Searching For Every Step Finding Purpose In Living With Spinal Muscular Atrophy

Author : Kurt E. Beach
Publisher : Beach Publishing LLC
ISBN 13 : 9780578971971
Total Pages : 208 pages
Book Rating : 4.76/5 ( download)

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Download or read book Searching For Every Step: Finding Purpose in Living With Spinal Muscular Atrophy written by Kurt E. Beach and published by Beach Publishing LLC. This book was released on 2021-10-15 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: This inspiring memoir tells the story of a young man who is diagnosed with spinal muscular atrophy-a rare muscular disease-at a young age. In Searching for Every Step, author Kurt Beach offers his insight on the steps he took to find his true purpose in life. In his memoir, Beach recalls the steps and missteps he took in order to manage his bout with SMA and how this rare condition played a part in many decisions he made throughout his life. Despite his rare circumstances, his struggles are struggles we all face. Through his condition, he finds the courage and strength to overcome physical, emotional, and social obstacles concerning his career aspirations, schooling, romantic relationships, and even adoption. During a life changing event, Beach finds what he is missing in life. This experience not only shows him what kind of strength he has but what his true purpose in life is. Searching for Every Step delivers wisdom and inspiration to anyone who has struggled through life and gives them the inspiration to shift their focus away from their troubles and toward a more positive, faith-driven life

Author : Connie Dee Lamb
Publisher :
ISBN 13 :
Total Pages : 166 pages
Book Rating : 4.80/5 ( download)

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Download or read book Health-related Quality of Life Among Individuals Living with Spinal Muscular Atrophy written by Connie Dee Lamb and published by . This book was released on 2008 with total page 166 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Author : Grace Saunders
Publisher : AuthorHouse
ISBN 13 : 1496997549
Total Pages : 187 pages
Book Rating : 4.48/5 ( download)

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Download or read book It's One of Them! written by Grace Saunders and published by AuthorHouse. This book was released on 2014-12-10 with total page 187 pages. Available in PDF, EPUB and Kindle. Book excerpt: Grace Saunders and her brother Ben were both born with the genetic disorder spinal muscular atrophy type 2/3, SMA. From her happy childhood growing up in Hertfordshire, enduring painful operations, to becoming a mom and a wife living an independent life in Coventry. Her extraordinary story of strength, not only coping with a severe physical disability, but being victim to domestic violence. Graces story also involves drugs, murder, the police investigation that was Operation Ore and the death of her brother, aged thirty. This is a womans struggle for a normal life, independence, and remarkably, having a healthy baby girl when she was told she would never be able to have children. She coped many years, being a single mother with the help of her family and personal care assistants. She writes about her education, care, and funny stories about the world of Internet dating. She tells her story with, honesty, humor, and heartfelt emotion, Grace shares the highs and lows she has faced and has come out the other side, although a little bruised, stronger than ever, and still smiling. Graces attitude to the life she has been dealt with is, as she says, Its One of Them!

Author : Trina Allen
Publisher :
ISBN 13 : 9780595414642
Total Pages : 0 pages
Book Rating : 4.48/5 ( download)

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Download or read book Living with Spinal Muscular Atrophy written by Trina Allen and published by . This book was released on 2006-09 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "November 3, 2003-April 27, 2004. Our love, our life, our angel. A day by day journey with SMA. Learn about SMA. See how life can change overnight. Feel the courage and strength. And much more"--Subtitles

Author : Shane Burcaw
Publisher : Macmillan
ISBN 13 : 162672007X
Total Pages : 257 pages
Book Rating : 4.77/5 ( download)

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Download or read book Laughing at My Nightmare written by Shane Burcaw and published by Macmillan. This book was released on 2014-10-14 with total page 257 pages. Available in PDF, EPUB and Kindle. Book excerpt: "With acerbic wit & a hilarious voice, Shane Burcaw's YA memoir describes the challenges he faces as a 20-year-old with muscular atrophy. From awkward handshakes to trying to finding a girlfriend and everything in between"--

Author : Ben Mattlin
Publisher : Skyhorse Publishing Inc.
ISBN 13 : 1616087315
Total Pages : 209 pages
Book Rating : 4.19/5 ( download)

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Download or read book Miracle Boy Grows Up written by Ben Mattlin and published by Skyhorse Publishing Inc.. This book was released on 2012-08-14 with total page 209 pages. Available in PDF, EPUB and Kindle. Book excerpt: No one thought Ben Mattlin would live past childhood.But that didn t stop...

Author : Jan Grue
Publisher : FSG Originals
ISBN 13 : 0374600791
Total Pages : 272 pages
Book Rating : 4.92/5 ( download)

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Download or read book I Live a Life Like Yours written by Jan Grue and published by FSG Originals. This book was released on 2021-08-17 with total page 272 pages. Available in PDF, EPUB and Kindle. Book excerpt: "A quietly brilliant book that warms slowly in the hands." —Dwight Garner, The New York Times I am not talking about surviving. I am not talking about becoming human, but about how I came to realize that I had always already been human. I am writing about all that I wanted to have, and how I got it. I am writing about what it cost, and how I was able to afford it. Jan Grue was diagnosed with spinal muscular atrophy at the age of three. Shifting between specific periods of his life—his youth with his parents and sister in Norway; his years of study in Berkeley, St. Petersburg, and Amsterdam; and his current life as a professor, husband, and father—he intersperses these histories with elegant, astonishingly wise reflections on the world, social structures, disability, loss, relationships, and the body: in short, on what it means to be human. Along the way, Grue moves effortlessly between his own story and those of others, incorporating reflections on philosophy, film, art, and the work of writers from Joan Didion to Michael Foucault. He revives the cold, clinical language of his childhood, drawing from a stack of medical records that first forced the boy who thought of himself as “just Jan” to perceive that his body, and therefore his self, was defined by its defects. I Live a Life Like Yours is a love story. It is rich with loss, sorrow, and joy, and with the details of one life: a girlfriend pushing Grue through the airport and forgetting him next to the baggage claim; schoolmates forming a chain behind his wheelchair on the ice one winter day; his parents writing desperate letters in search of proper treatment for their son; his own young son climbing into his lap as he sits in his wheelchair, only to leap down and run away too quickly to catch. It is a story about accepting one’s own body and limitations, and learning to love life as it is while remaining open to hope and discovery.

