Friday, July 5, 2013

SPECIAL NEEDS ETIQUETTE 101: Life Matters

 
You created every part of me;
    you put me together in my mother's womb.
I praise you because you are to be feared;
    all you do is strange and wonderful.
    I know it with all my heart.
When my bones were being formed,
    carefully put together in my mother's womb,
when I was growing there in secret,
    you knew that I was there—
you saw me before I was born.
The days allotted to me
    had all been recorded in your book,
    before any of them ever began.
~ Psalm 139:13-16, GNT ~

I still remember the shocking news like it was yesterday.  It was a sunny Spring day when the boy's soccer team decided to take on the responsibility of moving the goal to the regulation boundary lines.  In a moment's time, the heavy goal toppled forward onto a player who was practice kicking, striking the back of his head and neck, leaving him critically injured.  Our congregation anxiously monitored any updates on the player, who was part of our close-knit church family, as his condition seemed to veer from miraculous life to almost unstoppable death.  Much to our delight and relief, the boy's life was spared, but he faced a long, agonizing road to recovery in his new life with quadriplegia.  

After one difficult visit with the boy's family, I remember hearing the now defrocked, gossip-prone pastor say, "That boy would be much better off if he had just died."  My shock came in hearing such a supposedly faithful leader utter words completely devoid of any faith.  Didn't this young man's life and suffering have purpose and value?  Why would you wish him dead?

Fast forward nearly 2 years later, and my husband and I became the parents of a child who looked as if his future were hopeless.  My own sister-in-law had uttered to me in his first year of life, "Don't expect anyone to feel sorry for you.  You knew hemophilia was a risk, and you just had to have him anyway."  Talk about a sucker punch to the gut!  I sobbed from my toes.  How could such words come from a family member, whom I was expected to get along with peaceably?  Another sister-in-law, who had once been my friend, viewed our angst over our son's fresh diagnosis with disdain.  "It's not like he's going to die from it or anything," she uttered as if it were no big deal.  Those painful words also caused a great chasm in our relationship.  (Ironically, both of these women later ended up having children diagnosed with special needs.)

People can be unbelievably insensitive when it comes to issues of life or death, especially in regards to our children with chronic diagnoses.  In a culture where relationships are disposable and families struggle desperately to stay intact, children are too often treated like just another consumer product or trophy of success.  "Quality of life" morphs into the distorted requirement that life be devoid of all pain or difficulty.  Sadly, we humans then tend to lose all sight of the fact that, not only is this an impossible pursuit, but there is miraculous wonder in every human life on this planet.  Yes, we should offer compassion and comfort to those struggling, yet that should not be our ultimate goal here on earth.  After all, what we face in this life is temporary.  Our relationship with our Maker is eternal.

While previous entries in this series have mostly had separate sections to address the concerns of parents of children with special needs and another to address the typical public at large, my message to both in this entry is the same.  Every life matters.

A life with disability or chronic illness is a life worth living.  Regardless of the level of our cognitive or physical function, we each contribute to society by how we affect and transform those around us.  The "normal" world learns compassion, adaptability, acceptance and to stop taking life's myriad blessings for granted by coming into contact with those who are challenged.  Few people would disagree that a life completely devoid of pain and difficulties tends to result in a tremendously shallow individual.  The truth is that we are far more impoverished without the unique, remarkable touch of those with special needs.  

My own life is much richer because of the different diagnoses my children face.  My sense of humor has been increased exponentially because of the awkward and often weird things we encounter.  I have also likely cried more tears.  My family has met far more fascinating and inspirational people.  There is a depth to my life that wouldn't exist without both my children's hurdles and those challenges encountered by the families we serve.

The next time you feel inclined to shake your head and offer "choice" as an out to those who have discovered their pregnancy may result in a child who faces difficulties, stop yourself.  While families like ours may face many more obstacles than average, our loved ones are "fearfully and wonderfully made" just like those who are ordinary.  God offers purpose and hope for each and every one of us.  (See Jeremiah 29:11)  And this world would be a much darker place without those who have unique abilities.  Again, every family is only 1 emergency room visit away from living with special needs under their own roof.  Live every day for the gift that it is, speaking words of kindness, love, edification, and life into all who are blessed enough to possess it.

PRAY:  Father, life in every form is a rich gift from You.  Help us to treat it as such.  Change our minds and transform our hearts.  Guide us to treat every person we encounter with the dignity you endow.  Thank You for your lovingkindness that is not limited by our abilities.

1 comment:

  1. Two thoughts: "We" as in "low info peeps" have such an entitlement mentality that if it's not what's easy and comfy, "we" don't want anything to do with it - never mind about the character, love, servant heart, etc. God may be building in all of us! AND "We" take the easy way and don't look beneath the surface to consider the ethical, moral and spiritual issues in the hard stuff of life. It's easier to push it aside when hard stuff comes directly or indirectly! I thank God for your heart and your humor as you walk a road less traveled with honesty and vulnerability! Hugs!

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