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

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

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

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 for

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,

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

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

Speaking to the Great Professor

I will admit to feeling high levels of stress and anxiety yesterday. Thankfully, I remembered the story of the Professor of Hanipoli.  Shaina started coughing (again) earlier this week. A visit to her pulmonologist confirmed what we had suspected: a viral chest and ear infection. We left with a shopping list for the pharmacy and