I go into each shop and ask the owner if I can leave him there. But either the shop doesn't seem quite right, or the shopkeeper doesn't understand, or they're just too snotty. I can't seem to find the perfect place for him. I need to leave him somewhere safe so I could leave him.

Dream #3

Jacob's dead body is in the trunk of my car, and I am driving all over town, looking for the place he belongs, wherever that is. It gets hotter as the day goes on, and I am panicked by the heat. Every time I stop at a stoplight, I get out to check the trunk to see if he's melting away. Eventually, his body starts to rot away, and I am in a total frenzy, driving around town, looking for the place I'm supposed to leave him.
.

Love...

Love doesn't just
drop dead overnight.

Babies do, though.

Be so much easier if love would.

August 1985

August 1985

Jacob, we're coming up
on two years now since you died.
The missing child posters
that hang in every corner
of my mind are getting faded
and tattered from the winds of neglect.

I seem to resume the search
less often with less hope of success.

Now I'm just looking for understanding.
.

Just dead...

Jacob is just dead.

He's not anywhere
being glad of my progress
down this road of grief,
nor is he shaking his head
in disappointment
at my apparent
lack of progress
down this road of grief.

He doesn't know beans about me.

Dead. Dead. Dead.

That's all there is to it.

Dead.
.

The father...

It's hard to believe
that the father of
my children even exists.
It's even harder to believe
that somebody else
lost the same baby I did.
It's hard to believe
that we are both alone in this -
grieving for the same baby.

It's hard to believe he might be grieving too.
.

Someone asked...

Someone asked if God
really helped me through it.
Today wasn't a good day to ask.

I think, at best,
God and I tolerate each other.
We're both in the same space,
but one of us is doing a lot of pushing.
.

World...

Hey World!

There was a baby here once
though only for a short time -
but he WAS HERE!

He was 7lbs, 5 oz. at birth,
had blue eyes
and he was perfect.

The worst part...

The worst part -
the absolute worst part
is remembering
the loss of control.

I couldn't stop them
from telling me my baby
had some problems.
And once they told me,
my body didn't belong
to me anymore.

It had become a dangerous vehicle
for a defective baby
and vitally important to separate us.
They made conversation
and decisions casually over my head,
while my life shattered in front of them.

Hurt baby became hurt mom.
Maybe if they had let us stay together
just a little bit longer - maybe I could have fixed him.


2015 Extra Note - That's not true.  The worst part was the alone-ness.  

.

February 1986

February 1986

Jacob, there are times when I forget what happened to us. My glance will cross the picture of you and Jeremy that I have on my desk, and I will feel somewhat puzzled - I have TWO children?... And I will wonder for an instant about the mundane things - like how much extra time in the morning would I need to get 2 kids ready for daycare or how much would it cost to have TWO kids in the daycare. Then in the next instant, I remember that life would have been different with you, and I wouldn't have been working.

Taking care of you was hard, but it was rewarding. What I remember the most is never having enough sleep. A newborn who didn't wake up loud enough to be heard for feeding tended to keep me up all nite long. Plus the worrying. God, how I worried. I hated to leave the house. Inside the house, we were a family. The time we made cookies and we had you up on the kitchen table - you were wide awake, watching me and Jeremy. Jeremy thought you were trying to talk to us because you were just beginning to smile. We tried to feed you "real" baby food to see it that would stay down any better than formula, and you loved it. It was a fun nite - treating you like a normal baby, trying a new food on you.

It's not every mom who has to stop and think "now am I gonna be home in time to cath him, or do I need to take all the stuff with me", or "what 2 month old baby is gonna sleep for a 12 hour period so he can wear the therapy equipment they want him to wear for 12 hours" or wondering how much you vomited or how much your head grew overnight and did it mean you needed to go back to the hospital.

It all seems so unreal now, and yet I can still smell you.
.

Life?

Hey, LIFE! , I shouted.

