My lifeMama sit." I froze in hopes I would hear it again. I looked at her looking at me. Again, "Mama sit." I wasn’t hearing things. She said it as clear as a bell. She said it four more times until I made my way over to her side, or more truthfully, leapt to her side. She smiled and put her hand on my knee as if to secure my sitting position next to her. She giggled and said it over and over. Emerson was very happy that her demands had been met, but did not seem all that surprised words had just come out of her mouth like a typical 4-year-old. We sat for 20 minutes and listened to her beautiful voice again and again. "Mama sit."
What was wrong?
Emerson was 364 days old the day the test came back. She had been a difficult baby. ‘Colic’ they had labeled it. She could cry for five hours straight and without hardly a breath. She didn’t sleep at night, she didn’t nap and she spit up everything she ate. Her head would twist back and forth as if she was trying to get away from the pain. Then the milk would come flying back up. She could hit the wall from five feet away with a steady stream.
It was hard to leave the house with her. I later found out that along with her tummy hurting from the milk, wetting her diaper was painful. Due to her high calcium levels, the simple act of peeing caused her terrible discomfort. I’m glad I didn’t know back then.
It was a long, sleepless and stressful period for me and my husband. Emerson eventually outgrew this stage at about 9 months. With the dark period behind us, we were taking great pleasure in our sweet little girl. What was about to happen was unimaginable for us.
All of our lingering questions and concerns were answered with one phone call. We now understood why there was so much crying and so few developmental milestones being met.
Williams Syndrome is a rare genetic disorder caused by a chromosome abnormality. It is completely random and the cause is unknown. In fact, no one even knew this disorder existed until 1961 and statistics say that 1 in 20,000 children are born with it. When we learned this news, we often joked that winning the lottery or having Williams Syndrome seemed equally likely. Along with digesting this news, which was no easy task, there was a lot to be done. Within weeks we had a complete schedule of all the doctors that were deemed necessary. In the end, we found ourselves very lucky with minimal physical issues. Next were the therapists. One evaluation after another, with all the same suspected conclusion: developmental delays. Physical, occupational, developmental, speech, it went on and on.
Lastly, and I do say that as if there were an end to this, I needed to understand what it meant for me. Administering prescriptions, attending therapies and talking about an educational plan was the easy part. Accepting that my daughter was probably not going to be on the soccer team, go off to college or ever meet me for coffee was the most challenging step for me.
The world around us
Having a child with special needs made me much more aware of my surroundings. I was continually observing children of all ages and found myself envying everyone who had this elusive #7 chromosome—the one that made my daughter "different." Not only did I find myself fixated on the healthy children, I started to realize people were often surveying Emerson as well.
Emerson became a big sister seven months after her diagnosis. She didn’t mind sharing her parent’s attention, but she did mind the baby’s crying. As far as development, my 1- and 3-year-old were equally matched. I had gone from two kids who didn’t walk to two mobile toddlers and was often eager to get out of the house.
One day, I was feeling especially brave and I decided to take both Emerson and her brother, Connell, to a Gymboree music class. I was feeling prematurely proud when I had both kids successfully in the music room. When Connell realized his next 45 minutes were going to be spent shaking noise makers instead of jumping off tall gym mats, he started to scream hysterically. The crying and banging were too much for Emerson. She started to shriek and flail her arms. Connell quickly became her focus of anger and she attacked him. As I struggled to peel them apart, I could see the faces of the mortified mothers.
When you have a child with special needs, you spend a lot of time trying to make sense of it and asking why. Recently, I had an experience of true clarity. This one day did not answer all my questions nor take away all the pain, but it did change the way I looked at my little girl.
Emerson and I attended a first birthday party together. We walked into the crowded and noisy room. Emerson bounced into this overwhelming scene with a huge grin on her face, singing "Hi! Hi! Hi!" to everyone in her path. She smiled at each person who greeted her, and although limited in words, she clearly communicated her pleasure to be at this wonderful birthday party. She gave high fives with great enthusiasm followed by a hug. Gleeful dances were performed upon command. When the party was over, she made her exit like a movie star. "Bye! Bye!" she shouted to her charmed audience.
As I put her in the car seat, my eyes filled with tears. This time, these were not tears of grief, but tears of pure happiness and understanding. Emerson, with her unconditional love and joy, is a gift. And with this revelation, I can now look to the future with hope and anticipation of our wonderful life together.
Amy Connell-Donohue lives in Chicago with her husband and children. She is vice president of support services for Globalcom Inc. Her hobbies include reading, running and photography.
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