Friday, November 11, 2011

Flashes of Color

As we drove to Mayo’s hospital, Ellie talked. She talked about how excited she was to stay with Grandma Chachi for a few days, and the fun things she would do with her aunts. Andy and I listened mostly, distracted by thoughts of Nichole and what the prognosis would be.

 At times, we drove in silence. I thought about Jennifer, Ellie’s best friend with Down syndrome. A little girl I had watched for a year and had fallen in love with. It amazed me how little I ever thought of her diagnosis. Jennifer’s life was beautiful.  My baby, like Jennifer, was God’s precious gift.

“I don’t think I can do life without her.” I finally confessed.

“I can’t either” Andy responded.

At St. Mary’s hospital, my mom waited for us in the lobby with my sister Luisa. She hugged me tight and kissed me.

“We will take care of Ellie, don’t worry. And we will be praying. We have everyone praying at church too.”
“I know” I said, “We are grateful for all the prayers.”

We made our way to the third floor of St. Mary’s hospital. They were waiting for us. On Nichole’s crib laid a set of diapers, wipes, and a cozy blanket. The nurses were friendly and caring. They made small talk, smiled, and offered to help us get comfortable for the night. We realized, from their attitudes, that even if Nichole had biliary atresia, which was serious and potentially fatal if not treated, it did not mean she would die. Tests would not begin until the next morning. We had an entire evening to sit and wait.

A “Child Life” specialist, a sort of social worker, came into the room and offered several things to make us more comfortable. Among those things, was a laptop, so that we could check our e-mail and keep in touch with our family. We accepted the offer and she was back within minutes with a computer.

The first thing Andy did was research “biliary atresia.” He wanted to know what tests would be done, and what those were for. While he was glued to the laptop, I was glued to the pump, making sure my baby would have milk.

“I think we need to find out as much as we can about Down syndrome,” Andy said as I fed a bottle to Nichole.

I had checked out every book on Down syndrome available at our local library. All of those books had been depressing. Pages on all the ways my baby would be different, inferior, and broken. Words describing all the things that could go wrong, and the many challenges we would face. Every time I had tried to read one of those books, I had closed them after a few pages and cried.

“On-line?” I asked.

“Yes, on-line, but also we should go to Barns and Noble and get some up to date books. Not those outdated ones from the library. I think that is all garbage.”

“Okay” After a pause, I added, “Maybe we can go while Nichole takes s a nap.”

Later that evening, we walked into our favorite bookstore; a preferred place for our date nights. For the first time, we searched for the “special needs” section. When we found it, we were amazed at the hundreds of books on the shelves. 

I have been so blind at the world around me. I never really noticed children with special needs, but there are so many…

Autism. Aspergers. Cerebral Palsy. ADHA. ADD. Sensory Processing Disorders. Turette’s Syndrome. Spina Bifida. Deafness.

The list went on.

Finally, squeezed among the many books, I noticed the words “Down syndrome.” I pulled books out of the shelves, trying to decide what I wanted to read. I did not want lists of doomed futures. I did not want guides on how to teach my child gross motor skills or speech. I was looking for hope, for dreams, for a bright future.
Andy walked to me and handed me a book.

“I think this is the book you need to read,” he said.

On the cover, a naked baby was held by the strong hands of a father. White letters in contrast with a gray- blue background that surrounded the picture read, “Gifts.” Underneath the photo, the subtitle, “Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.”

I quickly flipped to the back cover, “Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way.”

I could feel my heart beating faster. I opened the book to the foreword and read the first line. “Your life will have flashes of color you never knew possible.”

My life will have flashes of color I never knew were possible.

Those words, so real, carried with them great power. The hope and dreams I was searching for were contained in that sentence. I held the book close to my heart. In the middle of the aisle at Barns and Noble, I kneeled down hugging a book. Tears showing up once more, I closed my eyes in an effort to make them stop. Yet tears kept pouring out. And through my tears, I smiled. Because for the first time, I was not crying because I was sad, I was crying, because I knew my life would have flashed of color I never knew were possible.  I was crying, because I had been given a gift.

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1 comment:

  1. I love that book.... and number 2. Now I know where I know your name and story from. Wink. wink.


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