Yesssss?..... Life responds.

I think you gave me a raw deal but I'm learning to cook, I said.

Oh? And how do you like your life, Life asks.

Medium rare, I respond.

I'm told to write...

Ugly

I'm told to write of happiness
to instill the hope of survival
from the loss of a child.
They want the sticky-sweetness
of the other books written on
death and grieving.

Like eating cinnamon rolls,
the other books
of hope and inspiration
leave me feeling satisfied -
but only for a moment.
The other books
sit in my stomach
like a big plate of greasy bacon.

I can't do it.

Grief is not a pretty thing.
.

Too early...

Four O'clock in the Morning

Someone should have told me
it would be okay to be still.
That's what I needed.
To be still for as long as it took.
And maybe it wouldn't be the way it is now.

Instead it was -
"What are you going to do with yourself
and your life now?"
And when?

So what did I do?

I got up and ran like hell.
.

August 1986

August 1986

There are times, like tonite,
when pain moves back
and lodges itself back into my heart.
As if it never left... as if it belonged there.
As if it had been momentarily lost
and with a huge sigh of relief - it found me again.

It still surprises me - how sharply it feels.
I feel as if I could reach out my arms
and Jacob would be there.
I can smell his smell,
I can feel my hands on him.
I can feel the weight of his body
as I pulled him up to hold him against me.

It's summer time.
And he really isn't here.
My body misses him.
I check on a sleeping Jeremy
and touch him instead.
Five years old and a new haircut today.
The "hair cutter lady" asked him
if he had any brothers or sisters,
and he very matter of factly said
"I used to have a baby brother, but he died".

I had to smile inside
because the reactions
are always interesting to watch.
Invaribly, they look at me
to "check" his story,
and I always pretend I didn't hear.
But inside, I'm saying "please believe him,
it's important to me
that the whole damn thing is believeable
so that someday I'll believe it myself".

My son, whose dead brother is a fact of life...
and me, the mother,
who tries so hard to make it a fact of life...
until a nite like tonite comes along.

Oh Jacob.
Is this almost exquisite pain your way of "being" with me?
Or am I still sick and crazy with grief?
I want to hold you.
I want to be held.
.

Meadow Lake

Meadow Lake

There's a place I went to just after Jacob died. A clear blue/green lake way up high somewhere in the mountains. It's one of those storybook places, the lake surrounded by mountains rising right out of the water, springs and streams feeding the lake, fresh, crisp air, and it's a place where you just know there's a God.

But my new-felt fresh pain was too big even for this place, these mountains and the sky too close for comfort. The place is bitter-sweet.

It was there I fought a mountain, literally climbing it's walls, it's cliffs - trying to get close enough to God - to punch him and then throw myself off the mountain to die.

I lost the fight - I left God up there and haven't prayed since.

.

Meadow Lake

More Meadow Lake

This was 2 weeks after Jacob's death.

My mother says these two pictures made her cry.

Safety counts...

2008 Extra Note - When I finally screwed the damn worm onto the hook, and casted? Note the fish line and hook flying above Jeremy's head to the right....
It was years before I noticed the fish hook.

I wonder...

I wonder how much
wanting a baby
really means wanting Jacob.

He's grown so in my mind,
and I as his Supermom
was cheated of my role.
Maybe that's all it is.

It'd be hard to live up to another baby.
What I really mean is - hard to live down to a normal one.

Curious

.
Maybe this is just the longest suicide note ever.
.

First snow...

First snow of the year.
Cold stuff, snow.
Ohmygod.
All the buried babies.
All the babies floating around
in parents' minds.

I hope they're warm enough.

Resting place

The Pitfalls of Explaining Cremation to a Three Year Old Child:

One day, at McDonalds, we were having a meal with friends, when Jeremy blurted out that Jacob was dead. Table goes silent. I look at him warily, afraid of crying yet again. I said "yes, Jacob is dead...", and was terribly conscious of all the eyes suddenly turned on him, not only those at our table, but neighboring tables too. His tone of voice was not exactly considered polite table conversation. Then my little darling... with impeccable timing, noticing everyone staring at him, said "And my mommy burned him up in a oven!!"

