I've been asked...

I've been asked many times to post my poems regarding my son.

It may trigger: this is the death of a baby, my child.

I wrote this in 1984. This was my therapy. I welcome comments. In real life, no one talked about him. Even tho it was 23 years ago, he still matters. And as "they" say, time does heal.

MY BABY IS DEAD

My son, Jacob, died in my home, unexpectedly, at the age of 3 1/2 months. He had Spina Bifida and Hydrocephalus, and his future capabilities were uncertain, so his death may have been a blessing for him, but certainly not for me. His brother, Jeremy, and I miss him terribly. He was a beautiful baby, and a joy to have.

Very often a parent expresses a desire to shout out to the world, "MY BABY IS DEAD!" to explain the catastrophe that has befallen their world and to explain their behavior. For us, it seems that simple little statement, "my baby is dead", should be enough, but often, it isn't. People don't understand, and they want you to be the same as you were before the child died. Many parents have said, "I wish I could wear a sign on my back".

This is my sign.
by Laurie Adamson
Jacob Woodard May 6, 1983 - August 22, 1983



1984 - 2006 copyright @ Laurie Renz/Adamson

.

My husband and I...

My husband and I were separated -
trying to find our way back together.

It was his birthday
and I had nothing
to give but myself
and home-made cookies.

A baby was begun
and he left (again)
in the morning.

The only thing
on my mind
in those early days
was wondering
why we were apart.

Not birth control.
.

My Husband, the Father...

My Husband, the father

He comes to me
when he's depressed
and lonely.
I keep mistaking it
for love - or at least
I pretended it was.

Jacob began, and I denied.

Why doesn't he come home
and shoulder his responsibility?
I don't want this baby by myself.
The fighting, the violence,
the cruel, cruel words
thrown back and forth.

Wonderful beginnings
for the fetus.

Better not read
"Before Life Begins"
by Ashley Montegue





(November 2006) As I was editing these poems, I googled the book mentioned here. It brought up this blog as the first entry! Unfortunately... there's no such book. I've no idea now, what book I had read, but it was all about how outside factors might affect a baby's developement while still inside the mother. I'll have to think about how to correct this.
.

This Baby Never Moves...

This baby Never Moves.

The head is underneath
my right rib-bone
and the feet feel like
they're trying to test the air
on the outside every time I pee.

Draw your knees up, little one -
it feels like I'm being split
down the middle.
I even check the toilet before flushing.

It's gotta be a girl,
it's so quiet,
not like being pregnant
with Jeremy at all.

I never worried
about you not kicking me -
your feet seemed
in too dangerous
a place for kicking
and it would have hurt like hell.

I never dreamed you COULDN'T kick.

Ultra-sound #1

Ultra-sound #1

It told us that I was five months along.
Because I wasn't sure for sure of my dates.
No problems they said, just to gain some weight.
I got a picture of alot of nothing -
they say it's a baby.
So I have the baby's first picture,
and I sleep with it under my pillow
to help convince myself I was pregnant.




Ultra-sound #2

To confirm the baby was breech.
If so, they'll try to turn it around. Huh? !!
I feel positively sick -
how in the world do they turn babies around!?
It hurts just to be bumped into -
how do they turn babies around??

What?

Hydro - what? Hi-dro-sef-a-lus?
Have to have a C-section?...
oh good, I think that means
they won't have to turn it around...
I kept thinking of cows...

read any James Herriot?


(23 years later) I was able to date the picture because I had journaled about my brother, Tom's, visit. I did the research because I knew that I'd been pregnant at the time, but to see the gauntness of my face and elbows.... just horrible. I've never in my life been that skinny, and I can totally see how ugly that is. And to think I was forming a little baby at the time? Heart-breaking. It was the stress of me and my husband breaking up.
.

They tell me...

They tell me I'm going to have a cesarean -

well okay. That means no labor and that's kinda cool
since the labor with Jeremy was pretty hellish.

So they scheduled it for seven o:clock in the evening.
How strange to know I won't be pregnant after tonight,
my last day of pregnancy - three weeks early.
I would miss the tiny little movements of him inside of me,
and the secret, unspoken conversations.

I was just beginning to appreciate being pregnant
after the hell of the early months when I pretended I wasn't.

They admitted me at noon, and I ordered lunch.
Told them they couldn't schedule it at 7pm -
cause I needed time to find my husband...
but I really needed more time to be pregnant.
Lunch finally came... but so did a contraction.
I watched the clocked and watched my lunch, starving.
Should I eat?

I got mad, resenting them for telling me
when my baby was to be born,
and for being cheated out of lunch.
I wanted some control in this situation.

Then another contraction came,
and I resigned myself to starvation,
told my friend, who said "Don't be silly",
who told a nurse, who said "Don't be silly",
who told the doctor, who said "Impossible, she can't be in labor".

Oh boy, was I mad... no one believed me
and I had already sent the lunch away.
I could hardly believe it myself...
this labor was so nice and easy,
the daddy would be proud of me, where-ever he was.

This labor was sweet and quiet, and kind, peaceful -
a quiet goodbye, a looking forward to hello.

Everybody rushing around, getting "the team" ready.
I watched, detached, concentrating
on saying goodbye... and hello.
.

Like Alice Falling...

Like Alice falling into the looking glass,
I woke up. "where is my baby?"
I saw hands reaching out for a baby.
A voice said, "you have a baby boy".
I looked for the voice, but only saw foggy black.
They neglected to tell me a C-section would make me blind.

"Where's my baby?"
Movement below me -
they would take me to see him.
They bumped me along, and stopped.
He must be coming from outer space
cause I could hear strange
beeping noises, and hissing machines.

Then I saw my baby's face...
perfect, perfectly fine, he's okay.
Then I heard someone crying,
someone male. I looked around,
but it was still black,
all except the light around Jacob's face,
he was surrounded by white light.

Then later, when I really woke up,
I wondered if it was all a dream -
how did I know that the baby
on the outside was the same baby
who used to be on the inside?
.

Neonatal Intensive Care Unit

Memories. So few, but so special.

Thank you for giving me my baby...
a baby I wasn't too sure
about in the beginning.
You kept telling me
how special he was,
until I began to believe it.
You helped me see the baby
instead of the machines, the wires, and the future.

Thank you for the time,
late at night, when I came into the NICU to hold him -
looking at him in his little glass bed -
all of a sudden, I couldn't.
I left him, with the tears running down my face -
he couldn't be mine,
there's been a mistake.
Back in my room,
crying, shocked and repulsed by my feelings,
"what kind of mother am I?"
But then, two nurses brought him in to me,
into MY room, the way it was spose to be.

Thank you for seeing
what I needed so very badly.
It was the first inkling I had,
that maybe, just maybe,
he wasn't quite so different after all.
Getting him out of that beeping nursery,
into my room, with privacy,
not inspected, noted, evaluated,
informed of complications...
and watching me to see
how I was "holding up"..
it meant alot to me.
It remains in my mind
as the first time I felt like his mom.

Then at discharge time,
the report reads:
"mother overwhelmed with her responsibilities".
All of a sudden I wasn't so sure
I wanted him to be mine after all.
But you cheered me on,
and told me to take care of
"MY Very Special Baby".

Thank you for loving him until I could.

Going home...

Coming home without my baby. Jeremy was so glad I was home. He had cried his head off when he visited me in the hospital.

10 days old, going home

Jeremy & Jacob meet...

This is the first day home. I later read the medical records from the NICU. They said he was "unresponsive" for the most part. Doesn't look so unresponsive here, does he?

Perfection is...

PERFECTION IS...

Physical therapy four times a day,
respiratory "thumping" three times daily,
catheterizing three times daily,
noting output on the calendar
along with his head circumference
measurement taken once a day,
in case "they" ask, and so they will know.
I know when something is wrong
with my baby. I know by instinct,
but they need the facts.

Feeding every three or four hours,
noting input and length of time for feedings,
only to note the output he throws back up.
Medicines remembered
and given on time, doctor
and therapy appointments met cheerfully.

