Thursday, January 7, 2016

What Having Hydrocephalus has Taught Me........

What do you see when you look at this picture? A lot of you  in fact probably all of you would say, a girl in the hospital, or a girl getting ready for surgery and both answers would be right, in fact, I was getting ready for my 3rd surgery in 2 weeks in that picture... Now I will show you another picture. 
What if I told you that I see the same fun loving, crazy girl in both of these pictures? Although these pictures are about 9 years apart. I see the same girl... But at the same time, such a different girl. But it's the time that comes in between these two photos, the things you don't see, that matters most. I've grown so much in the 9 year span between these pictures, but as you can see one thing has never changed. And that is my smile. My determination to beat hydrocephalus and become a hydro hero has gotten stronger. I've learned a lot in these past 10 years, of battling constant headaches, constant, everlasting, unrelenting pain, I've learned that you can cry whenever you want, I've learned that nothing stops you from reaching your dreams but yourself. I've learned that you can rebuild your life after something tragic shatters it into a thousand pieces, and then the wind blows and moves those thousand pieces in a million different directions. I've learned that none of this is my fault, and hydrocephalus is just very unpredictable. I've learned that I'm not a hydrocephalus "sufferer" I'm a hydrocephalus Fighter. I've learned that re-teaching your body how to do things it thinks it already knows how to do and doesn't realize it can't because its' paralyzed is extremely difficult and mercilessly painful.
I've learned that no one understands you better than your mom, and it's ok to "want your mommy" even when you're 26 years old. I've learned that even when you can't speak a word, you can still say so much. I've learned that even though I want a cure to hydrocephalus more than you could ever know, sometimes clinical trials aren't for me (lol). I've learned that instead of asking my doctor questions, I should just go look up the answer myself because that's what he's going to make me do anyway, and then he will make me write a paper about it, so maybe looking it up is the better way to go (lol). I've learned that I now sleep better when my hand is clenched, and if I can't sleep, to think of my hand and whether it's doing that or not, and even though it hurts, usually I'm asleep within minutes of doing this. I've learned that doctors don't have all the answers, and sometimes it's nice to hear them admit that. 

Obviously as you can see I've learned a lot through this entire journey. But it's not over yet. I'm still fighting and so are millions of others. I've learned that hydrocephalus will leave scars, but those scars just tell a story about how I survived and that a body without scars is boring. I've learned that everyone at some point in their lives feels like they stick out in the crowd. I've learned that when people tell me I can't do something, that they're just fueling me to show them I can, and if they aren't they're not worth my time. But most importantly, I've learned that I have so much more to learn. And I can’t wait to get started.

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