THE BLOG
05/13/2011 02:34 pm ET Updated Jul 13, 2011

The Unnatural Order

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.

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