Time for cleaning the house, and
preparing nutritious meals
for a two-year old,
and appetizing food for myself -
who's never hungry.
Time for umpteen loads of laundry a day,
and real perfection would be
to get that laundry folded and put away.

Time for Jeremy, Jacob, and me as a family,
time to laugh and enjoy the good things,
time to make good things happen
and time to recognize the good things
when they do happen by themselves.

Time for studying the Bible,
and reading to the kids,
and playing, and praying.
Time for smelling the roses,
and seeing the rainbows,
and taking the time to share it
with the kids.

Time for baking cookies,
making the beds,
and making memories of love,
a happy home, cookies and milk, and traditions.

I know the expectations
I put on myself are nearly impossible to meet,
and I know I shouldn't feel guilty, but I do;

But that's what perfection would be.

Reality is...

But Reality Is...

Physical therapy 3-4 times a week
instead of 3-4 times a day;
he'll probably lose all chances of walking
because of me.

Respiratory "thumping" once in awhile,
and only because Jeremy
likes to watch and he reminds me.
Catheterizing regularly,
because I live in fear of him
filling up with pee,
but it's time consuming -
I always forget a diaper,
the Betadine, the wash cloth,
or the cup to catch the pee,
so I can note the output.
But then I spill it,
or Jacob's leg kicks in spasm,
and he spills it,
or Jeremy dumps it
in order to be helpful.
Measuring his inputs,
his outputs, his head circumference
is an internal daily battle of will -
they want to know,
they want to know, they want to know.

Feedings are every 3 or 4 hours
like they're spose to be,
but it never seems as if his hungry.
He doesn't cry for food,
and I struggle to remember
he needs to eat.
It takes an hour,
sometimes two and then he vomits.
Again. More laundry.

Medicines are remembered sporadically,
and usually after he's asleep;
I remember the doctor's look,
as I contemplate waking up the baby -
neglect neglect, I just know he's thinking,
I'm a rotten mother,
cause I can't even remember the thrush medicine.

Doctor appointments are met
only to be sent to another,
or back into the hospital.
Therapy appointments are made
only to be given more ungodly things
to do to him at home; I have just tons of time,
you know, and how am I spose to do all these things
to a baby who sleeps most of the time???
Could the plastic surgeon, the urologist,
the PT, the pediatrician, the OT, the heart guy...
could you just all get together
and let each other know
what you're asking of me and this one little tiny baby???
I have to, I have to, I have to -
Jacob needs to have the best chance possible,
but I hate it with all my heart,
even as I smile and make it a game with Jeremy and Jacob.

There is no time to be a family,
to laugh and enjoy the good things,
because we're just scrambling
to get the basic needs met.
Jeremy "helps" - the only way
we get to spend time together,
is in caring for Jacob and his mountain of needs.
Jeremy's time with me
is when Jacob is asleep, so the laundry
sits and waits in vain.
We get our cookies done together,
but his "help" requires all my patience,
and I am very short of that.

And where there is time,
there isn't enough energy.
If I sit down to read to him,
I end up reading silently,
cause even my voice is tired.
And I don't dare make the beds...

I'll fall in.

.

First Month w/Jacob

My First Month With Jacob

I was crushed with heaviness, the dead weight of his crippled body weighed heavily in my arms, and the weight of the responsibility of his future weighed heavily in my heart.

I sought relief foolishly and stupidly, drinking myself into oblivion several nights in a row. Not achieving my goal even so - the mothering part of me refused to let me sleep, knowing I wouldn't wake up to feed him.

Too many thoughts of terror for his future, wondering what it all meant, and resenting the fact that everyone seemed to think I could it alone, and that they didn't seem to see me falling apart.

One night I left the house - with two sleeping babies in it....
Me at the bar down the street. Tested the taste of freedom and irresponsibility, as I rehearsed the story in my mind to tell the authorities in case my house burned down with my two sleeping babies inside.

I returned home, drunk and nervous, praying they were okay, but half hoping it was all over. The thought of the authorities didn't scare me half as much as raising them alone did. They were okay, but as I began to sober up, I scared myself half to death over what I had just done - leaving them alone. For 4 hours, even tho I could see the house from the bar.

It was my third night of drinking, and not sleeping, and something was loosening within me. I watched Jacob sleep, the stillness of his body jarring my senses as always. A paraplegic baby, even asleep, looks paralyzed. I sat there, bar-soaked in the smells of alcohol and cigarettes, and wondered what I was becoming.

Evidently, a drunk, alone, and not surviving well at all. I had to find another house within the week, cause the one I was in belonged to the church and they just hired another pastor who wanted it. There was no money to move, I had just quit my job in order to care for both my babies, and welfare hadn't kicked in yet. I wanted to go back to work in order to escape, but Jacob's care was enormous and how could I afford it?

The next day was full of doctors, and a suspiciously supportive husband, who decided to come with me for the first time for the round of medical appointments. He told me he just bought a new car for his girlfriend, and the doctor told me Jacob had to go back to the hospital for surgery, because the shunt was not working. I shattered.

I had just spent most of the day, begging for help from my husband - money, finding a house for me, borrowing his pickup to help move our things, babysitting Jeremy, anything anything at all, and I'd take care of the rest.

But no. He kept telling me it was my responsibility. Up against a wall, asking for help from the father of my children... but he said no because it was my responsibility.

A doctor asked him how he was handling the stress of being separated from his wife, and coping with the situation of our handicapped child. The father chuckled, and said "oh pretty good". Man to man ya know. I nearly went blind with rage - he had the easy part!!! No wonder he was "pretty good". I nearly choked on my sudden hatred, but smiled prettily and strongly for the doctor. Far be it from me to show anyone that I was falling apart.

Continued...
.

First month continued

First Month with Jacob continued...

I drove the father of my children home to his girlfriend's house, as I listened to him tell me my car wasn't safe enough to drive, but he, the mechanic, wouldn't take a look at it. I began to understand that maybe, just maybe - whatever was wrong between us was not about me... that it just possibly might be about him.

He kept telling me I had to go back to work, but he was the one who had convinced me to quit my job so I could care for our babies. He didn't want our children to be raised by daycare.

I drove my baby back to the hospital to be admitted, two hours late. He's spose to have surgery in the morning. It was now 10pm, but I couldn't walk thru the doors. I turned back for home, unable to give my baby up to the big hospital machine once again.

Home again, home again, guilty as hell, now I was a mother denying her child medical treatment!

I sat down to read some medical reports, meant for Crippled Children's Service, to apply for their aid. One report said "poor mothering skills" during a visit to the emergency room 2 weeks back, because he wasn't gaining weight. It was the last straw for me that day - confirmation of what I already felt.

"Mother overwhelmed with the responsibilities", it also read.

I had always been a good mom and many times that is what kept me going after the father left - I had gotten my strength from Jeremy's obvious security in the midst of a separation and a pregnancy alone.

But now, it was down on paper - I was a bad mother, and even the doctor's had noticed it. I believed it so thoroughly that I didn't even consider the shock of Jacob takes more than a few weeks to digest. Not to mention impending divorce, quitting a job, facing welfare, and moving.

The fingernails were completely worn down from hanging on.

I called the father of my children and told him to come get them - at least he could put a roof over their head. He came, but I was hysterical, screaming and completely out of control.

He said he was going to take my children away from me... huh?

Didn't he tell me just today he couldn't wouldn't help me provide for our children??? Oh I get it. It's all a plot... make me think I can't take care of them, so he could get them... it all made sense to me now...even the doctors who wrote in the medical notes were in on it. He had beaten me into admitting I couldn't handle things myself, my confidence in my usual self was so terribly shaken with Jacob, I couldn't see or think anything out straight.

All I wanted was not to feel so god-damned alone in taking care of my babies.

He tried to calm me down, telling me I was being ridiculous - that I knew he couldn't take care of the boys, that he wasn't any good for them right now... ??? what??? This made me even crazier, because of his previous threats to take them away.

I had Jacob in my arms, wrapped in a afghan, trying to shield him from our voices. The father kept trying to make me put him down, but I was afraid to, convinced he would steal my baby away.
It was crazy. I had called him to take my kids. When he came to get them, I wouldn't let him take them away.

