My name is Laura. I have Spina Bifida at the L4-5 level, Myelomeningocele. Growing up with Spina Bifida had it’s ups and downs. When I was small, I wanted to be Janet Jackson. She was the coolest person I’ve ever seen on tv. While my views changed as I grew into who I am today, I maintain a love of music and singing.
I have one sister. I’m the daughter of a soldier and Korean immigrant. Life was always modest, to say the least. Growing up with my condition was challenging, but I always held an outlook of "I can do what you do, just differently." As a small child, I mostly crawled to get around. When I got older, I got leg braces. I started off with a walker and eventually moved to crutches. Years after, I eventually got a wheel chair, but my family mostly had me use my braces. There were pros and cons to using both. I think if I could do it again and choose, I’d do both, alternating days.
Even with all of life’s challenges, life always moves on. You might as well move with it and make the most out of it. My advice to parents of kids with Spina Bifida would be: always do your research, involve your kid(s) in adaptive sports, doctors don’t know everything, don’t let doctors pressure you into making decisions for your child without due diligence, join some kind of group where you can get advice from PEOPLE WITH SPINA BIFIDA and not just other parents, teach your kid to care for themselves as early as they’re capable, remember they’re still just regular people, and one day they will hit puberty just like all their friends.
Don’t hold on too tight. They’re gonna fall, just like any other kid. Falling is a good thing and shapes their experience. Just hug them, and throw them back into the world. Just remember to teach them how to be strong, and they will be fine, if not better than you thought. Lastly, don’t dream for them. Encourage their imaginations and they will figure out how along the way.
My advice to those of us who have Spina Bifida is to stay social. Be positive whenever you can. I know sometimes that gets hard. Pursue those things that make you happy. Be active, even if it’s a walk around the block or window shopping in your fave store. Don’t let people limit you by their ideal of your disability. Speak up for yourself and research resources. There’s tons out there that vary state-to-state. Take advantage of them. Lastly, great friends make any journey better. So keep a few of those along the way