Monday, 29 February 2016

Happy Rare Disease Day!

Today is Rare Disease Day! A day for people all around the world to celebrate their uniqueness and raise awareness on the less talked about diseases and conditions that they have.

Before Olive was born, I had no idea there was a day dedicated to rare diseases. I never really thought twice about statistics of things affecting people. I was in my own quiet, oblivious world, with a touch of knowledge about a few different things.

Since Olive was born, I have read, read, and read some more. I have asked questions. I have gone looking for help and advice. I have educated myself as much as I can, within my current state of mind, about CMN and am looking more and more for further information on CMN.

Though I find myself to be more knowledgeable on CMN than most doctors and nurses I have met, there is still so much to learn. Because it IS rare, there is further studies and research findings making their way to the surface continually. I find it fascinating. I find the science behind the condition so intriguing and am fascinated at how the human body works.

I have always considered myself to be of an average intellect, and never had the confidence to dream of myself amounting to much, career-wise. I can actually hear my Dad's voice telling me off as I write this - he always says I am too hard on myself. But it is the truth, and just how it has always been. I have always been quite shy and this affected my confidence.

If it wasn't for Olive, I would not have this new folder of information locked in my mind. I don't imagine I would have furthered my understanding of how people who are different or rare feel or think as a reaction to how others treat them. I have had a compassionate streak in me always, but I never used to actually sit and think about how someone else might feel in a situation. I am ashamed to say, I never used to think twice as a teenager about making fun of someone behind their back with my friends.

Olive has changed me. She softened my edges but also sharpened my defenses. She has taught me what being an advocate for my child actually means. She has taught me that beauty comes in all shapes and sizes. She has changed the way I see the world. In my quest to be the best same-sex role model I can for my girls, Olive has taught me how to stand up for myself, my family and for things I believe in.

I can still be a pushover (in my nature I guess!) but I am less likely to see an injustice go unmissed these days. I am proud of that. I am proud of my daughter for teaching me so much without even knowing how she did it, but just by being her.
I have had a lot of conversations and messages from friends or family over the last few years telling me how Olive has changed the way they view certain situations, people, or even the world. This makes my heart beam with pride and love for my little darling.

My sweet, one-in-half-a-million baby girl.

Happy Rare Disease Day!

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