He said he didn't come to take them away from me, he came to help.

Help? I calmed down instantly at the word "help". Immediate hope at last.

I wasn't a dummy - he'd been gone a year, and a pregnancy and the birth of a handicapped child hadn't changed his mind about our marriage and in one way I admired him for sticking to his guns. I didn't want him home unless he wanted ME and by that time, I knew he didn't.

I asked if we could have joint custody, he said no. I asked if he could pay child support, he said no. I asked if he could help out once in awhile, he said no.

There it was again. Again. He may as well be dead. He left, because he couldn't deal with my returned fury, and I said a final goodbye to him in my heart. I knew I'd never again ask him for help, I was on my own.

Ironically, the lawyers wouldn't let us finalize the divorce until the father agreed to pay child support for Jacob. The father refused to agree, cause he said welfare, SSI, and Crippled Children's Service would take care of that. We may be married forever because of his warped sense of fatherhood - I was so ashamed of the man I loved... a love that had finally been hammered out of me that day.

I put Jacob down in his crib, smiling at the way I wouldn't let him go - I had held on to him as if he were a lifeline, and in a way he was. My love for him was the only thing I knew or trusted, even tho I was confused about my ability to care for us all.

I reread the reports. I knew some things for sure; I loved the baby who needed so much extra, and I loved the 2 1/2 year old who was getting shoved in the background. I couldn't go back to work under these conditions, because I was all they had. I wasn't enough for them unless I got my act together. I had to stop drinking, but I knew that would be the easiest part.

I remembered the mother part of me, who wouldn't sleep on that 4th sleepless night, so I could care of Jacob, and then I remembered God, and decided that He would just have to take care of the rest of it.

I held on to that thought as I let them talk me into the hospital - my baby on pediatrics, and then me, on the psychiatric floor, for "situational stress". I relearned how to eat, sleep, and think - and realized I had to take care of myself before I could take care of my babies.

I got out of the hospital, found a house, moved with the help of friends who didn't recognize or understand the new sharp edges surrounding me.

Then Jacob came home, I got Jeremy back from the grandparents, and we began to make a home and be a family.

(23 years later) Jacob was a month old in this picture and had been to the ER late one night, because he started to have "sunset eyes", which was one of the signs that the shunt wasn't working. Later, I read the medical reports and they had said he was a "Failure to Thrive" baby. Well, yes, he threw up EVERYTHING. But he sure looks tiny here, and not plumping up at all.

.

Moments

Checking Jacob in the middle of the night.
No diaper on this baby, the rash needs air,
and there's no fear wetting the bed
cause he can't pee on his own.

Jeremy stirs, and wakes,
"Is Jacob wet, mom?
I'm not cause I'm a big boy!"

Another time.

Jeremy is watching TV,
laying on his stomach,
head resting on arms and elbows.
I lie Jacob next to him,
while I take a shower.
When I come out,
Jeremy was holding
a bottle in Jacob's mouth
as he watched TV.

I said, "did you get that all by yourself?"
and he said "yup".
Jacob was hungry, so he took care of it.

So matter of fact. He's two and a half.

Again. I sit down to change Jacob's diapers.
Only to realize I've forgotten the diaper.
Jeremy appeared out of nowhere -
took one look at me and my exhaustion,
and disappeared again,
only to return with a diaper,
wash cloth and a kiss for Jacob's foot.
And a smile for me, and off he goes again.

Some more. We're walking out the door
for another doctor's appointment.
I left Jacob behind
while I carried out stuff to the car.
Jeremy looks back at me in surprise -
"Mom! don't forget Jacob!! We love him too much!"
.

Mothers of the Handicapped...

Mothers Of The Handicapped: It's no Accident By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger.

"To Beth Armstrong, a son, patron saint Matthew. To Marjorie Forrest, a daughter, patron saint Cecelia. To Carrie Rutledge, twins, patron saint... Gerard, he's used to profanity" and so on.

Finally, He passes a name to an angel and smiles, "give her a handicapped child."

The angel curious. "why this one, God? She's so happy."

"Exactly", smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you", said the angel.

God smiled. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "selfishness? Is that a virtue?"

God nodded. "if she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman who I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. when her child says 'momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset for her child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in the air..

God smiled. "A mirror will suffice".
.

My Response...

My Response to Erma's Poem

Gosh, Erma, how lucky can I be? Nice way to sugar-coat the situation. I only hope my child grows up to feel so lucky. He was born handicapped in order to make his mom a better person?

Sorry, Erma, but I can tell you haven't had a hurt child. But at least the story patted my ego a little bit.

One other thing - I just can't imagine God sitting up there and deliberately choosing me for this disaster. He can't possibly want such pain for me OR my child.
.

Jacob Smiled

Jacob Smiled

They put the fear
of mothering a vegetable
in me before he was born.
As a result - there was a conflict.
My instant love vs. sensibility, responsibility, ability.

It's funny how mother love can change things,
for he was perfect to me.
It always surprised me when a doctor
or therapist spoke of concerns concerning hearing, sight, intelligence.

It didn't matter to me - as long as he smiled and knew who I was.

I wondered why they didn't just ask me how I felt about him.

It seemed they needed reassurance far more than I did.

But what was it that I saw?
I'll never really know or understand,
or at least I'll never be able to find the right words to explain.
I just know that I have never loved anyone so perfectly.

He had a label even before he was born,
but I waited for the first smile - cause vegetables don't smile.
.

In Restrospect

In retrospect

After my stay on the psychiatric floor, I had a little secret that helped hold me together. I had regained enough common sense to know that I had to take care of myself in order to take care of my kids. But I also realized that if Jacob didn't know me enough eventually to know that I existed or that Jeremy existed - caring for him would be impossible for me. Maybe it was selfishness, expecting recognition for all that he required, but I knew myself well enough to know that caring for him physically would be hard enough, much less emotionally, and socially. I loved him, but I had the rest of my life to consider, and that of Jeremy's. I couldn't see myself sacrificing our lives for a vegetable.

Understand that even before he was born, they were saying he'd be a vegetable.

In the month after he was born, I was the vegetable. After that first month, I began to know that he wasn't as bad off as they said. He wasn't totally motionless, deaf, or retarded. There was something to him. It wasn't that I had something against mentally challenged people, or paraplegics, or people with handicaps. My motherhood accepted him as he was and I loved him with all my heart. It was the rest of Jeremy's life (and mine) that I was thinking about.

Although they scared the hell out of me about him before he was born, it was I who thought about having a baby for the rest of my life, an adult baby, and what would happen to him after I died? As crazy and disoriented as I seemed to everyone - it was because I was looking not only at the present, but also the future.

So his smile was incredibly important to me. I knew even before the first smile that he was a person, and he was everything to me, but his smile was a public notice that he was okay. Even if he was okay only to me.

I remember the first smile. Jeremy and I were baking cookies. In between sheets of cookies, I had the brilliant idea of trying baby food on Jacob, to see if he could keep that down any better than formula. It was one of those rare moments when I saw him with "normal" eyes and trusted motherhood. So we tried some rice cereal and Jeremy had a try at feeding him too. After we finished, Jacob kept watching Jeremy prance around the kitchen, and every time Jeremy approached Jacob, Jacob smiled.

Jeremy couldn't understand why I cried.

Jacob still threw up.

The second time he smiled was for Dr. Seppa, who looked over at me and said "It's nice to see that, isn't it? Makes him a person".
.

Child of Mine

Child of Mine

Although you see the world different from me,
sometimes I can touch upon the wonders that you see;
And all the new colors and pictures you've designed,
Oh yes, sweet darling, so glad you are a child of mine.

You don't need direction, you know which way to go,
I don't want to hold you back, I just want to watch you grow.
You're the one who taught me you don't have to look behind,
Oh yes sweet darling, so glad you are a child of mine.

March of Dimes Telethon -1983-84 Jacob was filmed in a segment with the above song.
.

