Sunday, 9 pm. Feeling the usual laziness of this weekend day, I start to make some movement in order to organize the week ahead. I take a look at my agenda, to check goals and delivers (not sure, is this responsibilities or plans?). Everything is under control. Going towards to refrigerator, the place where Luca Toni’s monthly school calendar is hangs by magnets, my eyes ignoring notes such as “bring 7 pet plastic bottles till tomorrow”, searching for the “Show and Share” activity. This is a weekly task in which the students must show and share something about random subjects, stimulating the development of oral expression and storytelling skills. I quickly Iocate the theme of the week and read the description: “this week students will present what makes them unique. They can talk about a physical characteristic, a talent, hobby or something that just they are able to do. Pictures and drawings may be used in the presentation.”
I open the refrigerator, and stay there, stuck inside it, staring to nowhere and thinking about that question “what makes you unique”. What Luca Toni would choose to share with his classmates, in view of my understanding, is the obviousness of his unique condition. I wonder if he would choose to talk about his differences, resulting from the Ectodermal Dysplasia, which makes him a unique child (at least in the group where he lives). The cold coming from the fridge wakes me out of the momentous trance and reminds me of the reason why I was there: to grab the milk, to make the banana smoothie that Luca Toni drinks at bedtime. Then, he goes to bed, I read him a story and give him a good night kiss. I take the opportunity to talk about the week’s school activities, and unpretentiously comment on the show and share. He doesn’t mind, turns to his side and falls asleep.
Monday, 8 pm, it’s time to prepare the presentation. I sit beside him, helping in other activities that should be delivered on the next day, the same day of the presentation.
-Well, now let’s prepare your Show and Share – I said as natural as a strawberry Jello.
I read the whole statement and ask him:
-So, Luca Toni, what makes you unique?
He touches his chin, frowns and think for a few seconds.
-I don’t know! – he answers.
– Don’t you know? – I said, expressing a kind of surprise.
He shakes his head in a negative way. So, I read again the statement, highlighting:
-Think of some “physical characteristic” that is only yours.
-I don’t know mom. But, I believe there is a trick that just I know how to do. – he says.
In a jump, he standing up in front of me and talks, while he shows:
-I can put the tip of my tongue on the tip of my nose!
I laugh and so does he, and once and again he does the trick, saying that he will challenge his classmates to do it.
-I bet nobody can do! – I comment.
To make sure that this “blindness” would not be a mechanism of escape or denial of his own condition, I comment, with no expectations:
-Ah! There is something else you could talk about! Something exclusive of you: you don’t sweat!
With a smile on his face, he quickly responds:
-Ah! Really! I have forgotten! Okay, I can say that too, but I think all my friends already know about it.
I give him a hug and say that the “show and share” will be a success.
Tuesday, 5:30 pm, on the way back home, I meet Luca Toni’s teacher, who greets me and briefly comments about the excellent job he had presented that afternoon. I came home curious to know how the presentation had been gone, but expecting a low level of details. Surprisingly the usual “good” was replaced by a “very good”, followed by a “nobody won my challenge”. And what about the “no sweat”, I ask.
-Oh, everyone wants to be like me! And, you know what? Now they got it why I am so hot and why I always take my shoes off.
Smiling inside and wrapping him in a hug, I think my concern was tied to the esthetic patterns which exist in standardized people, and despite all my effort to not reinforce this message, this pattern of thought and judgment still was inside me. Although there are differences, Luca Toni doesn’t see himself differently, and even knowing of his condition, this isn’t bigger than the person who he is. A person who can do whatever he wants, including incredible things like licking the tip of his own nose.