Saturday

     

  

Saturday

     Something weird happened at my house. Maybe something bad. When I woke up this morning and let my dog out there was blood on the front steps. Not a lot of it but enough to make me wonder. Mama was not around. Her purse was gone. Her car was at home. Her phone was by the door. Dad did not not seem worried though. His face was flat but kind of mad and sad at the same time. Sometimes I don't know what people's faces are saying. I only understand their words. And Dad wasn’t saying much. My mother was out somewhere but where? It was unusual that she didn’t let me know what was going on. It was not like her to go anywhere without saying goodbye. I just didn’t know what everything meant. Their bed was made and the kitchen was tidy like she likes it. Red had been fed. The laundry from yesterday was all folded. It was so strange. She was here last night and now she isn't. I am actually old enough to mostly look after myself but Mama doesn’t go anywhere without letting me know about it. So I am kind of worried about where she is and if she is okay.

     My name is Harley. My mother named me. She had my name before she even had me. My full name is Harley Isabelle Susannah Grand but everyone calls me Harley. Or Harl.  My mother liked that when I grew up and wrote my name it would read Harley I. S. Grand. Harley is grand, get it? Dumb eh?  Grand can mean great or big. My dad called me fat once which Mama said was really rude. I am chubby, I know that. My thyroid is lazy. That’s what Mama says. And my learning disorder makes sports hard for me so I hardly ever do them except for basketball and Challenger baseball. Typical kids don’t pick me for teams anyway. I am usually the last one picked. Sometimes NTs are mean. Neuro-Typicals in case you don't know.

    When I was born, my parents decided that my father would work as much as he could so that my mother could stay home with me and my sister too. She always says that she gave up the second best job in the world, working at hospice, to do the best job in the world, looking after us.  After I had my first seizure my mother hardly ever left me alone. She was scared that I would have another seizure. She was scared that I would get really hurt. Or die. So she stayed with me. Or made sure that someone else did. Mostly though it was her, Mama and me. And seizures are really weird. Mama explains it like this. Some people’s brains get overheated and then they just shut down for a little until they can cool down and reset. My brain literally gets overheated because I used to have seizures only when I had a fever but now I have them all the time. Especially at school. I am not sure why I almost always have them there but maybe it is because I don’t like being there. School is lonely and scary sometimes and not that much fun.

      The most important thing is that I have to remember to take my meds. Mama puts them in my pill container and I have seven pills at night and seven in the morning. One for my thyroid, Vitamin D because my neurologist says that I have to, and 5 other pills to stop me from having seizures. Oh and a pill to help my skin which is really birth control but I don’t think about that. Mama saw something online about men raping a girl while she was having a seizure at a bus stop. She doesn’t know that I saw it too but I think that is part of the reason that I take those pills. Fortunately I have enough pills for two weeks because Mama just filled them up yesterday. I hope that she gets home before two weeks are up because I don’t know how to do my pills and neither does Dad.

     I had my first seizure when I was a year and a half old. I have heard this story so many times that I can tell it to you just like my mother would. Mama had just picked me up to put me in my high chair for Christmas dinner when I slumped over in her arms. She handed me to Granddad because he had first aid training. Then she called nine one one. The fire truck got to our house first and then the ambulance came. So we went to the hospital in the ambulance and there was no Christmas dinner for anyone. We stayed in the baby room in the emergency department all night. I don’t remember it but they did a lot of tests on me. I have been really scared of needles ever since.

     I have a couple of different kinds of seizures, tonic clonic and complex partial. All I know is that I have the kind where I fall down, jerk around and sometimes pee myself or the other ones that are short and I act kind of frozen. Either way I don’t remember them but afterwards I am tired and headachey and usually embarrassed. I have heard the stories about some of the weirder places that I had seizures, like the one I had in Ikea, when I got lost first, then found, then had a seizure. Or the time that I had a seizure on my birthday, or on Halloween, or on both picture days at school when I peed myself and had to be wrapped in a blanket. Or in Mexico, or Las Vegas, or in the airport on the way back from New York. Or when my dad and I got put off a cruise ship in Puerto Rico because of my epilepsy. I hate seizures.

     Change the subject. Mama wasn't around and I had to figure it out. It was like a mystery.  I might not be smart like some people but I'm not dumb. I am going to find out what’s going on. Mama says that you have to play the cards that you are dealt. That means the same thing as making lemonade with lemons. You do what you have to do. I had to find my mother.

     So the first thing I did was look at everything and notice things the way I do. Mama says that I have eyes like an eagle. We have a neighbour who knows everything about eagles. Mr. Hancock is his name. He has put eagle cameras in tall trees and has given seminars to teach people about eagles. He is awesome! Anyway I do notice everything. So I am going to write everything down in this journal that Mama gave me for my birthday so that I can figure it out. This is what I noticed. The stains on the stairs were dry but I am pretty sure that it was blood. I walked our whole property, all five acres to see if I could find Mama. She was not around.  Our property is beautiful but messy where Dad keeps all his wood and stuff. We have two ponds and lots of really big, really old trees that are cedars and maples. So it took me a while. Also I noticed that Joe, the homeless guy that lives at our place, was not around, which is weird because he has no car. So he and Mama were both missing which really is strange because Mama mostly doesn't even like Joe that much so they wouldn't be anywhere together.

     I told Dad what I had discovered, which wasn't too much. He did not seem that impressed but he told me that he and Mama had had words earlier. I’m pretty sure that that means a fight because he still seemed mad at her. Anyway, I don't think he will help me right now so I am going to walk my dog Red and think about things for a while. Then I might play basketball for a bit. 

     I really like basketball. I’m not that good but I play on the Special Olympics basketball team and I try really hard. There are some players that are way better than me and some that can barely even get a basket, like ever. So I am somewhere in the middle. The important thing is that no one cares if you are a good player or if you have seizures or Down Syndrome--- they just care that you show up, you try and you do your best. The coaches are nice and even Scary Coach doesn’t seem so scary, once you get to know him. He just wants us to be disciplined and follow directions, like typical players do. I get that. We played really well at the last tournament and came in second. We were so happy and even Scary Coach, his real name is Coach Don, even he smiled.

     Dad and I had leftovers for supper and then we waited for a bit and did a little work out in our outdoor gym. It is fun being outside and hearing the birds and everything while you are lifting weights. I can't lift very much but I still like to try. Dad used to be big and strong when I was born and he is still strong but not so big anymore. He works really hard and works long hours so he is always tired and whenever we watch t.v. together he ends up falling asleep, no matter how exciting the movie is. Sometimes he starts snoring and then we know that it is time to go to bed. We just cover him up, put the dog out for a pee and go to bed. So that's what I did. I`m not into staying up late. I really need my sleep.