Mommy Musing

Jacob had a light within him,
and I distinctly remember
the feeling of being bathed
in that light.

Although I am not intellectually
aware of a God, or a Higher Power anymore,
my heart instinctively knows
there is something
more out there beyond me -
because of Jacob and that light
and the kind of love we shared.



2015 Extra Note - I now know that the light I saw around him was an 'aura'.

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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, unless it's to tell me "it's God's Will" - I don't believe it and I don't want to hear it.  In real life, no one talked about him. Even tho it was so many 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 - 2016
 copyright @ Laurie Renz/Adamson

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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 Daddy 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 Montague



(November 2006) As I was editing these poems, I googled the book mentioned here.  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 development while still inside the mother.

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 felt 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?

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 I wasn't fond of the thought of another hellish labor.

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 denial 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 the 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 great... 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.
Huh. 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 supposed to be.

Thank you for seeing
what I needed so very badly.
It was the first inkling I had,
that maybe, just maybe,
by bringing him into my room,
instead of the NICU, 
with it's spacecraft noises,
he wasn't quite so different after all.
Into my room, with privacy,
not inspected, noted, evaluated,
informed of complications,
watching me to see
how I was "holding up"...
it meant a lot 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.

Coming home...

Coming home without my baby. Jeremy was so glad I was home. It had frightened him to see me in the hospital when he came to visit.  I missed him sooo much, and was terrified how life was going to change for me and him. 

Going home

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 being home together,
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 books to the kids,
and playing, and praying.
Time for smelling the roses,

and taking the time to share it
with my babies. 

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 they they, so many theys
I have to answer to - they want to know.

Feedings are every 3 or 4 hours
like they're supposed to be,
but it never seems as if he's 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 damn 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 weird things
to do to him at home;
I have just tons of time, you know,
and how am I supposed 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 all just get together
and let each other know
what you're asking of me and this one tiny little 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 so he's not left out.

There is no time to be a family,
to laugh and enjoy anything,
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 on 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...

cause I'd fall in. 
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First Month w/Jacob

2015 Extra Note - Every year I read these stories and cringe when I see the this title come up.  A feeling of shame still washes over me when I read the next two entries.  At one time, it was broken up into 4 entries, because it was just too intense for me to read.  Now it's two entries, so I can hurry and get it over with. 



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 if I did, 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 home alone, for 2 hours, even tho I was less than a minute away.

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, still looks paralyzed.  I sat there, bar-soaked in the smells of alcohol and cigarettes, and wondered what I was becoming.

Evidently I was 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 ever for the round of medical appointments. He told me he just bought a new car for his new girlfriend, and the doctor told me Jacob had to go back to the hospital for surgery, because the shunt was not working.  

I shattered into a million little pieces.

I had just spent most of that day, begging for help from my husband - money, finding a house for me, borrowing his pickup to help move my 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.  He said so. 

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...
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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 supposed 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.  Things were spiraling downhill fast. 

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 two weeks back, because he wasn't gaining weight. 

It was the last straw for me - 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 the ER doctor's had noticed it. I believed it so thoroughly that I didn't even consider the shock of a baby like Jacob takes more than a few weeks to digest. Not to mention impending divorce, quitting a job, facing welfare, and being forced to move because I was living in the parsonage of a church, and the new pastor wanted my house. 

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.  He was making no sense, completely retracting his earlier words of the day. 

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".  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.  Seriously. 

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 him. 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 extra 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.  The oxygen on the plane theory. 

I got out of the hospital, found a house, and 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 his grandparents, 
and we began to make a home and be a family.

 2007 Extra Note - Jacob was a month old in the picture above, 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

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, mumbles
"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 asked, surprised "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!"

And I love YOU so much.  







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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".

Erma Bombeck
.

My Response...

My Response to Erma's Poem

Well, that's all well and good, isn't it?  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 children.  Jacob of course, but Jeremy too, because he's already paying the price of there being only 24 hours in a day. 
.

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.
Yes, I loved Jeremy the same,
but my hopes and dreams and expectations for him
made me make mistakes too often.  
Expectations - the ruin-er of unconditional love.
I expected Jeremy to walk, talk, and potty train
by a certain age, and I would push, and prod
to make him meet my expectations.
I think most mothers would know what I mean.
Nothing negative... just expectations.  Sorta.

But with Jacob, I knew not to have expectations.
That every thing he did, IF he did... would be a gift. 
He was unconditional love staring me in the face.