2008 Extra Note - These pictures are 23 years old, so I feel lucky only a couple of them are poor quality. They looked good until Blogger got it, and sucked up all the color. Anyways, there's a little stuffed lion in the left corner. The little square looking thing to the left of the lion is the container with Jacob's ashes. It's got a picture of yellow roses on it, cause someone sent me yellow roses when he was born. We're on Steptoe Butte, outside of Steptoe, Washington, and our house is actually way down that road way down the hill. The house is one of the two tiny little dots to the left the road going down. I chose this spot cause his father and I had spent our short married life there. We were still happy there. Jeremy and I tossed the ashes in the air, and left the lion and container up on the butte.

.

Linda

Linda

I often looked at your picture
hanging in your baby's isolate
in the NICU, and thought how pretty you were.
I sometimes jiggled his little bed when the monitor went off.
I was horrified the first time - God!
I had just saved a life, me, a mere mother!
Pretty soon, I was just as casual as the nurses at "saving" lives.

I don't remember ever talking to you
in those days of Neonatal Intensive Care -
I don't remember much of anything during that time -
just the atmosphere of intense fear, shock and worry.
You were a veteran of 3 months by then,
and I was only there for 10 days.

Then we met again on Pediatrics -
both our babies were in for "shunt" surgery.
This time I was the veteran, it was my son's third or fourth time,
and I explained the system
and showed you the piece of plastic
they were going to put in our children's head.

You hated the Pediatric floor,
being used to the one-on-one care in NICU,
and I kept saying you couldn't expect that kind of care on this floor.
We watched out for each others babies -
reporting on the nurses to each other.
Remember Dan, the float?, who impressed us so,
and the silly mother who had the "billy baby"?
Just a "billy baby"? (bilirubin - when the baby is turning yellow and needs phototherapy)
She drove us nuts
with her silly worry
compared to OUR babies.

And Shawna, and Jenny, and Corey?
We met so many moms and their kids,
new ones each visit,
old ones from previous stays.
Keeping up with each other, and holding each other up.

One night  - we got silly, known as "hospitalitis",
a serious disease commonly caught by parents
who are sick and tired of BEING THERE.
We brought in a 6-pack of beer -
giggling like two school girls,
sneaking it in behind the nurses backs.
They probably would have joined us tho
and wrote it up as a "support measure".

Half a beer later, I went home,
leaving the care of my child to a drunk -
how were you gonna keep an eye on anything
in the state you were in?!
We learned how close we lived to each other,
less than a mile apart.
And for the next year, we survived together -
you with your baby, and me without mine.
Surviving each in our own way, but so much together.

You filled me in on missing memories of the NICU,
and I reassured you on shunts periodically.
You babysat at the drop of a hat for me,
and understood why I couldn't babysit yours.
I was okay as long as he wasn't sleeping!

I only hope that I helped you as much as you helped me.
All the dinners at your house,
and the lunches, your company,
even when it was bitchy was still better than my own.
If I couldn't cheer you up
then I felt perfectly comfortable getting bitchy too
and we were great company for each other.
That is the mark of true friendship...
being bitchy and still able to like each other.

Thank you for being my friend, and always being there.




2015 Extra Note - oh Linda... how much I love you and Rex.  I should get in touch.

.

I kept thinking...

I kept thinking someday
I'll be better.
Getting better was my goal -
it meant getting back to normal.

But then I remembered
being normal was unknown,

and unhappy.
So now I think getting happy is like ...
eating cotton candy.
To be looked forward to
at the end of the fair, and only in small doses.

Maybe someday I can have it at the beginning of the fair.

Bull-doze

Duh.

