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It was a Tuesday like any other. Pick Will and
Emma up from school, mad dash to the Y for swim lessons, first
Emma's then Will's. The locker room changes. The heat, the
chlorine, the smell of feet. Only this time I'm pregnant with
nausea, and waiting for a phone call with results from the
amnio I had 10 days earlier. On a hunch that day I called
the high-risk practice which had conducted the test, where
Niels and I also had our first high-risk ultrasound, and our
first session of genetic counseling. I thought maybe our results
might be in a few days early.
As luck would have it, they were.
When my cell phone rang and it was my OB, not the high-risk
doctor, whom I was told would call with the "good news,"
I knew right away my life as I knew it was over. My OB's voice
told me all I needed to know: the baby indeed had Down syndrome.
He had warned me if there was "bad news" he would
be the one to tell me. And here we were. And he was telling
me. And there I sat, on the bleachers above the pool, watching
Will do his laps, Emma beside me eating her apple. I just
sat there and talked to him like it was any other conversation.
Uh-huh. Yes. I understand. I'm 39, and we knew this was always
a possibility. Of course we can handle it. Yes, we'll make
the appointment for a 22-week ultrasound. No, we don't want
to terminate. Yes, we realize there is a short window if we
change our minds. But we are okay with this. Are you okay,
doctor? It must be hard for you to deliver news like this.
I hope you are okay. Me? I'm fine. I'll be okay. See you in
two weeks for my check up. Good-bye.
I cannot breathe. The air has left my lungs. And there is
nothing I can do but wait until the lesson has ended, Will
has changed into his clothes, and we can leave this place
so I can scream and cry and catch my breath. Right now, it's
as if I'm underwater and cannot reach the surface.
I had started drowning, slowly, 10 days earlier. I had thought
that maybe our blood test results showing a 1 in 10 chance
of having a baby with Down syndrome were no fluke and that
we were having a baby with a genetic abnormality. What did
my OB call it? Trisomy 21. Yep, I believed it was not only
possible, but probable. I mean, I was 39. Niels and I had
waited to make this decision to try for another child, and
now that we were finally ready, and had gotten pregnant fairly
easily, this would make sense. Not really, but in my mind,
I figured, why NOT me? This stuff has to happen to someone,
right?
And let's just say I had gone through my life feeling lucky
and grateful and happy and incredibly blessed. Good things
happened to me. I've traveled, had career success, met people
from all over. I got to live in Sydney, Australia with my
family for two years, for God's sake! Up until now, I had
led a pretty charmed life. So maybe this was the end of that.
And so something like this was not so much what I deserved,
but just what I expected. And it came to pass. And I needed
to get out of the YMCA before I totally lost it.
The ride home from the Y went something like this: frantic,
sobbing-so-hard-I'm-choking phone call to Niels, and he's
in a meeting and cannot get out. Voice mail? Uh, better not.
And then I called Maureen. And then Noelle. Sharing the news.
Driving and talking on the cell, my pet peeve. I couldn't
help myself. I had to talk to someone. News like this is urgent,
pressing, not something one can handle on one's own. At least
not something I could handle at that moment.
Nevermind that my kids are in the back of the minivan. Will
and Emma sat, quietly, finally asking what was wrong, why
I was crying. I'm pretty sure I scared the hell out of them
that day. I don't think I've ever cried so hard in my life.
That week is a blur when I think back on it now, 10 months
later. Sean was born in June, a month early, and while he
had a rough start, his life today at five months old is marvelous.
Simply and truly divine. He is the gift we imagined when we
decided to try for baby number three. We just didn't know
it last February.
Back in February, we would struggle over this "diagnosis."
We would go from darkness, to belief that we could somehow
raise this baby, to despair at the thought of a child with
disabilities, to grief at what we had lost. All of it was
real, and all of it was heartbreaking, painful and all-consuming.
The sadness was palpable. The simplest tasks took Herculean
effort.
I called my OB for support and solace. He listened, understood,
offered sleeping aids and suggestions for relief from the
crushing headaches you get from unrelenting sobbing. He didn't
judge me, he just tried to help.
I called our genetic counselor for support and information.
I needed to know everything I could about Down syndrome. She
listened as I told her my deepest doubts, my fears, my admission
that perhaps we might terminate the pregnancy. I remember
asking her what I should do. I remember asking her what she
would do. I was so desperate for anything, any help with this
decision. You see, it had gone from being black and white
- of course we'd keep the pregnancy, that's what we'd always
said, anyway - to gray, once we received the diagnosis. All
the hypothetical discussions in the world cannot prepare you
for the stunning reality of the Downs diagnosis. Because it
breaks your heart, and you are left wondering - rightly so
- whether you can pull your heart and yourself back together
enough for this baby, enough for the children you already
have, enough for your marriage, and enough for yourself. I
was having trouble getting out of bed in the morning, and
I wasn't smiling at all. For days. I know you don't know me,
but I'm a smiler. I'm a doer. Nothing gets me down.
This had become a Decision. And there would be waves of doubt,
flooding over us. Just when we'd think we were sure we could
do it, another wave would hit, and we would crash. Doubt.
