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The
following is the story of the first few days after our son
was born. It is the story of our journey from shock and fear
to understanding, acceptance and joy.
"He has some features that resemble a syndrome."
These are the words that made my mind go dark, that started
the ringing in my ears, that ended my life as I knew it, at
least for a little while. It was 4:30 in the morning. About
nine hours earlier, I had given birth to my first child after
a healthy, normal pregnancy. My husband and I held him and
several family members took their first peek at his round
face and chubby cheeks. My husband went home to get some rest
and I slept for a few hours. A specialist came in before sunrise
and I was given the news. I called my husband to tell him
our baby was sick, our baby had Down Syndrome, our lives were
over.
This moment was shocking and dark and painful. It is a moment
during which I realized that one's heart actually can break
and that with heartbreak comes unbearable grief. I did grieve,
for the child I had imagined, the healthy child whose heartbeat
I had heard at each doctor's visit, the child I pictured in
all the adorable clothes I had washed for him, the child who
would grow up and go to college and have a family of his own.
This sick child, who was having trouble breathing, who was
hooked up to tubes and monitors, who was too sick for me to
hold, could not be my child. Yet he was my child and so I
already loved him. He stayed in the NICU for one week. In
that time, he was treated for a lung infection as well as
jaundice. He had a chromosome test and it was confirmed that
he had Down Syndrome.
The sadness that came with finding out there was something
wrong with my child was like nothing I had ever felt. I cried
for him and the way the world would see him. I cried for myself
and the way the world would see me. I felt uncomfortable in
my life, in my house, in my skin. I could not do normal things,
like listen to music , because it only reminded me of the
part of my life, the part of me, that seemed to be gone forever.
My entire identity disappeared and I saw myself only as a
parent of a child with Down Syndrome and I was sure the whole
world would see me the same way. I visited the hospital every
day and stood by his bed in the NICU. I held his hands and
watched him breathe and listened to the beeping of the machines
that were monitoring him. I pumped milk so I would be able
to nourish him when he was ready. I held him for short periods
of time, careful not to tangle the tubes and wires that were
attached to his little body. He got healthier and stronger
every day.
We took him home and watched him sleep and eat and changed
his diapers and bathed him and did everything we imagined
we would do in the first few days of having our baby at home.
We began to realize that despite his diagnosis, he was the
baby we had been waiting for, the baby whose arms and legs
we had watched move across my belly, the baby whose ultrasound
picture we had studied over and over again, trying to imagine
his face. We began to enjoy the things we had been looking
forward to all along. Our families surrounded him with love
and relished holding him and watching him do the things that
newborns do. Slowly we told friends and coworkers about the
diagnosis and one by one, they offered their sympathy, understanding
and support. We talked to other parents who had similar experiences
and began to feel less alone. Light began to seep back into
the dark world in which we had been living since that first
morning at the hospital.
Two years later, the pain of that morning has faded and in
its place is the joy our son has brought to our lives. Rather
than lamenting over how long it takes him to reach a goal,
we have celebrated each little accomplishment. We are continually
amazed by all he is able to do in spite of the fact that every
cell in his body carries an extra chromosome. He has a smile
that lights up the hearts of everyone who sees it and an equally
endearing mischievous look that lets you know he is up to
something. He loves to be outside and is happiest when he
is in motion. He has an endless amount of energy and enjoys
all experiences to the fullest. He has my eyes and my husband's
instinctual love of the sea. He is affectionate and silly
and is everything I imagined my son would be. He does have
some "features" that make it obvious to the world
that there is something different about him, but I think his
smile and his laughter and the pure joy he gets from life
are much more noticeable. Very few people can look at Joshua
and not smile, the fact that he has an extra chromosome pales
in comparison to a gift as lovely as that.
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