Why Open Another Box?

A unconditional conversation between mother and daughter...

Wednesday, July 28, 2010

Dear Erin ... To Learn or Ignore?

*From time to time I will include personal letters that my mom wrote to me, in addition to her actual stories. All letters were written on my mom's specialized computer (refer to her bio). Most were written during my tumultuous, angst-filled high school years and sadly, most were never read in full, or never read at all. Some have phone numbers carelessly written in my hand, others are crumpled or stained with unidentifiable liquid (I shudder to think what kind). Still, I have them and they are legible. And it might strike you as interesting as it does me, that although written to her high-school-aged daughter, the language and content seem at times more suitable to an adult. I'm rather glad I read them now-- in full, hoping at the same time, that perhaps she would too.

Dear Erin,

As your mom, I’ve often tried to protect you from getting hurt, physically and emotionally. Because I love you so much, I can’t stand to see you in pain. But if I somehow managed to protect you from all suffering, I would be denying you the opportunity to develop consciousness. I would be obstructing your path toward God.

I believe all our life experiences, good and bad, are chances for us to learn responsibility, generosity and compassion. The disease I have is an experience which is giving our whole family a chance to become more conscious and to open ourselves to the needs of others. It is a terrible, wonderful gift from God we can choose to learn from or ignore.

Though I’ve learned a lot about God during the years of my illness, I have to admit that life is still basically a mystery to me. A story Flak read to me one day helped me understand God’s relationship to us best of all. The story was written by a Christian author/editor, Philip Yancey and was about the aquarium he had set up in his office. First, he described the elaborate measures he took to keep his fish healthy and contented, including keeping the water in perfect chemical balance, feeding them precise amounts of nutrient-rich food, oxygenating the water and isolating sick fish. But were the fish grateful for this excellent treatment? On the contrary … In their ignorance, they fled in terror every time his hand appeared above the tank.

I think the universe of Philip Yancey’s aquarium is like the universe we live in. Humans are as incapable of comprehending God’s behavior as fish are incapable of understanding human behavior. Yet we humans have an advantage over fish. We have much more brain power, we can learn, and we can change the way we do things. So if we choose to use the brains God gave us, we can bring about the goodness on earth which will be the reflection of God in heaven.

It is much easier to say these things than to live them, Erin. But if all you can manage to do right now is pray for me and the other positive changes you’d like to see in the world, that’s okay. Then, as you learn to be more conscious, you will see that your prayers are being answered.



Tuesday, July 20, 2010

Voice on Paper

Laura is ruler of the world; a blonde-haired, blue-eyed tyrant; a sweet tyrant, but a tyrant nonetheless. “I love you Mommy,” she hollers in her pilgrim hat during the middle of her preschool Thanksgiving play.

Julia is sensitive; she fears bushes, the sound of dog food hitting the bowl, and the vacuum (oddly, only when turned off). She sobs for extended periods of time for reasons unbeknown to the rest of the world, then stops abruptly and beams at you.

Elizabeth is stoic and independent; she walks with a purpose … but oh, is she a love. She rests her head on my chest and pats my back with her tiny hand, then chirps a protest at being held and quietly gets down to go about her business.

I spend my days chasing the sweet tyrant, the sensitive and the stoic. I soak up every preschool presentation, extended sob session, and pat on the back.

Sometimes I spend my time worrying about ALS. Oh God, I panic, what if I get ALS and can’t chase them anymore? A sick feeling washes over me and I lose my breath for a moment. Sometimes I confess my thoughts to Paul. “I’m worried I’ll get my mom’s disease,” I say. “We can’t live that way,” he tells me.

He’s right, but I can’t hear it from him. I want my mom. I want to have a conversation about my fears. I want that very person who died from that nasty ALS to tell me everything will be okay. But she can’t because she’s gone. I get angry, sad, and occasionally throw tantrums about it.

