A Hypoplastic, Congenitally Defective, Transplanted Tale

A Hypoplastic, Congenitally Defective, Transplanted Tale

"Any parent raising a child with a critical/chronic illness deserves to know how others coped. These stories arenâ€™t opportunities to gloat, whine, rage and strike fear. They are just the gift we give another when we learn we are not the only ones."

From the author:
I could have written a blog about my kid â€“ the one born with a funky, hypoplastic heart. But Henry (the Blog) was more than just sharing Henryâ€™s story. Sure, it chronicled our lives during Henryâ€™s years in and out of hospitals, multiple surgeries and terminal maternal hysteria. Good times, indeed!

But, I created the blog 2009 because I thought there needed to be more resources for parents of â€œheart kids.â€ There are oodles of great websites to learn more about congenital heart defects (CHD). But after visiting those â€“ obsessively â€“ I could explain what had grown wrong with Henryâ€™s heart but not what had gone so wrong with mine. That is why Henry (the Blog) eventually became Henry â€œthe Book.â€ I donâ€™t dispense medical advice, I share coping advice. Rather said, Iâ€™ll tell you what I went through so that you can breathe a sigh of relief and say, â€œWell, at least I am not as crazy as that ladyâ€¦â€

Face it, as hard as this is on your kid, it is also hard on you.

The blog was primarily for CHD families to find some common ground, solace and a few laughs. Turns out staph infections, snotty doctors and g-tubes can produce some giggles. In the first year the blog went live, I was taken aback to see how many people found it and then found me. Iâ€™m here in Oklahoma and parents from Alaska, Washington, Florida and so on contacted me. I want to be clear that this is not because I gave the best coping advice or was an outstanding writer. Itâ€™s because so many other CHD blogs focused on one of two things: understanding congenital heart defects or a chronology of events that had happened to a particular CHD family.

I am way too self-absorbed and disorganized to recount every moment of Henryâ€™s journey. Furthermore, I tended to dry heave when I read stories about how brave a heart kid and his mommy were in Cincinnati or Houston. I was not brave. I was a mess.

So I chose, out of utter disregard for how trite I would look, to write the story as honestly as I could. As Henry thrived after his transplant, I found I had less time for the blog. I had a job, was remarried and now a mom to five kids.

But people kept emailing me. Some wanted updates and some asked why I hadnâ€™t made this into a book. In this age of self-publishing and online books, it has become easier to do and so in 2011 I began converting the blog into a book. All proceeds from this book go to support the Malley & Henry Fund (www.malleyandhenryfund.org) which provides outreach and mentoring to Oklahoma families facing a new CHD diagnosis.

Review:
"If someone asked me to describe this memoir, I could not do it in one word. It is powerful, honest, engaging, informative, self-deprecatingly humorous, compassionate, and ultimately encouraging and optimistic. The practical from-the-trenches advice offered seems as though it would be absolutely invaluable to families in similar situations. The sharing of personal experiences, the good, the bad, the overwhelming, and the absurd reassure others that they are not alone in what they are going through.

In this memoir, Erin Taylor describes being "cracked open to grief and fear" but that this experience also creates a space for the unexpected renewal of hope and faith."

~ Susan Cosby Ronnenberg, PhD, LaCrosse, WI
Country USA
Author Taylor Erin
Binding Kindle Edition
Edition 1
EISBN 9780615662879
Format Kindle eBook
IsAdultProduct
NumberOfPages 205
PublicationDate 2012-06-18
ReleaseDate 2012-06-18

Country	USA
Author	Taylor Erin
Binding	Kindle Edition
Edition	1
EISBN	9780615662879
Format	Kindle eBook
IsAdultProduct
NumberOfPages	205
PublicationDate	2012-06-18
ReleaseDate	2012-06-18

A Hypoplastic, Congenitally Defective, Transplanted Tale

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