Tag Archives: medical challenges

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”

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?”

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 toContinue reading “Stump the doctor”

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 andContinue reading “Speaking to the Great Professor”

A medical crisis out of nowhere

Pesach 2020 was unlike any Pesach our family had experienced. In addition to the typical frenetic pre-Pesach prep, we worked hard to ensure that everyone in our community had their Pesach needs. We set up a Covid-friendly system for people to collect the hand-baked shemura matzos we’d usually distribute before Pesach. We packaged seder-to-go packs. And weContinue reading “A medical crisis out of nowhere”