Zoe's mad skills

There are lots of people who are on Zoelia's team of champions, cheerleaders and supporters who have never met her in person. This includes people in our family and friends who live far away (and even some who live nearby). So many people have reached out to us to be a part of 'Z experience' and we've been very blessed.

These people are the reason I created this blog. So those who wish, can stay more in touch with what goes on in her life and with all three of us. It allows you to find out what's new and it allows us to give updates without worrying about time differences or intruding on each other's busy lives.

Truthfully, it's another demand on my time in an already filled to the brim week. But I find the time and I find a way because of all of you. Because Zoe has drawn you into her life and you have chosen to be a part. And she deserves a rich life filled with people who know her and love her - don't we all?

Of the people who have met Zoe in person - most have still not heard Zoe speak. When Zoe is around other people she focuses more on paying attention to what's going on around her. She becomes the careful observer. I think this is true of a lot of kids her age.

But when she's at home or in the car and she has the opportunity, she babbles to us, herself and her toys. And her daily chitchat is peppered with words and phrases. And this is great cause for celebration!

Half the kids with Cri du Chat don't have any verbal language. Half of them don't speak a word. No one knows exactly why - verbal language development is a complicated affair. It could be the problem in the larynx that causes the high pitched cry. It could be a disconnect when language gets processed in the brain. It could be because these kids usually have low muscle tone (everywhere really, but specifically) in their jaws, lips and mouth that make it too difficult to form words. Or it could be because they have little tiny chests and poor respiration so they just can't get enough air to pass over the vocal chords. Thirty to forty years ago it was believed these kids were entirely unable to communicate at all, but things have changed.

But that's still a terrible fate... because these kids understand every word. Their skills of comprehension are VERY sharp and their memory is sharp too. Could you imagine how difficult that must be? To understand everything that's said around you, to remember it all too, to know what you want to communicate and not be able to say it? And worse... to have people treat you like you're irretrievably stupid because you can't use words with them? Every time I think about it, I'm overcome with grief - it must be so frustrating and disheartening.

Sidebar story - I remember years ago I was traveling in Italy. I was traveling on the train south to Venice and I didn't speak Italian (still don't). What I remember about Italians is that far fewer locals spoke English than in most of the other countries I traveled. It's amazing how far you can get in almost any country with just knowing "hi", "excuse me," "please", "thank you", "how much is?" (then pointing), and "where is the bathroom?" Well into my car on the train entered an older gentleman and then perhaps one of the most gorgeous men I've ever seen (Luigi) and they smiled at me, and I smiled at them. After my run at "hi, excuse me, please (with a point offering them a seat) and thank you" (when the older man offered me a soda) - we were done. I didn't need to buy anything so "how much is?" was out the window and I knew where the bathroom was so that was it. The three of us actually tried desperately to carry on a conversation - they knew NO English and I had used up my Italian within 15 seconds. We were on the train for hours amiably trying to communicate, drawing sketchy maps to indicate where we came from. But it was really eye opening - when you can't share words, there is virtually nothing you can exchange with each other that has meaning. I had to struggle with 2 hours of trying to communicate and not being able. No harm done and it was pleasant enough. But what if I had NEEDED to communicate something..... What if you had to go through life like that?

So when Zoe speaks, even though she does it everyday, it's a BIG deal to us. And we've learned to trim back our excitement and sometimes stay quiet so she'll continue chatting some more.

And sometimes she even shocks us and makes us laugh (all kids are great at this). Yesterday, Jeff was holding and playing with Zoe when he turned to me and said, "You know, she's making a lot of funny new sounds today." And she smiled at him and said, "I am!" and cracked up. Today Jeff took her out for a walk and after awhile he asked her, "Do you want to head back now and see Mommy?" and she was quiet for a few moments and then belted out, "Yeah! Momma!"

It's a big deal. When you start from where she started, it's a very big deal.

And we'd like to share how special that is with you. So enjoy the video clip in which Zoe says a word (and exhibits some other fine skills). And thanks for all your love and support. ~ Z Parents.