Dear Jo Jo: Life Lessons From Raising a Child With Disability


Mar 24, 2015


A letter to my 25-years-younger self.

Dear Jo Jo,

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

She will astonish you first by beating the odds: Born on the side of a dirt road in India! Twelve weeks premature! Her mother’s thirteenth 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 four 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.

This is going to be fun.

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. She is going to teach you about a whole new world beyond competition, ambition, and personal striving.

Jo and her daughter, Moy Moy. (KEN CARL)
Jo and her daughter, Moy Moy. (KEN CARL)

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. 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?”

Dont believe the experts.

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.

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.

Dont forget your husband and remember you have other children.

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.

Make it look easy.

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!)

Ask for help.

You think, because you are an American, and young, and totally self-reliant that you can handle this all on your own. 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.)

Its not going to be hard; its going to be boring.

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 now climbing the walls.

Be proactive and self-protective. Find things to do that amuse you and that 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.

Dont look for reasons.

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

“No reason!” Suzuki Roshi replied.

Be happy. This is your life.


Written By Jo Chopra

Jo Chopra McGowan is an American by birth and a writer by profession. She is a former criminal (peace movement/anti-abortion activist jailed in America on a dozen occasions), a mother of three, and has lived in India for the past 33 years with her Indian husband, saas, masiji and assorted other joint family-wallas.

She is a co-founder and director of the Latika Roy Foundation, a voluntary organization in Dehradun for children with disability. She also trained as a lay midwife, is amusingly fluent in Hindi, and loves public speaking, opera, photography, reading, cooking and wine.

  1. Baba N Tiruvalam

    A very well written article. Brings out the true feelings of many of us bringing up children with disability. But not many of us can express ourselves as Jo Chopra has done. Thank you Jo Jo, for putting our thoughts in words!!

    • Jo Chopra McGowan

      Thank you for your response, Baba! It means a great deal to me.

  2. Smita Dikshit

    “Thank You” for expressing emotions so beautifully and so eloquently.

  3. Satyam

    Thank you for this incredibly moving piece Ms.Chopra.I met you very briefly many years ago (in Delhi, as part of a research study I was conducting for an NGO in Bombay) and have always remembered being struck by your incredible spirit and energy. Thank you for all that you have done, and for this beautiful piece – Satyam Viswanathan

    • Jo Chopra McGowan

      Thank you, Satyam! I am so touched that you remember me from so long ago . . . would love to connect again.

  4. harsha

    Another amazingly touching piece from your stable Jo. And straight from the heart, unedited.Thanks for being who you are, as you are. Harsha

  5. Pooja

    An absolutely poignant yet uplifting and light hearted account of a parent. Brought a smile to my face. There is evidently a lot to learn from you!

    • Jo Chopra McGowan

      Thank you, Pooja! I’m smiling reading your comment!

  6. Hetal Dedhia

    Absolutely love reading all that you write !!! So much to learn ….

    • Jo Chopra McGowan

      Hetal, thank you! Somehow I missed this comment. So sweet of you to say that!

  7. Shruti

    This is honestly an inspiration to a lot of people. My aunt being one of them. My aunt is going through a similar situation with my 6 year old brother. She keeps a smile on regardless of how bad it gets and this article just made that smile a lot more wider. I’m thankful to you for sharing this. It really helped.

    • Jo Chopra

      Hi Shruti! I just saw this – apologies for the late response and many thanks for the comment. I would love to hear more about your cousin . . . where is he located? Maybe we can help? Jo

  8. randeep

    Hi! The storm inside you, the patience with which you handle it.. all reflects here, in your words..


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