Raising a Rare Girl: A Memoir Hardcover – July 7, 2020

I bought this book in 2020 on kindle, and had never before re-read a book . This book? 3 times so far!Heather is a truly gifted author who portrays both the pain and suffering and the many joys involved in raising her beautiful daughter.Her masterful portrayal of the family’s way too frequent interactions with the healthcare system and those who work in it will leave you breathless, stunned and awed by such raw, unfettered emotion.You will likely find yourself drawn into cheering on medical staff who are readily identifiable as the good guys, some of whom were even spectacular, and you may find yourself experiencing murderous impulses towards those who fell short, sometimes surprisingly badly…But she never blames,, she just teaches . She is clearly as much teacher as she is author.It’s a must read for anyone in healthcare at any level and a fascinating read for anyone at all.I have read many patient/family accounts of navigating this crazy system I’ve worked in for 45 years now and I have to say this struck a cord like no other.Thanks Heather Lanier, I so appreciate your work!- Helen Mitele, Nurse Practitioner

inspirational life story

Learned a lot on how to raise a special child

Heather's story is mind-shaking and took only a half-second to "pull my leash" (get and keep myattention). Everything medicine -- good or bad -- fascinates me; having my own unique history,I relate to her emotional joys and fears and am writing my own memoir.

As a mother to a rare daughter myself, I found this book to be everything (and more) I have been waiting to read. I was comforted to see how much of our own experience was echoed in Ms. Lanier's words. We aren't the only ones! We aren't alone! Her writing is beautiful and her story is important. I wholeheartedly recommend this book to any family member of a child with complex needs, anyone who works with rare children or any human being who wants to be a more understanding and compassionate person. I foresee myself reading this book over and over again throughout the years.

I'm a parent of two typically developing kids, and this is the best book on parenting I've ever read. A reminder that the three most important gifts we can give our children are our love, support, and acceptance. Lanier's book is more timely than Dr. Spock, more practical than "What to Expect . . .," as the idea that we can reliably expect anything (other than that patenting is hard work) is pure folly. On nearly every page there is a passage I wanted to underline, but I didn't want to interrupt the pure joy of reading. I'll break out my pen for the second read. And the third.

This book is fantastic and a must read especially if you’re a caregiver to a child with a rare disease. It was so relatable and I was drawn in by the way Lanier was able to articulate so well the ups and downs of a life with a child with a rare disease. I found myself laughing, crying, and always wanting to read more.

In her memoir about being the mother to a child with a rare syndrome, Heather Lanier tells her family's story weaving in rich threads that explore ableism, "norms," religion and spirituality, and society's propensity to want to create "super babies."The writing is phenomenal. I will never think of "disabilities" in the same way.Favorite quote: "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."

Interesting read.

I absolutely loved this book.It made me laugh. It made my cry. It made me think.I am mother to another rare, beautiful, determined girl, who has enriched my life while tenderising my heart in so many unexpected ways.It was an absolute delight to read a similar journey from a similarly minded Mum to whom I could relate so easily, and to think of the overriding joy our situations have offered us in appreciating all we previously took for granted, and everything our wonderful daughters have achieved in a world not quite ready for their uniqueness. Thanks to all involved in making this book happen. It was a delight to read.