Saturday, December 10, 2016

Only Jesus

“Jesus, only Jesus.” 

I closed my eyes and smiled as I took in his voice.  Joseph was singing two rows behind us, and I just knew the angels listened through their tears.  His passion, his worship, reached deep into my soul.  Cerebral Palsy claimed control over Joseph’s body, and his words were difficult to understand.  Except for “Jesus”. 
I could hear Jesus. 
Emmy was being shy and not excited about mingling, but she had eyes for Joseph.  She peered over my shoulder and I could see her in my peripheral, smiling and waving, like she’d always known him.  I looked back and saw him smiling and her, and I was filled with such love.
Jesus, only Jesus.

Before Emmy, I think Joseph might have made me uncomfortable.  I didn’t understand his intellect.  I wouldn’t have been able to see his heart.  I didn’t see how strong his parents must be or how much they so obviously adore him.  Before Emmy I didn’t know this immediate bond that is passed on every time a child with special needs is born.  This admiration we, as parents, have for each other.  This mutual defensiveness, this fierce loyalty.  And I wouldn’t have been able to fully appreciate Joseph’s song.
Jesus, only Jesus.

I smiled and waved at him.  I caught his mom’s eye, then his dad’s.  They were smiling at Emmy with the same smile I had given their son.  They understood us.  I wanted to talk with them, to soak up the knowledge and wisdom they’ve gained over their years with Joseph.  I wanted to ask them how they deal with stares and questions. I wanted to ask what they do when people point or when kids ask what wrong with him.  How do they handle the fear when he gets sick or questions of what his future holds?  But I didn’t.  Instead I continued listening as Joseph sang.  And I knew the answer. 

There was only One who held my answers.  He’s the same One who gave us perfect treasures to cherish.  He’s the same One who gave us our children to touch the lives next to us and fill a place in our hearts that’s missing from most.  He’s the same One who holds their futures and dispels our fears and wraps us in the simple things, like a beautiful song…
Jesus.  Only Jesus.

Monday, December 5, 2016

To My Fellow Rockin' Mama

I think it will always be easy to go back to that day.  The minutes ticked away relentlessly as Matt and I kept checking the clock.  The girls excitedly looked at us to why it was taking so long.  We had no idea what was behind those doors.  It took only moments for our forevers to change.

I remember the doctor at the door.  I’d never seen him before.  I’ll never forget him now.  We were told the girls would have to stay in the waiting room.  The scheduled sonogram where they would see their sibling for the first time would not take place.  The doctor needed to talk to us in private. 

I remember the hallway seemed so long.  The room seemed so small.  My heart was breaking before I heard the words.  I knew.  We both did.  As the doctor closed the door and asked us to sit down, my world started falling down. There was something wrong.
Trisomy 21.
Down syndrome.
I’m sorry.
The nurse held a box of tissues, but even then I knew I was representing life.  I would Not cry.  This was our baby.  Our priceless child.  Our little girl.

The days ahead were filled with denial, anguish, depression, and fear colliding with trips to the grocery store, birthday parties, and church. 
I remember the tear soaked pillows, the inability to sit up, the desire to disappear, the countless forced smiles.  But what I remember the very most was the loneliness. 
Deep, penetrating, all-consuming loneliness.
How do you go through something so painful without support?  Without one person in your whole world who understands.  Without anyone to talk you through your irrational moments?  Without anyone to tell how much I was going to love her, or how she was going to complete our world?
If only I would have known you then.
My fellow Rockin’ Mamas.  I never could have imagined caring so much for people I’ve never met.  I never could have imagined loving your children so very much - celebrating their accomplishments, praying over their trials.  I love to see their faces on Facebook and watching them as they grow.  My heart breaks when we go through the grief of having to say good-bye.  This is a bond that can’t be described, but can be felt every time in every post.  We are a tribe.  We are family, united by the most precious of souls. 

So, thank you.  And thank you for Down Syndrome Diagnosis Network who brought us together. Because of you, I’ll never have to go through difficult times without support.  Because of you, I’ll never have to go through this life without someone who understands.  Because of you, I’ll always have someone to talk things through, to seek advice, to gain perspective. We will carry on advocating for our babies by showing our society how much they are loved, and how they complete us wholly.  
I can’t wait to follow your children into their futures.  I can’t wait to see those smiles and the videos of their laughter as they become young adults.  I can’t wait to see how many of our babies grow up to marry each other and beat all the odds others have set against them.  Not only have we started out together, but we’re going to continue on to change the world for the benefit of our babies.
And for all of that, I am so incredibly grateful for You.