Damini Turns 18

Damini "turned 18" (that’s the new turn of phrase that she discovered along with “I’m glad”) recently, and all the people who mattered to her celebrated it with her as if it was their personal milestone. Damini is into cricket these days, so the entire party played a very competitive game of cricket. She captained one team and her favourite cousin, Sakshi, captained the other. Everyone else in the age range of 8 to 80 shadow-captained the game and had a blast. I don’t think it mattered much to her that her team won. She was thrilled every time her bat made contact with the ball.

Turning 18 is a big thing. In the country we live in, this is the day on which we magically turn ‘adult’. From this day onwards we get to drive, drink alcohol, get our own bank accounts, get married, vote, go on an airplane all by ourselves….most of these do not apply to Damini. This does not hurt her yet, except may be the last one – she really wants to go to Mangalore to visit her grandparents “all by myself”. How do I even begin to explain to her that that’s never going to happen?

I have read a lot of literature, which talks of the importance of telling them of their condition and the label that goes with it. But when is it really a good time to slip, “Hey, by the way, you happen to have an extra chromosome that’s putting a monkey wrench into your life” into the conversation? 

Lets say I decide to have ‘The Chat’ with her, sit her down, hand her an ice cream to sweeten the pill and say, “Baby, I’ve been meaning to tell you this. You are a person with Down’s syndrome. It means you’ve got one extra chromosome over the rest of us, that’s why you’ll never be like other people of your age. That’s why you are 18 going on 10. That’s also why while the rest of the 18 year olds are in grade 12 getting tortured with grades and college apps you are still trying to figure out multiplication…” This could go on for a while as the list is really long.

I can just feel her bewilderment. Given how experiential learning has to be for her, I have not a clue how I am going to explain all this starting with "What is a chromosome?"

As Damini started growing up, we realized that one of the most crucial things for all of our happiness was to let go of all expectations of age ‘appropriateness’. Holding her to the normal timeframe of development and achievement was just going to stress her out and put amazing pressure on us. Therefore her growth has been one of ‘timelessness’ other than counting the number of candles on the cake each birthday.

 This does not mean that she is just left to be. There is definitely the broad goal of making her independent, capable of dealing with the world, and finding that one thing that will give her purpose in life. And we are working toward this all the time.

Meanwhile, she leads a life where her routine gives her purpose: she wakes up everyday with a smile on her face to the promise of that day, lives completely in the moment, and never carries her disappointments to bed. 

This is the ideal state of being the whole world is struggling to get to.

How do I tell her that that’s a function of an extra chromosome? That’s not 'normal'?