Poor Little Thing

Poor Little Thing

I brought Jacob home from yet another surgery -
my paraplegic, possibly retarded child.
My mother-in-law took him from me
to show her friend
who commented on how pretty he was -
thought he looked normal enough, too.

My father-in-law said,
"Yea, but you wouldn't believe
the problems this poor little guy is gonna have".
I know they love their grandson
in a special way because he is handicapped,
they love him even more - it wasn't a cruel remark.

But for me - it was like hitting a brick wall at 60 miles an hour.

Pity.

He can't grow up hearing that kind of shit.
.

Jeremy

Jeremy

Jeremy, you are the best big brother
any little brother ever had.
You have such a sweet, loving heart.
Somehow, your 2 1/2 year old mind
has grasped the fact that Jacob is different
and you are extremely sensitive with him.

My heart smiles when I have to answer the phone
while doing Jacob's exercises
and I see you move in my place
to finish the heel stretches, so carefully and so surely.
And when you say,
"mom, if you get the yellow bathtub,
I'll wash his tummy for ya!"
I keep making promises to myself
to spend more time with you,
but I'm so tired.

I just hope you can see
thru my exhaustion
at all the love I have for you.

I am one lucky mother, because of you, Jeremy.
.

23 Years Later

(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 were 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.
.

He had his moments...

(23 years later) After the 5th shunt surgery, where they used an unusual shunt than normal, it finally started working. Too well, because in this picture yuo can see how sunk in the fontenelle is, and the ridge of his skull running down the side of his face is showing. Babies have a "soft spot" in in the middle of their heads, on top, and his had been too full of pressure before this shut, which made it hard, and not good for him. After this shunt, the fluid drained so well, that the soft spot was actually down touching his brain, so that he looked like he had horns.

And?

He stopped throwing up!
.

To the Doc

To the Doc

I said jokingly;
"Is there a shot you can give him to keep him a baby?"

You misunderstood, and scared me by saying,
"It would certainly be easier to keep him a baby, wouldn't it?"

Another reference to his future.
I wasn't thinking of his future - I just loved babies.
.

The Day Before...

The Day Before

Jacob's been home for 2 1/2 weeks this time -
the longest yet.
He's doing better than ever;
I can feel it in my bones.
So I'm busy, busy, busy
making my house into a home.
Practicality comes back to my brain -
finally figured out that the diapers,
the diaper pail, and the cathing paraphernalia
should all be near the changing table,
rather than 3 different rooms.

I try to look thru Jacob's eyes -
hanging bright posters up wherever he is planted.
Rainbow makers in the windows
make dancing colors on the walls,
and a special spot for therapy.
Too busy moving furniture,
and cleaning to pay much attention to my children.

Finally, all done and exhausted -
his last feeding at 10:00pm
Hurry, little one, I'm tired.
But we watch the aquarium
in the darkness
and once again the peace enters my soul.
We fall asleep in the rocking chair,
but his vomiting wakes me up.

That old familiar dread washes over me.
Please, baby, don't be sick again.
I started crying, frustration,
worry, and exhaustion
settling back down into my bones.
I held him up, face to face
and told him
"I'm NOT going to call the doctors tonight,
I don't want to let you go".

I cleaned us up -
threw the dirty clothes
in the handy dandy laundry basket,
and checked the bag meant for trips
back into the hospital...
Everything's there -
did such a good job
of organizing my life today.
.

The Night Before...

The Night Before

I go to bed planning
the speech for the doctors.

I want to know why
my baby is having so much trouble.
No more surgeries until I understand why.
Should I take him to Seattle,
how is he to make any progress
when he's always recovering from "surgery shock"?
If we don't get going on this,
won't his "possible" or "mild to moderate"
brain damage be more likely?

Or is this something
that will never change -
surgeries every so often?
Just tell me what to expect
so that I can adjust and adapt.
Cause I will, you know.

I felt brave and strong,
ready to fight for my baby.

Finally.
I fell asleep,

smiling at a
earlier memory this evening.
When I changed his diaper
on the changing table,
I turned away to wash
the cathing stuff at the sink.
When I turned back to him,
he had "creeped"
to the edge
of the changing table.

It thrilled me to have
a "normal" worry for a change....

"Don't leave your baby
on surfaces he can fall from".
He was getting strong enough
to move around in a fashion.

A "normal" worry felt so good!
.

The Next Morning...

The Next Morning

Jacob is crying
loud enough to wake me!
Another big step,
normally his cry is too weak to hear.
He's starving!
8 ounces and it only takes 20 minutes,
a miracle for him!
We burp and play -
and no vomiting.
I'll measure his head later,
postpone the bad news...
maybe last nite was a fluke.
I went back to bed for awhile.

Got up to let the neighbor's little girls in -
I babysit for her.
Glanced over at Jacob
laying on the sheepskin
on the couch.
He's moving a little,
but he'll go back to sleep, i think.
Or he'll be content
watching the aquarium -
it facinates him.
I told the girls to watch Sesame Street
and layed down for a few more minutes.

The kids are getting noisy,
wonder why they haven't woke up Jacob yet.
Maybe they're playing with him -
they love to entertain him
and do his exercises for him.
I walked into the living room,
straight to Jacob. Still asleep?
In this racket?
All of a sudden,
I can't breathe.

Because it dawns on me that he isn't.

Breathing, I mean.

I don't know how to end this one.
.

August 22, 1983

August 22, 1983

I came back
from leaving my dead baby
in the hospital.

I went to my room
and fell to my knees.
Someone pulled me
back up and said
"You can't do this
to yourself, come on, get up".

I can't?

So began the mask of grieving...
making sure everyone else is okay,
and thinks you're okay, too.
.

Dream

August 22, 1983

Dream

Black hands with claws were coming out of the ground, trying to pull me under. I wanted to go, except the hands were so horrible and repelling. They beckoned for me, promising me peace in hell, and I kept coming closer and closer. But something held me back.

All night long.

Laure, Jacob is...

"Laurie, Jacob is dead".

Words.
Killing words.
Words that killed.
Words that crashed into my head,
crashed, burned, exploded.

Exploded into
too many pieces
that couldn't come back together
to make sense.

I am Laurie.
Those words were said
to me by the doctor.

Because my baby's name is Jacob...
... he must mean me.

Typing the words don't help.

Not one bit.
.

The Damn Funeral ...

The Damn Funeral Home Guy

Shall we go pick out a casket?
We have some lovely ones for infants.
Suddenly I knew what wooden legs feel like...
they feel like wood.
Big, huge room, cold and dark
until he finds a light switch.
Still, big, huge, cold and dark.
Full of coffins. Everywhere.
The smell of expensive wood.

My legs must be made of cheap lumber,
cause they're not working well.
Fancy one lined with satin and lace,
it takes my breath away.
I try to imagine a dead body
lying in such silly splendor.
For what reason?

Typical marketing skills
are displayed even here,
first the senses are bombarded
with the expensive beds for the dead,
and there's a large selection.
Appealing to the guilt factor, I suppose.
Then we approach
the "reasonably" priced caskets,
the ones he feels would be
more appropriate for me -
I looked at him with dead eyes
and wondered if he could recognize dead
when he saw it.

I really hated this man
for talking so alive-ly with me.
At last we came to the tiny caskets
and I remembered why I was there -
but why am I looking at caskets...
my baby is being cremated.
Habit I suppose on his part,
to show his wares.
Boxes for babies -
my baby can't be put in a box
to be put in the ground.
His life alive would have been boxed in -
in a wheelchair -
in death he will be free.

No thanks mister, no box for my baby -
cremate him and I'll take his ashes
and let him fly where he wants to go.
.

Pastor, please read...

Pastor, please read;

Psalm 28:7 the Lord is my strength and my shield; my heart trusts in him, and I am helped.

