Well we are about 90% packed and ready for camp! Tomorrow should be a breeze to load the van and hit the road by 1. We are soo excited! A whole week to unwind and relax and chill out with friends, many that we haven’t seen since last years camp. Seriously, if you have a camp of this kind in your state, or hell even an adjoining state… Do yourself a favor and sign up! If you have SMA or MD and you loved your years going to MDA camp, find an adult camp and go! And if you are an able bodied person of any age, VOLUNTEER and be an attendant! It will change your life for the better. I promise you that! You get a week in paradise, hanging out with the coolest people you will ever meet! I’m not really looking forward to the camp food, but there will be tons of snacks, and we always get way more than enough to eat. This year I am really going to focus on taking pictures. I’ve always slacked at that. I have a great camera on my phone that I carry with me all the time, but I always seem to forget to take pics because I am too busy having fun! This time I promise to get some good shots. One week staying in an old creepy house HAS to have its share of cool pictures and stories. And I hope to share them with you guys upon our return. Wish us luck! And I will be back next time with some footage! Be awesome today!
I feel like an ass.
Today was absolute shite. I got Lauren up and to work and everything was fine. It was the start of a good day. I came home and got a few things together for camp, messed with our network a bit and then left to go give Lauren lunch. The usual. Well after lunch I came back home and started working on the network again, and I needed to use the laptop computer to look something up while I was on the server. I have a very kick ass high performance gaming laptop that I’ve been letting Lauren use out in the living room so that she can work and still be close to me so we can hang out, since I’ve been spending most evenings in the living room working on our home media setup.
We shut it down before bed last night, but left the screen vertical. Well, when I hit that power button, nothing happened. I took the battery out and blew on the contacts, and I unplugged the A/C adapter and reconnected it and still nothing. So then, in master sleuth mode I went to check the fuse box. Everything was ok there. I started kind of panicking, as I do when a high ticket item of mine is not doing its job. I went back to the laptop and noticed that the keyboard was sticky. I gave it a quick sniff and immediately knew what the fate of my laptop was. Our cat Bonk, who has been at war with me for months, had finally crossed the line and did the ultimate shitty thing. He got on top of the laptop and pissed all over the keyboard. Now before you assume I am just assuming, I have fixed laptop computers for years. I worked as a Dell warranty tech for years and have done lots of freelance repairs and yes, I know from much experience what a fried motherboard looks and smells like, once it’s been pissed on by a cat.
I freaked out and texted Lauren and told her what happened. This is not the first time this little shit has destroyed my things. He has wrecked our carpets, killed 2 pairs of my flippyflops, and pisses in my sink on a weekly basis. I told Lauren NO MORE!! We are getting rid of him! When I got to work to pick her up I was still fuming! I was just so angry that this little furry fucker was destroying my stuff!! This was the last straw! I paid big bucks for that thing and it was top of the line 2 years ago! And I had JUST fixed it about 3 weeks ago for an overheating issue! Well we got home and I was taking her to the bathroom, and I saw that she had tears coming down her face. I said “are you crying??” And she replied “it’s ok. It’s just that I saw Bonk when we walked in and I am going to miss him.”
I felt like the biggest piece of shit. I can’t believe I was so stupid and heartless to let my anger make her cry. She didn’t even protest my saying I want to get rid of him. But I saw how it made her cry even though she tried not to. I hate myself for that. I want nothing in my life but to make her smile and laugh. Never cry. I could just crawl into a cave right now.
Up at 6:30am! And I actually have a good attitude! It’s purely due to my new best friend Kicking Horse coffee!! It’s 100% organic, free trade and amazing! I normally use creamer and sugar in my coffee but this stuff is so awesome I just drink it black. And the kick you get from it is amazing!! I grind it every morning and I am so happy I could squeal like a 10 year old girl with a new doll! Never again will I buy pre-ground coffee! $20 grinder has saved my sanity!
What a glutton!!
Nah.. It was actually my steak. She had swordfish. But it was a funny scene. This business meeting/dinner was going on at the table next to us, with 2 Japanese businessmen and one awkward American guy. They actually took pictures of each other holding up their plates of raw meat! Very hard to not crack up. And they were in total awe of my gigantic 28 ounce beefeater! My mother took us out for my birthday dinner since my actual birthday will be while I am at camp.
Lauren’s hip is all messed up this week. She thinks it somehow got sprained. It sucks because although I am trying to learn exactly how her body works, when she gets an injury of any kind, it takes FOREVER to heal! I remember 4 years or more ago, one of her aides sat her up in bed while her legs were flopped over to one side, and it somehow wrenched her knee. It was messed up and painful for weeks! So now simple things like dressing and undressing her are extra complicated because I don’t want to hurt her leg. Ugh! I wish I was better at this stuff. I hate knowing she is in pain, and she tries to cover it up and not say anything but I know it hurts. Please heal fast! I don’t want extra issues at camp. It’s already going to be a challenge! But we will deal with it and have a great time!
Sitting at the car dealership getting the brakes fixed on Lauren’s van. Trying to get everything taken care of ahead of camp, so it’s not such a frantic day Saturday. I’d love to have most of the stuff packed by Friday night, so that Saturday morning we can just get up and shower and eat, and be ready to hit the road stress free.
We always seem to forget little things and I’d love for that not to happen this time. I’m a very forgetful schmuck sometimes, so we will see how this pans out. Lauren has a lot of specific things she needs while being away from home for such a long time and I’m always afraid I will forget something important. She uses a bi-pap machine to breathe at night, and so we need to carry a jug of distilled water with us and I forgot that once before. Oops!
