On my mind

I love TLC Little People Big World show. At first I was not sure if it was going to be one of those sappy TV show that were all about feeling bad about for them. The show was great and I really like watching it. While none of them have CP its all about being normal and getting acceptance.

After watching the latest episode I started to think. None of the attractions at the farm see to be accessible for people like me. Even Matt (the dad) has trouble getting around. In a few shows someone carried him down the stairs. Come on if the owner can’t get around then he should start looking at making the farm more accessible of everyone. I mean he even has his own company that makes items to assist short stature people in hotels.

It makes you think.

History with Toxins

I have had many treatment for the spasticity of my muscles. My brain sends signals to my ankle and heal cord muscles to flex. Over the years my orthopedic surgeon has tried may less invasive measures to keep from having sugary. When I was little like five years old I started a series of walking cast to help loosen my muscles and keep them from twisting my feet. After a few years my doctor mentioned a new option for my legs. Having Botox injected into my legs. The Botox acts like a block in the muscles to make them unresponsive to the neurons telling them to flex.

I had Botox injected into 3 muscle groups. It was very painful and was hard. When it was over it was weird I could see my leg but it felt funny and sometimes I could not feel it moving. I took a few days to get used to it. It wore off in about 6weeks but it gave me a change to work on many goal in PT and helped me over all.

Wishing for an Invitation

For once I wish I would be invited to someone’s house. I feel like I’m always the one making plans. When I was little people came over because of mobility issues and the fact that I could be just a normal girl at my house. As I got older I wish I was invited over for play dates. More often or not I was only invited because of my twin sister. This worked out ok because I got to go to someone’s house and they realized that I was just another kid. People were afraid to take a chance on me and I am great full for those who to the chance. I still have days where I wish I got an invite but planning a get together works out well because I pick activities I can do. Things were crappy for a number of years but I feel like I finally turned a corner.

Identity

My disability is not me but it is such a big part of my identity. It’s a gift and curse. I hate that some people only see my disability and expect so little of me. At the same time I love shocking them and showing them what I can do. Its great and it hurts at the same time. I’m normal and it sucks that people do not see what I can do but what they think it can’t do. Some times it bugs me a lot and other times I just don’t have the energy. Advocating for my self is tiring but its something I have to do not just for my self but for the other people that come after me.

Dance Marathon

Here is what Twin and I did last weekend. Twin danced and I was a moraler for Dance Marathon which is a national organization. We are very tired. The event went from 10am on Saturday March 24 – 6pm on Sunday the 25. I got a break from 5pm – 10pm on Saturday and again from 9-10am on Sunday.

The *** University Dance Marathon Steering Committee, in conjunction with Children's Miracle Network, held their 12th Annual Dance Marathon at the Student Recreation Center.
The mission of the #$SU Dance Marathon is to hold a 32-hour fundraising event that benefits the Mercy Children's Hospital. The funds raised will provide research, treatment, equipment and education to children from Northwest Ohio who suffer from terminal illnesses, serious disease, birth defects and severe trauma. Dancers like Twin were on their feet for 32 hours only sitting for 2 meals and during bathroom brakes. My job was to help the dancers and keep them from being board. I had a blast it was one big party