When our son or daughter is born we immediately want everyone – especially our immediate and extended family to share in our joy. But what happens when sometime in the future – perhaps within days, but more likely months, or even years down the road, we learn that our son or daughter is challenged in some way – medically, developmentally or in the case of those with Williams syndrome, medically AND developmentally.
What do we do when we are reeling with the news that our child is facing challenges that will make each day a bit more difficult and may change our hopes and dreams for him or her? It wasn’t very many years ago that the typical response would be to keep the news to ourselves. We felt that issues such as the diagnosis of our child with Williams syndrome was simply too personal to share. We could deal with it on our own, and let folks know (if we needed to at all) only when a situation made it necessary...and in our hearts we hoped that time would never come.
Gary and I are prime examples of this way of thinking. When Ben was in the hospital as an infant, we told our family he had a heart problem, and that he would undergo open heart surgery, but no one knew how serious it was, (the doctors felt only a miracle would save him) and we steadfastly insisted they weren’t needed at the hospital – that we were ok. And so during those critical days in the ICU when no one knew what the outcome for Ben would be and for the 3 months that followed, I lived in the Ronald McDonald House and Ben’s hospital room while Gary commuted back and forth on the weekends. We never had a visitor. Looking back and knowing what I now know, that was a terrible decision – not for Ben, he didn’t know the difference, but Gary and I would have benefitted greatly from the emotional support of family & close friends.
Fortunately that all changed when we left the hospital following those first 2 heart surgeries. That is when we were given the contact information for a pediatrician in our area who had a 5 year old son with Williams syndrome. Not only were we provided with a doctor for our son who knew first-hand the medical and developmental challenges of Williams syndrome, he was also in contact with the Williams Syndrome Association. Within 30 days we were attending our first WSA National Convention, where we learned even more about the value and necessity of resources and personal support. That first convention (the 2nd for the WSA) was as terrifying and overwhelming for us as it was helpful and encouraging. It also set us on a course with Ben that was no longer solitary. We gained far better information about Williams syndrome than we had been able to gather from medical textbooks on our own, and we made friends who we are still in contact with 29 years later – friends with whom we have laughed and cried, and shared ideas along the way.
Over the past few weeks I have been preparing presentations that I will be making at the first 2-day conference on Williams syndrome in Tokyo, Japan. One of the presentations I have been asked to make is on the impact that drawing on resources can have on an individual with Williams syndrome and their family – a relatively new concept for families in Japan.
As children with Williams syndrome and their siblings headed back to school this month, personal Facebook pages and WS groups have been the site of countless photos of our smiling children, and comments from parents who are hoping for a great year. During this same period, there have been posts from families who have a child with Williams syndrome in the hospital or facing a difficult situation. Their parents have also reached out for our support on Facebook. It is always wonderful to see the many, many responses offering kind thoughts and words of encouragement.
Seeking resources and support from others (many of whom we have not met personally) in our journey with Williams syndrome has become a natural part of life for many of us – especially here in the United States. We have learned the true meaning of “It takes a village” and we put the concept to use every day.
We need more than just personal support throughout the lifetime of our sons and daughters with Williams syndrome. We need top quality, up to date information, and a team of professionals in our personal “village” as well. Throughout the years, print, audio and video resources on Williams syndrome have become more and more prevalent. They contain much better information about Williams syndrome than they did just a few years ago. The WSA works hard to insure that we are updating information and adding new resources as frequently as possible, as well as forming partnerships with professionals with extensive experience on Williams syndrome. When there is not a professional in your community to call in, we can call on the WSA professional advisory board to help. The website, conventions and events should be early and frequent stops along the way to help create that special “village” for your son or daughter and your family.
Resources are not just important to provide help for the challenges of Williams syndrome. Our family and friends, and their family and friends, along with the resources they have, can help make dreams come true for our sons and daughters as well. Each time we enroll our child in a new program associated with something they love, or simply introduce them to a friend or associate, we provide our children with opportunities to meet new people and work their own special magic. Their endearing and enthusiastic personalities have a way of leaving a lasting impression. Similarly, the joy that comes to our faces as we tell someone about our child and the things that they love, or the pain that is clear when we speak of an upcoming procedure can often open doors when we least expect it. With each of these experiences we are opening the possibility of making a connection that will lead to the special help we needed or perhaps an amazing opportunity for our child. A special friend who will take them under their wing, a connection that someone has to attend the concert of a beloved band or even meet them personally, an opportunity to “sit in” with professional musicians, or in our case, become a “Shrine Clown” for a day. Each day we receive stories from our members about these unexpected and incredible moments and gifts. Often just the thought of them brings tears to my eyes - So many magical moments that we never imagined were made possible by special friends and their personal connection and love for our children.
To be a member of just one family, or one community is not enough when you are dealing with the complexities of Williams syndrome. Knowledge, and resources – personal, professional, and informational, will make the journey we are on far less daunting and far more rewarding. It takes a village to insure successful navigation of the challenges of Williams syndrome and insure a self-directed, satisfying and successful future for our children.