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Poetry
Journaling,
poetry, and music are essential pieces of my life and help
to increase my coping ability as a mother of special needs
children. Some of my poetry and essays follow:
Heaven's Very Special Child
by Edna Massimilla
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above-----
This special child will need much love.
Her progress may be very slow
Accomplishment she may not show.
And she'll require extra care
From the folks she meets down there.
She may not run or laugh or play
Her thoughts may seem quite far away.
So many times she will be labeled
‘different’, ‘helpless’, and ‘disabled’.
So let's be careful where she's sent.
We want her life to be content.
Please Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven's very special child.
DREAMS LOST
by Patricia Burton
May 2002
My dreams are lost, that's what I'm grieving
That's the source of some of my bleeding.
An aching heart and tear-filled eyes
Because now I realize, my dreams are forsaken.
The dream for healthy children, that's what everyone
expects
My dream has been lost, again and again
First my angle boy Taylor died
Then my daughters with challenges and needs
No kid should have to contend with.
The dream for a career, self-fulfilling and challenging
I studied hard and have the education
But not the freedom to dig in.
I've got special need girls at home, instead.
Another dream is lost:
Which is the ability for normal conversation
Talk not focused on doctor tests or dreaded news
But chit-chat about the mundane
Mixed with an abundance of laughter, not rain.
Another dream is lost: time for my husband
Or time for just the two of us
That time is few and far between
And my emotional pail never fills
Before it is empty again.
God, what dream can you restore?
Just one is all I beg for, not more.
Give me hope for a better tomorrow
Or some way to recover
These lost dreams I once had.
I AM THE GIRL
by Patricia Burton
July 2002
I am the girl
Standing at the window
Watching my sister dance.
I practice the
moves
At home, and in my room
"cause I'd love to be in that class.
But I am the girl
Standing at the window
Waiting for someone to call
I want
to go play
Like other kids do everyday
But no one seems to recall.
I am the girl
Standing in the line
At the grocery store, or any place
My Mom
helps start the conversation
And I try to join in
But the words just won't
come---
---I can't win.
But, I am the girl
Staring from the window
At the doctor's office again
I
repeat the same trick
To distract myself from the worry
"cause I have a
condition
No one can fix.
So, I am the girl
Staring at the window
Of a new class, new grade at school
What will this year be like?
What can I say when called on?
Another teacher, and
many more freights.
"Cause I am the girl
Staring from the window
As my Mom drives me to
Another doctor or therapy session
I get so tired of all this
I just want to be a
"normal" kid
Who does not live
Her life
Standing at the window.
LAYERS
THE LAST DAY OF SCHOOL
by Patricia Burton
July 2002
Layers of disabilities
Unfold to me
Everything is not like
It's suppose to be
Oh yes, she'll be able to attend
Public school But who could predict
All the
communication
That just didn't click?
The last day of school
Hits me like a hammer
She still cannot get ready
By
herself, without a clamor!!
As I scurry around
She "forgets" to look
at the list
To see what to do.
So I run for her shoes,
For her binder
Brush her
hair.
Find her socks.
She stares kind'a bewildered
Like "What's the
matter?"
I glance at the clock again
It is 15 till 9:00.
We should be in the car by
now
So I say "look at the time!"
She begins discussing what time
Her
school will start
But it's the last day.
My God! Why can't she get this?
(I yell
inside my heart).
There's NLD and ADD
There's TS and all of that.
But most people don't know
'Cause she is so beautiful
They just don't understand
How difficult it is
With
continued layers of disabilities
Confronting me again and again.
A mixture of sadness and anger
I feel
The layers of disabilities
Appear over
and again.
THE ROLLER COASTER
by Patricia Burton
I'm on this roller coaster
Called Having A Sick Child
One moment my world
Is okay
The next moment, I'm plummeted.
It's amazing how one 10 minute
Or thirty minute appointment
Can turn my life upside down.
Just like a roller coaster.
Except with a roller coaster
You are wearing a seatbelt
And with a chronically ill child
There are no seatbelts
Only prayers.
Prayers to my God, day and night.
Prayer requests shared with friends
And some shared with only acquaintances
The more people praying
The better, I reason.
I find myself eating
Even though I'm not really hungry.
I'm stuffing my face
because at least that's something
I can do.
What else can I do
with this time
Called waiting?
Waiting for the report
of this blood test
or that x-ray.
Maybe I can sleep.
Maybe, by closing all the blinds
in my bedroom
Shutting the door
And making my room
As dark as possible
.............maybe I can
shut out the uncertainty
The pain.
My pain.
And my daughter's pain.
I fall asleep, but only for a minute.
Now I will try exercise.
Out the door with my dog.
Up and down and around
our neighborhood.
Praying again as I walk.
With each stride
I find my mind wandering
Back to a few days
of happiness.
A precious few days when
She was okay.
She was happy & laughing.
There were no new diagnosis
to dread.
There were no new doctor appointments
To worry about.
There were just the everyday
life that most people
Take for granted.
However, for my world
And my daughter's world
The days of happiness
Only lasted a very short time.
A precious break in the clouds
That hang over us
All the time.
Now it's back
To the feeling
I'm most familiar with:
Anxiety.
Dread.
And a little hope and faith.
ONCE THERE WERE THREE
by Patricia Burton
Once there were three
Babies inside of me.
Three heartbeats on the screen
What a miracle
After all the years of waiting
And having this dream.
Then there were two
Wishing and wondering
What happened to you?
Months later, a c-section brought two
Beautiful boy and a girl
Off to the N.I.C.U.
Taylor went in a swirl.
Baby boy was jaundiced
And not breathing well
So he stayed in the hospital
In 10 days, all was swell.
At last! We were home
Two babies and me
Rocking and singing
And nursing on me.
