I Can and I Wheel!

October is Spina Bifida Awareness month and I want to share with you a little information about Spina Bifida and the statistics that go along with it. Spina Bifida is a neural tube defect where the spinal cord does not close all the way. 

 Did you know that Spina Bifida is one of the most common types of birth defects?

Every year approximately 1,400 children are diagnosed with Spina Bifida. Another way to say it so that it is more clear this is basically 7 out of 10,000 live births. Spina Bifida occurs within the first 28 days of conception and actually sometimes can be diagnosed while the baby is still in utero, or in other words, still within the womb.

Have you ever been told your one in a million? When people say that to me, I can say that I am actually 1 in every 166,000. Because 1 in every 166,000 people born are diagnosed with Spina Bifida.

Spina Bifida is also known as the Snowflake Condition because no two people are affected the same way. I really appreciate this image from the Spina Bifida Association of
Western Pennsylvania. I have been part of the Spina Bifida association in one way or another since it was discovered that I had Spina Bifida at age 2. This image shows that there are individuals of all different levels of living that have Spina Bifida. Some individuals walk around without any visible differences, some use arm canes, crutches, braces, shoe lifts and others use wheelchairs, like me.

I think this image is important to share so that you can see the differences between the levels of function for individuals that have Spina Bifida.

Growing up I was a S5 and above level of function. I could walk and do everything a “normal” person could do without limitation.

When I was first paralyzed I was an L3. I could walk short distances with a walker. I could stand and pivot to transfer. I could also feel my legs and feet to some degree.

Following another tethered cord release surgery and further paralysis, I am now living as a T-10 incomplete paraplegic. I can not stand for more then 8 seconds, unless I am in a standing frame. I can not really feel my legs although some tingling has been occurring recently after 4 years of very limited ability to feel anything. I also can move my legs a little bit to lift them and I am working on regaining muscle and strength through my home physical therapy program.

There are many levels of function for people with Spina Bifida. We are all uniquely and wonderfully made.

I was born with Spina Bifida .

I have lived a very normal life. 

I was constantly told that I couldn’t and that gave me more reason to push and prove that I could, that nothing could stop me. 

I have Spina Bifida but it does not define who I am. 

I have learned so many wonderful things throughout my journey. 

I have Spina Bifida and it’s part of what makes me uniquely me. 

I am differently-able but also uniquely capable. 

I have Spina Bifida, please get to know me before you judge me. 

I believe that what we go through in life is what you also grow through. 

I have a survivor and thriver determination in me. 

I have embraced all that makes me who I am. 

I have an “I Can and I Wheel” attitude, because  for others they say “I can and I Will.”  I say I can and I Wheel because as long as I have my wheelchair, and my will-power I will always find a way. 

I will keep Climbing this Mountain one step at time! 

I Can and I Wheel, I will always find a way! 

I have Spina Bifida and I am determined to help others find Hope, Determination, and Motivation to keep fighting, keep trying, and never ever let anyone else determine your destination.