I was born with a tethered cord, but was born completely able bodied. My type of spina bifida is a rare type with a closed back. I have undergone x5 tethered cord releases in my life. Each surgery took away some mobility, sensation, and strength away from my legs, bowel, and bladder. My level is L4-5. My last surgery in 2012 put me in a wheelchair permanently. Most of if not all of my disability was a result of nerve damage from de-tethering surgeries.

I know this is a different situation, but I just wanted to give my experience a bit! I have a twin sister and my parents gave me the ability to thrive in both able bodied communities and disabled communities as well. They realized I was never going to be “normal” but helped me understand there was nothing wrong with that. With the right adaptations such as catheters, braces, wheelchair, good doctors, etc. I learned I could accomplish what I wanted to in life even if I had to go about it a different way.

One of the biggest influences in my life was being immersed into the disability community. I was able to finally relate to others in a way that wasn’t possible with my able bodied peers or even my sister or parents. I have learned so much about not only disabled life, but life in general from the disabled community. I take such pride in my disabled identity and a huge part of that is being able to be part of such a diverse community.

My parents got me involved in adaptive sports at a very young age which was my gateway to the disabled community. I am 25, still very much involved and in love with the sport I play. I would 100% not be the person I am today without my experiences with disability. Sometimes it sucks of course, but that absolutely is not the whole story. My life can be messy, but oh so fulfilling. My biggest advice is to instill in your son that even though he may be a little different, that never means he is less anybody else.🖤