When I first got Bean's WS diagnosis, my heart broke for the challenges he would face and I mourned the life that I had wanted for him. At times, I was so overwhelmed that I couldn't catch my breath.
I couldn't get enough information and I spent countless hours looking at Web sites and blogs. I connected with a group of other WS families and quickly learned about all the joys Bean has in store for me. The most important thing that was reinforced for me was that Bean is still the same amazing, joyful, charismatic - and sometimes brutally challenging - little guy that he was the day before we got the diagnosis.
The sadness quickly dissipated, the grief passed and I was filled with hope for a wonderfully magical life with my sweet dude. I realized that though he may not live the life I had hoped for him, he would live the life that is perfect for him. I realized that the diagnosis really didn't change anything and wrote about that realization here.
Don't get me wrong, we have our days. It's hard sometimes. I am a worrier and I get frustrated that we spend so much time in doctor appointments and therapy instead of playing and exploring. But, I have learned to just breathe and get through those moments. Because they do pass. Life is good and Bean such an amazing and delightful boy. I embrace and appreciate everything about him, including WS and everything that goes along with it.
So, for the parent of a newly diagnosed child, it's ok to be sad. It's normal. And know the sadness will pass. There is a wonderful support network in place. Please reach out to us. Contact the Williams Syndrome Association. They can give you a wealth of information and put you in contact with someone in your region. Contact me and I'll offer all the support I can and I will put you in touch with an amazing group of parents that have been there, done that. Your child will bring more joy to your life than you ever could have expected. Each day gets easier and you will be able to breathe deeply again.
