Guest post- Shaina’s Saba

Guest post by Naomi (Shaina’s mom). Today (the 23rd of Adar) is my Saba (grandfather)’s first yartzeit. For me, it is a day of reflection- a time to appreciate who Saba was and how much he impacted my life. Saba was born in 1923 in Tarnopol, Poland. He was the youngest of a large, religiousContinue reading “Guest post- Shaina’s Saba”

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 skatesContinue reading “Purim 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 rulesContinue reading “Rare Disease Day”

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 ofContinue reading “Fear of needles”

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 wasContinue reading “Shaina makes a Brocha”

Time management

7:58 yesterday morning. I’m due to address the Torah Academy primary school at 8:00. At 8:15, Naomi and I are meeting with some of Shaina’s team (principal, teacher, facilitator, and therapists). I teach a weekly class in Glenhazel at 9:00 and another in Sandton at 10:30. Straight after that, I am meeting someone at myContinue reading “Time management”

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 aContinue reading “Singing in the bath”

It’s not always fun as the sibling

Whohoo! We survived the summer vacation and returned our kids to school intact. Ask us how our summer went, and we’ll politely respond that Shaina is happy to be back in the structured social environment of the classroom. I wouldn’t suggest you ask our other children how their holiday was. Luckily, they’re too old forContinue reading “It’s not always fun as the sibling”

Sometimes, it’s exhausting

Naomi had turned her back for less than a minute. It was enough time for Shaina to empty a bag of baking powder over herself and the kitchen floor. She mixed in a vial of blue food colouring for good measure. I arrived home to Smurfette and her exasperated mom.  Shaina is delightful. She’s fun,Continue reading “Sometimes, it’s exhausting”