Dear Jo Jo: Life Lessons From Raising a Child With Disability
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.
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?”
Don’t 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.
Don’t 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.)
It’s not going to be hard; it’s 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.
Don’t look for reasons.
“Why is there so much suffering?” the student cried.
“No reason!” Suzuki Roshi replied.
Be happy. This is your life.