Raising a Rare Girl Quotes

“Sometimes we are joyful because we have known grief. Sometimes we know grief because we have dwelled— for full long days or microcosmic minutes—in the sun-soaked luminescence of joy.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Disability was not something to find blame for, because disability was not a problem. Through the neutral lens of science, my kid’s chromosomal anomaly was a product of diversity, and who could be upset about that?”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Becoming a mother is already a rupturing event—an apocalypse of the heart, an undoing and a redoing of your world. In loving Fiona, my heart broke open. There was a certain kind of agony in this—one for which I’m eternally grateful.”
― Heather Lanier, Raising a Rare Girl

“It’s okay that these bodies we live in are not always the promises we’d wished for. Life is full beneath this cracked porcelain. Inside this tender flesh.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“There’s enough mother-shame on this planet to fill oceans with sludge— we don’t need more of it.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“…when therapists use a “deficit lens,” they tend to limit a child’s opportunities and view the child as a problem in need of “fixing.” But a capacity-building lens will not only meet and celebrate kids where they are, it often will create higher outcomes for them. In other words, kids grow more when professionals see their strengths.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Maybe we give up so we can more fully receive. Maybe we give up so we receive something better than what our small minds had wanted.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“I tried earnestly to become the living counterargument to people’s beliefs that my girl needed fixing. That a life with disability was a lesser, a pitiful life. That the right trajectory of the story was to become un-disabled. I was tired of trying to show the opposite by example.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Love is perhaps what’s left of us when we are no longer all the things we’d primped and planned.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“People with 4p- shared an absence of something. How could this create a presence of something? How could deletion create addition? It seemed both a mystery and a metaphor . A so-called deficit could surprise you. A so-called deficit could create an attribute.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“How did I ever learn that people like my daughter were less-than? Had the roots of my thinking been planted by the defect language, by the bad seed and at zero language? Had they begun in the hallways of that elementary school I attended? Not quite. The roots of my thinking were older than me. They were older than the neglected buildings that housed people with intellectual disabilities, older than the American laws requiring their sterilization. The roots dug deep into history’s soil, reaching even past the story of Jesus’s disciples, who found a blind man on the side of a road and asked their master, “Who sinned to make this man blind? The man or his parents?” Disability as punishment . Disability as sin. Disability as problem, as outcast, as other. These equations have been graffitied all over human history.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“...in my daughter’s first year, I was learning: the simple act of loving her was countercultural.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“I learned that love came in finding someone who just let you be yourself.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“We don’t care for children because we love them, Alison Gopnik writes. We love them because we care for them. It had finally happened. Our needs held hands.”
― Heather Lanier, Raising a Rare Girl

“The word ‘cure’ was a bomb. For so many people, disability needs to be fixed in order for it to finish its story.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Perhaps disability was an integral part of life’s dance. Perhaps fragility was built into our very design. If the source of fragility was also the source of strength, then perhaps fragility was also strength.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Through the phantom chunk of Fiona’s missing fourth chromosome, I’ve gotten to see that we all, every day, take the miraculous for granted.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Fiona was always a gift, of course. But so was that suspect thing, that syndrome. It had looked at the time like something wrong. How could I have known? How could we ever know that the dull spoon jabbing at our hearts isn’t always an attack? Sometimes it’s a tenderizer, softening us into a stranger, truer way of being human.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“This belief in the virtue of the “happy” and suffering-free life sterilizes and shrinks us, minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy. The point of this human life, I believe, is love. And the ridiculous and brave and risky act of love turns my heart into taffy, stretches it across the broad spectrum of human feeling.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“It’s not off-limits in American society to deliberate on whether the disabled should die.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Here’s something a parent of a typical child probably never has to suffer through: a conversation with a doctor in which the doctor wonders aloud whether a child like theirs can be ethically killed.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Gravity is neutral. It’s factual. It’s the circumstance with which we live— the thing that keeps us bound to the earth and hurling around the sun. Likewise, Fiona’s body was factual, a circumstance. Her fourth chromosome was as much a problem as gravity, which meant not at all.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Fiona’s body had always told a different story. Two years earlier, I’d been afraid to hear this story. Now, I heard it as no less beautiful than her sister’s.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Normal is not just a range on the bell curve. It’s also a community, a collective. To be Normal is to partake in a certain kind of belonging with others.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“But when you push away disability, you also push away your humanity. When you push away any fissure of vulnerability, you also push away the tender truth about yourself. You are not, were never made to be, SuperHuman. You were made to be human. And this doesn’t exactly break the heart, but it does split apart every clapboard and nail and piece of barbed wire you’ve hammered to it.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“This is another way to parent, I thought. This is another way to love—this caring for a child who would not grow beyond her need for you.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“Fiona and her fourth chromosome offered a profound truth: There were no predictions to make. No sculpted narratives, no expected plot lines to lean on. Having a medically complicated kid might initially put a parent closer to this truth, but we all eventually face it. So maybe we could just trust the uncertainty. Trust the abyss. I began to believe, however shakily, that if my family fell straight into my greatest fears, the groundless darkness would somehow cradle us. Not that everything would work out according to my will, but that we’d find benevolence in those murky depths. I suppose this was a way of imagining God, a form of faith.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“In these instances, health professionals think a mother’s devotion is worth the world, sure, but they also think some lives aren’t deserving of it.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“We were in that very moment carriers of things that disable the body, even while he believed disability to be a curmudgeonly, depressing topic that wasn’t his—wasn’t ours.”
― Heather Lanier, Raising a Rare Girl: A Memoir

“I suspected we should cultivate okay-ness with things like nine toes, eleven fingers— with the body in whatever way it came.”
― Heather Lanier, Raising a Rare Girl: A Memoir