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 asContinue reading “Happiness is… imperfection”

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 seeingContinue reading “Does she feel pain?”

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, “HowContinue reading “Shaina’s voice”

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 cameContinue reading “Kindness across the ocean”

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’tContinue reading “Choosing the right lenses”

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 aheadContinue reading “Coming out with Shaina’s story”

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 yearContinue reading “Shaina’s “red Ferrari””

Shaina’s Brocha

Life can change in an instant.  Did ours change when Shaina, our youngest daughter, arrived seven weeks early? Or was it the first time that paramedics sweated for an hour to resuscitate her after a seizure? Was it when we eventually received a concrete diagnosis?  Honestly, all of the above played their part. Each ofContinue reading “Shaina’s Brocha”