The Unbearable Burden of Raising a Child with Down Syndrome

A couple weeks ago I read the supposition that newborns are “morally irrelevant” and children with conditions like Down syndrome can be an “unbearable burden on the family and on society as a whole.”  

Shortly after that I read of a couple that sued a hospital for “wrongful birth,” saying that they would rather have aborted their baby if they would have known she had Down syndrome. 

So many things crossed my mind when considering these ideas and the people behind them, but I have come to the conclusion that it’s true, there is a nearly unbearable burden in having a child with Down syndrome.

My son, the youngest of six, has Down syndrome, so I know about the burden.  He has Trisomy-21, the most common form of Down syndrome, and the most common genetic disorder in the world.  It means he has three copies, instead of the typical two, of the 21st gene set.  Typical people have 23 pairs of chromosomes.  Today is World Down Syndrome Day, 3/21, get it? 

The additional chromosome causes delayed development in most aspects of growth.  From teething to potty training to reading and writing, nearly every aspect of development is delayed.  The only exception appears to be puberty and libido, according to more than one expert and relative we have heard!

My son has the “normal” delays and difficulties associated with DS; small ear canals, deeper palette, loose joints etc.  He’s 18 months old and still doesn’t walk.  He only has one tooth coming in, and it’s a molar.  He still eats baby food.  But these aren’t the burden.

He was born hypoxic, required resuscitation, spent several weeks in ICU, had a hole in his heart, a condition called Transient Myloproliferative Disorder which left him susceptible to Leukemia in the first five years and he is also prone to bouts of croup.  But these are not the burden.

People kill babies like me?

His blue eyes always sparkle. He is always ready with a smile.  He hugs and giggles and he even cracks jokes with the most hilarious of faces and perfect timing.  His wispy blonde hair sometimes stands up, sometimes lays flat, and sometimes looks like he put his finger in an electrical outlet.  His chubby hands and little sausage fingers readily clap in joy, caress your face with gentle affection, or use sign language for “more” when he’s after a treat.  But these are not the burden.

He has brought us membership into the “club” of families touched by Down syndrome.  We have meetings and family events, as well as parents-only gatherings with them.  We meet other parents like us and other children like ours.  We support each other, pray for each other. But these are not the burden.

He has made us aware.  He has opened our eyes to the world of people with DS.  Through him we have learned that we are more alike than different, that people with DS can live very independent and productive lives, that they want what everyone wants; Friends, love, work, their own space. They want to play games, sing karaoke, work at jobs.  He has made us better people and enriched our lives by opening us up to these wonderful, gentle, caring people.  But these are not the burden.

This is the unbearable burden of raising a child with Down syndrome:

The insufferable, barbaric, repulsive, inhuman attitude and arrogance of academics and others who would kill these people just because they don’t know about them. People who think death is better than slurred speech and a flatter nose.  That never to experience love is better than having friends, family, and lovers. That never smelling a flower is better than the wonders of spring simply observed and enjoyed. That no one could want a life of dry skin and straight hair instead of our societal concept of beauty.

I would rather spend my entire life with my friends with Down syndrome who are caring, funny, hard  working, and accepting of people’s differences, than ten minutes with what amounts to genocidal tyranny of the “enlightened.” The “morally irrelevant” and burden on society is the one who would kill people because of physical traits.  There are already too many famous examples of this kind of person.  

Don’t be a burden. 

Instead, change your life by learning about Down syndrome.  Watch “The Specials” web tv show. Meet or spend time with someone who has it if you have the chance. It will enrich your life.  To suggest that they should be killed at any stage of development is barbaric lunacy.  

I know Lucas will appreciate that we didn't kill him.  I know I am glad we didn't kill him.