Tuesday, May 28, 2013

#TellHisStory: Fiercely, Protectively, Tenderly

I will give you hidden treasures,
riches stored in secret places,
so that you may know that I am the Lord,
the God of Israel, who summons you by name.
Isaiah 45:3

"It is my birthday, tomorrow.  Are you scared?"

Last night, my daughter smiled at me from the sofa.  "It is my birthday, tomorrow!"  Her life, for the past month and a half has revolved around this event.  Her birthday.  Twenty-two years.  Somewhere along the way, I must have told her that the idea of her turning 22 was scary to me.  I'm guessing it was more a comment about my age than hers, but it was a comment she remembered.

And now, as I sit at my computer writing, she has gone upstairs to get her tennis shoes - has turned the tv on in the exercise room.  Using the remote, she has switched the signal from TV to component, turned on the WII and is following the 45-minute exercise program that came with the Dance IV game.
Who would've ever thought, when the doctor put her in my arms those many years ago, when he said "Have you ever heard of Down Syndrome?", who would've ever thought that my adult daughter would be able to navigate her way through today's electronics and setups?

I had just finished talking to my mom on the phone - in my hospital bed - my then-husband on his way from work.  "It's a girl!"  I told her.  We were so excited - planning when my parents would be able to come out and visit - the birth unexpectedly early.

Then the doctor came in.  "Have you ever heard of Down Syndrome?", he asked, in his oh-so-professional manner.  I was alone in the room.  His voice echoed across shiny, shiny tile and bounced off  antiseptic walls.  I was waiting for my daughter to be brought to me.  My new-born, tiny daughter.  The crying girl they had laid on my chest  - then taken away - her little lip pouting.   I couldn't speak - Retarded.  - my first thought.  Images of that special class from my elementary-school years.  Drooling, hulking, shuffling.  Those kids we rarely saw - never spoke to - never played with.  We had a neighbor.  She used to play with a hula-hoop.  Laughing and spinning.  Alone - as my friends and I played across the street.  Mongoloid.  

The word came out - I spit it out at the doctor - while inside I screamed - No, no no no no no no - an internal wail of loss, of sorrow, of insult, of horror, of pain.  Not my girl.  Not my baby.  Not my child. I'm sure he saw it - the disbelief and pain - held together by the sure knowledge that he was right.  I had seen the shape of her head before they took her away.  The shape of her eyes.  Even in the moments after birth, my heart knew.  And in that moment - I was scared.  I was scared of the prospect of an unfamiliar life.  I looked into the future and saw all of the would-nots, and the could-nots, and I was scared.

My father called to congratulate me.  He had only just heard the news - the good news of the birth of another granddaughter.  He called to share in my happiness.  He listened to my tears.  He tried to comfort me, to assure me; I could hear the sincerity in his voice as he tried to tell me everything would be ok.  It was a short call - I wasn't celebrating anymore.

The doctor explained about Down Syndrome.  Briefly.  There were about 50 'markers' - he had recognized enough of them in my daughter that he was fairly confident in his diagnosis.  Diagnosis.  It sounded so clinical.  So dry.  So sterile.  Not like that soft, warm body that I remembered from the delivery.  That sweet face.  Those pouting lips.  To know for sure would require a test - with a long, complicated name - they needed to count her chromosomes.  Down Syndrome meant an extra one - Trisomy 21 - three chromosomes instead of the typical two, on the twenty-first pair out of twenty-six.  Who would have thought that one extra chromosome could cause such a change - mental retardation, low muscle tone, along with multiple possible health issues: heart defects, hearing loss, vision challenges, delayed speech...

We had the karyotype done.  It would take two weeks to get the results.  Sierra spent one week in the hospital.  In a glass-walled incubator.  I could hold her finger through the arm-holes cut into the sides.  She was so tiny - she wore a pint-sized string bikini, a surgical mask, tied at her sides - so she could be exposed to the light - the jaundice-defeating light.  I drove to the hospital everyday to spend time with my baby.  I called in the middle of the night, when she was fed; I made my own body conform to her schedule.  We brought her home - wrapped in way too many blankets - I no longer cared about how many chromosomes my daughter had or didn't have.  I loved her for her - fiercely, protectively, tenderly.

"It is my birthday!"  Sierra is so excited.  It has been twenty-two years.  We barely knew what to get her - she has just about everything.  We did a pizza-birthday with the youth group from our church.  Technically, Sierra's too old for the youth - she already graduated from high school.  So we told her she was one of the youth leaders.  Now she tells us she's in youth ministry.  Yes, she uses those words - she read them in the church bulletin.  We had a bowling party with her boyfriend's family - she happy-danced her way up and down the alley all afternoon.  My husband got her a Redskins jersey and cap.  She's decided to ditch the Cowboys since we moved away from Texas...  I got her a subscription to Country Weekly, one of those gossip-y, glossy, full-of-pictures-of-the-stars magazines.  She'll look at and obsess about the pictures and the articles for years to come.  My sister sent her a Starbucks card; she loves her 'chocolate chinos'.

I am still scared, sometimes.  Scared of my oh-so-wrong perception of Down Syndrome back when I didn't know any better.  Scared of others who might still think of my daughter as less-than, or not-as-good; scared of bullies, scared of careless, hurtful remarks.  I am scared of stories on the news of wickedness and violence against the homeless, against the differently abled, against the innocent.  I am scared of my social-butterfly daughter alone - like my hula-hoop neighbor - laughing and smiling in her own world.  But I am no longer scared of her.  I am no longer scared of that syndrome - voiced by that doctor twenty-two years ago.  I am no longer scared of would-nots and could-nots.  Oh my goodness!  My daughter is full of surprises;  she has shown me joy; she has taught me about love - unconditional, un-prejudiced, live-out-loud love; she has given me grace.

Heavenly Father, you knew exactly what you were doing when you lent us Sierra.  Thank you for the blessings she has brought into our lives.  Keep her safe, keep her healthy, and continue to surround her with your love, your joy, your light.

Linking with TellHisStory


  1. Happy birthday, Sierra! Blessings!

  2. I remember, I love her too!! Happy birthday Sierra you are a true blessing...
    Aunt Wendy

  3. What a beautiful daughter you have! Happy birthday, Sierra. Love these authentic words from a mother's heart.

    We just saw Aaron Shust in concert last Sunday night and he shared about his son born with Down's Syndrome last year. I was encouraged by his love, as I am yours. Thanks for sharing this.

  4. Lisa, Sierra really is beautiful, inside and out. It warms my heart to know that others think so, too. Thank you for your kind words.

  5. Oh goodness, I love this. I've worked Sp Ed in the past and have a sister who is fully blind. There is beauty even in what others would deem disabilities or imperfections. I think when one is staring down a diagnosis, the what-if's of the future scream them down....and it's hard to see what life will look like. But the grace. Oh, the grace. Thanks for sharing.

    1. Yes, grace is such a good word for Sierra in my life. She is an unexpected blessing!


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