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The Able Life of Cody Jane: Still Celebrating

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Christopher & Dana Reeve Foundation Review January 18, 2012
New in the Paralysis Resource Center (PRC) Library . . . by Diane Bligh
The Able Life of Cody Jane by Marly Cornell. LightaLight Publications, 2011

In this inspirational book, Marly Cornell tells the story of her exceptional daughter Cody. Although she was born with spina bifida, Cody Jane Ahlburg’s life was not defined by her birth defect. Rather, what was most noteworthy about Cody was the fact that she was able to teach many life lessons to others. Through the examples of her independence and innate set of values that are chronicled in this book, the reader will put to rest any preconceived notions about limitations. The message is instead about going forward and focusing on abilities, not disabilities. The author also shares strategies about survival and having success in life that would be pertinent to anyone dealing with difficult circumstances.

Minnesota Literature Examiner June 14, 2011 Review
From the Shelf: by Richard Greelis
The Able Life of Cody Jane, (2011) by Marly Cornell

Whenever one asks an expectant mother or father what sex they prefer for their baby the usual reply is that they don’t care about the sex, they just want a healthy baby. That simple wish is usually granted. In Marly Cornell’s book, The Able Life of Cody Jane, (2011) the author was told that her newborn daughter had spina bifida and that she may not survive. Doctors advised the first-time-mother that her infant daughter would need surgery to live, but added that electing not to have the surgery was a viable option as well.

The author didn’t need any time to consider her decision. Her daughter would live and thrive. The author’s world would never be the same, but she would never look back, and would never regret her choice. What follows is a joyful, painful, thoughtful chronology of the able life of Cody Jane, who experienced forty surgeries before her death at age thirty-two. For anyone who has had even one surgery, bravery can be a scarce commodity. Cody had an ample reserve of bravery and a contagious spirit for life that she shared with the author, her three dads, and her friends.

Cornell tells the very personal story of her daughter’s life with the compassion of a mother, and the force of an advocate. The record of Cody’s medical history seems daunting, but mother and daughter endured and supported one another through more trauma than most families would experience in several lifetimes.

As author and mother, Cornell’s writing is a combination of motherly observations, emotions and well researched exposition. The facts of living a life with this disability don’t often come with cures and happy endings, and this book is no exception. By touching on issues such as boyfriends, bowel movements, romance, travel, sex and spirituality the reader gets a feel for some of the issues faced by disabled children and adults. By touching on issues of love, sacrifice, heartache, and haunting dread, the reader understands some of the issues faced by parents of disabled children.

This book is a must read for anyone who would benefit from a better understanding of the issues faced by persons with disabilities. (Basically, everyone.)

Nonfiction Review: The Able Life of Cody Jane: Still Celebrating
April 4, 2011 Publishers Weekly.
As a young woman, Cornell (Walks on the Beach with Angie co-written with Don Warner) experienced the horror of hearing, moments after giving birth to a baby, that her daughter “might not live.” Cody Jane had spina bifida, a congenital birth defect that can lead to infection, paralysis, brain damage, or death. But Cornell had looked into her newborn’s eyes, had seen that, “whatever physical problems she might have, she was fine,” and was determined to be a good mother and fought for Cody Jane on numerous fronts, including advocating for the right doctors and surgeries, and ensuring that her daughter wasn’t forced into a school for mentally handicapped children. Much space is devoted to the medical and psychological reality of mothering someone living with a shunt, but what also emerges is Cody Jane’s growth into a unique, funny, and independent young woman involved in a romantic relationship (Cornell doesn’t gloss over the fact that her own relationships, including two marriages, crumbled; Cody Jane’s biological father left to become a monk). Cornell couldn’t do everything for and be everything to Cody Jane, and her guilt is apparent. Her perspective on raising a child with severe disabilities (which includes reminders of the importance of counseling) is important, and stands as a loving tribute. Published with the support of the Spina Bifida Association. (May)


HUFFPOST HEALTH May 13, 2011
The Unnatural Order by Cheryl Wills

In the natural order of life, children outlive their parents. But when the order is reversed, parents can be caught between the bitterness of their loss and the sweet celebration of a life. Marly Cornell is firmly committed to the celebration. When her daughter Cody was born with the most severe form of spina bifida, doctors told the young mother that if Cody survived at all, she might be paralyzed and/or brain damaged. But Marly experienced something different when she looked down at the newborn. She remembers, “Somehow as I looked at those wide eyes and felt the grip of her little fingers around my thumb, I knew she was fine — no matter what else might be wrong.”

