Spina Bifida: From Patient to Parent

Spina Bifida: From Patient to Parent

Spina Bifida is one of the most common birth defects, occurring in 1 out of 2,500 babies. Also termed a “cleft spine” or “open spine,” it affects the lower back and in more severe cases, the spinal cord. Carla Lohr was born with Spina Bifida Myelomeningocele and grew up wearing leg braces and struggling to fit in. She now finds herself in the unique position of being a parent to a son with Spina Bifida Occulta, a less severe form.

Lohr writes in the Huffington Post that she initially thought that her experience having lived with Spina Bifida would make her son’s diagnosis less of a challenge. She soon discovered that “being the patient is so much different—and easier—than it is to be the parent.”

Having already experienced living with Spina Bifida, Lohr understands the frustration of having people tell her what she cannot do. It is something that plays tug-of-war with her head and her heart as a parent, when she worries that her son will get hurt because of the weakness in his leg muscles and the fact that he is missing one vertebra and there are holes in the majority of the others.

When people told Lohr not to do something because they worried for her safety, she felt it was unfair that they were trying to set limits for her. When it came to her son going on a hunting trip with his dad, brother and uncle, Lohr had a different reaction. She was ashamed to admit that she knew she could scare him. She knew which buttons she could push to prevent him from going: “I just don’t want you to get hurt.” or “It’s going to be too much for you.” Instead, Lohr reminded herself that the common word in that way of thinking is “I.” She knew that life is full of risk, but her son would not know what he is capable of until he tries.

While he was climbing up the side of a mountain with the other men in his family, Lohr anxiously wondered how much pain her son was in and how his legs were holding up. When he did tell her about some pain in his leg muscles on the third day, Lohr caught herself before telling him to take it easy. She asked if the trip was worth it, and he did not hesitate before exclaiming “YES!”

“I firmly believe that, as parents, we hold more power than the disability does in the lives of our children. Most of the time, our children will believe us when we tell them they cannot do something or that they cannot have something they want,” Lohr writes. “Kids don’t know fear unless we teach it to them.” Allowing them to explore life on their own terms is a difficult thing to do as a parent, but Lohr hopes her story can be an example to other parents to help them develop a better understanding of their own children with special needs.

Read more of Carla Lohr’s story here.

Source: http://www.huffingtonpost.com/

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