Rare is: Unusual, Uncommon, Strange, Odd, Obscure, Extraordinary, Remarkable, Outlier, Exceptional.
When speaking of our children, we want to hear rare as in exceptional, rare as in talent, rare as in skill and ability, rare as in violet eyes, fire red hair or eidetic memory. Hearing that your child is medically rare as in obscure, as in outlier, means something else entirely and often equates to rarity in cure, treatment, and options for longevity and lifespan. Rare quickly became something I loathed and hated so venomously. Speaking to rare doctors of odd specialties about my rare child was not fascinating, it was an exercise in computing statistical probabilities of survival and quality of life. Not something you have in mind when having a child.
We give power to words, their connotation, the imagery they depict; we own them or are enslaved by them … after 12 long months, I changed the way RARE was to be spoken in our house and by Red’s medical team. She wasn’t a rare disease. She was simply and breathtakingly RARE. Plain and simple. And so we became parenting not one, but two rare, extraordinary, remarkable children.
The Rare Child
Rare children cope with profound medical, social and psychological barriers every day in such a way that normalizes these obstacles as a new baseline of experience. Rare children rapidly endure sequential and relentless hardships: invasive medical procedures, surgeries, hospital stays, pain, loss, and disassociation from peers and family. I believe there is an inherent wisdom associated with Rare Kids. Tragedy, trauma, and pain so young, propels these kids into a new world that only our most seasoned adults know exists. Rare is the child who can endure suffering and continue to smile and laugh in what becomes a profound way. This is the reason I cry when I see her so happy, and so carefree. She endures, and so too must we as her parents. Rare are children of all sorts, not just with rare disease; they are our children with Autism, our children with disability; our children with emotional scars, they are all RARE. They carry more on their tiny shoulders.
Children, typically the glue, in a rare family. These are the siblings of our children diagnosed with disease. They live in the suffocating shadow of disease and watch their family ebb and flow in the coping and collapsing involved in the lived experience of chronic illness. Rare siblings go without, they are left alone, they are caste aside in the perpetual times of crises. Studies show that rare siblings have a heightened sense of empathy, develop into advocates and humanitarians disproportionately but suffer a deeper sense of alienation in the family and tend to struggle with trust and attachment (Geric et al., 2011). Rare siblings also endure more, see more pain, spend more time in hospitals and fill the enormous gap in a family left by childhood disease. G is our guardian and intuitively presides with the emotional intelligence far beyond her chronological years: “Mummy don’t be sad, you’re only one person” — age 3.
Parents who are catapulted into caring for a child with extreme medical, social and psychological needs with minimal resources, knowledge or guidance on managing the child’s illness/disability/trauma. Rare parents are pushed firmly in the back into the world of Extraordinary Parenthood whereby the darkest and most impossible grief are the saved by heightened experience known as “a meaningful life”, “elevation”, hopefulness, wisdom and psychological strength. They endure because there is no option. Be strong or fail your children is never acceptable.
This is what I mean when I write Rare, Rare Child, Rare Siblings and Rare Parents/Parenting.