Tuesday, February 21, 2012

Valuable Lives



When my grandparents speak of CB it always results with a pained look, a head shake and an inaudible tsk-tsk accompanied by something like... "It's such a shame,"  "You don't deserve to be saddled with this responsibility,"  "Life is so unfair."  For the past sixteen years, the general vibe from CB's great-grandparents is love and support, but love and support steeped in pity and remorse.  
I love my grandparents dearly and know that they can not transcend the times in which they were born and raised.  Their generation saw cognitive disabilities as a complete tragedy and few children like CB escaped a life of institutionalization.  The fact is, if it were anyone but them (or someone from their generation) I would be put off by the implications that drench their statements, but I know what they are trying to convey and it comes from a place of compassion.   I had always believed that their views were remnants of decades past, but the truth is that no matter how politically correct and progressive we Americans portray ourselves present day, we continue to assign value to human beings.
I never put much thought into these things until I found myself on the other side of the fishbowl, loving someone whose life isn't as "valued" as those who fall under the umbrella of the Great Bell Curve.   With this experience, I hold one conviction:  I believe every human here on earth has a purpose, a life, a contribution to make, and (unless that person is a horrendous psychopathic, murdering deviant) we should not dismiss someone's quality of life because their cognitive capacity is "less than" the norm.
But we do. And if you follow the news you know the stories of which I speak.  
It is true that CB will not get a typical education. She will not get married and bear children thus carrying on her next generation.  She will not write great works, cure cancer, or engage in philanthropic activities that give back to her local community.  She will not leave her legacy in the traditional ways.  Does that make her life a shame?  A burden?  A pity or waste?  Dare I say... meaningless?  

CB may not have a traditional legacy but it's always been my opinion that to love and be loved in a way that transforms another is a life with merit, with purpose, with value.  CB has touched lives, changed lives, because she has lived.  Because she is who she is.  True, there may be little to no intentionality behind her effect on others, but I don't think that matters.  Throw a stone, see a ripple.  I do not care who you are or what you can and can't do, if you're here in this world, you have thrown a rock into a pool and you make a ripple.  Hopefully a ripple that brings goodness and kindness, hope and joy.


I unfortunately know of many TYPICAL or "normal" people who lead lives that are closer approximations of "meaningless" than my daughter's.  Lives that take up space rather than truly live, give, and love.  Lives that are wasted with drugs or chasing materialism; lives of self-involvement, shallow pursuits, bitterness, and lack of connection, when they have a chance to do so much more.  Those people, in my mind, are "normal" but worth far more of my pity than a little girl who stims and hums in her room.  CB has no choice as to the kind of life she lives.  Others do, and what they choose to do with it sometimes is the real shame.  


Our lives can be measured by many things - contributions, offspring, legacies, good works left behind, kind deeds that change the destinies of others.   The greatest Litmus test of all, for me at least, is if you have loved and been loved.  Not necessarily by the masses... perhaps just by one.  Held to this standard, CB's life is not without merit.  It is a life to be proud of.  A life that matters.  She has certainly transformed me, her father, her three sisters, her stepdad, and her grandparents.  For me, my decision to write, my decisions to help others, the atoms which make up every tangible and intangible part of me have been ever altered because of CB and therefore every life I touch in a remotely positive way can be traced back to CB's influence.  Multiply that by the good that radiates from all those I listed and the ripples continue.
Whether life ends at our death or continues on after our bodies fail us, I will never agree with the assertion or subtle implication that CB's life, or any other person's life with different cognitive abilities, does not have the ability to impact others, leave a legacy or hold value.  There are things in this world that are a great pity, but CB's disabilities are certainly far from one of them.  I am not burdened.  It is okay to wish that she was a "regular kid" and even to feel the shadow of that loss, but pity does not have a place here.  Now, don't get me wrong - life for CB, me, and our family is not without chronic challenge and sacrifice.  However, I can't go into that realm of determining if life is fair or unfair because quite frankly - life simply "is."  WE, as humans, place labels of "fair and unfair,"  "right and wrong,"  "value and pity" on everyone and everything when really life and all the drama it conjures simply "is."  How I chose to understand it, chose to face it, learn from it, make something productive from it is up to me, not the fates.  
At the end of the day, if you measure Quality of Life by happiness alone, I can honestly say all 4 of my girls have won the lottery.  They all are here for their own purposes, will discover their gifts, will throw their own stones into the pool and I'll watch each of those ripples with awe and pride.  Especially the one who never knew the power and significance of the stone she threw.  A stone that others might say didn't matter, but because I listened closely, I heard it splash.  Because I watched closely, I saw the ripple stretch out beyond the horizon.... where it endures across forever.  

12 comments:

Leah said...

I am waiting for Daniel to come out of speech therapy. I will read this again, many times. suffice it to say, I am forcing the tears to stop falling. Thank you.....

kario said...

I have goosebumps.
Thank you so much for saying this. I don't honestly know how anyone could feel as though they have the right or the knowledge or the insight to judge someone else's value. We have no way of knowing whose lives will be touched in what way and, so long as they are not damaging others directly, I say that's good enough. Live and let live.

Elizabeth said...

Those last lines made me cry. Incredible -- I feel like I could change out the name of CB and put in Sophie and you would have written my heart.

Thank you.

perfectlyflawedwoman said...

CB has made a GREAT impact on my daughter and I. I believe she has less fear of those that are "different" & more empathy than she would have had, never having met CB. CB has an inner light that shines through and she had touched a place in my heart that will always be there, just for her. We still talk about how special she and your family are and miss you all dearly...

MC (formerly MB)

Elizabeth said...

I linked to this on my blog today.

Zoey's mom, Heather said...

You have also written what lies deep within my heart, bursting to be said, some how, some way but not knowing with what perfect and beautiful words to do my child justice.

Thank you for this, on the cusp of my wonder girls 5th birthday. Thank you..

Noan said...

When my grandmother heard that my younger daughter had cystic fibrosis she said, "If she is going to be sickly it is better if she would just die."

My grandmother had had a hard life, and had watched and cared for people she loved as they suffered through illness. I understood that and I never took my grandmother's words to heart. Even as a young mother the words of my heart were very different. They were the words I read in your post today.

Found this post today via Elizabeth's blog.

Kerstin said...

Thank you for writing so beautifully about the value of our children. I hope everyone in my family reads this blog and stops with the pity and "unfairness" of it all. Like Elizabeth stated, this post could easily swap CB's name for Brooke's and conveyed our emotions with pinpoint accuracy. Thank you for articulating what is in our hearts.

Carrie Link said...

Elizabeth sent me over here. I'm so glad she did. This is just lovely.

Alicia (Dr. Mom) said...

I appreciate all the visits from new and old readers. Thank you especially elizabeth! It means so much to me that you liked what i wrote bc you are a genius with words and i am always in awe of your prose :)

The Scott Family said...

This is my first time on your blog (found you through blogzilly) and will be bookmarking this post. What a beautiful way of explaining our children's value.

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