With much difficulty, and remembering,
I will add all my experiences or
thoughts with realizing our child
has been born with Down Syndrome.
What affects on my life,
dealing with family,
what the two of us, as a couple...
parents of a Down's child went
through and are still coping with
after more than a decade.
I will also include here
some of the experiences with
hospitals, doctors and numerous
accounts of operations, including
open heart surgery on our son, and
physicals, eye doctors, club foot
too many to mention as I work on this.
�OUR SON'S BIRTH DAY�
In the Spring of the year, a day was given
to us....bringing joy and sorrow.
Into 9 months of pregnancy, on a Friday
night, I delivered our son.
Delivering him through an emergency
vertical cesarean; the infant was laying
backwards, and breech!
Upon awakening from an induced sleep
from the operation, I was determined to
know where my newborn was. No one was
present in my hospital room--I felt panicked!
A nurse arrived and informed me my husband
would be with me shortly. When he arrived
at my bedside, I knew something was not
right. I demanded to see my son, not
yet able to know him in flesh. My blue-
eyed son came to me as a nurse placed him
in my embrace. He was precious, soft
and sweet.....all in wonderous glory....
our son was with us!
My husband stood by me, looking confused
and scared and nervous.
They told me my son had a 75% possibility
of having Down Syndrome---Trisomy 21.
Neither my husband nor I had any knowledge
of Down Syndrome. A young man with Down
Syndrome had attended our high school with
us....by this association I was aware of
the condition, but only that, not effective
enough to be a parent to a child with Downs.
That night, I slept in my room while our
son was in the hospital's nursery, being
monitored. He and I both needed our rest
as the upcoming events through our years
together will see us through triumphs and
tribulations!
�THE FIRST YEAR�
Throughout the night medical personnel
brought pieces of information to me.
A need of oxygen for my newborn was
evident. His coloring was blue, and
there was suspicion of heart defects,
a heart murmur was showing up. Along
with dealing with Down Syndrome and heart
problems, the physicians believed his hip
was dislocated.
After his first full 24 hours
out of my womb, family began to
arrive at our hospital room.
To say the least, I was overwhelmed by
all I was hearing, and trying to
comprehend all this! I desparately wanted
all these "ifs" confirmed, then addressed.
Each time I saw him, he exuded to me a
sense of peace which led me to want to believe
he----and I would survive this together!
ONE physician even suggested giving up his life!!
I wanted my son placed in a hospital that
staffed more qualified nursing and doctors.
The nearest highly qualified hospital was
hours away. Tho, just days after a cesarean....
I followed him to his new "home" in a much
larger city, and better staffed hospital.
They confirmed Trisomy 21 (Down Syndrome) but,
discredited hip dislocation and cataracts.
Specialists did confirm congenital heart defects,
a left club foot and static hydrocephalus.
During this time, we asked our "whys" and
"what will happen" and trying to remain strong.
Through this, I never once wondered how I was
surviving myself! My focus was on my son.....
24 hours a day. Each time I and my husband held
our infant son, we felt from him his will, and
his aura of perseverance and strength.
Within eight days of his birth, a pedeatric
cardiologist (a phenomenal man) was performing
a PDA ligation on our son. Here, begins a
trial of hospital stays, love, worrying and stress
for the next two years, taking down-hill turns
on our lives that has constructed a road for
us to share.....to come out stronger, wiser....
rising to this and finding we're together.
By June our son was released from the hospital.
We returned home, to the place we had planned
on raising our family... my husband's family's ranch
in the quiet, tranquil, high-country of Colorado.
The summer was filled with many visits
to various doctor's offices.
Our son's growing posed itself to be a struggle,
gaining ounces instead of pounds.
He struggled to survive.
He was on oxygen 24/7 and we soon found
he required thyroid medication
to off-set hypothyroidism.
It was decided open heart surgery would be necessary
to close the two additional holes that remained
inside his heart. He had a large opening in
his ventricle septum and a smaller opening
in his atrial septum. Diuretic medications were
given to relieve the pressures on his heart.
The surgery was scheduled around his first birthday,
in hopes he would be bigger and stronger
to sustain such a procedure.
Family came from miles around to visit us
in a mountain home.
Our babe enjoyed the company, charming and
winning hearts galore.
He cuddled and cooed, always calm and serene.
Those days were soon to end with a catastrophic day
nearing the end of the Fall season!
It began as any other day,
breakfast of warmed formula, cuddling together,
a morning nap while mom straightened the house.
Then, a midmorning snack, more cuddling while we
rocked in a chair and read stories.
Another nap and then lunch.
It was a wonderful day and then it was bath time.
Bath time wasn't the event most looked forward to,
Our son didn't care for them (and still doesn't).
I warmed the water and set his little body
in the baby tub.
He began to cry. He never cried loudly, his lungs
wouldn't allow for such statement. Yet he let it be
known he was not happy.
I quickly proceeded to wash him off.
At first all was fine, typical bath routine.
His cardiologist
had indicated his crying wasn't
to be of great concern.
We had just visited the
cardiologist the Thursday before.
Tests indicated he was doing relatively well,
all considered.
As I moved him from the tub and
wrapped him in a towel,
I noticed his face and skin becoming
mottled and blue.
