It’s been a long time since I thought about those first few days with my daughter. Actually, that’s a lie. There’s not a day that goes by that I don’t think about the encephalocele, that pesky bit of brain matter growing out of the back of her head. The still-growing scar on her misshapen skull makes damn sure of that.
It’s always peeking out, just below her curls.
I wonder what she’ll think of that, someday, when she realizes that she’s not quite like the other kids. I know there will come a day when she hates it, another when she accepts it, and another when she realizes just how grave a situation it was… and what a miracle it is that she is still around today.
I know enough, thanks to my nursing background, to know what an absolute miracle it is that she’s walking around, talking, and demanding that I paint her bedroom pink. Not a day goes by that I don’t thank her for showing me the way, for helping me find my light, and for using that light to help others.
She’s the reason we, this Motley Band, are here. She’s the sole reason that this site, which has helped so many, exists. Without her, I’d just be some blogger with a blog that I use to pontificate about the underrepresentation of kumquats in today’s media. I’d still be Your Aunt Becky, but I wouldn’t have done this. Any of this.
In her short life, she has altered the path of so many. In her three small years, she has done so much more than I ever will.
While I could sit here, raging against her birth defect – which has given me a wicked case of PTSD – I don’t. I celebrate it. I celebrate that one tiny bit of brain that has changed the course of my life forever.
Today, I ask you to share your stories of birth defects, birth trauma and birth injury. There are so many of us out there in the shadows, waiting to share how their lives have been changed with a few small words, a diagnosis.
The greatest stories remain untold, of course, not from a desire to tell them, but from a lack of an understanding ear.
In here, in this cozy library, fire crackling in the background, as we sit on overstuffed leather chairs, we are ready to lend you our ears.
Growing up, my family dynamic was so different from anyone I’ve ever known. My father was born a footling breach with the cord wrapped around his neck. He ended up with brain damage due to the lack of oxygen to his brain and was later diagnosed with schizophrenia. My mother is developmentally delayed and was also later diagnosed with schizophrenia.
My parents met through my mother’s brother, my Uncle Bob, who was also developmentally delayed. Uncle Bob and my dad went to special education school together and became friends. Bob introduced my dad to his little sister, my mom. They met, fell in love, got married and then I came along.
Neither one was really capable of living on their own, much less together, and now a baby, me. By six weeks old I was malnourished and dehydrated – I almost died. My maternal grandmother took me away from my parents and brought me to the doctor. From then on, she did her best to raise me. It wasn’t long before my parents divorced and my mom moved back home with us. My father moved back home to his parents, too.
We had grandmother, my mother, Uncle Bob, and my grandfather, the child-molester, all under one roof. My grandfather molested my mother and had a reputation for other little girls in the neighborhood. I believe he started molesting me when I was less than a year old. I don’t understand why nothing was done legally but my grandmother said they just overlooked him.
I believe that he had intercourse with me around age four. My mom and grandmother noticed that I had like a nervous breakdown and screamed when anyone came near me for over a week. They had to keep me in my baby bed and just bring me food like a animal! I believe with all my heart he raped me but no one took me to the hospital or doctor because he might have gone to jail for it. My grandmother had no education and relied on my grandfather to support her and the rest of the family. I’m not making any excuses; I think she just didn’t know what to do.
I had so many problems with my private areas when I was a little girl and nothing was done. I still don’t understand why. I even had to have surgery on my vagina when I was five – it’s like everyone was wearing blinders. Baffling. My grandfather died when I was seven, so the molestation ended
By ten, I realized I was already more advanced than my parents. I taught my dad his ABC’s using flashcards when I was eight. He never learned to read and neither did my Uncle Bob. My mother can read but has absolutely no common sense, so I swear my dad was more intelligent. At fourteen, I had to quit school to take care of my family. By then my grandmother’s health was failing, times were changing, and they didn’t understand how to make appointments, pay bills, stuff like that because things became automated.
I became very angry that I had no childhood so I rebelled – big time. I ran the streets and ended up getting raped. by a friend’s father. He actually plead guilty to it and severed a year and a half in prison. I still feel like that was my fault because I flirted with him.
That’s the only way I knew to act around a man.
My mom is a religious fanatic so I grew up in church and attended a private “Christian” school. My dad’s mother paid for it but not for the reasons that you might think. Embarrassingly, it was to keep me from going to school with black people – terrible.
The school was crazy too; I just couldn’t escape craziness! At one point we had a so-called Evangelist visit and for two weeks we were made to listen to what was supposed to be real exorcisms and learn all about demon possession. It was horrible! I am forty years old and I still have issues with it.
After I quit, I ran the streets, acting like I was 21. At 14, I met a 19 year old man and moved in with him. I was living like a married woman at age 14. My grandmother was actually happy that I had settled down; now she always knew where I was. Unfortunately he was very obsessed with me and abusive. At first, I enjoyed the attention and punishment; I put up with it for two years.
Ironically – and I know this will be hard to believe but I swear it’s true – BOTH of my parents had nervous breakdowns and were diagnosed with schizophrenia within the same year! My mom thought she was possessed by a demon and talked to God while my dad thought he could talk to the devil.
They were both in and out of different mental hospitals all the time. My mom would speak in tongues and run outside into the street, it would take six police officers and EMTs to restrain her. My dad would try to kill himself, he took 120 over-the-counter sleeping pills and was in the cardiac intensive care unit before going to the mental hospital.
At 17, I met my ex-husband and became pregnant with twins. I lost one of them during my pregnancy but delivered my now 22 year old daughter. He gave me my first black eye while I was pregnant with her. We had three more children together, three sons. My oldest son was diagnosed with Asperger’s Syndrome and my middle son has autism.
Dealing with all my family issues with my sons delays was more than I could handle. On top of everything, my ex-husband was abusive. Along with several “minor beatings,” at one point I had a fractured elbow and a nose broken so severely, he split my nose almost in half.
In 2006, my Uncle Bob, who had been like a father to me was killed in a accident. It was more than I could take. I started abusing pain pills – big time. Two years later, my grandmother passed away and added drinking to the mix. A lot of drinking.
I left my ex-husband and met a girl I fell in love with; we were both idiots and addicts at first. Man, do I have stories! Four years into our relationship, I lost my kids. I gave up on life. Around the same time, my girlfriend and I briefly separated. When we were separated, she slept with her ex boyfriend, got pregnant, then we got back together.
I’d like to say we sobered up right away but that would be a lie. The baby was almost two before my girlfriend got help. Eventually I followed. Today, I split my time between my ex-husband’s house and my children. She lives with her boyfriend and her daughter. We are very close. Turns out, I really like my ex-husband now that we’re not married and he’s not abusing me.
I just wish I had someone to talk to that can relate to even half of my crazy upbringing. Someone who can relate to me. I don’t know anyone with both parents like mine or a life like mine. It’s a crazy life, but that’s all I know.