Devastation. Helplessness. Niels and I would talk everything
over, and over, and over. Every day. Night. And we came to
this understanding: if either of us believed they couldn't
handle it, we would both agree to terminate. That it was more
important to preserve what we had - our marriage, our family
- than to risk it if one of us wasn't on board fully. Years
later, I imagined bitterness and regret if one of us went
along with the pregnancy against our will. So we left it at
that, and because there wasn't much time to decide (in PA
you can terminate up to week 22, but not legally after that),
we went ahead and made the appointments for termination. Just
in case. It was Monday. Termination process would begin on
Thursday, and the extraction would happen on Friday.
By Tuesday, I had decided that if Niels was okay with having
this baby, so was I. I couldn't do it without him, though.
I shared my thoughts with him that night. We talked about
living our life with no regrets, and how this has been our
mantra. I admitted that if we terminated the pregnancy, I
was sure I'd always regret it. He still wasn't sure he could
handle having a Down syndrome child. I could understand. From
what we had learned about Down syndrome, there were so many
related issues that could pose challenges to our child, including
heart defects, hearing problems, leukemia, vision impairment,
thyroid issues, cognitive delays and mental retardation, speech
and language issues. And more. Just the list of potential
problems was mind-boggling - it was hard to imagine any of
it. And that's just the physical stuff. What about the emotional
and social issues? What about Will and Emma? There were so
many things to consider.
And just like that, the next day Niels decided that he could
handle it. Like a light switched on, and he knew it would
be okay. I was incredibly relieved.
I called and cancelled the appointments for the termination.
Instead I made the appointment for the 22-week ultrasound
and fetal echocardiogram. Our baby would go on to have three
fetal echoes, and two more growth scans, plus five non-stress
tests and six biophysical profiles. He (a side benefit of
the amnio was that we found out he was a boy, which gave us
something fun to share with our family and friends) would
start out with two heart defects at his first fetal echo,
and miraculously grow out of both by his 34-week fetal echo.
He would confound the doctors, and astound us repeatedly,
just like that.
He would flip around so much in utero that he would wind
his umbilical cord around his neck three times, which would
lead to a significant drop-off in growth and slowing of blood
flow through the cord. Which would lead to his early delivery
by c-section on Thursday, June 22, 2006 at 4:10pm. Which would
lead to 16 days in the NICU, due to pulmonary hypertension.
He would remain under an oxygen tent for nine days, and we
would not hold him at all during that time. We would watch
him, though, and talk to him. Sing to him. Read to him. And
unless he was sleeping, he wouldn't stop moving. Naked except
for a diaper, rarely crying, in constant motion. Did I mention
he pulled his vent tube out twice the first night in the NICU?
Fiesty little sucker. Wasn't helping himself much, but he
was a fighter, at all of 4 pounds, 14 ounces.
He is now five months old. Weighs 12 pounds and has grown
six inches in length. He is healthy. His heart has a small,
benign defect (a VSD) which should close on its own by the
time he's three. He has severe hearing impairment and received
his first set of hearing aids at three months. They say he
should hear speech sounds (with hearing aids) after ear tubes
are placed in his ears at about six or seven months. Either
way, he already babbles a blue streak, has "conversations"
with us, smiles at everyone, wakes up happy everyday, and
is a human ray of sunshine. He is our baby Sean, the youngest
of three. He has blue eyes like his dad, a dusting of dark
brown hair, characteristic chubby cheeks (mine), a button
nose like his siblings, and a distinguished chin. And when
he crinkles his eyes to smile, it is the Cutest Thing Ever.
His breathing is noisy due to low muscle tone (a Downs thing),
and yet he has rolled over already (showing us that some of
his muscles work just fine, thank you very much.) He gets
physical therapy twice a month, and visual and auditory education
weekly. In our home. For free. With these wonderful people
who are specialists at helping people like Sean. And us.
I've taken my first sign language course, and we will start
going to a parent/infant session at the PA School for the
Deaf in the new year, to learn baby signs and meet other parents
and infants dealing with hearing impairment.
In short, we are getting on with it. It's our new journey,
and we are making the best of it. And you know what? It's
pretty darn great. I cannot imagine life without Sean. He
completes our family. He was meant for us.
I would never say this road has been easy. Once we made our
decision, we found peace pretty quickly. Happiness took its
own sweet time to return, but we were patient. In the meantime,
we devoured books and researched online and talked to families
and got involved with local support groups. We learned the
truth about Down syndrome: it is overwhelmingly positive!
Thankfully, we are surrounded by family and friends who think
Sean is as amazing as we do. This helps more than we could
have imagined back when we first heard the news. At that time,
all we felt was alone, devastated about our loss. Now, we
feel embraced, and blessed by our good fortune. Sean was indeed
a gift. It just took us some time to realize it.
Sure, we are at the very beginning, and what comes as Sean
grows up will be challenging. But we are his parents. And
we love him. Fiercely. As with Will and Emma, there is nothing
we wouldn't do to make Sean's life the best it can be.
He's off to a great start. And I'm having the time of my
life. I'm learning to swim in this new pool. Sean is a fabulous
teacher.
Written in November 2006
By Kathy McCartney Christensen
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