Yearning for Normal: My Son's Life with 22q.11 Deletion Syndrome

by Susan Ellison Busch

This award winning memoir tells a mother's story of raising her son Michael, who was born missing a submicroscopic piece of chromosome 22. That tiny missing fragment of DNA affected every aspect of his life physically, mentally, and spiritually. Michael's mother describes her adventures and misadventures with the medical system, educational system, and legal systems during his growing up years. She also describes her own internal struggles and wrestling matches with God. While Michael and his mother were both yearning for normal through their struggles, they were also learning acceptance and love.

Genres: Nonfiction

326 pages, Paperback

First published August 13, 2013

About the author

Susan Busch has written two very different, unique books. Yearning for Normal brought awareness to the challenges of raising a child with 22q11 Deletion syndrome.

"Chance at Life" is a moving and inspiring story of the "regulars" at a dialysis center, including both patients and caregivers.

Susan worked with nephrology patients as a nurse at the Cleveland Clinic for many years. Her engaging story, while fictional, includes details that only an insider would know.


Susan Ellison Busch MSN, CNP taught NP students at Kent State University. She has spoken at national conferences on topics related to kidney disease and also about raising a son with Deletion 22q.11 Syndrome. She lives with her husband on the edge of the Cuyahoga Valley National Park in Ohio. When she isn’t working or trying to write, she enjoys the trees and the sky, hiking and playing tennis

Reviews

[April Helms · Rating 5 out of 5]

This is a powerfully written book on the author's struggles in dealing with her son, who has Deletion 22q.11. I had never heard of this condition but I guess it is fairly common. What happens is a small portion of the 22nd chromosome is deleted. This tiny deletion can cause a myriad of problems, as Busch outlines. Breathing difficulties. Developmental delays. Orthopedic difficulties. Even psychiatric issues. Busch relates her struggles in an honest and easy-to-follow tone. Her view also is interesting as someone who is not only a mother, but a nurse. This was an insightful read, and I'd recommend it for anyone facing a similar diagnosis.

[Leigh Ann · Rating 5 out of 5]

Susan's open, honest writing about her life with her son is encouraging not only to those in similar situations , but to all of us who are finding our way through life. Most of all, her chapter on forgiveness is so powerful that all if us should read it. This book is an amazing story of redemption.

[Marianne Cashman · Rating 1 out of 5]

I would not recommend this to parents of those newly diagnosed with 22Q deletion. This syndrome runs on a spectrum. No one can predict how their child will present…. but Mikes challenges seem to be some of the worst…. I bought this book thinking it could give HOPE…. It does not. It is heartbreaking. Yes it gives an understanding of one family’s struggle…. But no one needs to read this to be made aware of what can happen. We all know what CAN happen as 22Q individuals get older…. But what happened to Mike does NOT happen to everyone with 22Q. I’ll be returning this book and not sharing it with my daughter.

[Karrie · Rating 5 out of 5]

Recommended reading for 22q parents

As a mom of a young son who was diagnosed with 22q at 5 weeks old I found this book very enlightening. It gave an insight into the world of raising a child with this syndrome.

[Ernest Dempsey · Rating 5 out of 5]

The story of Susan Ellison Busch, as narrated in her memoir Yearning for Normal: My Son’s Life with Deletion 22q.11 engages the reader since its very first page. An experienced nurse, Susan shares with readers the story of her second child, Mike, who was born with a less-known genetic condition called Deletion 22q.11 syndrome. This condition, extremely difficult to diagnose, made Mike a special need child who faced a range of adverse, often life-threatening risks, both physical and psychological, since his birth.

There is plenty of invaluable health-related information in this book – medical terminology and their meaning, various medical procedures and their importance, things to watch out for, and the way life is affected by medical conditions like Deletion 22q that are difficult to diagnose and treat. Above all, however, this book shows the power of love and compassion, which makes life meaningful and valuable in the face of threats that most of us face at one stage or another in our lives.

Highly recommended for everyone who values life and love.