Jacob, your name meant "instrument of God". I came to the Lord when I was pregnant with you. I am so thankful that I did, because where would I be now? Through God, I was able to love you the way I did, so totally and completely that your handicaps became small to me. I was happy with you, despite all the problems. Even tho there were questions as the the extent of brain damage, I knew you were present and accounted for, and were going to surprise us all. All those times in front of the aquarium late at night, our unspoken conversations told me we were gonna be okay. I was so looking forward to watching you grow. But all I have is your smile, and you discovering your hands, as you reached for my face when I fed you. You were a happy baby, and we were just beginning, weren't we? I know you would have been happy with me and your brother, but for some reason, you died, and I don't pretend to understand why. They say there's a reason for everything, and the reason you were born is obvious to me. You completed our family, with Jeremy and I. I will just go on faith that there was a reason for you to die. You're healthy now, and I will see you again. I love you, sweetheart.

Mom
.

I never ....

I never in my wildest dreams
thought he could die, for god's sake.
Unbelievable and just plain insane.
I was just worried about impending divorce,
stupid shunts that wouldn't work
in Jacob's head,
and being a good mom for both my boys.

Hydrocephalus and myelmeningeocele
meant nothing to me.
He was my baby
and that was all there was to it.
Possible retardation, deafness
and will never walk?

Well, we'll just do the best we can.

It might be a little harder
under the circumstances,
but I began to know we could make it.

So, dear baby,
why did you take the doubts away,
convince me, make me rise to the challenge
during those times together
in front of the aquarium,
when I drank you with my eyes and soul...
only to die?

Why replace my love
and growing confidence
with this hell of love and loss?

October 1983

October 1983, Two Months Later



I think somebody.

should call me.

and tell me.

he's still dead.

Prison of Grief

The Prison of Grief

I am locked in the walls of grief,
becoming a prisoner
the instant I heard the words;
"Laurie, Jacob is dead".

I wanted to shake my head,
to walk away, it wasn't MY Jacob,
or my doctor saying those words...
and I had thought so well of him too.
But there he was, teasing me cruelly,
and I couldn't walk away from the joke.

I wanted to cry
but there were too many people
standing around,
too many strangers.
I wanted to ask questions,
but I was afraid to break
the hushed atmosphere,
and of sounding silly,
or too clinical for a mother,
rather than properly bereaved...
whatever THAT is.

I wanted to take my baby away,
home, where I could check to see
if he was really dead.
A day in my home of not waking up,
or not crying, or not moving
would have convinced me more
rather than an ambulance taking him away,
or a doctor, a hospital, a funeral home.

I acted as a trustee
within the prison walls,
taking care of the details,
talking and smiling at the right times,
and comforting those who came to comfort me.

Smiles on my face
unable, un allowed to express
the ugliness and the unfairness of it all.
.

A Pediatrician

A Pediatrician


Memories.
So confusing, but so important.

Thank you
for keeping it all together for me.
For filling an empty spot
in my life with your support.
For sharing some of your own pain
with me and for your gentle prods
to keep me from drowning in my own.
I became stronger,
partly through example,
and partly because you believed in me.

Thank you for the time
you said there was too much love
for my baby for me to "put him away",
as others were suggesting.

How badly I needed to hear
that for my baby.
For telling me that it was nice
to see my confidence growing
as Jacob's mom,
you'd been worried at first,
but no less than I.
I lived from appointment
to appointment at first,
because I knew you'd say something positive.
You once said I was a strong lady;
how shocking,
but how badly I needed
to hear positive things about myself.

Thank you for being there
when he died.
You did everything just right,
however right can be
in such a wrong situation.
Quiet words and silence,
gently pushing
to get reality going again.
The memory of that morning
is bearable because of your presence,
helping, once again,
to keep the pieces from flying all over.
There will always be a special place
in my heart for you,
for sharing what you have with me.

Thank you for a conversation weeks later,
reassuring me of my motherhood,
and my mothering.
For not embarrassing me
at a very open and vulnerable time,
for being honest and careful.
For understanding
my neediness and craziness.
Thank you for allowing me my process,
for trying to understand
and being patient with it.
For not judging what's right or wrong.

You are very special to me.
.

I took Jeremy...

Dream

I took Jeremy
to the doctor
with a simple cold.

The doctor sent me
to the bathroom
telling me to pee.

When he came back,
he told me Jeremy had died.
.

The doctor told me...

Reality

The doctor told me
to go to the bathroom
("void", actually is what he said).

When I came back,
he told me my unborn child
had hydrocephalus.

Maybe if I hadn't gone potty...?
.

Don't Ask Me...

Garbage

Don't ask me to be brave
or tell me to be strong.
For then I have to live up
to your expectations in order
to get your approval and support.

Only sometimes brave,
perhaps appearing too strong.
I just don't know
how to fall apart with dignity,
I need to be in control
or I'll lose control.

I am fine when you ask
because I sense your withdrawal
and disappointment
when I dare to tell the truth.
You seem stuck
in a spot of embarrassment
and indecision
and I am left
with having to rescue you -
with my guts hanging out.
You are uncomfortable,
don't know what to do or say,
so you stay away.
You'll never learn that way.
It's always up to me.

But I am unable
to make excuses
for you anymore.
I'm not interested
in skin-deep "nicey".
Nor will I allow you
to put me on a pedestal
where I have to live up
to the image of being an inspiration,
because I've been through so much
and seem to be doing so well.

The fact is -
you don't allow me
NOT to do well.

This is really separating the trees from the forest.
.

Pediatric Floor

Pediatric Floor

Memories.
So many, but in retrospect, so few.

Thank you
for listening to my "unloading",
the anger underneath
kept in check because you heard it.
You kept telling me how strong I was,
until I began to believe it.
You made me see my son with new eyes
by treating him so normally,
and also by letting me know that in some ways,
I was pretty lucky compared to some.

I'm sorry for the nastiness at times;
how angry I got when I had to convince each new nurse
that I did too know how to catheterize and pump the shunt.
I needed to be in control,
to feel like he was mine,
to take care of my own child.
That word, "bonding", so advertised,
so important, so hard to do
when one's baby is in the hospital
all the time with a bunch of nurses caring for him.

Thank you
for the time when I was
so discouraged and disgusted;
you encouraged me to ask the doctor
if I could take my baby home
while they got their heads together
with a decision about his care.
I learned an important lesson then,
realizing I did have a say about him,
and sometimes family time at home
was more important than the waiting game
played in the hospital.
We got to go home for the weekend,
and we were all sooo proud of me,
for speaking up at last!

Thank you
for welcoming me after he died.
For teaching that life does go on.
For understanding the need
I had to hold babies,
to be around those who knew my baby.
For allowing the tears,
and worrying about me.
For accepting my way of working it out.
And thank you for listening still.
.

It hurts....

My Baby Jacob

It hurts...
I'll never see another smile, the special smiles that made it all worthwhile.
It hurts...
I'll never hold him again, my arms will always miss him.
It hurts...
I'll never watch his brother give him a bath or kiss his foot again.
It hurts...
He never knew his daddy and his daddy missed knowing him.
It hurts...
Because I loved him so much.
It hurts...
Because I'll never know him as a child, a teenager, an adult.
It hurts...
Because he died, only a baby.
.

Platitudes

Platitudes

God only knows,
Only God knows,
I know God,
or does anyone really know God?

It's all for the best,
he's better off in heaven (the poor dear)
God gives you only as much as you can handle.
He knows you are a strong person.
He must love you very much to give you a handicapped child.

Or

He is testing you during this time, (fine, I'll flunk)
Only good will come if you let it (let it?)
All things work together for the good,
there's a reason for everything.

Or

God only punishes those who have sinned.
God saw that he could take care
of your baby better than you could.

My God must be different than theirs... cause to hell with all that.
.

Another baby???

Another baby?

No way!
Another baby?
Yes, today!

Beneath This Calm Exterior

Beneath This Calm Exterior

When my eyes are bleeding,
when terror scraps it's claws across my gut,
it's not enough to hear you say,
"everything's gonna be all right".

When my stomach spasms,
and thrashing does nothing
to keep the water
from closing over my head,
it's not enough
to be hauled up onto land,
and left alone only to die.

If I knew how to scream
maybe then you would hear me.
But my voice freezes,
terror takes my voice away.
I scream with my eyes
but no one can see.

In time, bravery grows to virtue,
submission descends to defeat.
Layer on layer upon layer,
I paint this cell
the colors that bring praise and distance.

