Saturday, June 18, 2011
Kids Like Paul
Paul has Down Syndrome.
Most of the time, he wears this disability quietly. It doesn't pinch the day, it doesn't dampen his mood or ours,and the actual quietness of his world is masked to me by his ever present and sometimes overly helpful next two older sisters. Paul says very little, but he expresses much.
However this past month, the audiologist has indicated that he is struggling with a hearing loss that is the result of fluid in his ears (common for kids with his condition), and we are taking steps to remedy it. At these moments I'm reminded of what he faces and how everything is actually affected at some point by having that little extra chromosome, teeth, eyes, heart, hair, weight, height, speech, what he will understand, what sports he must avoid to prevent the likelihood of spinal injury, thyroid issues, and those are just the little things I remember from the instructive video "Your Down Syndrome Child" the hospital sent home in the complimentary diaper bag when we took him home.
"Kids like Paul" have these sorts of issues. But these sorts of issues can be dealt with, by modern medicine, therapy and vigilance. Children with Down Syndrome have bigger problems than all that come from having one more than everyone else. That moreness is often fatal.
"Kids like Paul..." have historically been left out of society in a hidden home somewhere or institution, they used to be hidden out of shame. One wonders if that shame ever was eliminated as now-a-days, kids with Downs are eliminated before they ever get to show how much love can be packed into a smile. It is an ugly fact which even some people who work in the field of Special Education do not want to believe, but there are statistical studies including analysis by the Guttenmacher Institute that indicate 90% of all children diagnosed with Down Syndrome in utero, are then aborted. Because their condition can be known, people have the luxury of deciding, "I don't want a handicapped child." ergo I will not allow myself to love a handicapped child. For those who say that's harsh, I recognize it's an agonizing decision, it should be because choosing to kill a child rather than love it should cause agony --I'd be more appalled if it didn't.
There are 5000 "kids like Paul" born each year in this country, thus there are 45,000 other children that were discarded. 45,000 ghosts that would have reminded all of us to slow down, to smile more broadly and to enjoy the great gifts of everyday life. 45,000 families each year that have willing allowed themselves to cut off a limb because they did not think that limb productive or necessary or perfect. That's a lot of invisible loss. That's a lot of scarred wounded hearts walking on this Earth unable to address an ache they chose to inflict.
The thing is, for a society that promotes inclusion and having broad compassion for the poor and the weak, we have remarkably little patience with the perceived imperfect; be it age, disability, weight. How are we as a society to become accustomed to differences if the range of possibilities is being ever more narrowed?
If science discovers a gene for diabetes or autism, will these folks simply get erased from the future as the 45,000 of 2010 have been? Human nature and past evidence would seem to indicate "Yes," that all flaws that are detectable should be eliminated. What about ADHD, Parkinson's, MS, MD, Cystic Fibrosis and Tourrettes? Somewhere in that list is a someone that you know, maybe even love. Imagine a world without all those people peopling it. As knowledge of the human genome expands, will our tolerance of the genetic possibilities lessen?
There are certainly voices willing to say that we ought to spare these folks pain by eliminating them before they are born. There are certainly voices today that openly advocate abortion for children who have physical and mental defects when compared with "perfect children," sometimes even after birth and these are the so called smart people of our society who work at universities and write op-eds in the New York Times and hold positions of authority and power in government. This attitude presumes the value of a person is economic and other dependent and thus only additional with effort having to be less than reward to make the proposition of care worthwhile. The value of an actual person is always universal and multiplies out the value of others, people exist to grow the hearts of all around, each person adds to life simply by being.
None of us who have children with special needs wish our children needed special education to manage things. None of us say "Yippee! My kid has a disability." We do however rejoice daily in our children regardless of their ability and thank God for each of them. We learn more and have more people in our hearts than our lives would have held if we hadn't been forced to rethink everything from dressing to feeding to school because we had a child with a disability. It's said when you have a kid with Down Syndrome, you join a club of other families that have kids with Trisomy 21. More accurately, you become part of a great adoptive family with special educators, speech therapists, occupational therapists, physical therapists, and all the other families you never would have met except for the fact that you see in the eyes of their child, your child's own. Who couldn't do with more family, community and support in this world? This is the little extra that children with Down Syndrome bring.
It is sad to me that 45,000 "kids like Paul" will not get to be loved as Paul is loved by his brothers and sisters, friends and family. It is sad to me that people decide sight unseen that it is better to never be born than to suffer being born known to be by others as "less than perfect." I've never known anyone to meet my son and say, "He's less lovable because he's less than perfect." They've met him and loved his smile, his eyes, his happy happy, happy spirit. His spirit is not suffering. Those who spend time with him find, their spirits are not suffering either. His joy (not his condition) is contagious.
Finally, being less than perfect ought to be known as a universal truth for all of humanity regardless of genotype, but being less than perfect, we forget that also applies to ourselves. By the logic of perfection and no suffering, the whole human race ought to die out, for to live is to struggle and even suffer a whole host of pains. To be human is to feel that emptiness as if one has never eaten even if a feast was set, to be able to be alone in a room full of people, and to in a moment sense how still time can stand when we ache and wish the ache would stop. We cannot exist and breathe without knowing that this life is fragile and the relationships within it all the more precious. The only thing that lessens suffering is love in action. Love in action comes most quickly and perfectly through others.
No wonder our world struggles with pain so, we've thrown away a lot of others. We've rejected a lot of "kids like Paul" and called it anything but what it is, a waste of a whole town worth of love a year; and we've done it out of fear of the other, fear of love, fear of service, fear of having our lives directed beyond our vision, and fear of how our lives would be altered. How frightening to face a lifetime with people who have gentle natures and whose natural response to everything, is to smile and be happy and yes, dump one's Cd's from that one particular bookshelf.
From a spiritual sense, the world would be deathly afraid of more "Kids like Paul" and prefer they never be seen, heard, known, born. Each "kid like Paul" that survives the gauntlet of the womb softens a bit of the edges of life and brings that community of his or her larger adoptive family. Each "kid like Paul" brings the corner of the world they live in a bit more love, a bit more proof that while we all naturally sin, our default desires in the deepest of our hearts is to love, to serve, to be part of a larger body than the island of our own selves.
Click Here to Join