Beyond Down Syndrome

A new commandment I give to you, that you love one another, even as I have loved you, 

that you also love one another. 

John 13:34

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 

gentleness and self-control.

Galatians 5:22

I am in the office.  The room is dark except for the light of the computer screen in front of me.  I am reading another birth story, another family surprised in the birth of their son, a son with Down Syndrome.  A family whose joy at the birth of their child was tempered by the diagnosis of Trisomy 21.  And it is so familiar.  And heart wrenching.  And I feel tears pool again because this scene, this moment still lives fresh in my memory - 22 years later.  Because in that moment of revelation there is loss.  Loss of a life expected.  Loss of dreams of what could have been.  Loss of solid ground.

And then I hear the creaking of the floor above me, and soon the sound of feet on carpeted stairs.  And then I feel my daughter's soft arms wrap around me from behind my chair.  I reach up and pull her arms tight to my chest, savoring the moment.  Good Morning. My voice breaks the stillness.  I turn and look at her face, reflected in the light of a thousand pixels.  And my heart, oh my heart overflows with the love I feel for her, captured by that morning hug like a beam of warm afternoon sun caught in a prism and then exploded into a hundred rainbows.  My heart explodes in a hundred rainbows of love.  For this daughter.

And I know that I share this feeling, this expansion of the heart, with a thousand other mothers - a million mothers - countless others who love their children as I do mine.  And I realize, again,  that there are fewer differences between us than there are shared experiences.  My daughter has Down Syndrome.  It has been a journey of joy, not a death sentence.

Yet there are differences.  More doctor visits.  Therapies.  Early Intervention.  IEPs.  Inclusion vs self-contained.  There are decisions to be made and scaffolds to be built.  There are differences.  However, great strides have been made in quality of life, in education, in health, and in acceptance of our differently-abled population.

October is Down Syndrome Awareness Month.  I'd like to share a few facts:  one out of every 691 babies born will have an extra 21st chromosome.  Although the age of the mother is a factor, the majority of these babies are born to mothers under the age of 35.  Down Syndrome occurs across the spectrum of race and economic level.  There are approximately 400,000 people living with Down Syndrome in the United States.  The life-expectancy of someone with Down Syndrome has increased from 25 in 1983, to 60 today.  Cognitive and developmental delays are very much a part of life with Down Syndrome - and the range of these delays can vary greatly.  With help and support, people with Down Syndrome lead full and productive lives - they work, they attend school, they participate in their own life decisions.

I am in the office - thinking about the things I wish and hope for my daughter - things I wish and hope for the people around her - things I wish and hope for new parents and other families with sons and daughters.

I wish that being 'special' wasn't an automatic label based on a diagnosis for a young woman who, in my eyes, has truly EARNED the description based on her unique personality, her unique outlook, her unique actions.

I wish that people would take time and effort to get to know her - get past the challenges of understanding her speech, past her loops of conversation topics, past her wanting to please, past her drama moments - to her sense of humor, to her empathy, to her unique intelligence, to her spirituality, to her joy.

I wish there wasn't disappointment in the disability, but rather celebration in the ability - I wish it was called Up Syndrome.

I hope that other parents, other families, other communities can learn as much from their differently-abled members, sons and daughters, as I have learned from mine.  I wish them joy in the journey of mixed challenges and blessings.

I hope that my daughter will be safe from any who want to take advantage of her.

I hope she continues to search for and find purpose.

I hope she experiences true friendship.

I wish for more than surface acceptance - I wish for relationship - for my daughter, for others like my daughter, for the families of people like my daughter, and for the communities in which they ALL live.  Active, vibrant, caring. supporting.  Beyond Down Syndrome.

Jesus calls us to fellowship - to love one another as He loves us.  Unconditionally.  With compassion, forgiveness and grace.   I wish for the kind of fellowship that sees the heart of its members - that celebrates the differences - that cultivates all parts of the vine - and recognizes the fruits of the spirit in every member - no matter the number of chromosomes.

Heavenly Father, Today I thank you again for the gift of my daughter.  She is your perfect child.

*** If you are interested in more about Down Syndrome, or about reading some other blogs, please feel free to use my Down Syndrome tab.  I highly recommend the blogs by Noah's Dad, and Kelle Hampton for stories.  The National Down Syndrome organization sites are full of information and other resources.

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