Eight infants a day in the U.S. are born with spina bifida (166,000 Americans, according to the Spina Bifida Association) and it remains the most common permanently disabling birth defect.

As it turned out, Cody did survive but there were plenty of difficulties along the way — dozens of surgeries, a wheelchair for her mobility and various changes in her family — but her mother never changed her mind — Cody was fine, more than fine. Cornell treasures her daughter’s joyride of a life in a new book called The Able Life of Cody Jane: Still Celebrating (LightaLight Publications, May 2011). She describes a person who was, from her earliest years, a sensitive kid with a droll sense of humor who did not allow her physical limitations to define her or get in the way of her fun. A staunch defender of the vulnerable, Cody stepped up to advocate for others who were treated unfairly, and for herself when necessary — and, as every person with a disability knows, that can be a daily occurrence. The chemistry between mother and daughter pops off the page as their close relationship grows into an enduring friendship that balances Cody’s adult life of independence with inevitable dependencies.

Marly’s eyes light up as she explains, “Stories about people with disabilities or chronic medical conditions are framed so often in tragedy and pity instead of recognizing the powerful spirit, joy and humor that is often part of daily life for so many people who confront difficult and genuine barriers.”

Cody died in 2004 at 32 years old, but she still got the last laugh. Marly reflects, “Looking back, it seemed like Cody had a tough life in many ways, but that was not how we experienced it at the time. That wasn’t how either of us felt. We laughed every day and sometimes more when situations were scariest.”

It’s a safe bet that Cody, ever the witty one, is yukking it up with the angels.

The Able Life of Cody Jane was published with the support of the Spina Bifida Association. For more about this, go to www.theablelife.com.

The St. Paul Pioneer Press Review; May 22, 2011
They overcame much and gave back even more
By Mary Ann Grossmann
Updated: 05/20/2011 10:30:31 AM CDT

Marly Cornell has been my heroine for years because of her tireless work with the Animal Rights Coalition. After reading her new memoir, “The Able Life of Cody Jane,” I learned she’s a heroine as a mother, too.

Marly probably won’t want me to say that; she wants the focus to be on her daughter, Cody, who was born with severe spina bifida.

Although spina bifida is one of the most common permanently disabling birth defects, Marly writes: “Cody’s life demonstrates that disability does not have to be associated with neediness, decline and debilitation or engender pity.”

That’s for sure. Cody lived a full life before she died in her early 30s in 2004. She was whipping around the house in her wheelchair by the time she was 4, had crushes on boys as a kid, kept her own apartment when she was an adult and entered into a life partnership with a man who also uses a wheelchair. She traveled, advocated for others and overcame barriers and bias.

Not that Cody’s road was easy, nor was her mother’s. Cody spent big chunks of her life in the hospital recovering from dozens of surgeries. Some of her physical problems were caused by malfunctioning of a shunt implanted in her head to take care of fluid buildup.

Through every operation, Cody could count on her mother to be there for pre-surgery hand-holding, nighttime talks and kisses. She also had support from her father, Tad, who became a monk, and two stepfathers. (She delighted in having “three dads.”)

Cornell, who lives in St. Louis Park, is a graceful writer who co-authored “Walks on the Beach With Angie,” winner of two Midwest Book Awards.

You don’t have to know a thing about living with a disability to be caught up in this memoir, which begins with Cody’s birth in 1972 in Philadelphia.

Marly and her husband had never heard of spina bifida, a diagnosis made after doctors found “a dime-sized pink membrane” on the middle of their baby’s lower back. The attending physician thought she might die, but she survived, although she had no feeling in her lower body.

Cody’s young parents quickly learned the intricacies of caring for their baby. For instance, they had to press on her lower abdomen to empty her bladder completely with each diaper change to prevent buildup of bacteria in her urine.

During Cody’s childhood, Marly somehow found time and energy to complete post-graduate work in psychology. She spent her career in the corporate nonprofit sector in health care, behavioral services, mental health law and physician recruitment. But she was always at Cody’s side when an emergency call came.

