Monday, December 13, 2010

How Do You Get There From Here

[I wrote this for the Disability Blog Carnival that Dave Hingsburger is hosting in December at Rolling Around in My Head.  The theme is 'dark nights of the soul and what gets you through them.']

Six and a half years ago, my husband and I got the news that our baby girl would be born with Down syndrome.  I've heard some parents say getting this news wasn't a big deal for them.  But it was huge for us.  I wept.  We were both in shock.

The worst moment for me was sitting alone at the kitchen table after getting off the phone with the geneticist.  My husband was at work and my two year old son was still asleep in his crib.  The geneticist had called to give me the results of the amnio.  She seemed like a perfectly nice human being, but once I had made it clear we were still going to have the baby, she didn't really have anything else to say to me.

I was reaching out, asking what now, where do we go, who do we talk to...  She gave me the rather unhelpful tip that there were probably support groups and I could check the yellow pages.  The yellow pages???  Getting off the phone with her I felt abandoned and at the bottom of a deep, dark hole.  I had to call my husband, I had to tell my family.  It seemed like nothing but pain in front of me.

But here is what brought me through the first few weeks:
  • My husband - as scared and upset as he was, from the very beginning he believed and told me that everything was going to be OK
  • Faith - Just minutes after we first found out our daughter might have Down syndrome, I was alone in an ultrasound exam room for a few minutes.  My mind was racing and I picked up a magazine off the top of a pile.  I flipped it open and read "For we walk by faith, not by sight."  2 Corinthians 5:7   I had flipped the magazine open to an entire page of quotes on 'The Joy of Faith.'  We gave our daughter the middle name Faith.  
  • Grace - I few months earlier, during a morning prayer, the sentence "Hold my hand, we'll do this together" came into my mind.  I imagined myself holding Jesus' hand over my heart.  Being a not very good, lapsed Catholic, I rolled my eyes at myself and thought I must be crazy.  But later, after we got the news about Becca, I remembered and realized, oh, this is what God was talking about.
  • Hope - One day I took my two year old son to the mall play area and saw a beautiful little girl with Down syndrome playing.  Seeing this laughing, playing, happy child, I could imagine my daughter too.
  • Courage - I introduced myself (abruptly) to the girl's mother, saying "Your daughter is beautiful.  I've never met a little girl with Down syndrome before.  I'm going to have one too."  This was crazy courage for me, a shy introvert, especially back then.  It was also a desperate courage, I couldn't let the chance pass me by to connect with a real live mom.  She invited me to a playgroup for families with children with Down syndrome and I went to my first meeting while I was still pregnant with Becca.
  • Strength - A friend sent me the book Choosing Naia by Mitchell Zuckoff.  Her card said simply 'Admiring your strength.'  I didn't feel strong, but the story of this family gave me a model of strength and courage to follow.
  • Love and  Family - my second call, after calling my husband, was to my sister.  I knew I could count on her and my whole family and my husband's for their love and support.
And now it is six and a half years later.  It was very hard to write this.  Not because it is too painful to bring back these memories, but because they don't really make much sense to me anymore.  What was the big deal?  Becca was a baby, now she's a girl.  She's beautiful!  She's our daughter and we love her.  She has her strengths and she has her challenges.

I remember those early weeks, but my perspective is so different now.  In six years of loving Becca and becoming a part of the Down syndrome community, I've gone from the fear and grief of my daughter's diagnosis to embracing and finding joy in her life.

One day, while I was pregnant with Becca, I went to the library with my mother in law and my son.  At one point, while the two of them were occupied looking at books together, I snuck off on my own to look for ABC for You and Me.

It's a sweet rendition of the alphabet with pictures of children with Down syndrome and objects for the letters of the alphabet.  But when I first glanced through it I could hardly stand to hold it.  The faces and the smiles and the mannerisms confused and scared me.  I put it back up on the shelf like it was on fire.

And from there, I have arrived here.  Reece's Rainbow is an International Down Syndrome Orphan Ministry.  I read the blogs of families adopting and I pray for the little ones waiting for a family.  And I can hardly stand to tear my eyes away.  I see a little girl that looks like Becca and a little boy reminds me of her friend at school.  I don't see the differences, I see someone the same.  The same as my child whom I love so much.

There are whole countries, whole cultures, that hear the words Down syndrome or disability and imagine the same deep dark hole I was in.  And now that is what I despair over.  So I ask myself, what helped me climb out of the darkness and how can I help show someone else the way?