Friday, October 14, 2011

The Story of Battboy and BattLady

September 10th, 12 years ago was the defining day for a change in my life I never planned, nor expected. I was 7 months pregnant and feeling great, glowing and wide. I am off for a typical stress test, and had no worries because I had been having a normal pregnancy. I went in for a stress test, was immediately admitted and had a baby 6 hours later, 12 weeks preterm. 2 lbs 11 oz.There were tubes and medical terms and a mind blowing amount of chaos. I have a very hard time even putting much of any of that time into words or cohesive thoughts. There were tons of decisions to be made QUICKLY, and I had a baby, but NO medical degree. It was overwhelming, humbling, scary, and I was terrified. My family and I tried to make the best decisions we could for a VERY tiny, but most precious little angel...Battboy.
He stayed in the NICU for almost 3 months and after MANY hurdles and setbacks and joyous breakthroughs, I brought him home December 23rd, in time for Christmas. Only to spend the Holiday trying to find pharmacies to get pediatric meds & special compounds before Santa sent all the workers home. Needless to say, within a week, we were back in the hospital for what would be the first of many hospital stays, procedures, and surgeries. Battboy is diagnosed with Cerebral Palsy and Failure to Thrive for his inability to eat, he is G-tube fed, and requires assistance for everything in his daily life. He is in a wheelchair and has a bad vocal cord so vocal communication is little, but he still loves to singsong a lot!
I RARELY focus on what he can't do, but rather build on what he CAN do. I want NOTHING but the best for all my kids, but in Battboy's case that means overpriced, but desperately needed special seating, communication devices, car seats, and in my wildest dreams, someday a van, where he can be taken places in his wheelchair without it breaking my back. I am a single mother so I do everything for him myself, other than when he is at school. We don't have nursing care, as insurance doesn't cover it for him. I have WONDERFUL parents who help me in EVERY way they can and I appreciate them more than words could EVER express!

I am trying to make a way for myself to take care of my family without turning to government aid or putting my parents in debt before they retire. For six years I have perfected my art of candle making and my infamous TennesseTarts. It is impossible for me to get a job outside the home, with all of Battboy's appointments and procedures, that are never ending. So in an effort to do something that works for us and allows me the time Battboy, and my other children require, I giving my candle business another try.
Battboy has MANY medical needs, but is generally in decent health for child in his condition, so we plan on him being around for a LONG time. I must plan for him and my family so that we can be the most productive members of society we can be. I am proud of my kids, my story and my products. I am also honored that you took the time to get a little history on my angel and why I do what I do. 

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