Although Jim and I have the awesome privilege of parenting a child with Down Syndrome, we have never heard those words or known the heartache they can bring. For us it went more like this:
A call from our social worker came one cold February afternoon. "There's a three day old baby girl in the hospital that needs a family right away," she said. "Her mother surrendered her parental rights right after delivery. She's a delightful little girl but here's the thing.....she has Down Syndrome and a significant heart defect." After a period of dead silence, she added, "You've done special needs and heart defects before so I think you could do this. Will you take her?"
We weren't sure we could be her family. We already had five children. Number five was severely disabled. The last thing we needed was another baby and certainly not one with Down Syndrome.
Then we met her. The nurse gently placed her in my arms. I noticed the low set ears, the flat features of her face. I traced my finger along the tiny simian crease of her hand. She opened her eyes; beautiful, wide set, almond shaped eyes, and looked at me. Tears ran from my own eyes and my heart puddled around me. Her heart, imperfect as it was, seemed to speak to my own. "I need you. And you need me," it said. Already, she had changed my life. A voice in my ear said, "Love my child. She is my gift to you. Love her."
And we did. We took her home, adopted her, became her family. We loved her so much that sometimes it hurt. We hadn't known that we needed her but we did. We needed her to teach us about love in it's purest and simplest form. We needed the joy and peace that she exuded. We needed her smile, her laughter, her enthusiasm. We needed her, all of her, everything about her.
Down Syndrome crushed our hearts. Not because it came into our lives but because it was taken from us far too soon, long before we were ready. She came to us quickly and unexpectedly and she left us in the same way. There are those who think that we have been "spared" the challenges of raising a child with Down Syndrome to adulthood. But we would gladly have faced every single one of those challenges with her.
I know that when families learn that their child has Down Syndrome their world stands still for a time. I get it. I understand it. I would never trivialize it. They are suddenly thrust into a frightening world of unknowns. This child will not be what they thought he would be. Their hopes, dreams, expectations are unequivocally altered and all of the should have's must be mourned and grieved to make room for what will be. But soon they will know. When the veil of sadness begins to lift they will know that they have been given a gift most precious.
Nearly a year ago my twenty year old son, Grant, was baptized. Before baptism he publicly shared a testimony of his faith. As part of his testimony he told of the dramatic impact that our three adoptions have had on his life and his faith. He spoke of Laynee, her life and her death. There is not a single member of our family who can discuss our faith without mention of Laynee. She was a building block of faith for all of us. Grant told of his struggle when Laynee passed away. He said, "I couldn't understand why God would take away the one thing I loved most in all the world."
Grant was well acquainted with the challenges of Down Syndrome, he lived them for 2.5 years. He knew that his baby sister was different than other children her age, that development came a little more slowly for her. A twenty year old young man, born and raised in the "me first-it's all about me" generation. He's on his way to becoming an engineer. He likes shiny cars and fast motorcycles. He knows great beauty when he sees it. He hunts and is well acquainted with guns and bow and arrows. He has grown up in a world of technology, where instant everything is at his fingertips. He's strong and healthy and active and can do and have just about anything he puts his mind to do. He practically has the whole world by it's tail. But the one thing he loved most in all the world was a little bitty girl with Down Syndrome.
I wish every parent whose heart is broken by "your child has Down Syndrome" would know what Grant knows. That an extra 21st chromosome is something extra special.
God is good, all the time.