On a rainy Monday I read Bortis and Bee, and realize something significant. My mom does talk to me; not in person, not in verbal voice—but voice on paper. This is a gift and I know it when I read, “But to live a hundred healthy years without experiencing that powerful, painful love, could never be for me.” She does not reassure me that everything will be okay, but she does tell me that the magnitude of love I have for my children is okay.

Today I am healthy, strong, and filled with comforting words that have been safely tucked in a big red binder … waiting for the rainy Monday when I was ready to hear them. When the sweet tyrant, the sensitive and stoic awake from a lengthy nap, I will seep them in my magnitude of love, and be grateful for my mom’s voice on paper.

Friday, July 9, 2010

Hooked on Bortis and Bee

When my daughter, Erin, was born,
it was love at first sight,
The doctor held her up
for John and me to see
and we both agreed
without a doubt
that she was absolutely perfect.
Unlike the typical newborn,
Erin had a round head,
pink skin,
unsquashed nose and ears—
in other words,
she was beautiful.
After 17 hours
of exhausting labor
I was suddenly alert.
Adrenalin gushed
through my veins
as I watched
our tiny pink morsel of child
kick her feet
and make funny grunting noises
on the warming table
where she lay.
I could hardly wait
to get my hands on her.

Within a week of her birth,
I was completely recovered
and thoroughly enjoying motherhood.
No postpartum blues
marred my happiness.
Through a sun-filled
spring and summer
we played
and cuddled
and learned about each other.

The Mommy/Erin bond
was strong in the beginning
and grew stronger and more intense
as the months passed into years.
My ego was fed
by Erin’s reaction to me.
She liked being with me
or near me.
When I worked in our house,
she played at my feet
and when we were out
she held my hand tightly
or I carried her snugly on my hip.
Erin listened to me
and (for the most part)
cooperated with me.
She and I both
were filled with contentment.
I showered my girl with kisses, hugs
and nicknames,
among which there were
Der, Diddo, Beeduh and Bee.
Both John and I still call our 10 year old girl, Bee
(unless we are angry
in which case she hears
the full Erin Leigh Schiller).

Because Erin is our first child,
she is the guinea pig
in our Parenting Technique Experiments.
Each developmental stage
Erin passes through
is agony for me.
Though I burst with love and pride
at each of her triumphant leaps
to a new level
of skills or maturity,
a part of me
always cringes in fear and guilt
that something I have done
will scar her for life.
On the other hand,
I have never doubted
that she needs me
and I find comfort in that knowledge.

In contrast to all of the above,
there is Evan.
Our son was born
after 10 hours
of very difficult labor,
which took its toll
on his appearance.
I remember holding him
and looking him over
in the delivery room.
Evan’s head had two lumps on top:
one caused by ramming his head
against my pelvis
during the final stages
of labor,
the other from the vacuum extractor
which the doctor used
to yank him out.
His skin color was blue-white,
his eyes were puffy
and his facial features
were mashed and bruised.
I looked at him
znd felt only relief and fatigue.
No rush of adrenalin,
no instant bonding
as I’d had with Erin.
I expected
and waited for
the magic moment to come.
I began to feel guilty
about not falling in love
with my new baby
and about ruining Erin’s life
by having another child.
My physical recovery was slow.
I couldn’t lose weight
or fit into my old clothes.
A long, rainy, gray winter
Followed Evan’s birth.
I was trapped in the house all day
with an infant
prone to frequent
ear infections
and his hostile six year old sister.
I became very depressed –
it was a classic case
of post-partum blues.

Late in April of the next year,
when Evan was 8 months old,
spring finally arrived.
as I felt better about myself,
I began to appreciate
the beauty of my son.
I saw qualities in him
I never possessed
but always wished I had:
total self-confidence,
physical strength and agility,
socially outgoing nature,
high pain threshold
and a happy optimistic approach
to life’s challenges.