Marly writes candidly about her feelings, including some stressful months in 1988: “I woke up on my thirty-eighth birthday feeling old, stiff, and achy…In the ten weeks since our Christmas trip east, Cody had triumphed over breathing arrests, five brain surgeries, blindness, and gripping fear. Faith won out and I was brought to my knees, grateful for every miracle …”

At one point, Marly was in Europe when Cody was hospitalized. Marly was frantic to get home to her daughter, and she agonized when the plane was delayed. In the airplane bathroom, Marly closed her eyes and concentrated on sending a mental image to Cody, telling her to not be afraid, that God was handling everything: “The moment I formed those thoughts, a crescendo of angel shivers flowed over me in waves. I was so grateful for this vivid affirmation I began to cry.”

One of the high points of the book, and probably of Cody’s life, was her commitment ceremony with John, which was as close to a wedding as they could get. (Marly explains that most people with disabilities do not legally marry because of issues related to finances and disability benefits.)

Their ceremony was attended by friends and relatives from five states who saw the couple “wheeled through doors on either side of an altar decorated with flowers and candles.” Cody wore a long dress with burgundy flower buds in her headband that matched the tiny beads on her bodice.

Cody’s health deteriorated after she experienced physical and mental side effects caused by a new drug. She faced two surgeries, including one for bladder stones, with the hope that they would help her. But when she fell into a coma, her family asked that life support be removed. Marly felt that her daughter had “danced away” to another place.

After Cody’s death, Marly left corporate life to become a freelance writer, editor and artist. She is active in social justice work and advocates for organizations that support and encourage children, adults and families living with disabilities and/or chronic medical conditions.

“Cody did not see her life as one of suffering,” Marly writes. “It would be disrespectful of me to reflect back upon it that way. I admired her faith, her fighting spirit, her pure heart and droll sense of humor in any circumstance…I mostly remember laughter, her friendship and the magnificent feeling of being loved by her.”

“The Able Life of Cody Jane” is supported by the Spina Bifida Association. For information, go to www.spinabifidaassociation.org.

COMMENTS FROM READERS:

7.16.14

I am twenty years old and I, too, was born with spina bifida myelomeningocele. Having SB has been rough over the years, but I’ve always told people who feel sorry for me not to because I’m the way God made me and there’s nothing I can do about it. I don’t sit around feeling sorry for myself because I know that there are people that are way worse off than what I am. I found your book online in 2012 when I was working on one of many research papers I’ve done on SB. My great aunt surprised me by ordering my own copy, and I’ve read it twice. Both times I’ve read it, it’s been hard for me to put it down to focus on other things that have needed done. I noticed a lot of similarities between Cody and myself, especially when it comes to boys. I am so glad to have found your book to help me through some difficult times in my life. I have been raised by a single mom since I was four and just moved out into my own apartment back in November. Your book has inspired me in so many ways to be more independent and stronger.
~Casey C., Kentucky

5.25.14

Greetings Marly,
Last night I finished The Able Life of Cody Jane. What a powerfully moving book! Thank you for giving me the opportunity to get to know you, Cody, Ernie, and all your remarkable family members. The book is so beautifully and honestly written that I found it very hard to put it down to tend to my life. I can only begin to comprehend your life with Cody, the sacrifices, the fears, but most of all your determination to give her the best life possible. Congratulations. In the future I will certainly “see” people with disabilities in a very different way.
~Marcia W., Iowa

5.25.13

I just finished reading “The Able Life of Cody Jane.” What an amazing story of a life lived well in spite of severe physical challenges and of a family’s sacrifices and struggles to secure the best possible quality of life for her. Thanks so much for sharing Cody’s story.
~Karen B., St. Louis, MO

3.4.13

Marly, When I was only a few pages into your book, I knew I needed to write you…
My daughter, 9 months, has spina bifida, and though it not as bad as Cody’s case, your story of Cody’s life still touched me in ways I didn’t think possible. Your hopes and fears are those that I already know well, facing wounds that wouldn’t heal and a Chiari that seemed to stun her doctors, yet she showed no symptoms. Sitting in waiting rooms and waiting for test results, you wrote what I felt; reading your book brought tears to my eyes several times; I’m not the only mom that worries with each fever or fights when I know something is wrong, yet doctors tell me everything is “normal.”

