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"Did you know he would have Down syndrome when you were expecting?" I've heard the question hundreds of times, and I've always answered yes. It's the truth.
Because my husband and I both
had a sickle cell gene, we felt it important to have genetic testing done on
our fetus. The test showed conclusively that he would not have sickle cell
disease but would have Down syndrome.
This morning I heard the question again when I stopped to get some tea at the local coffee
shop with my son. I chatted with the very nice barista, who had seen me
with my son on a number of occasions. It came up that he had Down syndrome, and
then she dropped the question.
After replying, I
felt compelled to know why she had asked. It was clear that she couldn't be
more than 25, but her question suggested she had some experience with
genetic testing. She explained that before he was born, her brother had been
diagnosed with Down syndrome, and that her mom struggled with the decision as
to whether to move forward with the pregnancy. In the end, her brother did not
have Down syndrome after all.
If I'm honest I'll say that the question always triggers me.
It brings me back to one of the most difficult and scary times of my life. Hearing
that your child will have a genetic condition is just scary. You have no idea
what is going to happen to you, and what life will be like for your child. The
doctors don't have any real answers—and how could they? Waiting for the birth
was like walking through a haunted house. I was frightened and confused and
intimidated. But even though my heart was racing and I wanted to turn back, I
had to just keep walking forward.
Often I hear people say, "I could never do that," or "I surely wouldn't abort my child no matter what," and I just shake my head. You never know what you will do until you're in a situation for yourself.
When genetic testing comes back positive for genetic
conditions, the parents are given time to consider ending the pregnancy. When
people ask me about whether I knew my son would have Down syndrome, it takes me
back to the choice my husband and I had to make. There is nothing as life-shattering
as planning a pregnancy, conceiving and then considering terminating the life
you've planned to bring into the world. It was a psychological and emotional
roller coaster that demanded a level of trust I found difficult to call upon.
I hear people say, "I could never do that," or "I surely wouldn't abort my
child no matter what," and I just shake my head. The statistics show that 92 percent of all mothers who receive a Down syndrome diagnosis terminate the
pregnancy. You never know what you
will do until you're in a situation for yourself. It's easy to project our
fears or confidence into some experience in our heads. But when it's real for us,
we'll learn who we become at that time, not before.
I once had a doctor ask me this question during my son's
regular checkup. I had a million
thoughts about why a pediatrician would ask me that question. I wondered what
he wanted to know about my family and me. I wondered whether the question was
motivated by his religion or sense of spirituality. I wondered if he was simply
trying to understand my family better in order to support us. And I felt judged
because maybe he thought people who continue with these pregnancies will have
children that place a burden on society. And then I felt exalted because maybe
he thought parents that make this choice are somehow special. All of this went
through my mind in just a few seconds. I wish I'd asked him why he wanted to
know, but I was too timid at the time. I simply told him yes we knew and
continued with the examination.
Saying yes to a child with a diagnosis is difficult, but the
rewards have been countless. What I didn't know when I said yes was that I'd
rise to the occasion. I didn't know I'd have so much support and love from
family and friends and people I didn't know yet. I didn't know how much I could
love a person and how deeply I could reach to meet his needs. I didn't know my
son's father would teach me how men can show up as outstanding loving parents who
advocate for their children. And I didn't know that my son would be so cute
that even though he's 9 years old, I still yearn to kiss his face a thousand
times a day.
Yes I knew he'd have Downs before he was born, but I didn't know
what I'd become and what it would take to parent him. I'm still figuring it out
day by day.