Have you ever had one of those weekends so full of ups and downs it felt like you were a part of a really bad soap opera that over dramatized everything? Ya. I just had one of those weekends.

Friday was a good day for me; it was my birthday, how could it have sucked? I spent it with my family and got cool presents. Saturday was a pretty decent day, I took the Non-Violent Crisis Intervention Course through work and learned a lot of valuable things. I also helped set up the dinning shelters for camp to see if we had all the pieces. Sunday was a completely different story. I was planning on going for the perfect birthday weekend where nothing goes wrong and you’re just generally happy to have reached the age of 18. I am still generally happy about being alive, but I’m completely bummed out at the same time.

Early on Sunday morning, Father’s Day, my beloved dog passed away. Shadow had been a part of our family for 8 years, and saying goodbye was so difficult. He was a major part of our lives, and I already miss every little thing about him. I miss him coming into the kitchen to bug me for a slice of cheese every time I opened the refrigerator, I miss him barking loudly every time I come home, I miss him sighing from boredom when my mom and I are on the computers instead of paying him attention, and I miss seeing him waiting at the top of the drive when we come home. That’s just a quick list of things I miss about him, the things I notice more now that he’s gone. The only good thing I have to say on that matter was that it was a quick death. I’m assuming his heart gave out as my Dad saw him in Kate’s room breathing rather heavily and tried to get him to come upstairs but he wouldn’t. Dad then went upstairs to put on a pot of coffee and by the time he came back down to check on Shadow, he had moved to the part of the hallway in front of my bedroom door and my parent’s bedroom door and died.

So Sunday really sucked for me. I was in bed completely out of sorts. I know he was a dog and to a lot of people who wouldn’t understand, there are worse things that could happen – and I am sure that’s true. But keep in mind that Shadow was a very important part of our family. He was one of us. I’m going to miss him a lot.

Monday afternoon I finally made my way down to my grandparents house. I was supposed to go on the Sunday but I didn’t feel up to it. Papa’s health seems ok; he’s progressing at the expected speed of someone who has just had triple bypass surgery. He seems depressed though, but I read online and have been told that its related to having heart surgery and it will pass when he starts feeling like his normal self. I agree with that. Papa has always been the kind of man who has to keep busy, or else he feels useless. Plus there isn’t a lot for him to do around the house.

Papa isn’t feeling up enough to coming to my Commencement on the 28th of June, as the car ride is a long one and he would have to sit outside for a couple hours – he could catch a chill. I don’t want him getting sick over seeing a silly ceremony that is very predictable anyway. He’s seen Shannon’s and Kate’s, he knows how it works. Besides, we will take lots of pictures and he will get to miss all the boring speeches! Lucky guy!

I start work tomorrow, I mean actual work, getting paid for the hours I put in. I got all of my co-op hours on Friday and sent in all of the co-op papers, so I’m now officially done with co-op. I’m an official employee, getting paid. We leave on Friday at 5pm for camp, and won’t get back until 3:30pm on Sunday. For a while, I was just going to get volunteer hours, but luckily my boss decided to put me on the payroll for that. Camp is going to be very hectic and stressful, and it will be good getting paid to sleep on a very hard ground and probably throw my body out of whack. It’s going to be interesting to see how my body reacts to sleeping in a tent, as I’ve never done it before. I’ll have to do it for 3 weekends in a row in July!

Well I’m off to read and get an early sleep, and perhaps think of some alibis for the Murder Mystery Club Night I’m helping run tomorrow.

P.S. I am a little worried that I lost all the readers I had before when I wasn’t posting a lot, so please if you are reading comment me so I know you’re still reading!

My younger sister has a habit of dragging me into every argument with our parents so she can win. Most recently, an argument over jobs. She has decided she doesn’t like working at Wendy’s and wants to quit so she can work at a spa. She’s not yet 15, and wants to work in a spa. My parents set a rule down for us when my older sister was our age that we would work close to home until we got our own wheels. The nearest spa isn’t close to home. My mom also pointed out that she would lose her cell phone if she quit her job, because she wouldn’t pay for it.

