His Gift

I am trying to decompress.

Yesterday was rough. Very tough.

Dad is okay for now. His nearly 10 hour VT ablation, is over. He was the first one to go back for the day & the last one to go to recovery. Not wanting to lie, there were complications - the kind of complications & close calls that no one ever wants to hear.

Bc of the complications & the sheer stress placed on his heart, the doctors decided that they would not change his defibrillator. That would just have to wait for another day, hopefully in as little as a week or so. There is also talk of placing a different type of defibrillator in, one that would be better suited for dad's needs.

Even though he is still in the hospital right now, there is talk of releasing him tonight, which just seems crazy to me given all that has happened. Although I'm not certain, I am wondering if they are going to release him bc they know that there are plans for his return in very near future. And if there is no sign of trouble after they observe him, maybe it's okay, right? I wish I could be certain. The only thing that is for certain for now is that my dad & those who love him, have been given a gift.

Yesterday, hours before I was to leave for the hospital, I was unable to sleep. I had called it an early night & was startled awake by Pee Wee when he jumped of the bed. I had tried everything to go to sleep. At the time, I had only been asleep for almost two & a half hours.

I ended up calling Rachel & hung up when the alarm clock sounded that was intended to wake me. Conversations & phone calls like that are not strangers to either of us. I told her I was not worried about my dad. I did have some anxiety & concern, but I was not worried.

At some point in our conversation I said to her, "Regardless of the outcome, my Dad will be okay." I wasn't just saying that. I meant it. I mean it. I mean regardless. I can't explain things to where most people can understand. Does that mean I want him to die & if he does die, I won't be devastated - no, not at all. He is my father. He is my dad. No one in their right mind would willingly want that.

What that statement means is that perhaps more than ever, I realize that things in this universe is so much bigger than me. This isn't new. It always has been.

I was alone at the hospital for hours. For the majority of the day, there was calmness & certainty I felt. Even through knowledge of the complications. However, as the day went on, & hours ticked away, I became a little more frantic & frazzled.

And pissed. Yes, I was pissed. And even though I was angry, I was more hurt than anything. It wasn't the fact that I was at the hospital alone, by myself for the entire day... I knew Jake had to work. I was & still am perfectly fine with that.

What I'm not okay with - what doesn't sit right with me - is that he did not call, not even once, to see how I was, to see what was happening or for an update. And not only that, but when I called him to give him an update, he started ranting & raving about this & that pertaining to his day at work.

{Ummmm, Honey? I know I'm your go-to person. I know you got a lot going on. Your day is not going so great for you, but now... right now, I can't do this. I can't have you answer the phone & the very first words out of your mouth is a rant. Not, how are things going? Not how's your dad? Not how are you? What ever you need me to be, I can't. Not now. Really, it's not all about you.}

I have concluded - even through my anger & being hurt by his actions - that they're are just some things that he doesn't get. There are just things that he just can't do. Why? Bc much like I wrote about here, Jake just can't give me what he doesn't have. He just can't do better, bc he doesn't know better. He does stupid things sometimes, but so do I. Jake is human.

Still, as alone as I was, I wasn't. I had friends, phone calls, & text messages. And those calls & messages served a great purpose. In fact, I had one friend who just blew me out of the water with her words & support, but that is truly a story for another day.

Today, I am just so thankful. Filled with gratefulness. Appreciation. And in awe at the love, grace, mercy & embrace that God has chosen to gift to me.

Fun

{Note: As painful as it may be for me to leave this post in it's true unedited form, that's how it's staying... To stay true to myself & the state of being, at the moment. Oh, and note to self: Maybe e-mails shouldn't be the only things to stay unwritten in sleepless states.}

It's 3 AM Thursday morning. We have to stop meeting like this. My husband leaves for work in 3 hours & the only thing that is beside him is the dog. That's what you get when you have an insomniac for a wife I suppose. And that's a damn shame.

I wonder if that ever bothers him? A while back when he worked for another company & on the night shift, it drove me crazy him not being here to sleep beside me. You think I have trouble sleeping now, you should have seen me then. I would go weeks without sleeping. You think I'm kidding.

Now, Jake - he's a different story. He can & would sleep standing up, if I let him. He has had no trouble what so ever falling asleep - as soon as he head hits the pillow. In fact, it took me longer to type that last part of that sentence than it takes him to sleep. I counted once. It wasn't even 3 seconds. Seriously.

My inability to sleep gets worse with worry & stress, something that I fully admit I have not had a handle on lately. I wish I could say I did. I feel like I'm rambling with long draw out sentences. I often repeat myself & talk in circles when I get like this. Oh, did I tell you that I got less than a hour last night too?

I'm trying to resist the urge to write a email to a friend of mine. I have a bad - I mean really bad - habit of writing e-mails when I'm exhausted &/or emotional. It's such a bad combination for me. Although I do try to live life with out regret, sometimes I regret doing things when I am in a state like this. It's as bad as if I were drunk. Can you just imagine?

So tired that if I actually tried to walk, assuming that I walked like I used to & wasn't stuck in this stupid chair, I would fall over. You know, I actually had some dumb guys say to me a few weeks ago how fun it must be to ride around in a chair all day. Are you freaking kidding me? Now, these guys were like early 20s. Old enough to know better. Oh, I'm sorry... What's that you say? Common sense & tact doesn't come with age? Go figure.

I guess it would be fun for them. They can get up & out of it whenever they want. If they can't reach the food in the refrigerator or the dishes in the cabinet & they have to use a reacher that is not only always getting misplaced (yes, all 4 of them at once, at times) bc some adults can't tell some children that those are not toys or better yet, when grown adults use them to reach trash under beds that Pee Wee gets into bc someone can't take the 15 minutes it takes to make a holder for the trash cans in the house that would raise them not only out of Pee Wee's reach, but put it in better reach for me.

