I started this awhile ago as an outlet of sorts. But here’s the thing… Like anything else I quit coming back and writing. Mostly because life got overwhelming. And I also wanted to learn how to just be in the moment again and just live. Make memories, and just enjoy the things around me again. The remainder of 2016 has taught me a lot. In September my father in law passed away. And everyone is still trying to learn how to live without him. In October I said good-bye to my best friend. My Gypsy dog had to be put down, to most she was just a dog. But she was my best friend for eleven years. I raised her from a puppy, and while I was absent for a time while I was in college and trying to learn how to be an adult she was always there; waiting for me. It’s now January 2017.
Where do I even start? My daughter potentially has another disease and genetic mutation that could be fatal later in life. I found that out in December. I’m learning how to deal with even more specialists, and how to recognize seizure episodes. It’s hard to think about though. Especially when you think about the long term. I don’t care how perfect of a parent you are, you still dream about the life your child will have. And now I question if she will even get to enjoy the simple things in life. Such as counting down to her 16th birthday so she can get her driver’s license. Will she ever be able to drive? The thing is, she will never grow out of heterotropia. It’s permanent, she will always have it. Will she need medication for the rest of her life? Only time will tell. Only time will tell… that answer is starting to become the normal for us.
Also to top it all off, in December the neurologist looked at me, and said “I want her to see a cardiologist sometime.” I was in shock. I mean so far this has all been about her brain. Why do we need to get a heart doctor involved as well? Well it turns out that her extremely flexible joints could be the cause of a connective tissue disorder… It’s genetic. Well isn’t that just fantastic? No, not really. It turns out that these disorders can cause many organisms to not develop properly. So as she gets older she could be faced with heart problems. For example, a leaky heart valve… Let’s let that just sink in for a minute. Trust me it takes longer than a minute, I still can’t grasp my head around any of this. So eventually we will talk with her pediatrician and then again with the neurologist to determine when and where we will see a heart specialist. Although the neurologist reassured me, “I don’t believe she has any issues to be concerned about…yet.”
“Yet.” “Only time will tell.” I hate those two phrases right now. I spend a lot of my time trying to research both of these disorders. There is hardly anything scientific on either one. The most I have found is that both are genetic mutations, passed down. You either have it or you don’t. Males don’t live past the prenatal stage. This could explain my miscarriage before Riley. Genetic could explain my seizure when I lived down south, away from home. Genetic could explain my unexplained and frequent migraines. Genetic could explain a lot of things. So at this point I feel as though as much testing as we can do now, will prepare her for the road ahead. Perhaps, but honestly “only time will tell.”
So here’s the thing… I am back. Because I don’t find a lot of anything anywhere. Because I feel alone in our journey with this diagnosis. Because I don’t want others to feel alone. Because I want to hopefully normalize all of this, I’m tired of over explaining what is “wrong” with my quiet, timid, beautiful, and amazing two year old. There is nothing wrong with her, she is who she is. Maybe there are other mommas out there in the same uncertain boat. I would love to talk with you, we can ride this storm together.