Purim Skates

I might have been distracted when Sifiso asked me to sign the indemnity form. Naomi wasn’t as horrified as she should have been. She tells me she assumed I was mistakenly duplicating the document she had already completed for Yudi. Nope, I had signed off permission for Shaina to roller skate. You heard me. I green-lighted skates

Rare Disease Day

I had never heard of Rare Disease Day. Rare diseases used to be an abstract concept reserved for unfortunate people elsewhere. Now the 28th of February is marked in my calendar- an unusual date used to mark an odd day. Our family is new to the Rare Disease community, and we don’t know the rules

Fear of needles

I’m not afraid of needles. Injections, blood tests, I don’t love ‘em, but I’m not scared of them. As long as I’m the patient, I’m okay. I could never have entered the medical field because I can’t bear to watch someone else being pricked and prodded. Shaina’s earliest symptoms- long before we had heard of

Shaina makes a Brocha

Our family wakes up at odd hours to do strange things. On Tuesday night, we had the Chicken Dance at 10:30 p.m. We have Games Night at midnight, 2:00 a.m. giggle sessions and the grand unpacking of cupboards at three in the morning. Shaina’s latest late-night escapade both surprised and gratified us. The room was

Summer vacation?

“Joburg is wonderful at this time of the year”. Half the people who make this claim are never here over December. The rest of us find it “wonderful”… half the time. Johannesburg used to grow blissfully tranquil at this time of year as locals flocked to the coast. We would enjoy hot but not humid

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

Stump the doctor

Shaina staggered out of bed last Friday. Over twenty-five years of parenting, we’ve guided our fair share of zombified children to their beds. We’ve never had to steer one from her bed. Had any of our other children lurched drunkenly into the living room, we might have chuckled. Not with Shaina.  My mind raced from zero to

Mirror, mirror on the wall…

I’ve never been into gazing into the mirror. In my youth, I had no patience for it. Now, I have no appetite. What’s there to see, anyway? Since Shaina’s diagnosis, the looking glass shows me the grey strands in my beard and the stress lines across my brow. I don’t always recognise the weary eyes