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Closer to Balance

  • Posted on June 9, 2014 at 10:07 AM

I’ve made a decision to seek balance in my life for the sake of my health, and for the sake of my family, and for the sake of our financial well-being.

As the breadwinner of the family, I need to work to win our bread. As a freelancer, I don’t get paid if I don’t actually work for my clients. There’s no paid sick leave, no vacation pay, no paid medical leave of absence for me. If I don’t work, we don’t have enough money to pay our bills and buy our groceries. We do get assistance, but it’s not meant to be enough to live on.

As the mother of three children with disabilities, there are a lot of external expectations (from outside our family) and there are even more internal expectations (from inside our family). There are wants, needs, and urgent matters. All these things demand my attention. Then, of course, there are the normal household tasks, like shopping, dishes, and laundry. There’s also the morning routine and the nighttime routine, both of which are about to change since this is the last day of school. When I can’t take care of my family, there is only so much slack my husband and our support team can pick up. I’m essential to my family’s well-being, not just our financial well-being.

As a person who is experiencing a disability, there are doctor’s appointments to attend, medications to take, and forms to fill out in preparation for appointments. There’s also sleep to get and food to eat and muscles to stretch. These are all necessary parts of trying to get my sleep, concentration, and pain levels under control. The better I manage my health, the more capacity I have, and the more I have to give to my family and my work.

All these things demand my time, my attention, and my commitment. And that doesn’t even include things like personal relationships, exercising my creativity, and watching some stress-reducing, pure-pleasure television shows (I’m currently watching Charmed for the first time).

I need to find balance. Admitting this is helping me to move closer to attaining it. I find that I stop more to question my own compulsiveness and reflect more on what is important, instead of simply responding to what is urgent. I’m a work in progress, but I’m getting closer.

Making Doors

  • Posted on February 21, 2014 at 10:00 AM

As much effort as I intend to expend on changing the tract that Alex has been placed on, the long-term goal isn’t necessarily to “tract” him at all. You see, Alex has talent. Alex has had many disadvantages and has foregone the typical art instruction children receive in the United States for many years, yet he has an extraordinary interest and talent with visual arts.

These aren’t just the words of a proud mother. I know that I have little skill in assessing any form of visual art and even less aptitude in creating them. So, the best I could discern was to recognize that Alex’s art—indeed the art of all four of our boys—is better than anything I can produce, and to recognize (from the art training I have received) certain qualities that seemed rather remarkable. But, even to me, this didn’t mean much. So, I obtained the opinions of others who have more skill with assessing and creating visual arts. Turns out, I wasn’t wrong. In fact, the reactions I’ve gotten to Alex’s artwork (not to mention the other boys’) has been quite enthusiastic.

Now, as a professional writer, which is a form of art, I know how difficult it can be to make a career out of a talent and interest in a particular art form. Even when you have the advantages of encouragement, advanced schooling, and more or less “normal” interpersonal skills, advancing a career in the arts is a huge challenge. Many people try and more fail than succeed. The automatic conclusion is that it would be ridiculous to pursue such a path for Alex, because the odds are very much against him.

Yet, I also know that there are people with disabilities, even profound disabilities, who do pursue art as a career and do succeed in their endeavors. I also know that Alex experiences joy when creating his art and he experiences joy when sharing his art with others. Now, Alex experiences joy doing several different things—watching videos and swimming are prime examples. But art is one of the few things that he experiences joy when sharing it with others. This is significant in ways I can’t even articulate. If you get it, good; if not, well, then, I guess you’ll just have to take my word for it.

So, yes, the odds are long. Yes, it’s not something that will earn him a living right out of school. Yes, it’s something that will require special support just to make it possible. But it’s worth it. It’s worth pursuing. It’s worth it, because everybody deserves the opportunity to at least try to do what they love for a living.

So, you see, I’m not just looking for backdoors to open up a more acceptable tract for my son. I’m going to make the doors he needs to do what he loves.

Under the Weather

  • Posted on October 7, 2013 at 10:00 AM

The days are turning colder here in Wisconsin. The storms are passing through. Often the clouds rain down their cold on us. Even when they don’t, I feel the pressure in my head. Combined with a sinus infection, the extra pressure has certainly gotten me down.

So begins autumn in Wisconsin. I keep scrambling to keep up with my workload, but my body demands rest. The effort to keep myself on a schedule consistent with the day/night cycle is too much. I need to work when I can and sleep when I must, which seems all too often.

I’m hoping this dose of antibiotics, combined with my body’s insistence on rest, will help me recover. The best I can say is at least I didn’t wait until it had turned into bronchitis. The doctor was pleasantly surprised to find the infection hadn’t settled in my chest. I didn’t bother to tell him that I usually wait several more weeks before I bother coming in.