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 those junior school “My Holiday” report backs: “We went to Kap Ton. We swum in the oshun. My sister got stinged by a bloobotel. It was nice.” None of that would be true. 

Well, almost none. We dispatched sixteen-year-old Sarale to be a camp counsellor in Cape Town. It was the tonic she needed- ten sun-soaked days of fun with friends, free of Shaina-related stress. Bonus: There were no Bluebottles. 

Twelve-year-old Yudi was stuck with his boring parents and unpredictable little sister for five interminable weeks. We’re not really boring parents- we’re just tired. Shaina saps a lot of our energy. Poor Yudi couldn’t even enjoy the luxury of sleeping late because Shaina is often a drill sergeant at 6:00 a.m. Her wakeup routine goes from whispering his name to yelling “Yudi!” to whacking his head if he dares try five extra minutes of shuteye. 

Happy days in the holidays were the days we could get to a pool. Yudi would glide through the water while Shaina bobbed up and down the shallow end with a responsible adult at her side. In between the swimming breaks, one afternoon at a trampoline park and a quick visit to a games arcade, Shaina challenged us with unusually defiant behaviour. Yudi was our gold medalist in the Shaina Olympics- ducking flying cellphones, grabbing glasses and vases midair and running circles around his sister to elicit a smile. His inexhaustible patience for Shaina is remarkable. No matter how she behaves, he smiles, hugs her, and contrives new shtick to entertain her. 

Thank G-d, our new grandson arrived a few weeks early, bringing joyous excitement to temper the frenzy of keeping up with Shaina. That was excellent for Yudi because Uncle Yudi is the happiest Yudi.

Other than the simcha distraction, he and Sarale (now back from Cape Town) had to face the daily disappointment of plans cancelled due to Shaina’s needs, mixed with the disruptions of her outbursts and topped with the ever-present spectre of a potential medical emergency.  

Shaina is happiest around other people, which means everyone sees her brightest side. Only the privileged few get to experience what happens when her synapses short-circuit. Yudi and Sarale, her two siblings still at home, live with the worst. They adore her, celebrate her celebrity status and defend her fiercely. People nod in their direction and tell them what amazing siblings to Shaina they are. Nobody appreciates how challenging it is to live with a sister with complex special needs. 

The recent December break highlighted how tough it can be for them. 

Their older siblings grew up without the anxiety and disruptions they face daily. While all our children have shared the trauma of Shaina’s medical crises, the younger ones feel the brunt of her ongoing challenges. 

Thank G-d for amazing individuals who take Sarale and Yudi for ice cream, bowling or just away time. They need the chance to enjoy themselves freely. 

Parenting a child with a rare disease brings guilt over not being there as much as we’d like for our other children. We felt that acutely over December. Shaina’s siblings haven’t chosen this life, but they gracefully embrace it. They have tough days and often miss out on the freedoms and fun enjoyed by their peers. They get less of their parents than they deserve. I believe they will emerge resilient, empathic and insightful. I wish they also enjoy respite, freedom and fun along the way.