"I hope you have one just like you one day!!!" That wonderful phrase uttered by mothers all over the world across generations to their children. Except in my case, it was both my parents, my entire family, AND family friends. To say that I was a handful growing up would be a bit of an understatement. Give me 2 seconds and I could guarantee you at the very least: a pretty creative injury (that probably required an ER visit), something destroyed beyond any hope of repair, something that caused one of my parents to do an immediate, split second remodel for safety reasons (such as tearing out closet rods, molly bolted, plastered over plant hangers, etc.), fire extinguishing, and the constant "what the hell were you thinking?" as a few examples--all at an extremely young age. I'm not entirely sure how old I was when I finally had a real bed again and furniture in my bedroom. I had my bedroom windows locked (I think my dad nailed them shut after he caught me leaning on the screen at 5am, over the garage roof one morning), a mattress and box spring on the floor once I learned how to escape from my crib, bells on the outside of the door (not the door handle, because I quickly learned that if I held the bells, I could escape the room without mom hearing), and the rest of my furniture was locked in my closet because I'd turn it into a jungle gym at night when I was supposed to be sleeping. Keep in mind this was all before I turned 2. And I didn't get any better from there. :)
I think God knew what he was doing when he decided the odds of me ever being able to have kids is almost impossible. Conceiving is difficult. Carrying to term is almost impossible. I've already had several miscarriages. To carry to full term would be very high risk and would require a LOT of extra vitamins and almost constant injections, but even then, the chances are slim. Then there's the risk to me. But now I would have to consider the possibility of passing on this disease to my child--and raising a child with this disease. I know many women who do and bless them for it, but there's days I can barely make it through, let alone having someone depend on me like that. I just honestly don't know. Everything happens for a reason, right?
Over 8 years ago, my nephew was born, though and after a couple of months, his parents split up; my brother and him moved back home so that my brother could return to college, get his career started, and build a good life for them. His mother was getting her life together as well. For almost 3 years my mother and I helped raise him while his parents got their lives together. And I realized that that little boy was just. like. me. Eight years later? He still is. And I find I'm the one asking "what the hell were you thinking?" And realizing after over an hour of arguing with him I realized I was staring at myself. Except it's a male, eight year old version of myself. And I have absolutely NO clue how my mother survived my childhood.
He came to stay here for a few days this week and I found myself apologizing to my mom--and his. That boy is bruised, scratched, cut, and scraped from head to toe because of his "brilliant ideas" that sounded good at the time. Aside from trying to kill himself by death defying stunts, he loves archery and hunting, so he's learning how to use a compound bow. It was a bit weird teaching him stuff my dad taught me. Except I know I listened better. We'd of spent more time with his new duck hunting game if I didn't break it--I kind of dive bombed the dog by accident with the duck and killed it on my first try. So archery kept him out of trouble for at least a little while--until he almost shot me by accident.
The hardest part of it all was that I haven't been able to spend time with him in months--long before I had a diagnosis--before the worst of my symptoms really started. I couldn't take him to the beach swimming because I can't be out in the sun. There is no shade down there, so there wasn't anywhere I could even seek refuge out of the sun. There's still a lot of things I can't do between the swelling and adjusting to the medication, or not being able to do certain things because of the high risk of injury. He was fine with a lot of it, but I had no idea how to explain that this disease isn't going away when he responded "that's okay, we'll just do it when it's gone." I didn't even tell him what I have, or what kind of disease it was. How do you explain that to an 8 year old? Hell, I'm still trying to explain that to myself, considering I don't even know what the next few months are going to bring.
Learning to live life with painful and chronic illnesses, while living with someone with whom also has a chronic illness. Learning more about the darker side of medicine, finding strength I never thought I had, meeting amazing people along the way, and finding myself trying to help those same people and more like me because we're all going through the same thing. At the end of the day, it's not about what we can't do anymore, but what we CAN do.
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