I MUST bull-doze myself
out of the baby-family mode,
and four-wheel drive myself
into other things.

Dear Lord

Dear Lord,

Let's withdraw myself
from the hurdles,
and go for
the long-distance events instead.

I may be able to do a little better.

Course, you ARE the judge.

Dream come true...

Dream come true or a nightmare?

Jeremy is with his dad for at least two weeks -
hopefully more.
I am free for the first time willingly.
I can't decide what to do first -
sleep or write or sit and listen to the quiet.

A phone call to Jeremy. No answer.
Jesus Christ, his dad has kidnapped him
off the face of the earth. I am panicked with fear.
Who should I call first?
Idaho or Washington state police?
Until twenty minutes later -
when I try again and he answers the phone.

An old battle is re-emerging within me.
Deep down inside where I can barely reach -
there is a feeling of relief; he's with his dad.

Cause you see...
one of my children has already died
while in my care.
He's probable safer there.

.

The only sign...

The only sign
of my second child
is the scar on my stomach.

Though, even that is fading.

Quick

Quick quick.

Run around the house cleaning
from top to bottom.
Wash every item of clothing,
every dish.
Rearrange books on bookshelves,
clean out closets, reorganize dresser drawers.

Redecorate, move the furniture around.
Yell at the kid when he crosses my path,
slam his meals down in front of him,
and head for the bathroom
that needs a clean shower curtain.

Panic panic.

All so I will be too tired to sit up
and let the Christmas tree blink me
into a Christmas tree depression.

Two years ago - no husband.
One year ago - no Jacob.
This year - no Jeremy, he's going to his dad's.

Like Pavlov's dog,
I am being conditioned into not liking Christmas.
.

Confession...

Confession...

I think as long as Jacob is dead -

I MAY not be normal ever again.

Dr. Seppa

Dr. Seppa

He told me once
the reason Jacob
was so special
was because it was fun
to watch me love Jacob
and grow as his mother.

Reflections

Reflections

Jeremy was just over 2 1/2 years old when his baby brother died. I thought he was too young to understand anything, and was also in too much shock to really think of him during the death time. I wish I could say I was a good mom then, but as long as he was being taken care of by someone else, I thought I was doing the right thing. Actually, doing the right thing didn't even occur to me.
A friend has told me that I did take him into a room and tell him Jacob was dead, and that we wouldn't see him again, but I don't remember.

Now I know many things. It has only been in the past few months that I have realized how much Jeremy did absorb. I think that he had to get older in order to have the ability to express his feelings or thoughts. His vocabulary level and my listening level just wasn't able to accommodate his need to tell me how he felt or what he thought. I had read all the books and I wanted to do a good job in handling the situation, but I was often frustrated, because he couldn't talk the way I wanted him to.

The only way he was able to tell me he was having thoughts of Jacob, was by constantly asking me every time we drove by the hospital "lets go up and see Jacob". I would explain patiently that Jacob was not there, nor at home - he was in a special place called Heaven for dead people. Then he would get concerned about himself getting sick and dying, or his mommy or daddy dying. I would then explain how Jacob was different - his body was not strong like his or mine or his daddy's.

One day, in response to his usual question, I took him up to the hospital and showed him the intensive care nursery, the pediatric floor, and we "looked" for Jacob. Since Jeremy was very familiar with the place, he had to check every room before he was convinced that Jacob really was not there. Then I let him play in the playroom, while I walked around, trying to convince myself.
The trip to the hospital seemed to help for awhile, but then he started in with "let's go see Jacob in Heaven". I was at a total loss. One time I said he couldn't unless we died too. Wrong. He became whiny and clingy. If I explained about God, he didn't' want to go to Sunday school cause God took Jacob away and might take him or mommy or daddy away too. It was too much for me. I didn't have the answers for myself, much less a two-three year old. I simply did not know the answers, and so I really flubbed up much of the time. I knew he would not have been so persistent, if I had been able to sort out my own feelings enough to explain it to him. It was definitely a crisis of faith of some sort.