Growing up with a father with an amputated leg, it broke my heart to think of what Jillian could be facing as she grew up, knowing many of the difficulties she would face, but we hoped and prayed with all of our might that everything would be okay. We prepared ourselves for a life with wheelchairs and crutches, but someone was looking out for her, and her doctors think she will be able to walk and lead a pretty normal life. She is already showing us her strong will and determination. If she wants a toy or a snack, she will scoot with all her might to get to it, she’s got more spunk than I could ever hope for and, as I like to say, is braver than I could ever be. She is already showing her doctors, and her spina bifida, that nothing will hold her back! I can only hope that she remains as determined as Cody—she is such an inspiration. Growing up with so many roadblocks she (and you, and your family) fought for all she deserved and didn’t let anyone step in her way.

My heart broke as I neared the end of the book, but knowing that Cody never again has to face another surgery and can run and dance and do anything without limitation I feel relief for her. Being the mother of a special needs child puts everything into perspective. What many people view as no big deal, suddenly really is a HUGE deal, and every milestone that Jillian hits I treasure and celebrate with her, just as a treasure every moment with her. I hope that as she grows we can always have an open and honest relationship like yours, one where she can come to me about life’s many challenges; cathing and bowel issues aren’t really something you can talk to your girlfriends about! :-)

I reread this and feel like it’s a bit of a ramble, but I just don’t know how to fully express how grateful I am for your book—it showed me that with determination anything is possible for Jillian, and that as a parent, there are others out there that have been through this, know what it’s like, and that by taking it day by day we can make it through each obstacle we are given. Thank you, and Thank you, Cody!
~Anne Brodsky, Saratoga Springs, NY

9.29.12

Dear Marly,
I just finished reading your book about your sweet daughter. I smiled, laughed and experienced awe as I made my way through your life together. Thank you for sharing your family’s story with me. What a treasure! My daughter is a special ed teacher and as soon as she saw your book, she asked me if she could read it when I finished it. I have another dear friend whose niece was born with spina bifida, so I plan to share your story with her, as well. Ernie sounds a great deal like my own good and kind husband and I’m thankful to the Lord that you and Cody have had the privilege to be cared for by such a person. :)
I’m so sorry you lost your darling girl, but again, thank you for sharing your beautiful story with me. Hugs.
~Lori M, Driggs, Idaho

6.12.12

Dear Marly,
I wish I could give you the biggest hug right now. I just finished your beautiful book (laughing and crying all the way) about your life with Cody Jane, and feel so moved, I hardly know where I am, but I know I’m a better person for having read this.
The great love you and Cody “grew” in one another is the kind that endures what most of us could never imagine enduring, and is blessed and emboldened by it. You are incredibly generous to share your powerful, honest & exhilarating love story with the rest of us. Wish I could express it better, but at the moment, you’ve taken my breath away.
Despite the many disappointments and heartbreaks that were part of your & Cody’s story, what I feel more than anything else after reading The Able Life of Cody Jane is deep happiness. Thank you so very much.
~M. Gallivan, Friday Harbor, WA

4.24.12

Marly
I received a Kindle as a gift a while back. Not being technologically inclined, I was ignoring it. When I read about your book, I went to my Kindle and downloaded my first book: The Able Life of Cody Jane. I have been reading a little each day—trying not to read it all in one sitting. It is a magnificent story. I love it. Absolutely love it. I feel like I am watching a very captivating movie. I feel like I am right there and getting to know you and Cody. You are a master story teller. And what a story—right now I am at the part when she is getting ready for surgery #20. It makes me realize how lucky we have been with my son’s shunt. It also makes me realize that we should have a local neurosurgeon—we only have the one in another state. Yikes. Thank you for sharing your story in this book. Wow….back to Cody.
[Later]—I have to share this with you. Your book gave me the courage to go in today and sign up my son [age 7] for summer school. Up until now I have avoided summer activities—too many unknown factors—safety, possible ridicule from other kids. But reading about all of Cody’s summer activities really made me think about this summer. I talked with his principal, who secured para support for him in summer school. The classes are in a different school, with kids who don’t know him, but I guess we’ll cross that bridge when we get to it.
My son loves getting out and doing things, learning, being with other kids. He will be very excited to do this. He needs experiences like this.
Thanks for the inspiration. I am very protective of him, but I have to support his independence. You gave me a much needed reminder.
~Margaret Meder, author of Uncommon Beauty: Crisis Parenting from Day One
See her blog at http://www.uncommonbeautycrisisparenting.com/

