Blog · January 12, 2015


smile_quoteA few years ago I had a brief encounter with a little girl that I am still thinking about. I was at Children Hospital Los Angeles with my boys; Nicky had an appointment with the endocrinologist (I think?) and on our way out a couple was behind us with this little sweetheart in a big stroller. She had a flower on her hair and a frilly dress on, but what gave us pause was her face. Despite having some sort of excess bone growth condition, which made her head 2-3 times bigger than normal, she sported the sweetest smile on her face. I told the boys to smile and wave back, which they did, and it wasn’t until we were in the elevator that they asked me all sorts of questions. They wanted to know what she had. I of course had no idea. I looked it up online but came back empty handed. It might possibly be Craniodiaphyseal dysplasia but I am not sure.

Of course the diagnosis means little, aside from satisfying my sons’ curiosity, what I wished I could have done instead is spending a few minutes with that mom. I know only too well what it’s like to be stared up and down and judged, and I wanted to extend the kindness offered to me on occasion of someone stopping and not only asking, but really wanting to listen, to know how she was doing, and to tell me more about the condition her daughter had. I know how healing it is to be able to talk to someone who sincerely cares.

I know from experience it means the world to me when strangers stop and ask. Just last week when I took Nicky to Stanford we stopped and had dinner at Olive Garden and one woman on her way out stopped just by Nicky and said… “Oh my gosh, I have to ask you what happened!” She was so funny the way she said it, Nicky and I had a chuckle. She looked at me and I told Nicky to take it away. He still looks like he’s 12 so everyone always looks to me to answer questions they may have, but I do want for Nicky to become more assertive. Take it away he did! He told her he had a skin condition and she relayed to him that several years prior she had been in a car accident where 50% of her body had been burned so she lived in bandages for many months. Nicky told her that we were in ‘town’ for the clinical trials and she truly acted concerned and happy for him. She wished us well and off she went.

Of course my favorite kind of encounter is the one where someone asks me if Nicky has EB. It happened 3 times in 18 years. In two of those times the women that asked had a cousin with EB, and one just knew about EB because she had just seen something on TV about it the day before! Imagine my shock over that! Truly a “Let me pick my jaw off the floor moment”!!!

Like Nicky says, if you see someone that looks different, just smile. Imagine the ugly stares that little girl gets all the time. I get chills just thinking about it. Sadly, I’ve gotten to the point where I ignore looking at people’s faces when I am out with Nicky. I hate being that way, but I do it to protect myself. I somehow built a shield because those ugly stares are so hurtful and are hard to digest. I know Nicky does the same. We do what we must to survive and be happy.

Now a little update on my various projects. I will start the ‘Ask Nicky‘ videos this week, so if you have any questions for him, please leave me a message here. I am excited for everyone to hear him talk. This kid blows my socks off and I need to share his little wisdoms and prospectives, ha ha.
As per my book Butterfly Child… yes, it’s almost done. I am THIS CLOSE! My goal is to have it done by the end of January. Please don’t shoot me if it takes a whee bit longer than that. I promise is coming!!

Thank you so much for your support and love you send my way. I appreciate it more than you know.

Love and Light,