Then my sister brought up the fact that I don’t pay for my cell phone. I don’t pay for my cell phone because I don’t have a job. I don’t have a job because I can’t find one that I can physically do, shift work where you have to stand for 4-7 hours on end really kills me. I’m also trying to focus on graduating, and co-oping at SYG from 9-4:30pm everyday, 5 days a week is exhausting enough for me – getting a part time job I can barely do on top of that would screw up everything. I would miss days at co-op because I would be too tired or sore to go in. I wouldn’t graduate this year, and in turn I wouldn’t be able to go to college possibly in the fall.

I don’t like it when she does this, because it makes me feel like a free loader. My other sister also points out too many times in a week that I don’t have a job and don’t pay for anything. I don’t like feeling worthless, and I feel worthless every time I hear that argument; that “I don’t have a job and I don’t pay for my cell phone so why should they” argument.

Its very frustrating.

Parents worry about their children; there is no escaping that reality. They tend to worry more if their child becomes sick with the flu or a bad cough. They tend to really worry if their child has a disability or illness of some sort. Parents hate seeing their kids in any kind of pain; be it emotional or phsyical. If parents had it their way, then they would make it so their kids never felt pain or sorrow.

When I was younger, my mother would always tuck me in and lay with me for a few moments before I went to sleep. During these nightly rituals, I would sometimes confess things that were on my mind, like if a boy made fun of how my legs were different at school or if I got left out and expected it was because of my medical disability. On those occasions, my mom would get all misty eyed and tell me that she wished she could take it away from me and have it instead, that way I wouldn’t have to deal with the daily pain, the almost yearly surgeries, the feelings of being alone, and other things that come with have a medical disability. Instantly, I would feel guilty for making her feel sad about my MHE. I knew that if my parents had it their way, they would make it disappear for me.

As I grew older, I sort of stopped talking about how I felt regarding my MHE – for the most part anyway, there were days when I couldn’t hold it in anymore and the dams holding back that river of tears would just burst. I was afraid that by complaining about “insignifcant things” I would make my parents feel guilty for the way I was born. I also didn’t want them worrying about how I was dealing with things; as one day in the car my mom confessed that she and my dad sometimes wondered how I dealt with everything, and if I was dealing with it okay.

Its one thing wondering if I’m dealing with things okay myself, but having my parents wonder it is another thing. I don’t want my family thinking I’m weak for having bad days, so I keep them to myself as best I can. It’s rather contradicting though, because a lot of my family reads my blog. I still feel a little weird about confessing these bad days on my blog knowing that my family is going to read it and probably think differently about me; but I try not to think about that. I want to be honest in my posts to help other teens with MHE – or any other kind of disability that makes them feel like an alien or something.

Yes, there are times when I feel like a freak of nature. Yes, there are times when the physical pain gets to be too much and I just want to crawl up in a ball and sleep it away. There are times when I wish I could do all the things my friends and sisters do – figure skating, rollar blading, horse back riding, and snowboarding – without worrying about getting seriously injured. There are times I feel like I’m trapt in a bubble because my parents don’t want anything bad happening to me, and I dislike that bubble. I want to fall and scrape my knees but still know that they’ll be there to bandage it and tell me I’m not an idiot for trying something I really wanted to experience. I want to feel like I’m living and having fun, without them being mad at me because their scared of the outcome.

But I honestly don’t begrudge my parents anything. They keep me so close because they don’t want to see me hurt; and I love them for it. I’d probably be the same way if I was in their shoes. They are parents, after all, and it’s practically programmed in their heads to be over protective.

Today on the drive home from co-op, my dad and I were discussing this years MHE Gathering and my possiblity of going. I told him how I haven’t seen Mandy in 5 five years – since our first meeting at Wheels Inn. He told me that I could plan something for this summer and he would make sure that it happened; it just has to be sensible. Although I’ve been a part of the Bumpy Bone Club for years now, I’ve never gone to an MHE Gathering, it’s always been too far away or we just didn’t have the time or money to go. I’ve also only ever met two people with MHE – Mandy and her mother – so it will be good meeting more people with MHE. It should be an interesting experience – if I ever get to go.

I also spoke about my fears of never being able to afford my own car. He told me that since they wouldn’t get anything for our current car if they wanted to trade it in for a new one, then I could probably just have it – free of charge. That takes a load off of my mind, as being able to afford a car has always been one of my biggest concerns. I know that I’ll never be able to work a normal “teenage” job because they are all shift work where you have to stand on your feet for hours on end, and I just can’t do that. If I did manage to grin and bear it, I still wouldn’t be able to work enough shifts to even consider buying a car in this lifetime, and I’ll need a car to get to college. Plus, who wants to wait until they’re 30 to buy their first car?