Or how about the friends & family's houses you can't get into bc you used to walk, but now need a chair & even when you can get into the door you better pray that you don't have to go to the bathroom bc it's up a flight of stairs, so you not only start worrying about it the day before, but also, have to restrict your fluids so you don't have to pee, which

A) causes a lot of commotion & trouble just trying to get to the toilet,

B) you must drag the portable commode in your van (don't forget the TP), so if you got to go, you can go in there,

C) you have to leave the party early to either call it a day & go home before you have to pee, or

D) leave the party find the nearest public toilet, then decide if you want to go through the hassel of getting back in to the party!

When, in reality, all you simply want to do is spend time with your love ones & take some damn pictures. Oh, but wait, what's that you say? You didn't even get invited to that party bc someone assumed that you couldn't find someway in or some way around those steps to get access to the party or the bathroom, so they just took upon themselves to rudely exclude you rather than invite you anyway & let you decide what you can & can't do & if the hassle is worth it.

Yes, sir! It is so fun being in this chair. Bc why wouldn't it be? Then you just wouldn't have to use the two good healthy legs that God gave you. You could zoom around all day long have races with your other wheelchair buddies bc, you know, that's what I do with my time. When I'm not sitting in some field trying to watch my nephews play soccer, and go it move, but... wait, call your friend over (you know the strong one, who uses his God given legs) bc your stuck in the mud bc the ground is soft from it raining 3 days before - & normally if you were walking you wouldn't notice, but the longer you sit in one spot, the deeper the chair sinks bc of the weight.

So keep looking. Seriously, take a good long look at what fun this chair is. Go ahead. Look. And while you're at it, take your freedom for granted. Bc, well... you know... there's nothing better to do.

Frustration

That's what I have. Frustration. Lots of it.

Last night I attended a support group for physically disabled adults, which is so new it doesn't even have a name yet. Last nights topic: budget cuts. The easiest way to explain this is there are two programs:

DDA: Provides long term support services for the disabled. The waiting list is forever long (some wait 5 years or better) & priority is based on need. I'm on the crisis resolution list, which are the people who are next on the list to get services. I've been actively waiting for services for 3 years now.

Rolling Access: Provides short term support to people while they are waiting to get DDA. Services not to exceed $3000 in a fiscal year & consider your self lucky if you get the full amount.

Things RA money has gotten me:

Someone to come in, knock down & reconstruct walls in my house, so that I can better access my bedroom with the wheelchair I'm sitting in - which is nothing like the one I had before it.

A grab bar so I can have better assistance in the bathroom, which allows me to get in a out of the shower independently & safely. Something I had to depend on someone else for until I got the bar.

An automatic door opener for the front door. This allows me to freely open and close the door independently & easily. This allows me to get out of my house swiftly in an emergency, & do other things (that people take for granted) like get the mail, walk the dog, go out on the porch & read, go to the van. You get the picture - it basically allows me access in & out of the house whenever I want. Another example of the services that other people who have the money do is they may choose to use it on respite care, like having aides come to the house or go to summer camp.

What's next on the list of things to get done for me? A door opener for the back door. These are not big things, but they are life changing. And they ARE big to me. They are not only big, they're HUGE.

My frustration? Budget cuts. Big changes. Changes that don't effect long term support people (who get a 2% decrease) in they're budget, at least not YET. Example: Someone that gets $10,000 a yr will be reduced only $200. While short term people (like Me) get NO MORE support. In less you count the ONE time in a LIFETIME support, not to exceed $3000. That means if you got a $250 grab bar, sorry about your luck.

Oh, and that waiting list - yeah, sorry about your luck on that too. We're not excepting new people this year.

These effects (plus other changes that re complicated & I won't go into for the sake of this blog & my sanity) take place Nov. 1st, only a few short weeks from now, which may allow me to get a door opener for the back door. The question still remains if that will be my lifetime assistance. I have no clue.

So, sorry this is long, but I had a lot to say. As I go about my day, I'll remember to breathe & try not to let frustration get the best of me. And I hope that as you go about your day, you don't take the slightest thing for granted.

Spring Cleaning

I know it has been a while since my last post - it just so happens to be one month exact. It's funny how that happened by chance. Things have been wonderful but crazy here at the same time. It seems that as each day passes my life changes in some little way, which is not at all a bad thing.

Spring has arrived here in Maryland. The dogwood tree out my bedroom window is budding. The days are beautiful, with sun and blue skies, but it is still cold and chilly at times. Signs of change are among us. I must confess that as the world around me is changing, I am changing just as much - or even more - on the inside. I am not the same person I once was, even a few short months ago.

A few days ago, I was in a frenzy - a cleaning frenzy. I had had enough. It's all gone. All the clutter is sorted, purged or put in its proper place. Finally, my stuff and space is respected. It's all clean now, in my bedroom and office at least - afterall these are the parts of the house that I can control.

This is how it was meant to be - always. I have found that if I am a mess on the inside, my outer world reflects the same. I assume the oppisite is true as well.

I feel relaxed and at ease most of the time now. I cannot wait for our first official cookout, even if it's only for the family. Or to take the kids to the park. There's this park I like to go to. It is the only park that is 100% wheelchair accessible. I can even go up ON the play equipment power chair and all.

The whole playground has a ground made with recycable tires and they have two playareas: one for big kids and one for little kids. They have a awesome educational Nature Center and even accessible hiking trials.

I take my nieces and nephews there all the time because it is where I can fully interact with them and they love it there. In fact, they have already asked me weeks ago, despite the snow, when am I going to take them there.

One day, Jake and will take our children there too. One day.