It was soon apparent that
though Evan needed me,
it was in a far different way
from the way Erin did.
Evan became attracted to
Daddy’s style of play
which was more physical
and aggressive.
I envied the camaraderie
that developed between them
but also knew
it was a very positive development.
John showered his boy
with hugs, kisses
and nicknames
among which were
Futurehead, Connie Conehead,
Bortis McTortoise and Bortsball.
Bortis stuck.
When John would say loudly,
Evy responded,
“WHAT, Dad!?”
Then, when John smiled at him,
Evy threw his arms
around his daddy’s legs
and squeezed him as tightly as he could.
Though I had grown to love
and eventually to absolutely adore
my young son,
I had a lingering doubt
that I still had failed
to bond with him.

When Evan was 14 months old,
the doubt vanished.
I had decided to wean him
from breast feeding.
Through his own choice,
we were down to just one
nursing session day
which was in the morning.
He showed no signs
of wanting to give up
this morning feeding
and I enjoyed that brief time
when he would allow me
to hold him really close.
But subtle pressures
were being exerted on me
by well-meaning family and friends
to quit nursing him.

I think what prompted me most
to try weaning him, however,
was my self-induced guilt.
I felt guilty
for clinging to a pleasurable activity
that was no longer necessary.
The first morning I skipped
I felt terrific
though I was a little disconcerted
by Evy’s total acceptance
of the change.
By the next day
long dormant female hormones
began to reassert themselves
with a vengeance.
I’d thought my milk was almost gone
but my breasts were swollen and painful
and I started weeping uncontrollably.
On the third day
I stood in the shower
and watched the milk
pour from my breasts,
mingle with the water
and flow down the drain.
Caught up in some long-lost primal instinct,
a wailing cry
from a foreign place
somewhere deep inside me
escaped from my mouth.
That was my first experience
with total anguish.
It was an absolute sorrow
which traumatized
every cell in my body.
For a long time
I just stood there
letting the shower
wash over me
while I wept bitterly
over my loss.
By the fourth day of weaning
I was physically uncomfortable
and emotionally devastated.
So, I breastfed my son.
I knew instantly
I had made
the right decision.
The fierce agony of my mind and body dissipated
leaving behind
only a dull ache.
I was relieved but not happy
because I knew this “reprieve” was only temporary.
Holding Evan’s precious body
Close to mine,
I reflected once again
on the reality of change.
Life wasn’t going to wait
for me to choose my best time
to change my path.
If I fought change,
I knew I would miss the chance
to enjoy the next stage
of Evan’s life,
and of my own.
But the greatest discovery I made
in my aborted attempt
to wean Evan
was not learning how
to accept life’s changes.
It was the sudden realization
that I was totally hooked on Bortis
as well as on my Bee.
Knowing that
made the real weaning of him
just a little bit easier.

About a year later
I sat in a doctor’s office
and listened to him
calmly deliver my death sentence.
After I received the blow of learning
I had an incurable, progressive
degenerative muscle disease,
I heard only bits and pieces
of what the doctor said.
In stunned silence
I spent the first few days
after hearing the bombshell
passing back and forth
through stages of
disbelief, fear, panic and sorrow.
I mourned for myself
until I remembered
some of the doctor’s words
“Patients with this condition
usually live
between 6 months and 9 years
after contracting it.
The median is 3 years.”
Even if I lived the maximum,
Evy would only be 11 years old
when I died!
And my Erin,
who needed me so much
would be in the
very vulnerable late teens!
Then, I stood in the shower
and let the water pour over
my shaky, already weakened body.
From a foreign place
somewhere deep inside me,
came that haunting, howling cry.
I wept for my children –
about their future
unmet needs and wants,
because I would be leaving them
And I wept for our
whole family’s loss.

Many times
in the past two years
have I cried like that.
Now that foreign place
has become a familiar place
and a refuge for my
continuing sorrow.
Perhaps if I had not loved
my kids so much,
such refuge
would not be necessary.
But to live a hundred healthy years,
without experiencing
that powerful, painful love,
could never be for me.
I’m hooked and I’m glad.

By, Laura Schiller