If you could go back to the day you got the diagnosis about your child, what would you tell yourself? What rules would you give yourself to live by? What do you know now that you wish you’d known then? 

A letter to my younger self – 25 years ago

Dear Jo Jo,

Buckle your seat belt. That tiny little baby you just adopted? All of 1 kilo? She’s about to take you on the roller coaster ride of your life.

A tiny baby with her 3 year old sisterShe will astonish you first by beating the odds: Born on the side of a dirt road in India! 12 weeks premature! Her mother’s 13th child! Doctors will tell you not to expect much. “Defective” is how a close relative will describe her. She’ll be slow in the beginning, but she will catch up. She’ll be funny and clever and full of imagination and mischief. (When she is 4 years old, even though she has Cerebral Palsy and a bit of cognitive delay, you will ask her if she’s ready to go to church and she will raise both arms over her head like a little Holy Roller and say ”Hallowed Be Thy Name!”)

By the time she is five, though, something will change. You won’t get it at first. You’ll think it’s just part of the Cerebral Palsy. It will happen so slowly you’ll think you imagined that her vocabulary used to be bigger. As her falls grow more frequent and her balance less and less certain, you’ll forget how she used to be able to climb the ladder on the jungle gym without assistance or carry her plate and cup into the kitchen to put them in the sink. What skills she once had!

When she is seven, your doctor will tell you it’s a degenerative disorder. You’ll have her tested for everything that’s treatable until you finally run through that whole list. Whatever she has, it’s not on it.

Today, Moy Moy is 25. And here’s what I know now. I wish, Jo Jo, that you could have known these things then.


You don’t realise it yet, but Moy Moy’s disability is going to be your ticket to a new life, a life you could never have imagined – not even in your wildest dreams. She’s going to introduce you to some of the most amazing people on the planet and you are going to laugh louder, dream bigger and care more deeply than you ever thought yourself capable of. She is going to teach you about a whole new world beyond competition, ambition and personal striving. She’s going to help you build an institution that will change peoples’ lives. She’s going to show you a different way to live.

Line of smiling people in colorful dress

Fun is a flighty, frivolous word that doesn’t seem to cover the gravitas of what you think you are going through right now, but believe me, fun is perfect. Fun should be your mantra, the standard by which you judge whatever else you are doing with your kids, with your colleagues, with your life: “Are we having enough fun?”


One highly qualified doctor is going to tell you, when Moy Moy is three and you already know that something is up, that she is perfectly fine and you have nothing to worry about. Another will tell you  that she will die by the time she is nine. Their rules are not yours. Don’t trust them. Trust yourself. They may know more than you do about this syndrome or that genetic disorder but you are the world’s foremost authority on Moy Moy. No one, no one, knows her as well as you do. More and more, your answers are going to have to come from inside. Trust them.

Mother and two daughters


Bearded Indian man, arms outstretched, smiling

Two girls and a boy - all beautiful young people

It’s easy to get lost in the needs of a child with disability. You will end up putting your marriage on hold and short-changing your other kids if you aren’t careful. Benignly neglecting Moy Moy occasionally is fine. She’ll understand.


Smiling white haired woman in shorts, holding huge tissue paper flowers of different colours
It’s tempting to ham it up, to focus on the difficulties, to exaggerate the hoops you have to jump through every day. You want to make sure that no one misses out on how hard you are working just to stay afloat. Don’t do that. Everyone is already in awe of you. You’ve got a handicapped kid. Make it look easy. Smile. Float along. Moaners and groaners are a dime a dozen. Be cool. Make people wonder what it is you know that they don’t. (You know so much!)


You think, because you are an American and young and totally self-reliant that you should handle this all on your own. Rules like that should be thrown out the window. Because you can’t and you shouldn’t. It’s not good for you, it’s not good for Moy Moy and it’s not good for anyone else. People are out there just waiting to be asked. Moy Moy is bored with your face being the only one she sees every single moment of her day. She doesn’t need a martyr. You don’t need to be one. (And everyone else wants in on the fun. Remember? This is going to be fun.)

Young woman helping with Moy


The biggest problem with having a 25-year-old who is still in diapers is not the diapers. It’s not the tube feeding, the endless physio or the bathing and dressing. It’s the boredom. You are with someone every day whom you love to bits but who doesn’t respond to anything you say or do. You’ve adjusted to the disappointment and your equanimity would do a Buddhist monk proud but you have to admit you are bored.

So be proactive and self-protective. Find things to do which amuse you and which can be done without neglecting Moy Moy. Music. Movies. Long walks. That expensive stroller with the all-terrain wheels that allows you to take her anywhere? Not.A.Luxury.Item. Read to her out loud, but read the books you like  – not nursery rhymes or kiddie stories. Both of you have to stay sane, baby.

Mother reading to daughter


“Why is there so much suffering?” the student cried.

Young woman in wheelchair looking pensive

“No reason!” Suzuki Roshi replied.

Moy Moy smiling!


Family photo at a wedding - bride kneeling on ground beside sister in a wheelchair and sister on other side; groom, brother, father and mother standing behind

Showing 7 comments
  • Natasha Badhwar

    Jo, you rockstar! Thank you for being such an inspiration. For writing so well. Hugs!

  • Sheryl

    The words just flow from your heart, don’t they? that’s the secret why they touch my heart every time.

  • Neha Kakkar

    Hello Jo ma’am,
    Your one action enlightened many… It needs lot of mental preparations as well as strong will power to face such challenge in life which seems to have developed so beautifully and positively by you and your family over the years.
    Stay blessed?? Best wishes

  • Angie

    You are a wonder, Jo! Thank you for sharing. <3
    Sending much love and endless admiration.

  • Dhara

    Awesome perspective…..u make it look so positively simpler…

  • Ravi

    This is probably the best article I have read in a long, long time. Thanks.

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