Emaline (Emmy for short) was born in July 2011. From the second she came into the world, I knew there was something different about our little girl. First, she didn’t have the strong cry and ruddy cheeks that her sister had only 2 years prior. Emmy emerged blue and let out a stilted warble, scaring me beyond belief. Several nurses swiftly carried her into the NICU because of fluid that had built up in her lungs.
She spent the next 8 days hooked up to beeping machines, and we were only able to hold her for short spurts of time. We wanted so badly to take her home, but we knew she was in good hands with the kind nurses who calmly answered our questions and reassured us that Emmy was doing very well, even though the loud machines seemed to indicate otherwise.
On one of her last days in the NICU, my dad was holding her in his arms. She was sleeping peacefully when, quite unexpectedly, a broad grin spread across her petite face. Startled by her smile, which was bigger than any I’d seen before, I looked curiously at my dad. There was an unspoken uneasiness between us. Emmy’s smile was different, and it made me nervous.
Emmy left the NICU with a clean bill of health, except for a heart murmur. The doctors let us know that we should schedule an appointment with a cardiologist, but they also told us that heart murmurs in babies were quite common, so we shouldn’t worry.
When we finally brought home our daughter, I took pictures of her on our porch. This time, I managed to capture the smile on film:
My husband, Dan, and I couldn’t figure out why a tiny baby would have such a broad smile, but I was encouraged by the notion that she certainly seemed happy!
From that moment forward, Emmy’s smile disappeared as quickly as it had arrived. I wanted desperately to see it again, but she would either stare at me blankly or cry. She was a fussy baby, and we worked hard to soothe her, usually to no avail:
Five weeks passed, and we dutifully attended our cardiologist appointment…which changed everything.
We were shocked to find out that Emmy had a more serious heart problem than we originally thought. Furthermore, her heart condition is prevalent in people with Williams syndrome, which lead our cardiologist to connect the dots. It was she, our excellent and caring cardiologist, who first suggested Emmy’s diagnosis. Shortly thereafter, Emmy had a blood test to confirm the results.
We had never heard of Williams syndrome and I didn’t know anyone with special needs, so my initial peek into this world was very dark. I scanned the laundry list of possible health problems that people with Williams syndrome may have, and I immediately assumed Emmy would have every single one. I wondered what her life would be like–what our lives would be like. I grieved over the expectations that I’d previously painted in my mind. I was overwhelmingly sad, then unspeakably angry, then exhausted and defeated. After a few days of heart-wrenching tears, which seemed to flow without end, my conclusion was: “I can’t do this.”
I talked to other parents who had travelled this road before and finally took the advice of another Williams syndrome mother who told me that it was ok to be upset but that I needed to eventually pull myself together for my daughter, who would need me.
Slowly, slowly, slowly, I accepted the diagnosis and was able to move on. I became willing to take this journey with Emmy and resolved that, whatever the future might hold, I would just love her–fiercely and without reservation.
But Emmy still seemed miserable. For the next six months, she acted as though she were underwater. She didn’t smile once, barely interacted with people or toys, and cried constantly.
While the diagnosis explained her initial beautiful grin, which is particular to her syndrome, she didn’t share it with us again for quite some time. I later found out from other Williams syndrome parents that many of their children took a while to find their smile as well.
Finally, at 6 months old, she made me shriek for joy. She finally offered me a tentative smile, and I captured it on film:
Not only has she been smiling ever since, but she’s made everyone else smile too. Her big, genuine smile no longer makes me uneasy. It’s a gift that instantly lights up a room and makes others grin right back.
Emmy has changed my life for the better. I’ve discovered a new beautiful community of people with special needs and parents whose children have special needs. I’ve gone from “I can’t do this” to “I want to do this.” I’ve admired the tenacity of my daughter, the milestones that take a long time to come but are well worth the wait, the tight bond between sisters, and the kindness of strangers. Of course, not everything has been easy. But in this blog, I intend to honor the love and smiles that Emmy has given to us and to others. She is a sweet soul, and I am so happy that she is ours.