This past weekend visit with my kids was a complete disappointment. I was so exhausted I was planted on the couch most of the time I was able to be home with them. Much of that time I could hardly keep my eyes open. To top it off, I worked all day Saturday, which probably has a lot to do with me being worn out on Sunday.
Exhaustion: it's one of those hidden, non-motor symptoms of Parkinson's. One of those symptoms where people say comments such as, "You look fine." If they know you enough they see the exhaustion in your face. I feel blessed to have had the many friends at work ask me if I was feeling ok. It means they've come to know well enough to tell something is different as well as show their concern.
My concern though, is that I short am changing my kids and our relationship during the limited time we get together on their weekend visits. I'm going to have to adjust my work schedule again. There's no doubt about that. Working all day long on Saturday is just too much for me. Besides, after only getting to spend the better part of Sunday with my kids after church on my weekends I want to anyway. That's just not enough quality time with them.
My oldest didn't feel well, so he laid around most of the time as well. My two little ones though played as normal. I feel guilty watching them play outside and run around. You would think I would be able to just suck it up and join them. But the exhaustion and fatigue is relentless. Parkinson's exhaustion is not the same as that of without Parkinson's. It is a deep exhaustion so life draining, the idea of collapsing is almost appealing. Rolling your body over to one side takes more energy than you have so you refuse to even try. Even holding your eyes open takes more work than you can muster up.
And even more guilt ridden, I see my wife do all the work all weekend while I sit or lay on the couch. She does a great job while I at the most ref an argument or show my "ogrely" daddy rule enforcing self.
I get cranky and do my best not to get snappy. Most people get cranky when they get fatigued. Try not to be pissed at your chronic illness when it's the cause. You go through the stages, Parkinson's has 5 and I differentiate among 3 and 4, except you go through them over and over, every time it flares. The exhaustion is a reminder of each one. I get angry and disappointed.
I understand no parent can protect their child from each and every disappointment. Like the little things we adults try to convince ourselves of when we quote, "Don't sweat the small stuff." But when I see the disappointment on my son's face when I tell him for one reason or another that I can't ride bikes every single time, I could make a list of the negative emotions I feel. We have other activities we enjoy together. Mostly sedentary. Not the active one's we would like to do. But none the less things we can do.
The more I involve myself with others dealing with Parkinson's I've learned it comes with this oppressive chronic condition and it knows no boundaries. When it comes to exhaustion we bear the burden of the following, all of which lays upon us a heavy weight of guilt.
- Not being physically able to do "everything" all other Fathers can do
- Not being emotionally stable enough-due to slowness, tremor, instability-to handle loud or hectic days-resulting in outbursts, short tempers or actions; all of which I'd love to take back
- Sometimes physically unable to run, play outside--usually it's a choice I don't have a say in where to expend my energy, work or play
- Sometimes I live in a "fog," simple tasks like reading and writing are difficult, which is why it takes me so long at time
These things can wear me down. Most of the time I can do a good job of burying it and pretending it doesn't affect me. Out of 5 only one of my kids reacts out of concern. I feel as if I give more of myself to my job than I do my own kids. Rest at home to expend my energy at work while the kids get deprived. And I as well. Deprived of their time and presence.
This is no "poor pitiful" me. My concerns are the kids. It's always about the kids. They are young. Exhaustion is invisible. I can feel it. They can't see it. They live with it just as much as I live it, but in a different way. Quite the contrary is it feeling sorry. I had my time when I let things get me down and that was in the past.
Instead of beating myself up for being sick, I should will use it as a parenting advantage - not to beat myself up over it. The fact is, given my personality, I wonder if it wasn't for the Parkinson's if I wouldn't be as engaged as a father. After all, it is because of it that I'm lucky to be a stay-at-home dad.
There's a saying, "The days are long, but the years go by quickly." I haven't been a parent long. My oldest is 11. But gosh, 11! It wasn't long ago I was rocking him to sleep, or rocking my middle one, or changing my daughter's diaper. And I can't believe my wife and I have been married over 4 years now. So I must engage myself in my kids lives in the here and now and not worry about what might or might not be.
I don't stress a lot. I'm not a stressor. I do like to prepare for the future. For a long time now I've been trying to get my wife to start a savings for emergencies and one so we can move out of this town. I prefer to plan meals a week ahead of time. We all have medical and life insurance. And I don't worry about our future. What I do worry about are our relationships. Maybe I worry too much about them instead of doing something about them.
You could ask me, "Do you think you are a good father." I don't know. I try to be. I guess I would answer, "Ask me when they are 20, I won't know 'till then."
