Singing in the bath

By now, you know that Shaina loves to sing. She barely talks but can belt out the lyrics of dozens of songs (admittedly, with her own pronunciation). Shaina insists that I sing along with her and can’t understand how her verbal dad doesn’t know all the songs. She often surprises us with words from a

Seeing life the right way

“It must be an issue with her left eye.” Shaina’s teachers and therapists all seemed to be in agreement. We had been sitting in Leah, the school principal’s office. Being called into the principal’s office is daunting for a child. It is overwhelming to be there to hear an assessment of your special needs child’s

Passport Blues

Applying for a passport doesn’t rank too high on the fun scale. When your child defiantly sprawls herself on the floor while an official drawls on about the sluggishness of her computer, you need a stiff vodka. Hey, here’s an idea: Alcohol dispensers at government offices. Okay, that might be irresponsible. How about Xanax? We

Happiness is… imperfection

I’m a recovering perfectionist. Many of us are obsessive pedants, paralysed by the need to have things “just right”. We are often useless at delegation because we worry that nobody else can do the job as well as we can. And we don’t enjoy our successes because we’re too busy fretting that they’re not as

Does she feel pain?

We started our morning today with our new unpleasant weekly ritual: To give Shaina an injection. You betcha she doesn’t like it, but she doesn’t cry. Today, after Naomi administered the shot, Shaina looked at me and announced, “It’s sore”. I wasn’t sure if I should whoop or cry. The only thing worse than seeing

Shaina’s voice

On my right sat an inspiring young tennis champion and, next to him, a nervous young mother. Well over a hundred people had arrived to listen to us despite the chilly Sydney night. The event’s organiser welcomed the crowd and began to introduce me as the first speaker. My mind focused on one thought, “How

Kindness across the ocean

You never know where kindness will lead. When we first launched Shaina’s kindness campaign, our goal was to bring light and meaning to a very challenging experience. We wanted Shaina to be celebrated as a force for good rather than “that poor girl”. The first sign that we were headed in the right direction came

Choosing the right lenses

Shaina will often perch a pair of glasses on the tip of her nose and announce that she is a granny. It’s a super-cute reminder that reading glasses are for old folk. Only, I don’t laugh as much as I used to. I’ve worn glasses ever since my third-grade teacher told my mom I couldn’t

Coming out with Shaina’s story

“Discretion is knowing how to hide that which we cannot remedy”. We were slowly coming to terms with the unacceptable: We could not fix Shaina’s condition. Neither could the doctors. While we will never stop praying for a miracle, we had to start to confront our harsh new reality. We had a forever journey ahead

Shaina’s “red Ferrari”

“No, no, never! Absolutely not!” Naomi always arrives at a pragmatic perspective ten times faster than me, but I remained adamant that she was wrong. “I don’t care what sugar-coated name you use for it- we’re not getting one!” As we debated, I had a flashback to a cringey interaction we had experienced a year