When Bridget Moore left Ireland in 1865, she never suspected that along with her trunk and rosary beads, she was bringing Duchenne Muscular Dystrophy to New York City. It wasn't until Bridget was a grandmother, one who had buried four of her grandsons, that she realized she'd brought MD to the States, a disease that would haunt her family for generations. Years later, her great-grandchildren grew up under the elevated trains of Jackson Heights, Queens—and one of them was Christine Kehl O'Hagan, the author of this moving and insightful memoir.
Christine, her sister Pam, and their brother Richie played in the streets and attended mass every Sunday. But Richie had trouble walking. By the time he was diagnosed with muscular dystrophy, Christine learned that two of her mother's brothers—uncles she'd never known about—had died of MD. Christine eventually married and had a healthy son. But one day she saw her second boy, Jamie, struggle to climb onto the sch...
Customer Reviews:
0 of 0 found this review helpful:
Amazingly well written book--absolutely a necessary read for anyone living with special needs children, 2006-05-03
What an amazingly well written book! I have never read a more true account of what it means to be the parent of a child with special needs. The Kehl family has been marked for generations by muscular dystrophy. Anyone who wants to understand how it really feels to deal with such a legacy should read this. The power of denial was so powerfully shown by how long the author was able to keep up the idea that her son was "just having trouble with the bus stairs", and when she finally did get a diagnosis, I found it the most amazing analogy to say that being able to handle a child with special needs is like deciding you are going camping, knowing nothing about it and having none of the equipment, and then finding your closet is filled with a tent, campfire dishes, flashlights, etc---you already have what you need to handle it, and you never knew. The effects of a child's sickness on a strong marriage are also so truthfully shown here---how you can blame and yell and say horrible things and still love each other and the child so much. It is hard to believe this author has not written many best selling books already, as this book is just astonishing. It came to me at a time when I really needed it, when I am dealing with the possibility of a serious diagnosis for my child, and I am so thankful it did.
1 of 2 found this review helpful:
Close Knit Ties, 2005-06-17
Christine Kehl O'Hagan, born in Queens in 1950 carried a tragic secret. Duchenne's Muscular Dystophy (DMD), which is an X-linked trait runs rampant throughout her family. DMD claimed several male relatives throughout the generations in her family. Females are born carriers of this tragic condition and every male born in a family where this trait is present is at risk for developing it at some point in life.
As much as I enjoyed this book, there were two things that irked me: the constant references to sneakers and being Irish. Even the tablecloth was made of Irish lace! The O'Hagans' beagle was named Finney! Sharing the traditions of Irish heritage was all well and good, but the constant references to being Irish did seem a bit excessive at points. As for the sneakers, the symbol of mobility and childhood play and sports, the message could not have been made more plain.
Christine's younger brother Richie Jr., born in 1957 showed signs of MDM early. Poor coordination and balance and difficulty managing stairs were the tip-offs to his having MDM. By 1966 Richie was no longer able to walk and remained confined to a wheelchair for the remainder of his life. He died in July of 1979 at the age of 22.
Some very touching anecdotes are shared; in 1961, Christine, then 11 would take her 4-year-old brother to the neighborhood church and pray for him. That was really heartwarming. I also liked it when the neighborhood boys took Richie under their wing and would hang off the back of his wheelchair, including him in their games. I loved it when Richie would sing the Beatles' songs from 1967's "Sgt. Pepper" in 1967-68. The Kehl children's Aunt Nelly's bizarrely quaint expressions involving hygiene and bathroom usage are sure to bring a smile; the unfamiliar term "kitty murphies" was made quite clear in the context and feline reference.
Christine and younger sister Pam (born 1953) both had sons with DMD. Christine's younger son, Jamie was diagnosed at age 7 on October 16, 1980. He was tested in the hospital for DMD in December of 1980. Her older son, born in August of 1971 did not inherit the condition. Sadly, Jamie died on May 20, 1998 at the age of 24, one year after his maternal grandmother died.
Pam's two sons, born in 1976 and 1977 also had DMD which ultimately confined them to wheelchairs as well. I especially liked the descriptions of Queens in the 1950s and 1960s and the parts about family interaction and the way Jamie's brother went to bat for him and that they owned a beagle, although I disagree with the author's finding that the hound was homely. Beagles are beautiful little hounds. Luckily, during the roughest points and bleakest moments the family stayed together. Christine's friends, Ruth and Tony sounded like genuine angels.
The book ends on an upbeat note with the 1999 birth of Christine's granddaughter, Alanna Nicole.
1 of 1 found this review helpful:
The Book of Kehls, 2005-02-18
A book you can't put down - that's the way I would describe Mrs. O'Hagan's The Book of Kehls. You get the feeling that you grew up with her in the way she draws the reader into the most intimate part of her life in dealing with her parents, her siblings and her disabled son, Jamie. This book is about an Irish family and how they deal with a disease that affected everyone in their family. It is about a mother who is above all human, unashamedly sharing her emotions that run the gamut from being frustrated to being hilarious. Above all, this book shows Mrs. O'Hagan's strength and unending love in letting her son know that it is okay to stop fighting and to find peace. A must read.
0 of 0 found this review helpful:
A Work of the heart...., 2005-01-28
This book is not your ordinary story, it is the blood, sweat and tears of a brave family suffering from generation to generation with Muscular Dystrophy. Christine O'Hagan should be proud of how elloquently she is able to share her losses from her brother Richie to the ultimate loss of her own precious son Jamie.
She shares so much in this book, you can't help but wonder how she was able to sit all those long hours and re-live so much sorrow. But don't be fooled. Christine knows just how to tell her story with her very fine sense of humor which has always been
her strong tool through her struggles.A book to read not only for the journey of her life, but also for what it gives the reader.... The true meaning of what live is about. God Bless you Chrissie.
3 of 3 found this review helpful:
Honestly and bravely written!!!!, 2005-01-05
The Book Of Kehls is a memoir that is honestly and bravely written. The author probes her deepest feelings about coming from a family smitten with Duchenne Muscular Dystrophy and shares her candid insights with depth as well as with humor.
The book also provides education about the disease to those that are unfamiliar with the ravaging toll it takes on its victims and their families. It helps the reader to understand the horror that living with this disease can bring, and provides insight into how families cope both effectively and ineffectively with chronic illness.
Ms. O'Hagan also gives us a glimpse of the past as she shares her childhood growing up in the 50's and 60's and in many instances with great nostalgia. This was quite enjoyable to read.
The layout of the book is very well created and the themes excellently threaded throughout. The beginning is extremely powerful as is the ending, leaving the reader to ponder life, its personal meaning and the necessity of gratitude for what many of us take for granted.
For me, the book was a quick read because it was so interesting that I couldn't stop......The cover was a beautiful, the title wonderful and the picture of the children so poignantly presented. I highly recommend The Book of Kehls for its message of love and spirit.
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