But before you say
this house is pretty
on the outside,
remember that I clean the walls
by eating the spiders.

Unknown

23 years later: I did not write this and don't know where I got it. But I love it. It still takes my breathe away with it's accuracy of pain. If anyone knows where it came from, let me know. I believe it came from a book regarding abuse and it was focused towards men.
.

Not a card from Hallmarks...

Comfort is
not a card from Hallmarks.
It's a nice gesture, tho.
But all too often,
it's the end.

Comfort is
a hug or a drop-in visit,
even months later.
Comfort is being allowed
to talk about it.

Comfort is
not always God,
or prayer.
It might be again
someday for some,
but not right away...
not for me.

Comfort is
a caring presence,
even months later.

Comfort is
you talking about him,
so I know you don't pretend
he didn't exist.
.

A man and a doctor...

The Pediatrician

A man and a doctor,
a pediatrician in fact.
The first man I have spoken to
in a year practically.
Perfect.
I have a sick baby.

He walked into my room,
and I thought - oh no, not another one.
But my heart started,
and he left on a cloud.
Anesthesia effects?

Little by little,
he rebuilt my ego.
His job as the doctor
of his baby patient?
In all the pain and worry,
he was a positive thing
to focus on.
And how handy,
he was divorcing too.

I was waking up
from a year of non-feeling,
because my husband
had left a year ago.
I felt like a fool,
about sixteen again.
All of a sudden,
everything is gone again
because my baby died.
Does this doctor
have to go too?
.

Medical Slick

Medical Slick

How easily soothed was I.
"Your baby has some problems, BUT!"
My questions were ignored by some;
a social worker told me
there was information available,
"but it wouldn't be appropriate for me".
A doctor told stories
of other babies he'd seen long ago,
but told me nothing of my own.

Another said my baby
would be "just fine",
once the corrective surgery
was done and working properly;
maybe mild to moderate retardation,
but not to worry!

His heart stopped
during one of the surgeries,
no one knows why,
but they brought him out of it,
without further incident.

Yet another doctor says,
"I don't know".
His are the most frustrating
because it is hard
to ask questions
only to be told
there are no answers -
should I stop asking?
Doctors are supposed to know,
are they not?

What is inappropriate
for me to know? I am the mother.
Why does one doctor tell me
about babies of 25 years ago?
And how come another doctor doesn't know?
Only afterwards do I learn... 30% die.
That's a pretty big percentage...

huge...

...when one of them is your own.


(23 years later) This picture was taken after the surgery where he stopped breathing. I decided then that the only way to be a family was to bring Jeremy to the hospital too. I told the doctors it was the only way I'd bring Jacob in, cause we needed to be a family. You can't see it in the picture but both had been sucking their thumbs when they fell asleep, and they're little hands were laying next to their faces in the exact same position. It was adorable.
.

Jeremy not happy...

Not Happy Here

He mainly liked playing in the playroom with all the other little kids, some of whom were strapped to IV stands, or were on crutches. He was always so careful and thoughtful with them, jumping up to greet a newcomer, and handing them something to play with.

Course of Miracles

Oh good.

Course of Miracles
says neurotic people
are fearful, guilty.
Fearful, guilty, anxious
and tense about life,
because they feel alone,
apart from everybody else.
Two years of counseling
and no one told me.
I now have a label.

And I thought
it was just grief.
.

It should have...

It Should Have Been Different

I should have kept him at home,
where I could hold him
until I knew he was really dead.
It should have been me
who dressed him
in a tee-shirt and diapers -
not a stranger who put him
in a silly blue outfit never worn before.
He should have looked dead,
and not had all that make-up on him.

The last nights on this earth
should have been in his home
with his family -
not in a cold, stinky funeral home,
in a stupid bassinet, all alone.
By himself for the first and only time in his life.

It should have been different
because EVERY day,
I must convince myself that he is really dead.

Only the doctors and the funeral home know it for sure.
.

Please get him warm...

Please Get Him Warm

I told someone
how anxious I was
to get him cremated.
The delay was making me crazy -
his body was so cold,
and babies are meant to be warm.

He said Jacob wasn't really 'there',
anymore, so couldn't feel the cold.

Oh, but he was there.

Mom's are born to care
for baby bodies, dress them,
undress them according to the weather,
change diapers, feed them,
position them, bath them,
hold them just to keep them comfortable.

And he was so cold.
I knew cremation
would be the only way
to warm him up again.



(23 years later) His father refused to sign the release papers for the funeral home for 8 days. Finally, I told the funeral director about the kind of father he had been, that he hadn't been there for Jacob's life, so why did he have to be the one to "finalize his death"? After 8 days, they finally released him with my signature only.
.

I spent so much time...

Dear Jacob,

I spent so much time attending to your physical needs, keeping up with the problems, that I didn't really appreciate the time we had. I kept telling myself "later, when things calm down", but now I wonder what I meant by that. I know I did my best most of the time, and you were happy. It was such an emotional time for me, and it was truly hard to make the adjustments you forced into my life. I was so busy trying to keep Jeremy involved with us so he wouldn't feel neglected, but more than anything else - I was just tyring to keep our heads above water.

Despite the struggles, Jacob, there was never one instant when I didn't want YOU. In the beginning of the pregnancy, it was me I was hating, not you. I came around, sweetheart, and the last three months you were under my heart, you really grew IN my heart, too. The 3 1/2 months you were in my world were the happiest of my life. No one understands that very well, because of all the problems, but you filled up my world at a time when I desperately needed to be needed, and you made up a family again, you, your brother, and I.

Now, you're not here anymore, and I would give anything to have you back. I would do it all over again - holding you all the time because you loved it so much. I would let you sleep with me, despite your funny little noises. I wouldn't spend spend so much of our family time in the hospital, and I would ask more questions. And if I'd only known, Jacob, I would have laughed more. More than anything else, I wish I hadn't let everything get me down, so that when it came time for you to die, I would know that you had the best I could give you. My head knows that I did the best I could, but my heart wishes I had another chance to love you even better. I wish that we had had more time, for we were just beginning to "calm down", with confidence of survival and happiness. I never worried about you in the sense most people would expect, but I was sure worried about your mother. Every smile from you helped to convince me that we were going to make it, tho.

You're the one who taught me about loving unconditionally, about being a mother, about being a Christian. You were a new beginning, and a new life for me. You were everything to me, and some may say that is wrong, but, in retrospect, I'm glad you were now. Now I have to continue on with that new beginning without you, and it seems inconceivable... and hardly worth it.

I love you, little one, and I'll try to make you proud of me.

Mom
.

Apples...?

Green apples or red ones?

Need healthy things -
put energy back into my body.
Maybe vitamins too.
Chuck that thought immediately -
too many to choose from.

Green apples or red ones?
Making a pie would be nice -
which ones are good pie apples?
Two decisions regarding apples?
How'd I get myself in this mess?
Maybe I better go home and think.
Grief is impossible to live with.
That's the one thing I know for sure -

I know -

apple juice will suffice.

Tree-Top or store brand?
.

Faith

Faith

My faith took off
like a racehorse with blinders -
no distractions allowed.

Pure terror and need
developed it to provide me
with strength never known before,
after the father left me.

Jacob's death ripped off the blinders.

So did I have faith?
.

High-risk neighborhood

I must live
in a high-risk neighborhood.
The sirens scream by
every day and every night.
I don't think
I ever noticed them before.
During the day,
I recognize their presence
with a little prayer;
please, Lord, let there be
skill, hope and sensitivity
for all those involved.

If they wake me
during the night
I am angry at them
for waking me so rudely
and reminding me
that I have a dead baby.
It isn't the easiest thing
to go back to sleep, you know,
when you have a dead baby.

And during the evening,
when Jeremy is in bed,
and I am relishing
the quiet and contemplating
my choices for the night,
free from care-taking
when I can't even care for myself...
the sirens rip by once again,
and I am reminded
that I have no control.

Pain isn't enough
to tell them to stop,
love isn't enough
to keep the ones you love.

Ambulances are a fact of life...
And death, and sleeplessness.
..
.

