I talk openly about Emmy having Williams syndrome. I don’t tell every stranger I meet but, if it comes up, I’m ok with sharing our experience.
When we first found out about Williams syndrome, when Emmy was 5 weeks old, we were advised not to publicize it just yet. A doctor told us that not everybody would understand what the diagnosis meant, and she wanted people to get to know our family before labeling us as “the others.” As time has gone on, and especially as I’ve gotten incredible support from those around me, I’ve felt much more comfortable sharing our story. I know that some people keep quiet about a diagnosis because they don’t like that their child has a label. But I believe Emmy is much more than a label. If I believe that, and I project it, then I’m hoping others will see Emmy in the same light–as a whole person.
But, in my openness, there was still one person left to tell…
Charlotte is 4 years old, and I was waiting until she was 6 to sit her down and tell her a story that another mom relayed to me. She told the same story to her 6 year old daughter about her son, who has Williams syndrome:
If we look at ourselves as a book, we might be composed of chapters from 1-23. Well, some people are missing a couple pages from chapter 7. (Williams syndrome is caused by a deletion of a region on chromosome 7.) The book is still complete. You can understand the entire story as a whole. But, because there are a couple pages missing, there are some differences from a person whose book isn’t missing a couple pages…
I had it all mapped out. I just needed to wait another 2 years for her to really get it.
While I was waiting, I realized that I couldn’t explain things to Charlotte fully. I couldn’t really explain why we have therapists coming to the house to work with Emmy. I couldn’t really explain why I take trips to Kentucky with Emmy to see a special team of researchers. I couldn’t really explain why she had a “boo-boo on her heart.” I couldn’t really say why we were doing walks with hundreds of people to raise awareness. Sure, I was coming up with decent explanations, but they weren’t getting to the real, core issue.
I longed to tell Charlotte that Emmy has Williams syndrome, but I didn’t know if she was ready. Honestly, I didn’t know if I was ready. I was worried that Charlotte would see her sister differently, and that thought terrified me.
I posed a question to our trusty Williams syndrome community. Was Charlotte too young? And, moreover, how do I even tell her? I knew the book/chapter analogy wouldn’t make sense for her age.
As always, I got lots of great advice. Most importantly, when telling Charlotte, I had to keep it simple and general. Only give her as much information as she needs. She will ask for more when she’s ready.
So, while we were having a nice, relaxing dinner, I exhaled and said, “Charlotte, have you ever heard the words ‘Williams syndrome’ before?”
She shook her head and said, “No. What’s that?”
I was really surprised! I thought, for sure, she had heard us say it. Though, usually, Dan and I say “WS” because it’s shorter.
And here is where my story falters… Because as confident as I felt 2 minutes prior, as much as I thought I was ready to tell her, I doubted my ability to deliver the message correctly. Whoopsie! I dug my hole and couldn’t get out. I gulped and looked over at Dan, raising my eyebrows helplessly.
He came to the rescue and explained that Emmy was born with something called Williams syndrome, and that means that she will do things differently. And that’s why she had heart surgery. And that’s why Mommy takes her to Kentucky. And that’s why teachers come to the house to help her practice going up and down the stairs. He finished with, “But we’re all different. So that’s ok. Everyone is different.”
Charlotte thought about it a second and then offered, “Just like Emmy has straight hair and I have curly hair?”
“Right,” Dan replied.
This launched Charlotte into a 10 minute discussion about her hair versus Emmy’s hair, which made me realize just how precious a 4 year old mind is.
Then the discussion tapered off. And, suddenly, I felt lighter. I didn’t even realize that I had been clinging so tightly to this secret that it was pulling me down. I hadn’t even considered it a secret. I just thought Charlotte wasn’t ready. But, in keeping it quiet, I felt like I wasn’t including her in our lives. Everyone else knew but Charlotte. I didn’t realize that the weight of her not knowing was affecting me so deeply. So I got up from the dinner table and, in doing so, I left that heavy anchor behind.
I’m so glad for you. One less thing to worry about. 🙂 Charlotte sounds like such a precious little lady.
Yes, she’s a sweetie. Thanks! 🙂
Thank you for all of your help and for continuing to share. I look forward to these messages and the honesty behind it all. It guides me.
Thanks so much, Priscilla! I’ve enjoyed going on this journey together!
lovely post. Children are way less judgmental than we are. They live in the moment and are so accepting.
That’s so true. Thanks for your comment!
Yay! Congrats on lessening the load. 🙂 What a great sister!
Thank you! 🙂
I loved your way in telling charlotte..one day I have to face thing with my younger son to inform him about his elder brother who has WS but I think he is still small only 2 years 🙂
Yes, you definitely have some time. 🙂 Thanks for your comment!
It’s a touchy subject. Sometimes I find myself not mentioning it at all when someone asks how Tyler is doing …. or sometimes I find myself spewing out his life story to a stranger. It depends on the day. Sometimes I just don’t want to talk about it bring down the moment… people tend to mentally take a step back when I tell them the story. As for telling my 3 year old daughter Julianna – she doesn’t understand right now but we do openly talk about it to her and we’ve mentioned Tyler has a booboo on his heart and needs to get checkups more often b/c of that. You did it at age 4, I think that’s perfect… and we’ll shoot for that age too I think! I love the comparison about the hair though! Cute! 🙂
I’ve spewed out the story to a stranger too. Haha. Sometimes people at the grocery store make the best listeners.
My youngest grandchild, Fiana, is a WS baby doll. She is eight years old and is so full of love and joy! My two grandsons are now 12 and 14 and growing up with Fiana has made them more patient and protective with younger children as well as more accepting of the differences in people. It is amazing what love can do, isn’t it?
I’m so happy to hear that growing up with Fiana has had a wonderful impact on your grandsons. That’s lovely, and I LOVE her name!
Thanks for sharing your lovely story! I have 3 girls, 6, 4 & 3. My eldest has WS, we have always talked about it openly and at only 2 my youngest was able to understand the “label” which applied to her sister and that it means her body works a bit differently and she finds some things harder. I have always felt I needed to be honest about it and kept things really simple for the younger two but found that they have needed to understand why their sister struggles with things they find so effortless, otherwise they have felt frustrated with her when she can’t manage something or doesn’t understand something. As they know I can just remind them that she has WS and that means some things aren’t as easy for her as they are for them. They have never looked at her differently and still adore and look up to their big sister but also mother and help her out. It works for us, I’ve been lucky never to have to carry the burden you have.
I think you make a very good point that if siblings don’t know about the special need, they can just get frustrated. It really does teach tolerance and patience. Two traits which I continue to work on!! 🙂