My dad let me drive up the driveway today, since I’ve finally got my G1. I’m a little slow on switching from the gas peddle to the break, and I imgaine that will take some getting used to. So I’ll have to keep practising in the driveway. But it’s a start! At first I was really nervous because I didn’t know if my ankle would lock up. I guess to ensure that it doesn’t happen I’ll have to keep practising and doing exercises to make sure I have full control over my ankle movements. Both my sisters had to worry about lead foot, so it’s no surprise that I totally have to worry about it.

And since I won’t be able to start college until September of 2008, I’ve decided that I’m going to search for a part time job I can physically [and emotionally] do. I’m going to give the go-ahead to my mom about the summer babysitting job she offered. At first I thought the idea was horrible - babysitting a 7 year old girl and a 10 year old boy has got to be wearing on your energy – but I decided if I carefully planned out our days and made sure they were packed full of entertaining things to do then I wouldn’t have a problem for it. On sunny days they could come instead over to my house and use the pool and do outdoor activities, and on rainy days we could stay inside and do various crafts or games. I have a PS2, so all I’ll have to do is place the boy in front of that if he doesn’t feel like doing crafts on those rainy days. Sounds good right? And I’ll be able to save up a little money!

Then I’ll look around for a suitable part time job for the school year that I won’t be going to school to save up more money, but I’ll worry about that after summer.

A couple nights ago, my sister Kathrynn was writing out a cover letter and resume for a job she was applying for. She told me if you milked it a lot, then they would give you the job, then she read it outloud to me. The cover letter talked about how Kate was working at a movie threater but wasn’t making nearly enough to pay insurance from the new car she had had to buy with her scholarship money because her old car practically died on her and she had to get a new car. Now she needs another job because she can’t afford the insurance and gas money for it. The cover letter made reference to our father being self employeed and not having a lot of benefits, and she even mentioned me and my medical problem – which I don’t mind her doing because she also hates taking money off my parents and wants to be able to pay for things herself, and getting this job would help her out a lot.

What confused me was how she mentioned me, saying that most of our family’s benefits went to me or something. It was a couple nights ago so my thoughts are a little fuzzy but I still can’t get it out of my head. I’m to shy to ask my parent’s if I’m really costing them a lot of money because of my MHE. I had thought everything regarding me was covered by the government. Clearly I was misinformed about this.

I remember a while ago – before my first surgery I think – when they asked me during prep what colour cast I would like to have. Purple? Pink? Blue? At first I hesitated; they looked like they would cost extra, and I didn’t want mom and dad spending more money on me if those plain white casts came for free. I’m pretty sure they told me not to worry about it, and that it was all covered and to choose whatever colour I wanted – so I picked pink as I couldn’t decide. I’m not too sure if that’s completely accurate, as it happened a long time ago and for all I know it could be a conversation that happened in my head (ever get those?), but it’s still making me hold back on asking. Perhaps they didn’t want me to feel bad for costing them extra money.

I know that crutches and that leg brace I had to wear after last years surgery to keep my leg straight both cost extra money and isn’t covered, which is why I didn’t want the leg brace because it’s something you can only use once. Even if I need to use another leg brace, I think it would have to be created new because it’s shaped like your leg and my leg shape is always changing.

Anyway, it’s rather irritating because I don’t really know the situation. Am I costing my parents lots of money? It’s going to be a skeleton in my closet, because I don’t want to cost them money we don’t have. I know theres nothing really I could do about it, seeing as I can’t get a job that I can physically do, but still…I guess I would feel better if I knew, or perhaps I’d feel worse – but at least I would know what’s going on. I hate being kept in the dark. Besides, if I ever had kids then it’s likely that they would have this lovely bone disorder and it would look foolish of me if I didn’t know what was covered and what wasn’t. Not to mention, I’d have to warn my future husband how expensive I’m going to be – and it’s going to suck that it won’t be on material objects but instead on medical supplies.

NOTE TO FUTURE HUSBAND: “Diamonds are a girl’s best friend” doesn’t really ring truth for me. For me it’s; “Medical supplies are a girls best friend“.