Pac-Man Fever

Pac-Man Fever

This thing called grief
is chomp, chomp,
chomping away at me.
I am being eaten up alive.

Sideways Grief

Sideways Grief

It hurts too much
to think about my baby on purpose.
So I cry easily for every little thing.
The telethons for children
bring immediate tears for babies
in hospitals or braces;
the songs and the poetry
touching every nerve too close to home,
too close to the surface.
I give because of MY baby,
although I dislike the theory of telethons
and using hurt children to beg for money.

I cry at the McDonald's commercials
and especially for Hallmark cards.
I cry for Olympic winners and for the losers too.
I cry during church services,
rarely hearing the sermon
because of the struggle within.
The tears are for the emptiness
of my arms and the emptiness of my soul.

I cry too easily when I run out of milk,
or when I'm tired, or when the car won't start.

Life really isn't this sad or difficult, but I can't quit crying.
.

Grief is...

Grief is ... Sneaky

Just when you've convinced yourself
that you are finally getting a handle on it,
and patting yourself on the back,
smiling serenly at the compliments,
just when you are beginning to feel relaxed,
and let your guard down,
IT hits you like a mack truck.

Sirens in the far distance,
ambulances too close to home.
Helen Reddy's song,
"You and Me Against The World",
a March of Dimes commercial
with your baby in it, telethons for children.
A father holding the hand of his son,
a mother trying to control
the exuberance of her two young sons,
my son's "only" child ness.

Yellow roses and rainbows,
going to church,
May days and the days of August.
Another parent's new grief,
fresh and just beginning,
panic at another parent's resolved grief -
it seems too much like forgetting.

A pediatrician
and a walk past an emergency room,
babies clad only in Huggies diapers,
and sheepskin comforters.
Baby clothes in the department stores,
the sizes he should be wearing now,
and nursing nitegowns.
The pain is almost worth it,
for it reminds me that he existed.
.

Where is Jacob...

"Where is Jacob, Mommy?"

A bone-deep weariness
dims my eyes,
as I hear his question
for the millionth time.
Does he just want
to hear the story again,
or does he really not understand yet?

A grocery checker asks him;
"do you have any brothers or sisters?"
He glances at me
as he shrugs his shoulders, and says "no".

I smile, crushed by his answer,
pretending to not have heard,
as she looks to me for confirmation.

My dear little boys,
how you have complicated my life,
because I don't know the answers.
I only know that I love you
both beyond all boundaries.
Each one in a different way,
and you're each all the more special
because of the other.

Seasons of Grief

Seasons of Grief

The things of nature
no longer go unnoticed,
the turning of the seasons
pass through my bones,
and stomp through my brain.

Spring is the time
for fresh and new beginnings.
My son was born
in the spring,
when the lilacs were blooming.

Summer is a time
of immobilization.
The air is hot and still,
I am lazy.
My son was in the hospital
alot during the summer months,
and I keep reaching for his presence
by thinking I am forgetting something.
I can't seem to remember that he's dead,
and I search the house
over for a diaper bag
everytime I leave the house.

Fall is a time of winding down,
a time of endings.
The things of nature
are dead or dying, as did my son.

Winter is cold and barren and empty.
Like me.
.

March 1984

March 1984

Dream

I knew my baby was dying and I promised him that i would not leave him while he still needed me. I promised to hold him as long as it took. But it got too hard on me to watch his life drain away and I left him alone on the sheepskin. I returned to find him writhing with pain, getting himself into the most horrible pretzel-like positions possible. I grab him up, and he would calm down instantly, dramatically telling me how much he needed me to be with him. As I untangled his body, and promised I wouldn't leave, he would smile peacefully and close his eyes, preparing to die again. But I would panic and leave him again. Over and over. The dream never ends, he never finishes dying because I kept leaving him alone - in pain.

Death Wish

Death Wish

Why this fascination for death?
The constant pull?
Mine is not for feeling sorry for myself reasons,
meant to find out who really cares
or to make somebody pay for all the pain I've been in.

So why this wanting to die?
Driving by the river,
feeling it's flow,
the pull of life underneath.
My hands grip the steering wheel
as I remind myself
of earthly responsibilities to Jeremy.

But then I think of Jacob.
Is my love for him no less?
I feel as deep a need to be with Jacob,
wherever he is,
as much as I need to be with Jeremy.
My family is not together
and I am torn in two once again,
as we were during the days
in the hospital.
Two of them and only one of me,
it's not enough.
I love them both,
the little one, so small and helpless,
and the big one,
trying to be so grown up f
or his mommy and little brother.

Jeremy is alive
and I can see that he is okay.
Maybe the longing, t
he pull of the river
is a searching to know.
Where is Jacob?
Did it hurt to die?
Did he need me to say goodbye?
Is he safe and warm?
Does he think I left him?
Does he think I'm ignoring him?

I need to know what dying was like -
to know that it wasn't horrible to die alone.
To know that he's really okay,
and better off where he is,
rather than in my arms.

I need to give my mother's stamp
of approval on death for my baby.
Motherlove cannot believe,
cannot release until I know
he's really better off dead.
I want to give wherever he is
my stamp of approval
until I can take my proper place with him.

I want us all together, one way or another.
.

Breathing

Breathing

The pain of Jacob
makes it hard to breathe
sometimes.
I try to calm down
with deep and slow breaths.

Concentration on this
so-called natural process
only reinforces the fact
that my son stopped breathing.

I am in a hell on earth
of my own making
because he stopped breathing.
In fact, all my senses are numb.
Maybe I'm dying too,
in a different way.
It would only be appropriate.
.

To the father...

A Letter to the Father
of My Children
About the Death of Me

I keep myself alive
because I'm afraid
you'll tell Jeremy t
hat it's just as well -
that his mommy's crazy,
that he's better off without me.

He would be a baby in grief,
and since you don't even begin
to understand or accept your own -
much less mine, you wouldn't be able
to help him come through
my death intact, and healthy.

So I write, hoping that somehow,
someone will understand
what it's been like, alone.

I know my son
would need someone special
to love and support him
in his time of grief
if I should die.
He would need to be told
over and over again
that I didn't stop loving him by dying,
but that I had a sickness called
"lack of caring enough to live".
He would need to be told
over and over again that it wasn't his fault.
It's so hard to keep up
with his emotional bandaids,
much less his physical ones.
Specially when I need
the biggest bandaid of all.
But more than that -
I need someone to put it on me.

I resent not being able
to stop the pain because
you'd be a lousy parent for Jeremy -
thrilled because I was finally out of your hair.
.

Suicide

Suicide

My hand was stayed at first by guilt,
I believed what I had been taught,
suicide is a sin in the eyes of the Lord.

I believed what others told me -
suicide is wrong, selfish, lazy and crazy.
But then quilt wasn't enough.
The sin of suicide didn't scare me;
as far as I was concerned,
life alive was a living Hell,
and I didn't think eternal hell
could be any worse.
And besides, the last thing
I needed was to be told constantly
that my feelings were wrong,
selfish and crazy.
I just wanted out.
My baby was dead,
and evidently, in living,
I was a bad person
and I was selfish,
crazy and lazy to boot.
Crazy I believed.

Luckily, the conflict
between right or wrong protected me,
the attempts doomed for failure,
becoming desperate calls for help instead.
Safely past danger now,
my conflict is over, the debate ended.
I cannot believe
God didn't understand.
I cannot imagine Him saying
"off to hell with her,
she should have come to me
for comfort,
but she chose her own way
and now must be punished".
.

As my excuse...

Grief as my Excuse

Don't come near me, I'm afraid to be close.
Don't talk to me, I'm afraid of hearing.
Don't make me laugh, nothing is funny.
Don't make me cry, I'll never stop.
Don't say a word, I will doubt you.
Don't touch me, it makes me need more.
Don't hold me, it makes me want more.
Don't be good to me, because I can't trust you.
Don't be nice to me, it reminds me of betrayal.
And for Gods sake, don't love me.
Cause everyone I love leaves.
And there I would be again.
.

