I've decided to do this thing, this blog, in an effort to get my thoughts in order and to have some sort of record of the craziness of being a dad to a child with Williams Syndrome. I have no clue who will read this - I'm not even sure I care. I just kinda feel compelled to write about it. I'm in a unique situation where my wife is the primary worker and I'm more of a stay at home dad. That's not to say I don't work - I'm an actor.
"Isn't that the same thing?" I hear you ask.
Ha. You are very funny, but I didn't choose to write this for your snark. Thank you for trying to inject some levity into my blog at such an early point, but hopefully I'll be providing the funny here.
I've been really fortunate to be able to make a pretty decent living as an actor. I work pretty frequently and when I do, I make decent money. The problem is it isn't constant. For instance, right now. I'm not working. I did a sexual harassment video a couple weeks ago and I will hopefully book a couple other things in the near future, but I don't have anything on the horizon until May. Once I reach May, I go into rehearsals for a big musical and that will keep me gainfullly employed for several months. Things will become a bit more consistent at that point (income, schedule, routines) but not any easier. I'll be doing shows at night and trying to keep my energy up to be a full time dad during the day.
Make no mistake, my wife is awesome. She could have her own blog on being a mom with job and a special needs kid, but that's not her thing. Fortunately or unfortunately, it's my thing. I'm going to try to keep this pretty focused on my experience as a dad, but I don't want you thinking that I'm alone in this. Far from it. My wife is a pretty damn good partner to have in life.
So Williams Syndrome. If you're not familiar (and why would you be - I wasn't) is the deletion of several proteins on the number 7 chromosome. It happens, essentially, at the moment of conception. As your DNA starts to replicate, some parts fall off the number 7. So from that point forward, you have an incomplete DNA strand replicating as you grow. The information on those missing proteins can vary, but the consistent traits of people with WS are distinct facial features, developmental delays, heart and respiratory issues, and an extremely friendly nature. Like really friendly. Like "life of the party" friendly. This friendliness also extends to an acute empathetic nature.
This has been the most fascinating to me. There is nothing in this world that my son cares about more than other people's happiness. If you are sad, he is sad. If you are happy, no one will celebrate you more than him. If you need something, he will do his darndest to help you.
So hopefully you'll enjoy some of the stories I intend on sharing. My son makes every day a unique challenge and opportunity for joy. I hope you'll share in some of this joy and gain a little bit of empathy for the challenges.
For more information about Williams Syndrome, I suggest visiting www.williams-syndrome.org. You are in for a treat.