Thomas smiled at me as
I held him in the ICU, a few weeks into his hospitalization status post open
heart surgery, and began singing to him what has become our song:
I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you . . .
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good
I’m the first to admit I
always dreaded having a child with Down syndrome (Trisomy 21). My wife and I promised ourselves we would be
done having our family by age 35 because we couldn’t accept the increased risk
of aneuploidy that comes with advanced maternal age. With all my wife’s pregnancies we declined
early genetic testing because we told ourselves that we wouldn’t terminate a
pregnancy, yet we always hoped and prayed that our child would be normal.
It’s not that I ever had anything against people with disabilities; I
just didn’t know how to relate to them.
I didn’t know what to say to them or how to interact with them, so I
conveniently ignored them. I didn’t know
how to love them.
Thomas’ 20 week
ultrasound didn’t show anything wrong.
In fact, it didn’t show a clear picture of much at all. It was on a subsequent ultrasound a month
later that our obstetrician saw a possible heart defect that catapulted us
into, what is for many expectant parents, the nightmare world of perinatology, high
level ultrasounds and fetal echocardiograms, genetic testing, and prenatal
cardiology. “Yes,” we were told, Thomas
had a heart defect—a significant one.
The one most commonly associated with Trisomy 21. Lucky for us, a new genetic test was
available with nearly 98% accuracy and no risk to the fetus, unlike with
amniocentesis or chorionic villus sampling. “Yes, lucky us,” I thought sardonically.
I vainly wished and
hoped and prayed for all the wrong things.
I pleaded that Thomas would be normal
and that his heart would spontaneously mend and be all better by the next
ultrasound. I begged God that Thomas
wouldn’t have Down syndrome or Edward or Patau syndrome or any other
syndrome. I didn’t want this to happen
to me. I wanted all my children to be
brilliant—erudite scholars of great renown who would one day change the
world. What parent doesn’t want his or her
kid to be smart?
When our obstetrician
delivered the test results, he added that it was ok (even in the context of our
shared faith) to think about terminating the pregnancy given the serious
physical defects. I’m now ashamed to say
that after this physician gave us the option to mentally go down that road, I
wondered if we were doing the best for this soul allowing him to be born with
such defects. In truth, I wasn’t worried
as much about how the condition would affect the child as I was about how it
would affect me. I am eternally
gratefully that my wife insisted on keeping this child without any hesitation
or reservation.
I called my mother
after receiving the test results, and I will never forget her response when I
told her that our little boy tested positive for Down syndrome: “Lucky you,”
she said, not a hint of sarcasm in her voice.
She proceeded to tell me about one of her clients, someone with whom I
went to high school but have not kept in contact, who adopted a child with Down
syndrome. “This child has been a huge
blessing to their family,” she said, “In fact, anyone who has one of these
special children will tell you what a blessing they are. So yeah, lucky you.” I used to think that people who said that
were giving themselves the equivalent of a participation trophy, but something
in that moment that I can only describe as an act of God made my heart begin to
soften. I really did begin to feel
lucky.
Through several other
personal, sacred experiences I began to see Thomas coming to our family as a
divine blessing. I looked forward to
meeting this special child when he came, as I imagined he would be, “trailing
clouds of glory.” His actual birth was
something a little more harrowing. He
was born by emergency cesarean section after a few dangerous heart
decelerations during routine monitoring and an ultrasound that showed no
amniotic fluid. As a medical
professional I remained calm—summoning the same clinical detachment I’ve needed
on multiple occasions watching patients die—but was inwardly horrified when my
tiny, cyanotic infant failed to cry or to move or to pink up during bag mask
ventilation. I pleaded with God for his
life while he was suctioned and intubated.
I wanted every possible intervention for Thomas. My heart had been changed and I felt nothing
but love for him.
I now write this in
Thomas’ hospital room on the surgical floor at Seattle Children’s where he is
sleeping peacefully. He has endured three
surgeries and over two months of hospitalization during his five and a half
months of life. Yet, I never wonder now
if we did the right thing keeping him, despite all he has endured. This refiner’s fire is not for him, but for me. I hope that in the end I will be as good a
person as he already is.
At the risk of sounding
cliché, my family and I have been blessed beyond measure through all of
this. We have received kind notes,
monetary gifts in excess of thousands of dollars to defray travel expenses and
medical bills, and offers to watch our three other children. People we had met only briefly opened their
homes to us when we needed a place to stay.
Many of these individuals gave not of their abundance, but the widow’s
mite. We all have been touched by a
spirit of love and compassion that Thomas has brought to the world and that seems to radiate from him. Our friendships are richer. Our older children have become more
caring. Our desire to help others is
stronger. Our lives are fuller because
of him.
I now come to my
point. I don’t know the latest
statistics on how many fetuses with Trisomy 21 are aborted (at one time I know
anecdotally it was quite high), but I must say in the strongest terms of which
I am capable that this practice must cease.
Perhaps not every expectant mother is ready to raise a child, much less
a child with extraordinary needs. There
is a solution: adoption. I recently
learned that there is a waiting list to adopt a child with Down syndrome. Some couples wait upwards of three years for
one of these children because they, unlike me before having Thomas, already
know just how truly awesome these children are.
To any expectant parents who are struggling to decide whether or not to
abort a fetus with Trisomy 21, I plead with you not to shortchange yourselves. If we do not stop aborting these children, we
collectively rob ourselves of the noblest, best, and brightest members of
society—the ones who really have the power to change us and the world for
better.
My eyes filled with
tears as I quietly sang the following verse from Stephen Schwartz’s For Good to Thomas before telling him
goodbye as I prepared to leave Seattle to go back home to resume work a couple
weeks ago. As I left the hospital I
played the words over in my mind, knowing I have been changed for the
better. I have been changed for good.
It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend . . .
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
I do believe I have been changed for the better
And because I knew you
I have been changed for good