A few days after losing my temper with him about it one time, a friend called. Her cat had just died, and she was going to take it to the pound, would I watch her kids? I told her to hang on, I wanted to bring Jeremy over. I showed him the dead cat, pointed out how the tummy didn't move in and out anymore, how the body was stiff and cold, and how the eyes didn't see anymore. He wanted to know what we were gonna do with the cat, and I told him some people bury the body, and some people cremated the body. He asked what cremation was.  Geez.  I told him Jacob was put in a special machine that made his body into ashes, like an oven, but he was dead, so Jacob didn't feel it. I told him Jacob was cremated and we were gonna take care of the ashes someday.

I told him that although Jacob's body was all gone, his soul was up in heaven. A soul was like Superman's cape. Without his cape, Superman was just normal human being. With his cape, he was special and could fly. Jacob's soul was like Superman's cape - the body was normal but the cape made him able to fly up to heaven.

It helped. That night, all of a sudden, Jeremy started crying. He was sad about Jacob, he said. It was the first time that I felt he really understood why he was crying. Before he had cried, but mostly because I was, or because he could manipulate me by being "sad". It was a bitter-sweet moment for me - it was the first time someone with me understood missing Jacob so much.

There are some things that I wish I had done differently. I should have remembered how it felt to be treated like a child.

.

Living...

Living Cautiously

How awful to be a giraffe,
approaching a water hole cautiously,
carefully, scanning the horizon for danger,
maneuvering legs and neck for a drink -
only to find the water has been poisoned.
.

The last thing...

The last thing
we are comfortable
talking about
is the first thing
that I live with
every day.

Old joke...

You've heard the old joke -
The lady called the suicide hot line
because she was comtemplating suicide
and they put her on hold.

It's no joke - they really did that.

Pretty good...

How am I doing?

oh... pretty good.

My depression is on automatic now,
so I don't even have to think about it.

Cruising along nicely.

Just say'n

Just Say'n

Babies do not belong in the ground.

Or in ovens to bake into ashes.

Just thought someone should know.

The little girl...

Can't Win for Losing

The little girl wanted to be a mommy
more than anything else in the world.
So she became a wife first
cause that's more acceptable.
The little girl became a mommy
and often forgot about being a wife.
She had 2 children,
and found herself a single mother.
One child died,
and she became afraid
to love the other one for fear of losing him too.

The wounded little girl
became more than a mother.
She became an employee,
a date, a secretary, a bitch, a divorcee.
None of the labels fit her quite right
for she was meant to be a mother,
with a baby in her arms at all times.
Instead, her fear and all her other roles
cheated her out of all her roles.

The wounded woman
often remembers the little girl she used to be -
the little girl who used to look
at baby things in the catalogs.
She wonders why,
now that she knows children are not forever -
why all she wants
is still to be the mother
of endless children.

She really ought to grow up.
.

Jacob died...

Jacob died
and I became
a long-distance runner.

The easiest thing...

Writing is the easiest thing
in the world for me.
The words flow out without conflict,
without worry, without thought.

More often than not,
my handwriting is too slow for the words,
or the typing speed too fast for accuracy,
frustrating my sense of order and perfection.
But afterwards, I am strangely chilled,
and empty, as if I'm a piece of finger-jello -
without substance.

I try to re-read my words,
trying to reclaim a part of me,
but it doesn't work.
The words don't seem to belong to me.
I walk around, empty and dis-satisfied.
And very definitely cold.
Only after I go out to run,
or take a hot bath, do I feel normal again.

Then I am able to read
what I have put down on paper and think,
"Oh! That is exactly perfect",
and I am content.
.

Thanks bunches

Somebody once told me
that God gave me Jacob
as a gift cause he knew I could handle it.

I must not have been doing a very good job.

Leo Buscaglia..

Leo Buscaglia wrote a book;
"The Disabled and Their Parents".

