July 12, 2014 § 1 Comment
We are home after just about two weeks in California. It was a wonderful trip and we had an absolute blast! Somehow we all managed to spend two weeks in a hotel room without killing each other – impressive for a family of four! LOL
The part I didn’t anticipate was how lonely I would feel now. Not physical loneliness – no, that is actually welcome after all the family togetherness but rather emotional loneliness.
Being a parent of a child with Williams Syndrome can be hard but often it’s quite wonderful and I wouldn’t change it for the world. I would change however the frequency in which we get to spend time with others with Williams Syndrome and their families.
The rarity of the syndrome is difficult because connecting with others in person becomes a challenge. Fortunately we have the convention bi-annually and we get to see all our friends we have bonded with online. There is a special connection between us all, to KNOW pretty much how it IS for the other families and vice versa. To not have to explain. To see the same beautiful little things that make your child special in another – there is nothing like that feeling. I had that blessed feeling for 4 glorious days. I feel insatiable for it now – I want to feel like that all the time – accepted, understood and embraced and I also wish my daughter felt these same things always. I know there are many families of kids who go with undiagnosed children of all varying disabilities, never finding their “tribe” and will never know this blessed feeling, my heart aches for them. It’s hard coming down off such beauty and intensity. It’s hard to say goodbye to friends who feel more like family, knowing it will likely be another 2 years until I see the again. Thank God for social media and technology although they will never replace the actual warmth and love you feel in the presence of others – I am grateful for the to keep me connected for now.
July 3, 2014 § 1 Comment
I am writing from my hotel room in Anaheim, California. I am here with my family and 400 other families from around the world at the Williams Syndrome National Convention.
It is truly the happiest, friendliest place on Earth. I love the joy that just radiates from ALL people here and when my Facebook world collides with real world it’s magic. It is awesome to see so many beautiful Williams Syndrome smiles in one place. It is rare that we see any in our day to day lives and if we do it’s in waiting rooms in Boston hospitals to see specialists. But here my daughter goes to bed saying “I just love that girl, she looks just like me, she has blue eyes like me and curly hair like me! I feel like I’m looking at a younger me!” Imagine almost never seeing anyone who was quite like yourself….and then seeing hundreds who look like just like you!! It feels like home.
It feels like home because when we are here do not have to explain. We do not feel like we are ever being judged. We just feel “embraced.” Oh! And there’s a lot of actual embracing – hugs from everyone – it is glorious!
On top of the Joy of connecting with our WS family, we get to learn a lot. It is so beneficial to me in helping my daughter and also to me professionally. When else can you earn PDPs on vacation? I already learned a ton today! I feel blessed.
Off to hopefully sleep well and get over the jet lag.
I ❤️the WSA