We are lucky that Lauren’s condition still allows her to breathe on her own, but she needs help at night because her body forgets to breathe in her sleep. SMA is a very individual disease. It affects everyone a bit differently. Lauren is way weaker than a lot of people her age with SMA. She can’t move her arms or hands at all, besides a tiny bit of movement of her left hand, thankfully enough to drive her chair and control a small wireless mouse that she uses with an on screen keyboard allowing her to use a computer. Which is SO awesome because it allows her to do her job as a graphic designer for a non-profit organization. A lot of SMA people we know can still lift their arms up a bit and feed themselves, but Lauren hasn’t been able to do this for years. BUT on a good note, her breathing is a lot better than some of her peers. A lot of them have to be on a breathing machine with a trach. So we are happy with what we’ve got.
It amazes me having met a lot of people with SMA and MD, how they learn to adapt to their disabilities. Talk about determination! After a lot of fiddling around and practice, followed by getting the controller on her tray just right, she can sort of use a playstation controller!! So we have been playing chess together! She whooped my ass the other night.
Ok van is done. $614 later. Ugh. Catch you later!
So our annual week long camp is coming up on Saturday! It’s pretty much the coolest week of the year for us. It’s called With a Little Help or WALH camp. It’s a week long camp for adults with Muscular Dystrophy. Basically it’s for the “Jerry’s Kids” after they become too old to go to MDA kids camp but still want that same experience they grew up with. This is going to be my 4th year taking Lauren and its a life changing experience.
For one week every summer, people with MD can come and have a great time hanging out with friends, going for walks on great paved trails in the woods, and there are lots of volunteers around to help them with whatever they need, yet give them the freedom and space that they want. We’ve got poker tourneys that go in until the wee hours of the morning, lots of cool activities, but no set schedule. You can spend all day in the woods by yourself or with a few close friends if that’s what you want. It’s just a great atmosphere and a week with a bunch of great people. I’m super excited this year because Lauren and I get to spend the week sleeping in a 100+ year old HUGE house called “the Castle!” I’ll be filming in it a bunch and will surely get some footage up here.
It’s going to present it’s share of challenges though to be sure. It’s not what you would call “accessible” by any means. The bathroom is very small and there is NO way I will be able to shower her in it. So we will be bathroom nomads and try to use the girls cabin showers whenever we can.
This is an important week for us. With just a month and a half before we do this wedding thing, we need some time away from real life and the grind, just to hang out and spend time together. This wedding thing is such a pain in the ass. All of our parents are insane and drive us crazy. I just want to get it over with. I never thought marrying the person you love would be this difficult. You may not know this, but the government basically bans people with disabilities from marrying people without disabilities. Sounds like some kind of joke right? Well it’s not. If I were to LEGALLY marry Lauren (sign a marriage certificate and have it notarized), Lauren would lose her Medicaid. Seriously. She would lose all of her insurance. No more assistance with anything. Because in our glorious country, if she legally marries me, she has to take on her husbands insurance. And my job doesn’t offer any Insurance. Yep. I work in the HEALTHCARE industry and I don’t get insurance. And I can’t afford insurance on my own. So yeah. The government will NOT be invited to our wedding. But that doesn’t make it any less of a wedding or marriage. We will be husband and wife in our hearts and minds, and in the hearts and minds of all of our guests. And that’s what matters. Fuck the government. More rants about that whole deal later. It’s late and I’m ready to veg in front of the YouTube machine. I’ll be back later.
This is my first blog entry. It’s also my first blog. I’ve always been into technology and the newest Internet trends, but for some reason I’ve never done a blog. So here we go!
I’m currently sitting at a salon. Not my first choice of place to be, but here I am. I’m sitting here waiting for Lauren to get a face wax. Lauren is my fiancé. Now normally a guy can “opt out” of tagging along on a trip to the salon, but her case is a bit different. She has SMA. That’s Spinal Muscular Atrophy for all of you that may not have heard of this disease. Basically, all of the muscles in her body have shrunk into not very useful meat. Her brain however is not effected. She is a very smart 28 year old girl that cannot move much besides her head and her left hand a little. She’s not paralyzed, so she feels everything.
That being said, in every other way she is the same as any other 28 year old girl. She is very stylish, she loves her cats, she has a great job that she loves and she is going to become my wife in less than 2 months. We are having our wedding outside in a beautiful garden, and the reception at the big event hall at her place of work.
My full time job is taking care of her. I am her hands basically. Since she can’t move, I have to do all of the things that people normally do for themselves. Everything from getting up out of bed, showering, combing her hair, getting her into her wheelchair and putting her hand onto her joystick, I do for her. Once she is in her chair she can drive herself around. I also am her chauffeur. I drive her wheelchair van to kart her wherever she needs to go. And today it’s the salon (the face ripper).
I’m also her personal chef. I do it all. I cook her meals, cut them up small enough for her to chew (she doesn’t have much jaw muscle so it’s hard to chew) and finally get it from the fork into her mouth. All the things that we take for granted I do for her. All the way down to the simplest things like scratching an itch and swatting away a mosquito that is biting her arm. Imagine that… You have a mosquito biting you and you have to notify someone and then wait for them to respond and react, all while experiencing the little sucker draining your blood. Just a little something to think about.
This blog is basically going to be my life living with Lauren, and the stuff we go through and how I deal with it all. I’ll be updating this site as often as I get time. I have a lot to talk about. But for now i must go. She is done and I have to go get her wallet out of her backpack and pay for the waxing. Fun stuff!