the woman with a half body

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Rose Marie was born with a rare genetic disorder, known as Sacral Agenesis. These two disabilities are very similar and very slightly. She legs were severely deformed with the feet pointing in opposite directions. This was not painful for her because she had no feeling in them. When you are an active child, at age two, your legs can become a danger to you. At this young age her parents consulted with several doctors, surgeons and specialists to find the best coarse of action for the useless legs. The big question weighing on her parents mind. Do we amputate? Or not? We could have her fitted into a wheelchair. What do you think they decided to do? There insightful decision allows she to lead a fairly normal childhood.

She grew up living in Pueblo, CO with her parents and younger brother Jim, who is mentally challenged. Jim and she grew up living in a small ranch style house her mother inherited from her grandfathers passing in the late 70’s.

She played with the neighborhood kids just like every other kid on the block. She main mode of transportation was her skateboard. She was able to keep up with the kids while they would run up and down the block and She was able to keep pace with them as She rode her skateboard. They found hours of entertainment in playing hide n seek, dodge ball or even playing some street football. When kids would ask about her disability, or even when the adults become curious and they would ask about her physical condition. Immediately she would describe her physical condition in a way she felt was the best visual. “If you take a Barbie doll and remove her lets, the region your left with is the exact same region she have. She have all the female working organs/parts.” Usually kids and adults walked away with a better understanding of her disability. School for her was not as pleasant as being in the neighborhood. When she started attending school, in the late 70’s the school officials were mainstreaming disabled children with normal children (administrative talk). This was the start of the ADA (Americans with Disability Act) try to place a disabled child into and have them look like, talk like, and function like a normal child as if they were no different. She was forced to physically look like everyone else. What she mean is her parent and she were told she needed to get fitted with prosthesis (artificial legs). This would allow her to look just as tall and also look just like everyone else meaning having all limbs ( two arms, two legs), She became submissive with the school administrators during her middle school years but became a voice when she reached High School. She was told after the first few weeks of attending high school she was eventually told come to class however she felt comfortable. She was most comfortable with her main mode of transportation being her skateboard.
Also as a teenager, she found she had a great passion for cars, mostly for the mid 1970’s muscle cars. she should of known automotive was in her blood, her parents would tell she stories of them losing her and finding her playing inside her dad’s toolbox in the garage at the young age of three. As you may suspect her parents continued to support she in her automotive passion by purchasing her first muscle car a 1974 Chevy Camaro at the age of sixteen.
As a young adult, she continued with her passion for automotive and enrolled in automotive classes to earn her bachelors degree in Automotive Management. She worked at a local automotive repair shop for a few years. This is the place where she met her husband ‘Dave’ in 1997. Our friendship blossomed into a wonderful relationship. They married in 1999 and in that same year they had our son Luke. She pregnancy was extraordinary and ground breaking, no one with Sacral Agenesis had carried a baby to nearly full term nor gave birth to a normal child. On January 6th 1999, Luke Ryan Siggins was born.
Even now nearly thirteen years later, she remain the only person who has carried and given birth to a normal child. She not only have done this once but twice and both pregnancies were documented. The reason the pregnancies were so extraordinary and groundbreaking no one has done this. The medical world knew she was laying her life on the line. Dave and she spoke with a Neo Natal Specialist, Dr Robert Wolfson, who she believe is the best specialist. He immediately explained to us if they continue to move forward with this pregnancy you could die. The main concerns were her lungs could be compressed, as the baby was likely to grow up the way because of my short stature. The other concern was how she would tolerate a caesarean delivery, because the baby was lying transversely She would be having to be opened across the top, a true 19th century caesarean delivery. She made sure through out the pregnancy everyone from the medical to personal individuals she knew understood if complications would arise and a choice had to be made in a desperate situation the child would be chosen
As Luke turned three years old her life experienced a terrible tragedy. They found out that her mom was diagnosed with terminal cancer near the holidays and after they celebrated Luke’s third birthday her mother passed away January 16th 2002. mother was the glue that held everyone together in our family and with her passing I would now have to try and fill some really big shoes.
Taking care of my dad and brother along with having my own family I began to feel stretched a little thin. Dave and I made a decision and we moved into my small ranch style family home. The house had many years of wear and tear from now having two going on three generations living inside the walls.
My brother and I had many conflicts and arguments and we finally found a program who could help him become an independent person and live with others just like him.
While I thought life would never get better, Dave and I found out we were expecting our second child. It was a surprise to us since the last time I was pregnant was nearly seven years ago. We felt it was a blessing from heaven since my mother and I talked about us having a little girl someday. I promised her if we should ever have a daughter her middle name would be my mothers name ‘Cecilia’. On January 11, 2006 Shelby Cecilia Siggins was born.
Many have said I have a great moral strength and a remarkable attitude but I owe a enormous thank you to my mom. She would always say, “ A lot of people with disabilities feel that life owes them something, just remember no one owes you a dime. The world doesn’t owe you anything, this is what you have and you use your resources and you get through it.”

Tuesday, 21 April 2015

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