Day 698 - Apr 27, 2010

Today we actually made it to the movie - YAY! It was a pretty decent movie and we both really enjoyed it.

That's pretty much it for today though. We really didn't do much else.

This would be my normal post of the day. Sounds pretty boring and easy, huh?

I had a long talk though with one of my friends today - someone that I haven't spoken to in many, many months because there is just no time for me to be on the phone with my friends/family. She told me that although she knows the reality of the situation - I am painting too rosy of a picture and others are not seeing it clearly. I am letting people believe that we have 'boring' days when truthfully, our boring is nothing like your boring. I am letting my friends/family/readers think that we are living some kind of wonderful life when you couldn't be farther from the truth.

I never really thought about it that way. Mainly because, in order for me not to have a nervous breakdown about how horrible our lives really are, I NEED to stay positive. I HAVE to end the day thinking of the half hour or so of good moments we had. Yes, the HALF HOUR or so of good moments.

You see, when I say we had a good day, in truth that just means that for 30 minutes (or whatever short amount of time) of the day Kevin and I were normal - your normal - not ours.

This, my friends, is what I could be writing. What REALLY happened today:

I finally fell into bed at about 5:30am. Kevin just doesn't sleep and although I try to stay up with him, I just couldn't stay awake any longer. And I wish I could just fall asleep immediately - you would think I could, but I never can and many nights I don't sleep at all.

I lay there thinking about my parents and my dad's cancer, about money and how I am going to survive if this bill doesn't go through quickly, about how much I miss my friends and the ability to just jump in the car and go somewhere. I toss and turn trying to find ways to help Kevin get better faster. Or even to get better at all. I cry because I don't want my son to go through what he is going through. I hate that he is in CONSTANT pain - and it never goes away (there are just varying degrees of it). I think of Breezy and how devastating this was for her and how many days she can't bring herself to smile - even with all of the positives in her life right now. I think about how people assume they know what we are going through, but really have no idea. I sometimes am too angry to sleep - not at Kevin - never at Kevin - but at the system and my constant need to fight for everything.

All of this - and it's still technically the night before my day even begins.

So I did probably fall asleep somewhere between 6 and 6:30 and I got my first phone call at 7:13. It was Kevin. He needed his fan turned to speed 1. I zombied it to his room and took care of it and crawled back into bed. I got more phone calls at 8:26, 9:15, 9:42 and 10:28 - none of these Kevin. This was a good day as sometimes it rings non-stop.

I did just stay up with the 10:28 call and started the day. Kevin was up - I don't know if he ever went to sleep or not - probably not. Since he heard me - the MOMs began. To throw some hilarity into this situation - here is what Kevin is like:



Sadly, it really is a lot like this.

So we were going to go to the movie and I got Kevin up and moving. He went into his closet to pick his clothes and I jumped into the shower. Within 4 minutes he was screaming in pain so bad that I could hear him over my running water. So I jumped out to get him some pain pills and then I jumped back in, finished conditioning my hair and got out and dressed.

At this point, I didn't figure we were going to the movie. We needed to leave in 30 minutes to get there comfortably and Kevin takes A LONG TIME to go anywhere. The movie theater is 15 minutes away and we need to leave 60 minutes before the movie starts.

So he lay in the dark in his room and after 30 minutes the pills still didn't help his pain at which time I gave him some Tylenol to help the oxy's along. It was already time to leave. About 20 minutes later, Kev managed to get up and get ready to go. It still took him another 20 minutes to dress and brush his teeth and by the time we made it to the car the movie was going to start in 20 minutes. He still wanted to try to go because it had been 3 days since he left the house and he was going stir crazy, so we ventured out.

I only had to pull over 1 time due to his nausea and since we have these tablets that dissolve under his tongue to combat that, we popped one in and away we went. He was still sick, but we made it without any vomit. Huge sigh of relief.

I dropped him off at the curb and went to park. He was still only halfway to the door by the time I was done and I ran past him to get the tickets. I also went to the counter to get his ice cream and drink. By this time he made it in and I pointed him toward theater 17. As I juggled everything, we finally managed to get to the right theater and it only took about 6 minutes or so to walk there - roughly 150 steps. Do I complain? NO. I just patiently walk beside him. I am so proud that my son CAN walk to the theater by himself. A miracle - and we all know it!

(he moves much slower without the plate)

Once we got in, we have to go all the way to the top and we have to sit at the right of the theater. If we aren't at the top and to the right, Kevin can't see the whole screen. Losing half of his vision has created a whole bunch of situations that you wouldn't normally think about.

(and thank goodness there are always so many previews! by the time we got situated the movie was just starting!)

After the movie, we got back in the car. We took more pain pills and headed to Walmart. Kevin stayed in the car because he was too sick to get out, but he demanded ice cream - our whole reason to be at WM. He wanted more at the theater, but we just can't afford it at those prices.

So we did get home without mishap and Kevin immediately went to his room. The MOMs are still continuing and will until I drop into bed. We got supper and Kevin actually was able to stay at the table long enough to eat it. He usually can't sit that long and he ends up eating an hour later in his bed (after his head has stopped hurting so much). I should also mention that I can't cook anything that requires me to stand at the stove. Kevin needs me constantly and I would burn it all if I had to stir anything all the time.

So I guess I just wanted everyone to realize that although I say our day was great and/or boring - it's in our way, not yours. I grab hold of small bits of the day and try to focus on them so that I can get out of bed the next day. Those moments are something precious to remember. It's either that or I can repeatedly think of all the MOMs and the suppositories and the crying and need for so many medications and the screaming in pain and the ball and chain keeping us in the house and Kevin's inability to talk and really - I could go on an on.

But let's not, ok? Let's just say that we went to the movies today and it was a great day. We had ice cream and popcorn and sodas and for ninety whole minutes we were mostly able to forget what happened...