My name is Brandi and I am the mom of four children. I am married to Steve and we live in Indiana. I am a researcher in the field of genetics and am also a professor at a local university. My husband and I were married in ’02 and we moved to this area in ’04. My children range in age from 19 to 5. The 19 year old is my step-daughter, but I was blessed to get her as the bonus to our marriage! Our children are A (’94), N (’03), J (’05) and L (’08). A (’94) and L (’08) are girls and N (’03) and J (’05) are boys. A (’94) will be leaving this spring for school in Pennsylvania. My husband is a jack-of-all-trades and restores classic autos as well as builds hotrods on the side. His main job is for the power company.
My interests are varied, from cooking, cake decorating and sewing to theatre and I sing quite regularly at our church, but truth be told, we are so busy running the kids to and from their activities, that little is left for mine! Our youngest three N (’03), J (’05) and L (’08) are all in karate as well as Cub Scouts and Basketball for N (’03) and J (’05).
I am one of those people who had their entire life planned out as to how it should be. I knew I would get my education completed, get married, have 3 children and things would be ‘just perfect’. Well, as life so often does, I found this was not quite in the way I would expect. When N (’03) was about 20 months he began to show signs of swollen joints, significant pain and ultimately was diagnosed with juvenile idiopathic arthritis (used to be known as juvenile rheumatoid arthritis) and we began to deal in the world of chronically ill children. When L (’08) was born, mommy instinct told me something was different as she was always behind in her motor skill development and the most unhappy baby I had ever seen. At 15 months of age, she was hospitalized with an unknown infection, ran fevers higher than 101 for a month straight, organ systems began to shut down, she coded, and fought for her life like no child should ever have to. Finally, she was diagnosed with mitochondrial myopathy a diagnosis that carries with it the knowledge that 4/5 children diagnosed before the age of 5 will die before they leave their teenage years and less than one year later, she too was diagnosed with juvenile rheumatoid arthritis and N was diagnosed with mitochondrial disease. Despite the prognosis, we have been so blessed. Both children are remarkably healthy, and L (’08) was placed on medications that greatly helped increase her motor skills and she is now just like any other 5 year old girl!
It was quite the blow for the woman who had it all planned out. It shook me to my core, and yet, three years later, I have come to realize that this is the perfect life. It is raw, it is difficult, it is real and it is my life. I wouldn’t have it any other way.
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