I read it a year ago right after Jacob died. It took forever to get through the chapter "Special Feelings of Parents". Ten pages of pure anguish and of being understood, produced tears at every paragraph. I cried for days and a concerned friend said "You stupid idiot - don't read it!"

Now, a year later, I've read the chapters on BEING disabled. Once again, I am walking around on the verge of tears.

A year ago I couldn't have accepted his death as a blessing because it was my own loss I was feeling.

Now I am beginning to feel that maybe, just maybe - Jacob was spared the pain of being a handicapped teenager, and an adult. There might have been physical pain, and certainly emotional pain.

And once again, I am thinking of myself - I would have had to watch.
.

How...

How am I supposed
to resolve having a birth defected infant,
when that infant
isn't around to help me face it?

I mean, really.
It's asking a bit much.
The least I should have been able
to do was prove
that I would have been
a good mother for him.

A Super-Mom at the very least.
.

What's Forever For...

I get the feeling
this is taking me
a long time...

Support Person

Support Person

I enjoy helping,
but the demands are great.
I admire those who have the shut-off valve
and can go home to live their normal lives
after talking with a new parent who has just lost a child.
For me, there is no shut-off valve
and I find the death of children eating me up alive.
I cannot continue to eat, drink,
and sleep death for the rest of my life.
The line is too fine for me,
and I keep tipping over, into the wrong side.
It's time for my grief to be packed away into a box -
like the rest of his things -
to be opened at my will instead of the will of others
who seek comfort by knowing my story
and my process of survival; reminding me so constantly.

There comes a time when grief must be put down.
There is a time for living with death -
for it needs to be sorted out and assimilated into our life,
but not into our living.
It's time to stop looking back,
and start looking ahead at the future.
His memories are tucked into my heart,
and are just as much a part of me
as his physical body used to be.

The time has come for me to let go of all of it.

I'm not quitting - I'm just done.

Book Learning

Book Learning

Jacob's life was the only time
in my life when I did not turn to books.
How to build a wedding,
how to be happily married,
how to be healthily pregnant,
how to parent,
and how do babies grow.

Followed by how to bring back your man,
how to be divorced,
how to survive divorce,
and how to just plain survive.

I forgot to read
the pregnancy books
when pregnant with Jacob.
I was too busy reading the Bible.

And then he was born.
I was given books
and titles everywhere I went.
I read nothing of handicapped children -
for the first time I let myself feel what I felt -
I didn't want to document my normalcy.

Until he died.
Then the books replaced my feelings once again.
How to die right,
the right to die,
life after death,
and how to survive.

And to hell with the Bible.

Jeremy

Jeremy
Well, the house didn't stay any cleaner
while you were away.
I wasn't any more organized
without your little bodied presence.
It wasn't any more quiet without your chatter -
I filled the silence with the TV or the stereo.
And the sound of my own voice made me jump.

Kitty drove me crazy without you to bug.

How many times
have I wished my name wasn't "mommy"
with the endless questions,
and yet,
every time a child called out at the store -
I turned around instinctively.

I didn't go out and party like I had dreamed of,
Or even go to the library like I had planned.
I just stayed at home
and realized how very much you mean to me,
and how much I am your mother.

Sometimes it's hard
to see past the responsibility
and into the gift of your presence.

.

Restless

Restless

Lately.
Jeremy is not enough
nor this pen and paper.

Settled.
The unanswered questions
are wearing me out,
and they only suit
the current need to worry and obsess.

Secure.
I am okay
no matter what anybody says to me
or about me.
I know I did my best
and better than some.

Happy.

Acceptance.
My baby is dead
and he's a memory wherever I am -
a good memory.
He'll always be with me.
Maybe it's time to begin again....

shhhhh...

.

