She will never forget the
day she was blessed with a miracle. After several years of various doctors
telling the 32 year old woman that it would be “medically impossible” for her
to get pregnant, having another baby was a dream that she had just given up on.
So on that bright and sunny May morning when the two pink lines showed up on a
pregnancy test, despite the evidence, she was in complete and utter shock. Five
tests later, she finally conceded that she was indeed going to have a baby.
The
problems with the pregnancy started early, the worry began to set in and the
timing of being pregnant really couldn’t be worse. But as she lay in the
shadows of a silent room watching a barely six week old angel dance across the
ultrasound screen for the first time, the woman was overwhelmed with tears of
gratitude and unrelenting love. So when her first triple screen came back with
an elevated risk of two potentially serious chromosomal defects, she refused
further testing. The pregnancy she had fought so hard for would continue, no
matter the outcome.
She
prayed for a girl, a beautiful chubby cheeked cherub that she already had
envisioned in her mind. She had a name already picked out, the perfect name for
a child who had such big things ahead of her, Lydia Anne, both names taken from
the greatest women the woman had ever known. Days passed by in a steady stream
of busyness, with plenty of those quiet moments in the ultrasound room watching
the tiny bean of previous days transform into a baby interspersed amid the
normal routines of life. With every day
that passed, the dreams she had for this precious girl grew bigger and bigger
as the unborn baby danced in her ever-expanding belly.
Then they came, the seven words no expectant parent ever
wants to hear. “Something is wrong with your baby’s heart.” As she struggled to
grasp the meaning behind those words, she was urged to have an immediate
amniocentesis, because this something that was wrong with her precious Lydia’s
heart strongly suggested that she had Down syndrome as well. After consenting
through tear-choked lips, she watched her baby flitting around the screen in
front of her. The tears refused to slow as the thousands of dreams she had for
this miracle fell to her feet in ashes.
The days following were horribly long, filled with
unrelenting sorrow intertwined closely with a solid denial. The heart defect
was worrying, but she felt that as terrifying as that was, it was something she
could deal with. It could be fixed. What she did not believe that she could deal with was Down syndrome, which would
be something that must be dealt with for the remainder of this unborn baby’s
life. She felt deeply that she was being punished for some prior sin; that the
same God who blessed her with a miracle had created that miracle flawed. She spent several days in bed,
sometimes sobbing and alternately begging God for a mistake and screaming at
Him about the unfairness of it all. When the phone call came and the quiet
voice on the other end unflinchingly confirmed, “Your baby has Down syndrome”,
it seemed as though time stood still and life as she knew it came officially to
an end.
Trudging dispassionately from doctor to doctor, listening
to what seemed like an endless stream of worst case scenarios painted as fact,
continued to drag her further down in the pit of her despair. Yet as the days
continued to pass, as the stacks of ultrasound print-outs saved in her treasure
box grew, each showing the ever changing face that was already very much her
daughter, something subtle began to happen. The dark grip of hopelessness began
to lose its hold on the battered edges of her heart, and those edges began to
knit themselves together. Hope began to blossom like a graceful flower as she
communed with the child growing within her. Peace washed over her like the
gentlest of waves and she knew that this little girl might have Down syndrome
but she was still every bit the miracle her mother at first supposed her to be.
She existed not as punishment, but as a gift handpicked by God. Despite the
grim prognosis given to her, the certainty that the tiny girl, who already had
a beautiful smile and a sassy attitude, was going to be someone truly amazing grew
within the woman’s heart.
She was told to expect a very tiny baby. She was told to
expect her newly born daughter to need immediate medical intervention. She was
told to expect at least a two week stay in the highly specialized newborn
intensive care unit in the children’s hospital next door to the hospital she
delivered at. She was told that tiny Lydia would go into heart failure within
the first weeks or months of her life.
Yet on the day that Lydia Anne Ehle made her way into the world, she set
out to prove each dismal doctor wrong, one by one. She arrived, chubby, pink
and beautiful. Moments after she was whisked away to receive the medical
intervention the woman had been told would be necessary, laughter and bubbly
chattered echoed across the hall where her daughter had been taken. She arrived
in a glass cocoon to see her mama for the first time with a bow on her cradle
cap. She spent a little more than 24 hours in the specialized NICU before she
was returned to the level 2 NICU at the regular hospital. Best of all, during the
long months of waiting for the day she would be forced to hand her precious
gift to a surgeon for the repair of her impossibly tiny heart, tiny little
Lydia never showed a sign of heart failure.
Six months into the new world created by Lydia’s birth,
the woman already knew that she could not live without this wee little girl.
She fell deeper in love every day. A smile, a giggle, all of the extra cuddles;
not one single moment was taken for granted. At six months and 8 days, she
handed the baby who had so quickly become her world to a man who would stop her
heart, take it in his hands, and make sense from the mangle. The fear the woman
felt was suffocating; the tears she had cried and had yet to cry too numerous
to count. She didn’t take an entire breath for the eight hours it took before
she was again allowed to lay eyes on her daughter. She spent hours beside the
light of her life, quiet and still in a metal crib among the beeping monitors
and constant bustle of the ICU, waiting for a glimpse of that sunshine smile,
for the weight of her slight frame to melt into her once again. She prayed. She
cried. She thought.
And she finally realized that what had once been the
worst thing in the world she could imagine, having a child with Down syndrome,
was nothing compared to the thought of having never known her. The woman she
had been before Lydia faded away a little at a time from the moment the weight
of her had been placed in her mother’s arms for the first time until every
vestige had vanished completely. She had been made to be this girl’s mother and
everything in her life felt like nothing but preparation for these moments
where everything neatly fell into place, finally making sense for the first
time.
16 days later, Lydia was once again snugly tucked into
her own bed. The weight that the woman had carried faithfully on her shoulders,
worry, fear, heartbreak, finally lifted and real life began. The days settled
into a peaceful routine as the milestones slipped past. Firsts followed one
after the other, first Thanksgiving, first Christmas, first birthday. Every
passing day continued to bring more; more laughter, more joy, more appreciation
for every little thing so hard won.
Everything is a celebration. Every day has become a new
gift, bright and shiny with expectation. The woman’s eyes have been opened to a
world she had forgotten existed, one full of promise, Technicolor bright, with
miracles to be found around every corner. Her world moves at a slower pace
these days, but she realizes that she rarely longs for the faster pace of the
life that existed before. She has become a better person, a better mother, a
better daughter, a better wife.
Down
syndrome, rather than ending her dreams of a sparkling future, made those
dreams bigger, brighter, and left her with the determination to make them
happen. Down syndrome, rather than being the end of her life, turned out to be
just the beginning of it. Down syndrome, once thought a curse, has truly become
the greatest blessing in her life.
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