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Raising Unicorns - Feedback Request


I’m in the process of writing a nonfiction book proposal for a book tentatively called Raising Unicorns: Learning, Growing, and Thriving While Raising a Medically-Complex Child. As I write this book, I am asking you, my readers, for help.


This is the book I wish I had when Maggie first started having seizures, let alone her official diagnosis of Lennox-Gastaut Syndrome. It’s a survival guide and self-help book. It’s a resource and a roadmap. It’s also a collection of personal accounts from countless other families who have gone through the experiences of raising a loved one with a complex medical condition with a questionable prognosis. It’s a community in a book, the recognition, and realization that what you are going through has been shared by others. It contains hope, connection, and practical next steps about how to handle real challenges.


In medical school, many future doctors hear the adage about horses and zebras. The exact words vary and the sources vary as well, but the basic adage is if you hear hooves, think horses instead of zebras. The truth is, this is generally good advice and works for the vast majority of the population. What this means is to rule out the obvious, the common, and the simplest explanations because chances are, that’s the problem if there is a problem. But what if the hooves aren’t horses? How do you navigate the common maladies (horses) to the less common (zebras) to the extraordinarily rare (unicorns)? How do you effectively communicate with doctors when your parent-gut is screaming that there is a more serious problem? How do you enlist school resources to help you navigate support for your child’s education when schools are already strapped for resources? With respect to medical insurance, what do you do when your child’s medical condition requires expensive prescriptions, therapies, and specialists that may not be covered or only partially covered? How do you get equipment that you may need (like a wheelchair or other adaptive tools) when funds are tight and coverage is partial or non-existent? How do you write or read an IEP? What is an IEP? What are co-morbidities? What do you pack for a hospital staycation, planned or otherwise? Once you’re in the hospital, how do you breathe when the smell of urine and bleach overpowers your senses? How do you cope, emotionally, when every single survey and the long-winded stacks of medical/educational paperwork feels so emotionally triggering that it’s difficult to complete, but you must if you wish for your child to get what he or she needs? How do you explain to relatives and well-meaning acquaintances about what your child needs from them? How can you even recognize what support you, the caretaker, need to be that rock of advocacy for your child?

What I would like to know, as I work on drafting and proposals, is what you would want included in such a book. What questions can I research on your behalf? What help and support should I include? If you are an educator for special needs families, what advice can you offer? If you are a medical professional, what should families know? My intention is to help families navigate the realities of raising and advocating a medically complex unicorn with compassion, love, and strength.


Please complete the Google Form (bit.ly/3ECyjXT) with your questions, suggestions, and testimonials. If you would like to be interviewed, please also say so. This is not my story (and if you’d like to read my memoir, Magnolia in November, let me know). This is the story of how we, a community of parents, educators, medical professionals, community members, and most importantly, our unicorns, thrive even in the face of a daunting diagnosis.


Please share with anyone you think could benefit from providing input to this project and thank you for taking the time to read my posts.

3 Comments

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Rated 5 out of 5 stars.

Vanessa no need to over think just write from the heart. God will continue to guide you and be with you in this incredible journey.

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Guest
Sep 11, 2023
Rated 5 out of 5 stars.

You are amazing!

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Guest
Sep 11, 2023
Rated 5 out of 5 stars.

Vane, keep writing. Always. Even when I'm annoying about you writing. You tell our story so much better than I ever could.

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