Tuesday, April 28, 2009


More than 9 out of 10 mothers who hear the words "I'm sorry, but the tests we ran strongly indicate that you have a trisomy 21 pregnancy" elect abortion as their preferred treatment.1

Trisomy 21 is the technical name for Down Syndrome (DS), but it also has a personal name in our family.

When my wife and I were told just minutes after our Dylan was born that he had DS, we were stunned. Not only did we not see Dylan's DS coming, we were taken back by our own cultural reaction to having an abnormal child.

Within minutes after his birth, Dylan was rushed to Intensive Care because the attending doctors thought he might have a septal wall heart defect, not uncommon in DS children.

Not only did Dylan not need heart surgery, a very good pediatric cardiologist told us Dylan’s heart was completely normal. It still took awhile for us to believe the good doctor. In part because a lot of people had already lined up to tell us that Dylan was NOT normal, in fact could NEVER be normal.

So-called experts in their fields, friends, even family regretted Dylan would never be normal; never be very social; never be phys
ically active; would probably not learn to read; never be athletic; never really independent.

In short, we were informed that Dylan was going to completely change (=burden) our lives. A resident physician sat on Dylan's mother's bed just hours after his birth and asked if we knew that tests could have been run during pregnancy that would have alerted us to Dylan’s trisomy 21 condition.

When I quizzed the doc on what our choices would have been had we had the test (amnicentesis) now knowing it would have come back positive, he briefly paused and then replied, "You could have had the choice to terminate."

Talk about an anomaly! Here sat a physician advising a patient who had just given birth of their choice to kill their unborn child before birth by abortion, never mind the born baby was just down the hall in intensive care!

Why? Because most of American culture sees Dylan's abnormalities as posing a greater burden than any family should be forced to endure.

I’d like to tell you that Dylan is completely normal. But I need to be honest – he’s not. In fact, in many respects, he’s very abnormal.

For starters, he likes math. He's certainly not an exceptional math student, he just likes it.

He likes doing "chores" that no one else likes to do. He especially gets into vacuuming -- all 3 floors! Not normal.

On most days he even enjoys cleaning his own room. Remember, he's a teenager…way abnormal!

Dylan loves music, but of course that's standard operating procedure for a teen. Yet instead of privatizing his favorite tunes (with an ipod and earphones) he insists that everyone listen AND join in the celebration.

As some may know, we’re a big family. My children w
ill tell you that I lament the fact that you can come and go at our house and frequently no one ever knew you came and went.

But if Dylan's present you can't enter or leave a room without being greeted with "Hi," or "Bye - I'll miss you" when you came and went.

Dylan likes sports. That’s actually pretty normal.

We swim as a family. If you want exercise at our house, the bus goes to the pool.

If you’re born into our family, we drop you into a la
p lane and you either swim a 50 or else – it’s up and back, sink or swim at our house. So Dylan’s a swimmer by default.

Ever try the butterfly swim stroke? Dylan swims it head up - impossible for most. I think he does it that way because he's interested in seeing who's around him.

Dylan swims USA swimming – with his own age group – which means he’s now swimming against 15-18 year old men (he’s 16).

His swim coach used to say the only way we’ll ever find out how fast Dylan can really swim is to put either his sister or me in the lane beside him and say, “Swimmers to your mark… .” I can no longer stay with him even for 25 yards in ANY stroke and I was a swimmer.

Imagine racing against someone who’s really good, but when you fall behind, they slow down and wait for you to catch up. Dylan’s what I call a “social” swimmer. He's more interested in everyone finishing TOGETHER than he is in winning the race.

Totally abnormal.

Why are DS children often so abnormally wonderful? Because people usually matter more to them than stuff or activity. Someone's physical or mental limitations don’t usually impair Dylan’s judgment of their value.

One of my daughters has helped care for a girl for over a decade who the local abortionist tried to abort but failed. Maggie was aborted but delivered alive in an area hospital, albeit with brain damage. She can't talk, walk, feed herself or do anything "normal" children do.

Nevertheless Dylan loves to hang out with Maggie and make her laugh (and Maggie loves being with Dylan and makes him laugh).

Turns out that Dylan's fetal anomaly, anticipated to be a greater burden, has instead been a greater blessing.

When I first met Dylan, I prayed "Why Lord?"

Now I pray, "Dear God, please help me to be more abnormal like Dylan."

[1] Caroline Mansfield, Suellen Hopfer, Theresa M. Marteau (1999). "Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review". Prenatal Diagnosis19 (9): 808–812. doi:10.1002/(SICI)1097-0223(199909)19:9<808::aid-pd637>3.0.CO;2-B. http://www3.interscience.wiley.com/cgi-bin/abstract/65500197/ABSTRACT. PMID 10521836 See also David W. Britt, Samantha T. Risinger, Virginia Miller, Mary K. Mans, Eric L. Krivchenia, Mark I. Evans (1999). "Determinants of parental decisions after the prenatal diagnosis of Down syndrome: Bringing in context". American Journal of Medical Genetics 93 (5): 410–416. doi:10.1002/1096-8628(20000828)93:5<410::aid-ajmg12>3.0.CO;2-F. PMID 10951466

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