Sometimes It's Still Hard

I used to have this exact car. It feels like a lifetime ago. In my mind, it still represents a time of youth, and freedom that sometimes feels so far away from life as I know it now. 

I wrote this a few weeks ago. I am not currently in this state of mind. It is raw. It is real. I let you guys in, so please, don't hate!

Sometimes it’s still hard.

We are very used to our life.  Usually, we just go about our routines, and it’s no big deal that Michael is in a wheelchair.  Usually.

Then, randomly, there are times that are really tough.

It happened yesterday.

I hate that it happens.  I want to be completely past it.  I don’t want to complain, cry, any of that.  But sometimes, it’s still hard.

I wonder if it’s really this hard all time, but sometimes I’m just not strong enough to handle it.  I am usually strong. I have lots of experience. I can do most things that Michael needs me to help him with in my sleep.

But sometimes, it’s annoying. It’s frustrating, and it’s hard.  And I just wish we could both take a day off.

Things like just going somewhere are such a production.

I get ready.  He gets ready.  I feel all cute with curled hair and a pretty new dress.  We head out to the parking lot.  I bring a pair of shorts, because this is a new dress, and I’m not sure if I can squat deep enough in this dress to lift him for the transfer, or if I’m going to have to hike my dress up over my hips.

We are in a hurry.  Of course.

When am I going to learn to just slow down? Being in a hurry never works.  You can't speed quadriplegic stuff up.  It just doesn’t move any faster. Ever. Ugh!

I take my wedge heels off.  Because sometimes when I do a big lift, like into the SUV, with heels on, it hurts my lower back.  So, now I know. And I don’t lift in heels. Period. I don’t wear a lot of heels, especially when Michael and I are going somewhere in the car together.  But, like I said, I was dressed up.

I put my feet on the hot, gravely pavement. Squat deep, lift him out of his wheelchair and drop him off in the passenger seat.  Then, I pull him back, adjust his legs, put his left foot back in his shoe, which almost fell off in the transfer, put his seat belt on, kiss him on the cheek and close the door.  I turn the wheels off on the chair, push it to the back of the SUV, fold the backrest down, pick the chair up by the wheels, lift it into the back of the SUV, move it around to get it to the exact place it needs to be so that the hatchback will close.  I jump a little to pull the back of the car down.

Now, I need to adjust myself in my dress and put everything back where it started, walk over to the driver’s side, and get in.

My hands are dirty, I’m sweating now and I can feel my curls falling out of my hair, and there’s dirt on my new dress.

Great. Let’s go.

We get to where we are going, and park in a handicapped parking spot. Why are so many of these blue spots on HILLS? Will someone please explain this to me?  I get the chair out of the back, turn it on, put it beside the SUV, open Michael’s door, re-lock the chair because it rolled downhill slightly, un-do Michael’s seatbelt, reach under his knees and under his right armpit, and lift.  Also this time, with no shoes.  This transfer wasn’t as smooth (stupid hill) but he thankfully, does land in the wheelchair.  But, we need to do some adjustments.  So, I pull him to one side.  Then he leans forward and I tuck the back of his shirt back in.  Then I squat down to pull his pant legs down, I do NOT like to see any ankle! Then, I take his jacket out of the back seat. I help him into that, one arm at a time, then tucking it in in the back, and on the sides so the wheels don’t get the jacket dirty.  I help him back the chair away from the SUV, wipe my feet off with my dirty hands, put my shoes back on, grab my purse, lock the car, and we are on our way in.

I feel sweaty and dirty and tired, and I notice that he looks great.  Part of me thinks aw, he is so handsome all dressed up.  The other part of me, honestly, is jealous.  I wouldn’t mind showing up looking nice and feeling great.

We go inside, and then it’s the maze of weaving in and out and around a crowd where I feel like we are just in the way, and we are sticking out like sore thumbs, as we search for the one place where it is designed for a wheelchair to sit.  I’m thankful for these things, don’t get me wrong.  But in times like this – where I’m already focused on the negative – it’s just another reminder that we aren’t like everyone else.  We don’t just walk in and sit down anywhere we want.  We must sit here.  This is where someone else decided is a good place for us. 

As we navigate to our designated spot, people are moving out of the way like the Red Sea is parting.  They are uncomfortably over-accommodating, and instead of just saying hi, they are moving out of the way like someone is driving a Mack truck indoors.

We sit.

And enjoy.

Then, when it’s over, we get ready to leave.

I pull the car to another location, because I am just not feeling the lift on a hill.  Dangerous.  We do that whole transfer production again, and we are on our way.

That’s when the tears flow behind my big sunglasses.

Michael notices I’m upset.

And now I just feel horrible for ruining a perfectly wonderful day.

On the road, Michael points out a nice neighborhood of townhomes.  “Those look nice,” he says.  To which I reply “Yeah, they are. But we could never live in something like that.”

You know. Because we would need an elevator.

Michael gets frustrated.

I full-on cry.

He tries to comfort me, but I’m too busy feeling guilty to even see that he’s not judging my feelings of being tired of all of this, he’s trying to understand where I’m coming from.

Sometimes, it’s hard.  Sometimes, I still cry.   It doesn’t happen that often. Most days are fine.  Easy, even.  We just cruise along and rock this life out.

But sometimes, I just think it would be nice if we could go, get in the car, go somewhere, sit down and enjoy, and leave. 

I think it would be nice to think about the future and moving into a bigger place, without worrying about if it’s all on one floor, and if the bathroom doors are wide enough, and if he can get in the front door and out the back door by himself.  I hate thinking that we are going to be in an apartment on linoleum floors forever.

I love our floors. That’s not the point.

The point is, sometimes I step in the quicksand, and I sink.  The negative switch is flipped, then the lights are off. All I see is the darkness. Everything is harder, heavier, and I dread it all. 

This is where I need the Lord. Because, maybe I am strong enough most of the time to handle this life on my own. But – inevitably, the hard times will come.  It will be heavier, deeper, more challenging than I can handle on my own.  That challenge could be physical, mental, emotional or spiritual.  I need Him to do the heavy lifting.  Because sometimes my reserves of strength and courage run out.

And I end up crying behind my big sunglasses.