Resources

Several resources have helped me deal with the complex issues of SB since the diagnosis, as well as adjusting to the idea of disability in general.

Web sites:

The Spina Bifida Association has been invaluable in providing information on the condition, as well as a wealth of other resources and support.

The Facebook SB Parents Support Page is a great place to ask questions, seek support, and share your experiences with other parents of kids with SB.

Books:

Children with Spina Bifida: A Parent’s Guide, edited by Marlene Lutkenhoff, RN, MSN.

SB book

This book has been my bible since the diagnosis. It covers every aspect of the condition, from neurology, to urological and bowel concerns, orthopedic issues and physical therapy, to the educational and psychological development of your child. An invaluable go-to reference.

Changed by a Child: Companion Notes for Parents of a Child with a Disability, by Barbara Gill.

changed by a child

This book really helped me with the emotional aspects of having a child with a disability. Barbara Gill’s child has Down Syndrome, but here she speaks not only of her own child, but other parents’ experiences whose children have a range of disabilities. Reading this little gem of a book gave me some perspective, and I didn’t feel so alone.

The Able Life of Cody Jane, by Marly Cornell.

cody jane

A mother’s memoir of her daughter, Cody Jane, born with spina bifida in 1972. I needed to know I wasn’t alone on this journey, so I read this book not long after Lilly’s birth. I didn’t realize that Cody Jane eventually died of complications from SB at the age of 29 until the end of the book; not something you really need to hear at that tender stage, when you’re still full of fear and doubt. But Marly Cornell’s loving tribute to her spirited daughter still resonates with me.

 

 

 

 

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