At three months
Something was very wrong
Why was baby Taylor yellow again?
And not growing at all?
One doctor, then another
First there was good news
Then there was bad.
They made a mistake
How could they? I'm so mad!!
Mad at the doctors
And in shock at this ordeal
Husband just left us
In shock, I just yield.
Yield to the errors
And betrayals
And hurts
I must press on
And keep up this baby work.
No time to cry
No time for tears
More visits to the doctors and lawyers
More questions than answers
What jerks!
Finally the day came
I held him one last time
The liver was ready, and it was Taylor's time.
I'm not ready to let you go
I cannot let them take you out of my hands!!
His eyes so dark and precious
His tiny fingers around mine
He smiled at me one last time
I covered him in kisses
And smothered him with prayers.
Prayers to heaven
One hour and then another
How long does a transplant take?
They said seven, not eleven!
Another hurdle over
I could see my son again.
Machines and tubes everywhere
I should expect that, for I'm a nurse
But not anymore.... I'm just Taylor's mother.
Positive news and more prayers
“We're moving him out to the floor” they shout.
Then.....No, he's worse. Not breathing well
It's some virus, they tell.
My heart breaks
as I kneel in the floor
of the hospital bathroom
I clutch onto the sink and pray,
“Dear God, don't take another!!”
Another of my babies, I can't bear it one minute
I beg you God. Please heal him.
I beg you God. Prevent it.
Two weeks passed, just a blur in my mind.
I couldn't sleep with you in the hospital
All covered with tubes
And baby girl
back at home, making sweet “coo-coos”.
No mother has begged and pleaded so hard
But it happened------------------ he died
And now from three,-----------------there's only one.
One Amanda to love
So precious and pretty
We talk about Taylor
And his life, what a pity.
My heart still grieves
For the little ones that I lost
For the little boy so sweet and the other I had
But I must press on
to understand her syndrome.
What is Turner's?
What does that mean? And a new baby inside of me?
Today I have my girls
And an empathy beyond these walls
For the others who have lost
their little ones and need to cry and bawl.
Yes, there once were three
Inside of me.
But now there are two
New husband and another baby girl.
We will make it---------------- I swear
I will never give up
Because there once were three
Inside of me.
So here's to you
Baby Taylor, my sweet angel boy
I'll see you again, and that will bring full joy!!
SAVING MY MOTHER'S LIFE
by Patricia Burton, RN, MSN
August, 2001
Did I tell you
about the time,
I saved my mother's life?
Mother was a new widow
And wanted to try
Some adventures
She'd dreamed of
Even before my Dad died.
She was planning a trip
Down the Amazon River
Had to get several shots
To protect from the critters
One of the vaccinations
Made her terribly ill
To the hospital she went
with a fever and a chill.
When I got off work
from the Dallas ICU
I went to check on her
And see what I could do.
The nurses there said
"She's okay."
But when I went to her bed
She was pale, unresponsive,
And almost dead!
I checked her blood pressure
And very low it was
Seventy over forty
What could be the cause?
I increased the fluids
Dripping from her I.V.
And called for the nurse
To alert her to my deed.
To my surprise
the nurse was still unconcerned
And appeared irritated
by what I had done.
I explained
"I am a R.N.
My mother is dying
And you're not tuned in."
I asked the nurse
To page the doctor
But she was not alarmed
So I phoned him myself
Even though it was 2 in the morn'
Finally the doctor arrived
And wrote new orders
in the chart.
He agreed with my alarm
and the fluids dripped faster
in mother's freckled, thin arms.
The Amazon River Trip
was canceled needless to say
But my mother
Is still living
And I'm thankful for each day...
OTHER MOTHERS
by Patricia Burton, RN, MSN
February, 2002
While other Moms
Are arranging play dates
I'm arranging medication deliveries.
While other mothers
Are braiding their daughter's hair
I'm taking
My daughter to "time-out."
While other Moms
Complain about having to buy more kid shoes
I am filling the syringe
With Nutropin
And praying there will be a need someday
For more shoes.
While other mothers
Stop for ice cream and treats
I stop at the grocery
For more pull-ups and prescriptions.
Some may say
"Stop feeling sorry for yourself
At least your child is able
To sit, talk, and walk."
That's true----
Illness is relative
And my sick child
May not be as ill or as handicapped as yours
But these are my feelings
And what I am feeling
No one has a clue.
Other mothers
Make arrangements
To meet their friends
For a chat over a salad
While I'm still wishing for a call
To be included.
Is it because Fort Worth is a closed town?
Since I have not lived here since birth
They don't want me around?
Or is it because
It is hard for me to make chit chat
When most everything I face
Is dark, sad, and "heavy" like that?
How can I make
These other mothers understand?
I'm lonely
And my daughter is too
And we need friends around
Who really care? Do you?
Sometimes I'm weary
From trying so hard for friends
I only have so much energy
I must conserve
Fro the next doctor's appointment
Or negative word.
Therefore
While other mothers
Rush to and fro
To the malls, or wherever they go
We're here in our world
Isolated, lonely, and hurting so!!
All this begging and explaining
Makes me mad.
They know enough
They could fill in this gap.
But instead
Other mothers
Attend their Bible studies and luncheons
And forget about us
Hurting and down in the dungeons.
I won't call or beg
For a play date anymore.
For either myself
Or my kids, that's enough! No more!
Don't worry about us.
Our begging is thru.
We'll continue to make it.
With or without you.
But in the end
You are the one
Missing out
Because what we have to share
Would make you more aware
Of the many blessings you have in your life
That you never think twice about.
So for all you
Other mothers
Out there
Who are so busy
With your own everyday cares:
There are people around you
Like me and my kids
Whose hearts are heavy
And just waiting for a friend.
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