Couselor Roulette

Counselor Roulette

The first one made me mediatate
on my baby's death.
Had to say goodbye to him weekly,
before I was ready.
It nearly distroyed me -
he'd been gone for only a month,
and I didn't quite know where he was.

The second one
said I had to pull myself
together for Jeremy's sake.
He didn't consider the fact
that I COULDN'T pull myself together -
he just made me feel worse
by adding the guilt onto the deadness.

The third one was Kelly.
He tried to understand.
He listened.
He cared.
.

Counseling

Counseling

Sometimes I hate to come in
and other times I can't wait.
Sometimes I hate you,
and other times I love you,
but most of the time
you're 'just' the counselor.

Sometimes I think
you should pick me up
and slam me against the wall
to knock some sense
into my stubborn head.
My continuing need
for you scares me,
so I make rebellious stabs
at quitting; but don't let me, not yet.

Sometimes I wonder
what is wrong with me,
then I wonder
if something is wrong with you -
you don't seem to want me.
You keep telling me
how it's supposed to be,
but I wasn't trained up that way.
I try so hard
not to feel ugly and rejected,
so we can work on other stuff.

Other times I think
you should just take me
into your bed
to restore my confidence,
teach me about trust,
and tell me tht nice guys do exist.
and last but certainly not least -
make a baby in the process.
Then I would be all fixed up.

My baby is still dead
and I am still afraid of many things.
What have we accomplished
in building a fear of life without weekly appointments?
.

April 1984

April 1984

Dream

I was searching for something in the fog, when I came to an office building with something like the McDonald golden arches over the building. At the top of the arches there was a sign that said "Spina Bifida Expert". I walked in the door with a great sense of relief - thinking that finally I would get some answers. The doctor was surrounded with a misty glow, and he would not tell me his name, nor did I recognize him. In response to all my questions (none of which I remember now) he said, "I don't know", or "We dont' know". Finally he said "We all did the best we could... even you, Laurie". I left the building and threw up outside his door.

23 years later: when I woke from this dream, I really did get sick. I think I was purging guilt.
.

Easter

Easter

The pain is choking me tonight;
it occurs to me
that I am consciously
concentrating on breathing.

I search the tunnels for a reason,
trying to understand
why my mind butterflies
from one image to the next
without resting.

The Easter Bunny
just finished her duties.
There should be two parents
hiding the eggs,
and there should be two baskets
because there should be two children here.

The meaning of Easter
eludes me this year,
my still fairly new faith
requires rejoicing,
but I feel only suffocating pain.
I realize why I couldn't or wouldn't
explain to 3 year old Jeremy
the meaning of this day -
fearing his question
"oh, then when will Jacob come back from dead?"

Because I wonder the same thing.
.

I pretended to accept

To Whom It May Concern:

I pretended to accept the situation I was in. But my inner rebellion continues. My common sense, my duty as a mother, all told me not to let the disaster spoil my own life or that of Jeremy's. But common sense and duty doesn't always prevail when the heart is broken. I learned how to act on the surface as much like my usual self as possible by smiling, by talking, by seeming to take an interest in what went on around me. Underneath tho, the rebellion burned, the flames easily fanned by resentment. Resentment for the situation I was in and also resenting my friends and family for not seeming to understand - when it was MY surface acting that kept me from having any real contact with people. There tears were always sooo close to the surface and I couldn't spend the rest of my life crying my eyes out. Some felt the surface was shallow, some felt the real me was going crazy, and yet others were disgusted with the cold, hard shell that made me unreachable. Yet it was necessary to maintain that shell, for it contained a cord of steel that kept me strong enough to continue on with my duties as a mother. It was not possible to share with anyone my inner state. Partly because the hurt and turmoil had no words, and partly because any attempt was easily ignored or explained away with pious platitudes.

Some admired my fortitude, my dedication, but I simply did my duty blindly. I cleaned my house and played with my children. I took care of their physical needs and sometimes managed their emotional needs. I made appointments, decorated my children's spaces, attended Bible studies, provided meals. I remember that time as being at my most organized, but many times I found the scissors in the refrigerator, or I would head down the hall to put the milk away... in the bathroom? I was a near genius at providing a stimulating environment for my handicapped baby and my 2 1/2 year old, who was sometimes restricted by our limitations brought on by Jacob's care. Limitations consisting of doctor appointments, hospital stays, therapy, and the energy/time consuming care of his baby brother. We were happy as long as we were together, and uninterrupted, but the interruptions were guaranteed. My hands did the work, my brain did the organization, and my heart did the loving. I was running on guts and instinct.

My emotions were at war. Or to be more accurate, they were on hold, trying to get out in some expressible way. I was afraid of really going crazy, or of being accused of being crazy. The aftermath of being a physiatric patient. Physical exhaustion chose to express itself as despair, and as a great mind-consuming, body numbing apathy.

The only time I felt alive and real, were the hours I spent alone with my baby. Only my little baby, who would watch the dacing lights and the colored fish from the aquarium in front of us - would make me feel everything would be all right. Alone with him, I could cry freely - with no one to foolishly tell me to stop crying, no one to pity me, no one to judge me or evaluate whether I was "holding up" or not. Eventually, thru the tears, I would have to smile at him and marvel at his simplicity and my love for him. It was such a complete love, pure and unconditional, uncomplicated by expectations. I could cry at his beauty, and cry for the loss of perfection for him, wishing I could somehow take it unto myself and protect him from the future, but then he would look at me, silently and still, and somehow I knew he was happy and wiser beyond me. Content. With each and every smile, something was freed within me and I was beginning to learn to take each moment as it came and not to worry about what I could not change or control.
There are no words to express the peace I felt during the time together in front of the aquarium, late at nite, in the rocking chair. During the day, I would look forward to this time, so I could just watch him. Somehow, the stillness of his paralyzed body stilled my mind from the constant swirl. But only during the nite. The stillness of his body during the day meant only constant worry.

The sorrow was inescapable. I had given him birth and he was hurt. He was my fault and my responsibility. He became my heart. His presence in my life made me realize I had to be the best I could be, simply to survive, and that would be enough. His simple "BEING" loosened my rebellious spirit, somewhat, as time went on. Enough to quit asking "why?" so constantly, but I would NEVER accept it. I could only hope that my child would never hurt because of his handicaps - physically, emotionally, and socially. I hoped that I would have the wisdom for raising such a child, and help him to grow up strong.

His handicaps shook my religious faith clear down to the very bone.

Just when I began to let it be, to love him without the rebellion and the questions, to know that we would be okay - he died. He died. Dead. Died. I don't understand and I have a feeling I never will. His presence made the struggle worth it, because of his simply serentity. Now I have to continue on with a different kind of struggle, without the reward of having him in my arms at the end of the day. I am forced to accept his death by the mere fact of his goneness.

But what does dead mean when he's still so much with me? Are our memories all that wonderful to have - when that's all I can have? The pain is always with me, hidden a little deeper as time marches over me, but it is always there, ready to be tapped. There is nothing to do with it.
.

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 spose to be romantic;
when stars were stars,
the moon was just a moon,
and the darkness was a cover for secrets.

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 laundrymat 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 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 religous 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 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
quardian 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 he's 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 cathe him on time,
cause we were too long
at the phyical 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 desparately
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 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, still 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 spose to have the grace to accept, understand, pray when the going gets rough? Maybe my faith was never there in the first place - frauded 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 were 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 seemed to think I needed "preparing"
if there was a Spina Bifida baby.
He were my first surprise and they were right.

I would have been okay
if a familiar lady doctor hadn't come in
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.

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 be just 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 unsheath 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,
unacceptance, 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

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.

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

How many times have I screamed
"leave me alone" or "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 marvelled at your growth and development.
Where did the time go and where was I?
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 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 fell into past patterns,
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 again.

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

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

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 water falls -
for 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 to tell them
I had choked my baby to death.

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.
.

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 give him" or wondering how much you vomited or how much your head grew overnite 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...

(23 years later) When I finally screwed the damn worm onto the hook, and casted? Note the fishline 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!!"

(23 years later) 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 other's 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"?
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 nite - 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.

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.
.

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.