Misadventure golf
“Shaina, would you like to play golf today?” She leapt out of her chair and started excitedly hopping up and down when I suggested this outing on Sunday. Shaina couldn’t contain her excitement and half-dragged me to the car. I often forget that we need to explain that when we say we will do something,…
Ooh, look at that kid!
How do you feel when you see a child whose hair was stolen by chemotherapy? Do you unwittingly look away? Does it make you uncomfortable? Are you unsure what to say or how to react? When we see a child with a dread disease, we often find it hard to focus on the child, rather…
Two minutes?
“Two minutes?” Her eyes questioned me more than her voice. “Five minutes”. I wanted her to know it would take longer than she would like. “Two minutes” is our stock phrase for trying to get Shaina to be patient. Kids with neurological challenges are often impulsive and impatient. When Shaina wants hot chips or her…
Fly me to the Moon
Would Shaina enjoy a theme park? The question came with an offer of a ticket. Would she? I was sceptical. Shaina loves people but grows uneasy in a crowd. She adores music but recoils from loud noises. I was sure she would panic from the roar of the rollercoasters and the screams of the people…
Happy birthday to me
Shaina loves the Happy Birthday song. Yes, I know all kids do, but she takes it to another level. Shaina trills the tune at the slightest hint of a birthday. She plays it endlessly on YouTube and has taught us all to sing “¡Cumpleaños Feliz!” (Spanish) and “Sana Helwa Ya Gameel” (Arabic). Yup, our verbally…
Speak when you are spoken to
Shaina’s checkup with her neurologist last week went amazingly. Dr T was thrilled at how well Shaina followed instructions, correctly placed (most) puzzle pieces and drew a “person”. If you follow Shaina’s Instagram, you know she successfully shot a hoop before leaving the doctor’s office. We were ecstatic. The only thing she wouldn’t do for…
Pre-Pesach stress
“Pesach, Pesach, Pesach…” Shaina loves singing the kindergarten pre-festival song. The tune is light and jolly, although the lyrics, “We sweep away the chametz…” remind us we have plenty of work to do in anticipation of the holiday. For the week of Passover, Jews may not own, eat or use leaven products. We may not…
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, religious…
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…
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