sacral agenesis

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You would think when you get older, you start to understand life a bit more. You think- the wiser you get – the more open you become. I’m still confused.. still trying to figure this thing called life out. Writing about my emotions makes it easier…and cheaper than a therapist.

I’m in my mid 20s and I’ve lived a dozen people’s lifestyles. I’ve been through the ringer — and I’m still tryin to figure out why I am here. Why do I have this life? Am I supposed to feel like this? What can I do to make a difference? Does my story help people?

From birth, I was diagnosed with a disease – sacral agenesis – which limited my mobility to walk freely. My spine didn’t form properly which deformed my entire lower body from hips to stomach to bladder to small intestine. When I came out of my biological mother’s belly, my legs were straight in the air.. the tenants in the hips had to be cut so my legs would lay flat. I can remember looking at photosgraphs as a baby == wires all over my body, my legs were wrapped in cloth and I just laid there – hopelessly fighting. Fighting for one last breath. Still fighting for that breath. I can’t ever catch a break.. I’m telling ya.

When I was a baby, my biological parents couldn’t take care of me. They couldn’t take care of themselves. My mother was a drug abuser and my father was a physical abuser. I can remember many terrible thoughts as a child.. even at the age of 3 years old. You DON’T forget these types of moments because these are the memories that change your life forever. And my life was about to change forever. After my youngest brother, Eric was born — things were different.

My two brothers and I were in the system.. officially. There were many families that wanted to adopt us, but not together. As a child in a wheelchair, I was considered the burden — the medical appointments, the bills, the attention — honestly; who would want to deal with this? My grand parents fought so hard to get the three of us together. After driving across the state of Michigan from Jackson to Traverse city for the court appointments, this moment was going to come true. My grandparents had 5 children of their own, including my biological mother. It was a strong fight in the court system…

I remember the very last time I saw my real parents. I sat in a conference room with my two brothers.. I was in my wheelchair, just sitting there. I looked down the hallways and my real mom was walking towards us. She pulled out three different packs of gum, Spearmint, BigRed and JuicyFruit. She passed the gum out to each of us, giving me the Juicy Fruit. Kissed our foreheads and left in tears.. I was so confused, what is happening – why is she leaving? Where are we? We were sitting in a court room in Jackson, MI…

I met my biological father when I was 19.. and I just can’t even respond to those emotions. I’m thankful that my life did not go down that direction. I would not be the person that I am today.

There are many moments when I reflect back… I reflect back too .. oh yah, I remember that moment because it changed me in this way…it changed my life forever.

Does anyone even ask how this happened to me? No — but I would be open arms if they asked me.

It’s a difficult, emotional rollercoaster – and I am still trying to find my ground.

I know that I have a lot of anger issues.. but you don’t have to fear me because my tongue is sharp. You have to look into my eyes and understand I have to be on my toes when you have this type of disease. You have to be on it 100% to a different level.