He appeared like a raccoon around
the nose, eyes and lips.
Then the most devastating thing occurred to me.
He had quit breathing!
His eyes were bulging!----
I was losing my child, and thought
I would lose my mind!!
Quickly, I began to search his air way.
Nothing was obstructing it. I laid him in
his crib and dropped the rail.
Titling his head back, I began to perform CPR.
I was so thankful the hospital required my becoming
certified in this procedure, and didn't realize then
how much I would need it and appreciate it.
I performed what I knew I had to.----
It was the only chance I had to save my son's life!
I breathed in, rubbed and pressed on his chest.
I prayed and listened for any sign of life.
He then had a bowel movement and I surely thought
this was the end.
But, I couldn't stop!
An eternity passed before I recognized the signs
of breathing and detected a solid heart beat
progressing from beneath his soft skin.
I massaged his skin, dressed him and
got ready to leave
for the hospital.
My husband wasn't home from work.
I tried to start the car and was unsuccessful.
I couldn't think straight.
I simply wanted to hold my son.
I held on to my infant babe, not letting go,
After I had carried him back in to pack a case
for the hospital stay, we sat in our rocking chair.
Waiting out for what seemed like long hours for
my husband to return from work.
When finally he returned home, I
laid our son down long
enough to walk in, greet my husband,
and give him the news.
At first I didn't think he heard me, he
began to tell me about his day.
My baby was fine at this point,
yet, I was concerned and couldn't rest
until I had him
seen by the doctors.
(Keep in mind we had no phone in the
cabin at the ranch, and it was before
cell-phones! The nearest phone was miles away!)
We raced down the mountain to the nearest hospital.
In the emergency room, I explained
what had transpired.
They began checking him. He had gas
they said, from my
breathing for him in too great a capacity.
Thankfully, at this time, that was the worst.
We were soon to find out it wasn't. They
transferred him by ambulance to Memorial
Hospital in a larger city.
We arrived and met our son and his cardiologist
there in the early morning.
It was imminent, our five month old son would
undergo open heart surgery.
It would occur the following week in Denver,
at a Children's Hospital.
The ordeal we would face for the next three months
would enlist our strength, faith and love.
We would survive this. Yet at the time,
I was not sure how.
I wanted my baby to live a happy life.
I wanted to see my husband smile again.
I wanted to sleep through the night and
wake to my son's face.
There were so many uncertainties and I realized life
was far too precious. I cherished every minute I had
with my son, almost to my own detriment.
The following week, our son was transported to
Children's Hospital
to be admitted for open heart surgery.
What lay before us we weren't sure,
life as we knew it
or thought it would be, was about to change.
Hopefully we'd come out of it in one piece.
My mother published a poem for our son
during the long and agonizing hours of
her grandson's surgery....Her own words.
Writing these words, I think, helped my
mother cope with the turn taken in our lives.
Our infant son, my life, came through
the surgery, and was resting. Later,
in months to come, we were informed
that he had expired on the operating
table and that the surgery staff were
able to revive him once again. Fate?
Perhaps. I was told many times through
this ordeal that our child was going
through with a will to live....I was
told God only gives us what we can handle.
As he lay in the hospital for days and
weeks, healing, I stayed at the Ronald
McDonald house just a block from the
hospital. I hardly slept, we fought
like cats and dogs, my husband and I...
we weakened, yet perservered. Along
with our son.
I remember once, around 11 p.m. I was
still at the hospital, by my son's bedside,
I just (I called her, and she drove miles
at night by herself to
be with me for a few days. I look back
and know now that my mother had her
own child's welfare in her heart!!)
had to talk and see my own mother!
I needed her comfort. Still frightened
at what turn our lives would take.....
Days later, I finally broke down and
cried!!! Cried hard and furious!
I asked my silent questions, like "Why
me?" "Why my son?" "What did I do so
wrong to be punished this way?"
Months progressed, our son's heart and
health improved. Somewhat. His heart
specialist, still one man I so admire---
imformed us that he would not survive
in the high altitude of our cabin! We
had to find a place here in town, keeping
him on oxygen at all times, near
the hospital, and it changed our lives.
Forever. Never to regret the choice we
had to make for the frail infant that is
our son!
If you've come here from surfing the Down Syndrome
webring and you want to resume, To my webrings page
As this is very difficult to "re-live" this part of our
lives, I will someday come back and try
to continue....
 
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*���*Tour Itinerary*���*
Nat'l Down Syndrome Society
Nat'l Down Syndrome Research Institute
Trisomy 21 Foundation� �A Parent's Resource
Health Issues (Dr. Len Leshin)
Internet Resources to Down's
Nat'l Association for Down Syndrome
Nat'l Down Syndrome Congress� �Down Syndrome Convention
Down Syndrome Advocacy Group� �Discover a Pal
Mile High Down Syndrome Association
Nat'l Information Center for Youth Disabilities
Exceptional Parent Magazine� �Beautiful Faces Calendar
Down Syndrome Online� �Down Syndrome (Gift of Life)
The lighter side of Down Syndrome
Down Syndrome Site�
copyrtighted 2001---
All Rights Reserved
Lady Irene
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