It's hard to believe now but 26 years ago, when I was pregnant with Ben, having your first child at 35, was considered "old". But we were thrilled, and my husband Gary and I approached this special time with all the attention we had given our careers. We made recordings of each other reading our favorite children's books and played those and Vivaldi's 4 seasons to our unborn son each evening. We practiced breathing in Lamaze classes so we would be ready for natural childbirth. Then, after a very benign pregnancy, my labor and delivery started us out on a journey much different from the one we had envisioned.
After several hours of labor and no dilation, the doctor broke my water to try and speed along the process. A short time later he determined that our baby was in distress and since I was nowhere near ready to deliver him naturally, a c-section was performed. Doctors then found that the baby had aspirated meconium and he was rushed off to a neighboring hospital where there was a neo-natal intensive care unit. It would be 5 long days before I was released from the hospital and could visit my son. When Ben was placed in my arms for the first time, I couldn’t stop crying. We were finally a family and Ben was given a clean bill of health. His only remaining hurdle seemed to be learning to suck and swallow.
The next 5 weeks flew by, with Gary and I adjusting to parenthood, Ben learning to eat and the house bustling with visitors. We were amazed that Ben actually seemed to recognize the recordings that I had dutifully played for him during the pregnancy and they clearly had a calming effect whenever he was upset. Everything was great!
And then one morning Ben didn’t seem like himself to me. I called his doctor and was told I could bring Ben in later that morning. The doctor found an inguinal hernia which was probably the source of his discomfort, but she also heard a heart murmur for the first time and told me we would need to learn more about that before getting the hernia fixed. I remember she very calmly told me that I should probably drive straight to the hospital – she would call ahead to tell them we were coming, and she would call my husband and have him meet us there. It would be 3 months before we got home again and nearly 5 months would pass before we finally got that hernia repaired. When we did, it wasn’t Ben’s first surgery – it was his 4th. The 3 cardiovascular repairs that came first, not only put our son’s survival in question, they came in tandem with the diagnosis of Williams syndrome, and a brand new course to all of our lives – a course that we could never have imagined.
There are many characteristics that are common to Williams syndrome but the one that defines our son is a unique spirit and positive outlook, that often manifests itself in pure joy. It is a spirit that has not only helped Ben overcome many obstacles, it has also had an impact on so many others who have come in contact with him throughout his 26 years. Ben is truly an optimist – a young man who simply chooses to find beauty and joy, not just in special occasions but in everyday activities as well. More importantly, he never keeps his feelings to himself. He readily shares them with everyone he meets.
Ben was talking before he was two, and his first words, “Hi, How’re You” were uttered to everyone we met with a big, beautiful smile. He was afraid of the dentist, and early appointments were difficult. But no matter how much he cried throughout the appointment, each visit ended with him wiping the tears from his eyes and exclaiming “Thank you Dental Officers. I know you took good care of me”. He often had the nurses in tears as we left. Parent-Teacher and IEP meetings always included statements of wonder at the fact that Ben always noted when a hairstyle was changed, nails had been painted a new color, or a new outfit was worn… and he always told the teachers how beautiful the changes were.
If Ben didn’t like a particular teacher or therapist, he would never tell us they were mean or bad teachers. I would ask “How do you like Mrs. Jones, Ben”? And he would respond, “She is doing her best Mom”. While in high school, Ben insisted on attending the homecoming dance alone. When I picked him up at the end of the evening, he was briefly despondent because the girls all had dates and not many of them had agreed to dance with him. However, it only took him a short time to review the evening again, and decide that he was glad he went after all, because all the girls looked beautiful in their dresses and they all told him they liked his new suit.
Ben invited popular girls to every school dance or special event, but did so without ever putting them in an awkward situation. His invitation always started with, ”You are probably too busy but….” Or “I bet someone already asked you but….” Consequently, the girls always used whatever excuse he provided, but they were also very kind to him, and he ended every conversation with, “Well OK, maybe next time then” and he felt very good about himself for trying.
Ben is now 26, and proud to be a young adult. But not too proud to enjoy the spirit of the holidays, and the simple joys of life. We visited a Christmas Village today that included a laser light show. As the lights went down, the audience was encouraged to sing along with the holiday favorites, and one audience member did just that. Ben sang every song, “oohed and ahhed” at every laser and clapped the loudest at the end of the show. There was also a wonderful Santa, and Ben couldn’t stay away, exclaiming that he wouldn’t sit on his lap because he was an adult now, but he would love to say “Hi” because “I’m a kid at heart Mom, and it’s part of the Christmas Tradition”. Ben walked up to Santa with his hand outstretched and Santa stood up to shake hands with him, exclaiming that it was nice to see Ben again (GREAT SANTA!). They spoke for a few seconds and then Santa asked Ben what he wanted for Christmas. Ben’s reply… “I’m an adult now Santa and I don’t need gifts, but my friend Kristin has been very good and I hope you will get her something nice.”
There are times when, like every parent of a child with special challenges, I wish that Ben were doing better. But I have only to spend an afternoon like the one we shared today to remember that we all have challenges regardless of whether or not they come with a label. And that despite the challenges, Ben has much to offer, and so often reminds me of what is important in this life and what we should truly cherish. Ben is quite simply…something special.