Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Thursday, November 13, 2008

It is What It Is

Have you ever had to put something in writing and once you did, it became real? Let me explain.

Sometimes, I can think about many things and they remain airy, little bubbles of thought. They could be dreams, real or pipe, fantasies, vents, frustrations, etc. They could be the budget I want to live by or the to-do list I made up this morning. But as long as I don't put them down on paper, it seems to not be real to me. Maybe real, but not permanent. I get to say it was a just thought or a passing piece of whimsy.

Maybe that is why I have been very hesitant to write just anything in my blog. I know journaling is to get your thoughts on paper. But we all know that if we found our childhood diary, how those thoughts no longer even look like our minds today. We would laugh and think that we were quite crazy to be so upset at our parents, or so loony over that boy. Maybe, we don't even see that to-die-for best friend from that time anymore.

Well, today, I am going to put down some things in my life that are fact and are pemanent. They are what gives this blog post its title. Bear with me.

1. I am going blind. Very slowly, but definitely perceptibly. Every year means more loss of sight. I pray I will get a provisional driving license next year. But after those four years, I will not drive anymore. I will be 48 then.

2. I am having more trouble hearing. I have dealt with this my whole life. I did not even put it in my profile until today. I will one day be very hard of hearing or deaf.

3. I am weaker and frailer every day. Joints, muscles and energy don't even support cleaning the house in less than two days. And that is with my children helping me. Chemical sensitivities fill my lungs with mucus and cause headaches and dizzyness. I am now struggling to be a homemaker.

4. I have two children who will be collecting social security benefits. Today I came to terms that I will be filing simultaneously for both of them this summer.

5. My husband is a very damaged person. He has too many fears and anxieties, too little self-confidence and self-reliance. I must become the leader in almost all things for the future of our family. He is not even capable of being a partner. I see that I will have to take care of him.

6. I will probably struggle with money for the rest of my life. The medical needs of the members of my family will be extensive. There will be nothing left after we are through except a special needs trust set up for both my boys. What will be in it, beyond the life insurance, I couldn't tell you.

And finally, from today, I no longer measure success in career ladders, climbed, avoided or left behind; consumer goods stacked in or out of storage units (including flat screen TVs); houses with echoes; extensive investment portfolios; spotless counters and floors; new car smell or old lace and silverware. No more life measurements through clothing, collateral, perfectly manicured lawns and flower beds, or any other superficial earth-bound thing.

From today, I count success in smiles through pain and weakness; dinners eaten together without a fight or anxiety; uninterrupted sleep; the taste of a good, filling meal; laughter, loud and raw; moments of mental clarity and physical strength; sights of strong color; sounds of harmonious music; the knock on the door from friends. These and all other eternal things will be my holy grails, my mantras, and my sustaining life goals.

It is truly what it is and what it will be.