Elisabeth Kubler-Ross

Elisabeth Kubler-Ross

I read her books a year ago,
all seven of them -
devoured them,
this girl who doesn't understand normal
until she reads it from a book.
Looking for answers.
Nothing penetrated
except for the fact
that many bereaved people
often had visions,
or signs from their loved ones
who had died.

But I didn't.

It was more confirmation
that something was wrong with me.
I desperately wanted to know
where he was,
and if he was happy,
so I would be able to "let go".
But nothing came.

One night, I did have a dream -
he was back in my arms and smiling -
but then I cruelly woke up.
I was convinced -
my "sign" had just told me
he should be back with me.
I'm not very good
at interpreting dreams I guess -
I gave up on that vision Kubler-Ross stuff.

And since I gave up, oh wise me,
I figured I'd surely get a sign.
After all, you can't push those sort of things.

Well, it's been...
almost 1 1/2 years now,
and still nothing.
I have no more sense
of where he is, or why he died,
than I did on the day he died.
In fact, I knew more
on that day because back then
I had something called faith.

So I'm just gonna take Elisabeth's word
and believe that dead is not bad,
and that he is somewhere
with the unicorns.

.

Custody

God can't have custody
of my child until we're done fighting
or until our divorce say so.

Memories

I must collect
all the memories
I can for
I will not be able
to collect his school papers.

Anger

God, I'm sorry, but I'm angry and confused.
Too angry to want to clear the confusion -
always the conflicts:

"God gave you this special child for a reason".

Did you? To teach me about loving and losing? Don't you remember my marriage?

"God doesn't do things to hurt you or punish you to make you grow into a better person".

So why my hurt child?

Why would you allow a child to suffer? How about me?
Where was one of your miracles at his birth? At his death?

"Turn to God for comfort".

Now that one really strikes terror in my heart, for I am truly terrified of receiving any more gifts or blessings. No pain - no gain is not my idea of living.

"God takes only the best".

The only thing Jacob did best was smiling and vomiting. Okay, so he's healed and he doesn't vomit anymore. So why should you get all the good things?

Common sense rarely comes to your rescue, but when it does, I know that you are not responsible for the stupid things people say. Deep down, I think you are not responsible for any of it. You supposedly know whether I can handle this or not - there's no need for you to test me.

See? Sometimes I understand. But I'm suffering from lack of faith.
.

They caution me...

They Caution Me About Idolizing the Dead

Because he didn't have muscle control,
he pooped all the time.
A constant dribble.
Now why he couldn't pee on his own,
but poop constantly... I don't know.

I'm supposed to be careful
and not idealize you.

Okay, fine, I'll admit it.

I hated the constant shitty diapers.
.

I wonder...

Sometimes I wonder
if I'm stronger
for having gone
thru this alone.

I never have an answer.
Maybe I'm just waiting
for someone strong enough
to still love me
while I take my turn
at freaking out.

Letting go...

I kept thinking that letting go
meant forgetting
and never having the blue days,
and never hurting about it again;
that the great ocean of pain
would go out to sea and be gone forever.

Ahhh yes... but remember the tide?

Sometimes gentle, sometimes not.
The tide,part of nature,
undenied, relentless,
and so is grief.
.

Letting go is not getting swept in - anymore.

Letting go

Letting Go

Letting go
is not never hurting
about it anymore -
I am beginning to realize.

I have been crushed
by depression at times
when a memory floats by,
and brings tidal waves of pain.

Simple things, unexpected -
like walking in the snow at midnight,
or holding a baby,
or the turn of a head,
a certain phrase, smile or posture.

The quietness and beauty of nature.
As long as I can see and hear these things,
the fog will roll in around my heart.

Letting go
means knowing the fog
will lift eventually, and appreciating
the clear times of my days and nights,
being grateful for the looking back -
at the chance to remember -

because letting go doesn't mean forgetting.
.

His legacy

Maybe his legacy was perfect love.

Loving perfectly.

