How many cards did you receive over the past holiday? And how many included personal notes to “fill you in” on the busy lives of your friends and relatives? The number of cards I receive today is far less than in years’ past, but I look at them differently, and they look different. There are fewer “holiday letters” but many more “photo essays”. If you are anything like me, you enjoy the photo cards far more than just a lovely Hallmark holiday photo. It’s seems so nice to me that folks want to share the joy and pride they feel in their family.
Have you ever thought about where we might be in our journey with Williams syndrome if people weren’t willing to share? I have, and as a result I am eternally grateful for our parent’s efforts to teach us all to share as young children. Those early lessons we receive in toy sharing and sharing our thoughts and experiences with our parents, have a life-long impact that is important for everyone and critical for parents and caregivers of children with special challenges like Williams syndrome. Those lessons that were initially meant to help us be good citizens of the world and keep us safe by telling our parents what is happening in our lives, blossom into a willingness to share all types of things – from our favorite sweater or a perfect tool, to moments to remember, difficult experiences that we don’t want to bear alone, and questions for which we can’t find an answer. Some of us will share freely only with family and special friends, others will share almost anything to almost anyone. Most of us fall somewhere in between. And for those of us who are good at it, sharing makes life easier, richer and often much more gratifying.
It doesn’t matter if we share a simple photo, or a complicated question – because no matter what it is, it will almost always lead to someone else (or many people) sharing back. And before we know it, one photo can lead to one hundred (as evidenced in the beautiful and “fun” WSA “Back to school” and Halloween and Holiday albums), or one thought can be expanded with many others of similar and varying viewpoints, and within a very short time our knowledge can grow tremendously, our questions have been answered or we have been provided with new resources to contact. It really is a wonderful and quite simple process.
Prior to my son’s diagnosis, I was not very adept at sharing. I wouldn’t consider writing a holiday letter for fear people would think I was “bragging” and I couldn’t imagine that anyone would want to know what I was doing anyway. Gary and I shouldered the burden of Ben’s diagnosis and his most critical surgeries as an infant mostly on our own. Other than periodic phone calls to family, we were alone with our thoughts, our questions, and our worries. During the 10 weeks that Ben was hospitalized as an infant, we received visitors only once - not because no one cared or was willing to come, but because we kept telling folks we were fine and there was no reason for them to make the trip. We didn’t want to be a burden on anyone.
Looking back, I would never advise that families follow our example, and I’m so grateful to Ben’s early intervention team for helping me to understand the value and importance of sharing. They were so willing to share all the information and resources they had, and intent on helping parents understand that this was not a journey they should try to make alone. They even set up “facilitated” Mom’s groups to help us all understand what we had to share(in terms of both knowledge and “stuff”) and how through sharing we would help, not just others, but ourselves as well. It wasn’t long before I was writing short holiday letters. Initially to let family and friends know how much we appreciated their support as we traveled this new path with Ben, and before long just to let everyone know how the boys were doing, and to share our joy in their accomplishments. I finally understood that people were happy to share in the joy of friends and family, and would be there to help share the more difficult times as well.
Over the years, sharing personally has become much easier. Necessity is a great teacher…and so is the WSA. The Williams Syndrome Association was founded on the knowledge of the benefits of sharing. The letter I received from the WSA when Ben was just a few months old stated “you are not alone”, and a few weeks later, when we attended our first convention, it all became crystal clear. Every parent and professional in attendance was willing to share everything they knew with us about what the years to come might be like, and where we could go for more information. Gary and I left the meeting feeling so much better, and with knowledge that was so empowering. It was a terrific feeling. That’s not to say it wasn’t stressful at times to think of ALL the things we, and especially Ben, might have to deal with, but we knew it wasn’t just “us” and there were places we could go, and people we could ask for help. If we were just willing to share, people would “share back”.
For those who don’t find it so easy to share, being “plugged in” to others that do, can be lifesaving. And fortunately, today it is easy to share or to benefit from those who do, even if you aren’t quite ready to share yourself.. Facebook is a huge sharing mechanism, and it has made sharing so much less painful for the painfully shy, because we don’t have to share “in person”. We can ask questions and make comments almost anonymously if we’d like, and post photos, with or without comments, or we can simply “lurk” and learn from others while we gain the comfort needed to share ourselves. It’s a wonderful tool for each of us personally and for organizations like the WSA. It allows us to share information on resources, the accomplishments of folks with WS, and the special challenges and questions of others that you might be able to help with personally or to point folks to someone who can.
The Facebook networks on the Association pages, and WS Support are growing every day through your knowledge of the importance of sharing and your willingness to participate in the process. We are helping each other to help our children be the best that they can be. I can’t think of anything more rewarding.