4.21.12

Hello Ms. Cornell,
I recently finished reading your wonderful book. Thank you for sharing such a wonderful story.
I am a pediatric nurse and I work at Texas Scottish Rite Hospital for Children in Dallas, Texas. The hospital treats a variety of orthopedic conditions and we also have a very large population of children born with spina bifida. I have cared for many of these children as they learn to become independent, and as they heal from wounds caused by skin breakdown.
As I read your book, I saw many similarities in Cody Jane and the children I care for at Scottish Rite. I have found that these children tend to be my favorite patient’s because they are the most outgoing, energetic, and positive of all of the hospitalized children.
Cody Jane’s story touched my heart, and I wanted to thank you again for writing such a wonderful book, I am so sorry for your loss.
~SL, RN

9.1.11

I am a 24-year-old graduate student and I have spina bifida. I loved The Able Life of Cody Jane. I found it to be so inspiring, comforting…I felt very “at home” reading about your life as well as Cody’s. So many similarities, but also many differences. My mom is currently reading your book, and I know she will feel the same way about it. Even though it is undeniable that there are more resources, books, and outlets available today for individuals with Spina Bifida than there were in the past, I think it is still accurate to say there are not enough, and I would love to see more. So much that is available is so clinical, and in my opinion, many times inaccurate—not speaking to the trueness of what it is like to live with Spina Bifida. Your book really achieved that, and I hope it inspires more people to write. I think you’ve paved the way for more people to talk openly and poignantly about the realities of living an amazing life with Spina Bifida, and I think that is a spectacular gift to have given to the Spina Bifida community (and world) as a whole. I’m so thankful for Cody Jane’s life and your ability to articulate your experiences as well as hers so clearly. I don’t doubt that reading your book has been as meaningful for others as it has for me.
~Sarah Mueller
Wauwatosa, Wisconsin

6.29.11 Fellow Mom Thanks You

Hi Marly,
I just finished your inspiring book about Cody. I couldn’t put it down! My friend from MN sent it to me by mail a few weeks ago and I finally found some time late last week to pick it up. Our 4 year old daughter has Spina Bifida (Myelo) and I was fascinated not only by Cody’s resilience and joy of life, but also by your natural instincts as her mother at a time when there wasn’t as much information and acceptance as we now enjoy. Thanks to pioneers like Cody and you, I am now able to research and connect with others to figure out how to wind our way through this ever-changing maze. I’ve felt like we have been “on the job” training since we found out at my 20-week ultrasound and you reminded me once again to slow down and enjoy the special moments in every day. Your stories about Cody truly resonated with me because I could see some of [my daughter's] characteristics in your descriptions of her personality and emotions. And I’m so hopeful about our future together because you allowed me a precious glimpse into your lives as Cody grew up. This was perhaps the most touching part for me as the mom of a young child. Just reading how you both faced and overcame those many challenges gives me added courage. I sometimes feel acutely aware of time marching on when my instincts are telling me something just isn’t right. A small part of me wants to slow it down so I can enjoy just a little more time before the next crisis occurs. But inevitably, the crisis does arrive and we somehow pick our way through and try to get back to “normal” as soon as possible.
On behalf of my family, thank you a thousand times over! I plan to read this book again and again when I need a good example to follow. I plan to purchase several copies to pass along to others!
God Bless You, Marly. I’m SURE Cody is smiling and dancing in Heaven!
With kind regards,
~Joanne [last name deleted per request]
Chesterfield MI

6.1.11

Because of this book I got to know Cody Jane. She was a remarkable young woman. While I never met her personally, she was the kind of individual I looked to recruit when I was in management positions in government. She and I would have made a great team at the Minnesota Department of Human Services. When some legislators were proposing drastic cuts in the human services budget, I can see Cody Jane letting them know, in no uncertain terms, the issues faced by persons with disabilities. My thanks to her mother Marly for bringing to life this incredible human being. She will forever be an inspiration.
~Len Levine, Leonard W. Levine & Associates, Inc., former Commissioner,
Minnesota Department of Human Services www.levinecanhelp.com

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