Jacob Lived & Died

2010-08-22T20:00:00.000-07:00

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'.

.

I've been asked...

2005-12-31T22:01:00.000-08:00

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

My husband and I...

2005-12-30T21:01:00.000-08:00

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...

2005-12-29T20:01:00.000-08:00

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...

2005-12-28T19:01:00.000-08:00

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

2005-12-27T18:01:00.000-08:00

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...

2005-12-26T17:01:00.000-08:00

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...

2005-12-25T16:01:00.000-08:00

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

2005-12-24T15:01:00.000-08:00

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...

2005-12-23T16:20:00.000-08:00

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

2005-12-22T14:59:00.000-08:00

10 days old, going home

Jeremy & Jacob meet...

2005-12-21T14:56:00.000-08:00

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...

2005-12-20T14:03:00.000-08:00

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...

2005-12-19T14:02:00.000-08:00

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.
.

First Month w/Jacob

2005-12-18T12:01:00.000-08:00

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...
.

First month continued

2005-12-17T11:01:00.000-08:00

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

2005-12-16T10:01:00.000-08:00

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.

.

Mothers of the Handicapped...

2005-12-15T08:01:00.000-08:00

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...

2005-12-14T07:01:00.000-08:00

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

2005-12-13T06:01:00.000-08:00

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

2005-12-12T05:59:00.000-08:00

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

2005-12-11T04:01:00.000-08:00

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

2005-12-10T03:01:00.000-08:00

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

2005-12-09T02:01:00.000-08:00

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...

2005-12-07T01:58:00.000-08:00

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.