If he had grown up -
this society wouldn't have let him be.
He would have been pushed and prodded,
encouraged to reach his fullest potential.
For who's purpose, really?
And maybe even I would have expected
a return on my emotional investment.

When often, expectation is the destroyer of love.
.

Healing?

Letting Go, Forgiving, Acceptance.

Forgiving is hard
when the tidal waves of pain
are so constant, relentless, persistent.

Especially when you
aren't sure who or what to forgive.
Who has caused such pain is the basic question.

Ultimately, it is myself
who must forgive myself,
for there are no answers and no-one to blame.

Unless you allow
the pain to control you,
and then, who's problem is that?
Look to yourself for the answers you can live with.

Acceptance is equally as hard -
how to accept the pain,
the memories gracefully,
not necessarily gratefully.

There are no choices for me -
I must not forget,
I must forgive,
and I must accept.

Or I will crumple and die.


.

Real...

Sorry to be Real

I have been letting more people read my soul.
And I find it's not mine anymore.
I don't want to live up to the writing -
I can't possibly be as depressed,
or as scared all the time.
I would have to kill myself.

So I pretend it's nothing.
Actually, you've read the words,
and think I'm always this profound...
but then I let you down with reality.
.

Shaky

Shaky

Because my faith was so shaky
and I wasn't getting any help with it,
I think I shall re-evaluate my belief.

After washing cloth diapers
for two babies in the bathtub for a week,
(because the washer just died)
...and having no money
for the laundry mat next door,
I have decided to drop God
and worship the person ...

...who invented Pampers.
.

Filet Me

Fillet Me

There is not one page in this book
that expresses fully the impact
that Jacob had on my life,
my faith, or my future.

And yet, letting you read it
is like laying my heart,
and my stomach
wide open for dissection.

Good or bad judgements,
incorrect sentence structure -
it doesn't matter to me
what you think of it,
but I wonder how it makes you feel.

This is all I have left
of the baby I loved.
I wish there had been
less pity, and more compassion.
I wish there had been
less judging and more acceptance.
I wish there had been
less expectations, and more help.

Mostly, I wish he were alive,
and less dead.

I wish things had been different.

Bye bye son

 













Goodbye Jacob



There is so much to say goodbye to.
It couldn't possibly be done right away.











Well... it was a start.


.

20+ Years After

20 Years After Jacob Died


I still do not believe in God
or heaven, but I do believe in Hell.

I do understand that suffering is relative –
Having survived the loss of a child –
I know that I can make it through anything.
Saying "This traffic jam is gonna kill me"
or "I'm so tired I could just die"
are stupid statements in my life -
suffering is relative now.

I’m not on some higher plain of understanding
because I’ve survived the loss of a child.

I read something just today
that tells me what I've learned so hard...

"Neither philosophy nor faith can heal the heart after the death of a child. Only time, and only because time passes and we forget." (Sacred Journey of the Peaceful Warrior)

I seem okay about it only because
I’ve forgotten what Hell was like.

And I suppose I have God to thank for that…

See? Some inconsistencies
and ironies still exist in my life.




Thank you for reading.


.

23 Years Later

The patch on his head in this picture and the previous post was when the fluid in his head somehow collected around his shunt, rather than thru his shunt, where it would then drain thru a tiny tube into his stomach. We could press it down, so that his skin was flat against his skull, but it would refill as a bubble again, about the size of a 50cent piece, and about an inch high. The doctors were quite mystified by it.

And he continued to throw-up. I read in the mommy blogs today, and so many of them... well... they are lucky. They complain and are horrified by the amounts of vomit and poop they're little babies can do. I had to catheterize Jacob, cause he couldn't pee. He didn't have the muscles to retain his poop, so it drained constantly. He never had a non-poopy diaper. And until we finally got the right shunt in him (on the 5th surgery finally), he threw up every ounce I SWEAR, he ate, until he was 3 months old.

I read the mommy blogs because I wish I was able to read mine with two babies growing up in it.  

 
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