I Just Need to Rant!

This week has been family vacation.  For most that means packing up a few kids, all of their stuff, getting in a car or on a plane, and taking off somewhere.  If there are younger kids, it might mean zoos, aquariums, amusement parks, water parks, etc.  However, in my family, there is no such thing as a typical family vacation.  We are a family of travelers.  When I turned 13, my mom put me on a bus with my classmates to Montreal and Quebec for a week.  The following summer, at 14, I took my first plane ride.  From Buffalo, NY to Sydney, AU.  Nothing like a small trip to introduce traveling on a plane.  The following years brought school trips to Atlanta/Macon, Ga, NYC,  and Washington, D.C.  The following school year, I was a Junior and preparing for college.  This brought on our first "real" family vacation.  My mom and I drove for 12 hours that summer from Buffalo, NY to Nashville, TN.  I was looking at Vanderbilt University for their bowling program and got the travel bug back in me.  See, being from Buffalo, we live within 3-4 hours of both international and cross state cities.  We had done long weekend trips with my mom and my aunt to Toronto, Pittsburg, PA, and Cleveland, OH.  Those are all relatively close by.  However, getting in the car, driving to Nashville for a week, and then driving down to Auburn, AL from there was a whole different ballgame.  And I loved it!  So, this started many family trips.  In March of the following year, my grandmother passed away, virtually leaving my grandfather as the sole caregiver to my aunt.  She has severe JRA as well as other undetermined joint problems.  Virtually, at 30 years old, she had the body of an 80 year old.  And at that age, after having her second knee replaced, her body went haywire.  Now, neither of her knees completely straighten out, most of her joints are fused, her one hip no longer has the ball from the ball and joint socket.  She is physically just a mess.  And so drugged up on pain meds that there are days where all she does is sleep.  But they blame it on narcolepsy.  So, needless to say, you get the picture of what I am talking about.  

I loved my grandmother dearly, she had her own struggles, but I did love her.  She died very young, and was injured at work many years before that.  So, I was forced, around the age of 13, to step up to helping to be a caregiver for my aunt.  A job that at the time I felt was super important and took very seriously.  However, by the time I was in late high school and into college, I was exhausted from this role.  Because I had felt like I had lost so much of me in doing it.  My mom so often compares me to my aunt.  And truthfully, our entire relationship had become about how I could help her.  And I didn't want that.  But after my grandmother died, we began to take more "family vacations".  These family vacations have included Montreal, NYC, Boston, Nashville twice, and currently Atlantic City and the Jersey Coast.  Sounds great and exciting, right?  Yeah, well, not always.  Because on most trips that we take, I'm my aunt's caregiver.  I go from being the niece to being the aide.  My whole world has to revolve around her.  And on this particular trip, I feel like I am losing my ever loving mind.  We face accessibility issues all the time, especially with bathrooms.  Ugh, bathrooms are seriously the worst.  Because most aren't meant to hold a power wheelchair and two people over 250 lbs.   If we are lucky, we can maneuver in tight quarters.  However, there are also occasions where she has not been able to use the bathroom somewhere because of the size, or I need to remove the wheelchair from the stall because there isn't enough room.  While that may seem minor to some people, remember that while I'm doing that, she is still trying to hold her pee in because she needs me to pull her pants down.  

Notice though, as I write this stuff, that it's always me.  I am always doing this stuff.  If it's not my grandfather, it's me.  We worked in the same school up until next school year, when I go back to school full-time.  She used to make me give up half of my lunch so she could go use the bathroom then.  I was constantly just waiting to be called away by her for something, and it wasn't fair to anyone.  Finally I had to put my foot down and stop that.  And honestly, I will not be sorry next year to not half to be doing that.  However, the issue still remains of having to travel and do all the heavy lifting myself.  Because my aunt refuses to let my mom do any of the work.  She feels uncomfortable with her lifting her, because my mom has never had to do it like I have.  And it all falls on me.  I have become so irritable about traveling, because I'm exhausted and don't want to do it.  Because this isn't what real life should be.  Because I can't keep wearing out my body for her.  Because I have a life to live, and I'm trying so hard to live it, but I have her lingering by my side all the time.  All the fucking time.  And I'm so tired of it!  I just want to be me, have my life.  And not have to worry about her all the time.  Because I don't want to be her caretaker all the time.  Because I have grown to resent her so much over the years.  And I hate myself for that.  And I don't know what to do anymore.  And I'm just so sad with myself for being this way.  

Somedays the Realization is Hard

Two snow days in a row!  Woo Hoo.  Those are the best words for anyone who works in a school.  Especially when we are on this streak of 6 weeks, no days off.  These two days were beyond exciting, even if we did get 20 inches of snow.  But, it leaves the brain to do a lot of thinking at the same time. I am a huge hockey fan.  To me, hockey is life.  You an either blame if on me living on the Canadian border, or just that I live in a Drinking City with a Hockey Problem LOL.  But for us in Western New York, if you don't embrace the winter and the winter weather, you resent where you live.  So, we love our hockey, our ice skating, our snow sports.  We have a program here for our persons with disabilities, it's called SABAH (Spirited/Skating Athletes Bold At Heart).   In the winter, they ice skate and have a big show in the arena here where all their friends and family can come and watch them skate.  They also have other programs where athletes can play team sports together.  They have school programs, like the program that my school is involved in.  It's a pretty awesome program.  The show is in a couple of weeks, and everyone is getting excited.  

But the realization is that LegalQuad and I can't go to that stuff together.  Being a high level quad, he has no control over his body temperature.  When he gets cold, his body can't warm itself back up.  When it gets hot outside, he can't sweat to cool himself down.  It's just part of the injury.  But when I hear the words, 'I probably couldn't go', it hurts my insides.  Because I love to do things like that.  I love hockey, I love SABAH shows, I love Disney on Ice.  And I understand the why.  But it doesn't make it any easier to say OK to.  It doesn't make it better.  It just gives a reason for the No, probably not.  Once the winter comes, it's like my little hermit has returned.  Because it's too cold or too much snow to go out in.  

Sometimes I wish I had someone to talk to about this.  I wish I had someone to understand.  I wish I didn't feel so alone besides me and him.  Yes, it's us against the world.  But sometimes I feel like it's me against the SCI world.