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

2009 Extra Note - I have felt guilty for the line
"I have never loved anyone so perfectly", because of course, 
I loved Jeremy to the moon and back, but it was different. 
I had to raise him to be a good person, teach him manners, 
know right from wrong, etc. etc. etc.  
There were expectations on me to do that, 
so I had expectations of him learning all that I had to teach.  
And then there was discipline.  
With Jacob, all I did was love him 
because I still hadn't grasped how the hell
I was going to raise him.  
I couldn't imagine a future with him, 
so I was free of all the expectations 
a parent has for their child, 
and so all I did was love him.  
I wonder now... if I subconsciously 
knew we wouldn't have much time together? 
.

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, now 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.
Everyone notices and comments on it too.  



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 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.
.

He had his moments...

 I mean, I'm not applying for sainthood for him. 
There are some... irriatations,
shall we say?...

This picture was taken after the 5th shunt surgery, where they used a shunt that actually finally worked.  It worked too well, because in this picture you can see how sunk-in the fontanel is, and the ridge of his skull running down the side of his head is showing. Babies have a "soft spot" in the middle of their heads, on top, and his had been too full of water before this shut, which made the soft spot hard, and not good for him. The fluid drained so well, that the skin of his head was actually touching his brain, which made the two sides of the fontanel made him look like he had horns.

But? 

He stopped throwing up!

Maybe I should apply after all. 

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.
This was my favorite time with him
because it reminded me
of the white light I saw
the first time I saw him
after the c-section.  
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 body.
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....
Baby Care 101 -
"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 fascinates him.
I told the girls to watch Sesame Street
and laid back 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 I can tell
he isn't. 

Breathing, I mean.

He isn't breathing.

Breathing he's not.  

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 making sure they think 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.  Back and forth I went. 


1989 Extra Notes - I wanted to die that night, and in the dream, if I could just get past those hands, I'd be home-free... but it was my love for Jeremy that kept me back in the world.

.

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 doesn'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 wood,
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 myelomeningocele
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 in 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.



2015 Extra Note - he is still very special to me.  I should get in touch.  



.

I took Jeremy...

Reality

In real life, during an ultrasound,
the doctor had 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...?


In a Dream

I took Jeremy
to the doctor
with a simple cold.

The doctor sent me
to the bathroom
to pee.

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

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 -
when it's MY guts
that are 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.

The 2 year old in the next bed,
with Down's Syndrome,
and terminal with a heart problem,
there to die.
Dad had committed suicide
not too long ago...
how horrible of me
to feel so lucky...

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,
to volunteer on the pediatric unit.
For teaching me 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.
I will always remember your kindness.
.

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 with
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


2007 Extra Note - 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.

2015 Extra Note - The book had a white cover.  I still love this poem.  
 
.

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 doctor.
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.

Did 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 neurologist told horror 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 the doctor terrify me
with stories of babies 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.


2009 Extra Note - This picture was taken after the surgery where he stopped breathing. I had decided  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 back 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.



But here he is mad at me cause I made him leave the playroom and spend some time with me and Jacob.  

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,
keep them comfortable,
hold them, hold them, hold them.

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



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 trying 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 us 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 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.  Thank God for Jeremy. 

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 did I get myself into 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.
Now,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 
for waking 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 of death.

And of 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 other 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 serenely 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 nightgowns.
The pain is 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 grabbed 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
for his mommy and little brother.

Jeremy is alive
and I can see that he is okay.
Maybe the longing,
the 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.
Mother love cannot believe,
cannot release until I know
he's really better off dead.
I want to give wherever he is
an inspection and give it an A+
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
that 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 "Grief".
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 band-aids,
much less his physical ones.
Specially when I need
the biggest band-aid of all.
But more than that -
I need someone
to put it on me, to take care of me,
for a change.

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 guilt 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".

No, my God
would have held me.

.

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 meditate
on my baby's death.
Had to say goodbye to him weekly,
before I was ready.
It nearly destroyed 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 that nice guys do exist.
and last but certainly not least -
make a baby in the process.
Then I would be all fixed up...
I would be sneaky that way.

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?'

You know you're in serious trouble
when you go to counseling 3 times a week!
.

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 don't' know".  Finally he said "We all did the best we could... even you, Laurie".  I left the building and threw up outside his door.

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
of my mind 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.


Sure enough, he did ask me when Jacob would come back from being dead.  
.

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. The 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 psychiatric 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 rocking each baby. First Jacob, then to bed, then Jeremy.  They would watch the dancing lights and the colored fish from the aquarium in front of us - would make me feel everything would be all right. Alone with Jacob, 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. When it was Jeremy's turn, I hid the tears, so he wouldn't worry or be scared, I needed to be strong so he could trust me again, that I was really there for him.  Jeremy brought laughter back into our lives, and his sensitivity was a constant marvel to me, and to others as well.  Everyone noticed how sweet he was to Jacob, and how he loved being a big brother. 

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 them. Somehow, the stillness of Jacob's paralyzed body stilled my mind from the constant swirl in my mind. 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 serenity. 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 gone-ness.

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 we 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.
.