It is odd how many subgroups I can place myself in if I stop and think about it.
- I am a person with a disability.
- I am a woman.
- I am a mother.
- I am a homemaker.
- I am a college graduate.
- I was a teen mom.
- I have been homeless.
- I am married.
- I am in my 30’s.
The list could go on and on. As you may notice having a disability is only one bullet point in a long list of items that collectively make me who I am. I tend to say that being a woman is a broader and more inclusive (meaning greater number of people who identify as female), category I belong to. Yes, the combination of being a woman with a disability proves to be more challenging in many ways but believe or not sometimes being a woman is challenging enough. I think as females we are raised ( at least in this society) as lone survivors. Women are not taught to band together and share life’s burdens.
I have always thought I would be a mother. It always just felt inevitable to me. Within this unwavering dream, I alone did it all. Raised my child, cooked, cleaned, gave sage advise (all while looking perfectly put together in my apron). When I was first diagnosed it was the first time I had even questioned whether or not that would be. Even then I was set on showing the world, I could still do my part (save the world by repopulating it with my perfect children). As many people know I had my first son at 19 years and my second son 12 and 1/2 years later. 12 1/2yrs later I was not totally convinced my goal was unreachable. Before I had my second son, (almost exactly a year before I became pregnant with him) I was pregnant. For those of you who are bad at math, 3 pregnancies, 2 babies.
When I was 19 weeks pregnant and newly married, I went into the ultrasound room (for my gender reveal ultrasound); I was accompanied by my husband and mother-in-law. I laid on the paper-covered bed, with my family seated alongside me in the dark, cold room. As the tech rolled the ultrasound wand over my swollen belly, I chanted under my breath, “girl, girl, girl”. As my baby happily danced on the screen for us, I searched the woman’s face for any telltale signs of gender realization. As, a poor attempt to break the slence I said, “I was really hoping for a girl because I already have a son.” The well trained stoic tech while maintaining her neutral face said, “It is a girl. but I see something…..”
It was like with that stupid, unclear sentence, the recording I knew as life came to screeching halt. Wait, what? I never for a second even in 2014, 13yrs after my diagnosis thought anything was/could go wrong. Of course, my husband was tested as a carrier of the Frerichs Ataxia gene. without the negative confirmation, we would never have chosen to go forward. So what I couldn’t walk. This was something I could do. I was my given right! It was not that I thought I was more capable than other women. It was more like proving I was as capable and more determined.
2 weeks later at 21 weeks or 5 months, there was a horrible emptiness in my already deflated belly. The quiet and stillness seemed to hunt me. The doctors had told me it was a fluke. “It sometimes just happens.” No matter what people said my daughter died because I had somehow failed her. Even now over 5yrs later I wonder what I could have done differently.
What if, women came together and supported each other, not only after the fact but before something like this happens. I know, crazy. All of a sudden these amazingly strong women (some of whom I had known my whole life), shared their painful and similar stories. I was hearing stories, I had never heard. So. many stories from so many different women. Unbeknownst to me, it was actually very common. Is it the pain or the shame that kept these stories from me? And suddenly I was not the women with a disability going through yet another shitty thing I was given to deal with, but instead, I was a woman. A woman, who like 1 out of 3 women do not, for a variety of reasons, carry their baby to term. This is a fact that holds true; it places no blame. I am just wondering if stories like this were told in common legend, maybe along with the first time a woman got her period, or had sex, the feeling of isolation and guilt would not be one more challenge to overcome?
This is not to say that the sting, when I see a little girl with ringlets in her hair would not be there, or every year on the birthday that we would have shared, I wouldn’t stop to figure out how old she’d be. But maybe with this unspoken widespread knowledge, I would have mentally healed more quickly or not let the hate for other mothers of daughters grow inside me. It feels like we (women) spend far too much competing with each other, rather than taking the time to learn from and appreciate each other. I am not exactly sure how to rectify, this well-rooted problem, but I have always thought communication was key. I try to be an open book as a woman and a mother. Answering questions is a big way to spread many kinds of awareness. I want anyone and everyone to learn from my experiences.
My daughter would have been 5yrs old this past July. I named her Cecelia (Cece) the patron saint of music because I saw her dance. I later found out the movement was most likely due to miss firing nerves. My sons are the best I have to give the world and one of many lessons I try to teach them is…”don’t take anything for granted, and celebrate all of life’s little wins.” I am not just a girl, but a woman (strong, brave, and a force to be reckoned with).