Author : Sarah J. Robinson
Publisher : WaterBrook
ISBN 13 : 0593193539
Total Pages : 257 pages
Book Rating : 4.32/5 ( download)

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Download or read book I Love Jesus, But I Want to Die written by Sarah J. Robinson and published by WaterBrook. This book was released on 2021-05-11 with total page 257 pages. Available in PDF, EPUB and Kindle. Book excerpt: A compassionate, shame-free guide for your darkest days “A one-of-a-kind book . . . to read for yourself or give to a struggling friend or loved one without the fear that depression and suicidal thoughts will be minimized, medicalized or over-spiritualized.”—Kay Warren, cofounder of Saddleback Church What happens when loving Jesus doesn’t cure you of depression, anxiety, or suicidal thoughts? You might be crushed by shame over your mental illness, only to be told by well-meaning Christians to “choose joy” and “pray more.” So you beg God to take away the pain, but nothing eases the ache inside. As darkness lingers and color drains from your world, you’re left wondering if God has abandoned you. You just want a way out. But there’s hope. In I Love Jesus, But I Want to Die, Sarah J. Robinson offers a healthy, practical, and shame-free guide for Christians struggling with mental illness. With unflinching honesty, Sarah shares her story of battling depression and fighting to stay alive despite toxic theology that made her afraid to seek help outside the church. Pairing her own story with scriptural insights, mental health research, and simple practices, Sarah helps you reconnect with the God who is present in our deepest anguish and discover that you are worth everything it takes to get better. Beautifully written and full of hard-won wisdom, I Love Jesus, But I Want to Die offers a path toward a rich, hope-filled life in Christ, even when healing doesn’t look like what you expect.

Author : Shane Burcaw
Publisher : Roaring Brook Press
ISBN 13 : 1626727694
Total Pages : 256 pages
Book Rating : 4.94/5 ( download)

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Download or read book Strangers Assume My Girlfriend Is My Nurse written by Shane Burcaw and published by Roaring Brook Press. This book was released on 2019-04-30 with total page 256 pages. Available in PDF, EPUB and Kindle. Book excerpt: With his signature wit, twenty-something author, blogger, and entrepreneur Shane Burcaw is back with an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace. On the surface, these essays are about day-to-day life as a wheelchair user with a degenerative disease, but they are actually about family, love, and coming of age. Shane Burcaw is one half of the hillarious YouTube duo, Squirmy and Grubs, which he runs with his girlfriend, now fiancee, Hannah Aylward.

Author : Kelly Mantoan
Publisher : Our Sunday Visitor
ISBN 13 : 168192417X
Total Pages : 126 pages
Book Rating : 4.75/5 ( download)

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Download or read book Better Than OK written by Kelly Mantoan and published by Our Sunday Visitor. This book was released on 2021-08-26 with total page 126 pages. Available in PDF, EPUB and Kindle. Book excerpt: “Every day is joyful. Every day is a gift. Every day I can thank God from the bottom of my heart.” Kelly Mantoan wasn’t always able to say these words. As a mother of five children, two with profound disabilities, all her energy and attention was focused on her children’s diagnoses and round the clock care. Drained and struggling, Kelly wondered if she had what it took to be the kind of parent they needed. She craved support as a Catholic mother with special-needs children, but felt lost and alone when she tried to rely on secular support groups or well-meaning friends and family who had no experience in the special-needs community. If you can relate to Kelly’s story, Better Than OK: Finding Joy with Special- Needs Children is the hope-filled book you need today. In her down-to-earth way, Kelly shares the steps parents need to take to shift their focus away from the negatives of a diagnosis and towards acceptance, renewed faith, and joy. This book is a must-read for special-needs parents, but I would recommend it to any parent who needs a dose of wisdom and encouragement. — Jen Fulwiler, bestselling author and standup comic Sometimes special-needs parents need practical tips. Sometimes we need prayers. And sometimes we just need to know that we're not alone. ... This engaging new book is a true gift to the parents of kids with special needs. — Bonnie L. Engstrom, mom of eight and author of 61 Minutes to a Miracle This book is a gem for all special-needs parents, by turns funny, poignant, and always honest. It's the book I wish my parents could've had when I was diagnosed with cystic fibrosis in the 90s. — Emily M. DeArdo, author of Living Memento Mori: My Journey Along the Way of the Cross A truly important book for Catholic parents of special-needs children, and for family members, friends, and members of parish communities who want to better understand and more effectively support them. — Kendra Tierney, author of The Catholic All Year Compendium ABOUT THE AUTHOR Kelly Mantoan is the founder of Accepting the Gift, an online apostolate that provides resources and support to Catholic special-needs parents. She also blogs at This Ain’t the Lyceum about homeschooling, special-needs parenting, and Catholic family life. She enjoys creating useful posts and resources for her followers and speaking to groups about how God’s plan for our lives is often much better than anything we can imagine.