Summer is a time of adjustment for our family. Damon is home all day, all the time, and it is hot! I love having Damon home, but when he gets bored, I never know what to do with him. Benjamin is going a little stir crazy, and right now I wish I'd had the foresight and the money to rent a house with a pool. We'll just have to set up a little one in the backyard, and hope Benjamin doesn't play in the mud too.
The 4th of July was spectacular. We swam, had chicken and rice (Benjamin's favorite), then we watched fireworks. We live close to Alliante station, so we found a nice spot in a nearby desert area, and waited. Benjamin is bad at waiting, but our fellow fireworks viewers set off lots of little ones for him to watch. We could also see hundreds of fireworks being set off all over the Las Vegas valley from where we were. It was pretty amazing. Alliante did a great show that I would love to see again. Benjamin loves the fizzy ones, and Damon loves the white ones that boom through your bones. I like the ones that zig zag across the sky. We even saw a few heart-shaped fireworks, which was awesome.
Me not working has also thrown our budget out of whack. We're trying to get me disability to help with medical bills, but we have to adjust to a lower income, and that has been another interesting dilemma.
Benjamin is adjusting to being the only child again. He adored Kindergarten because he had something to do, and his friends were there. I never thought I would say this, but I can't wait for first grade to start. He'll love the structure, and the interaction with peers, and I won't have to arrange any of it. Thank goodness he's signed up for some HWK classes this summer. He'll do a little Broadway, and then work on his dancing skills. He sometimes doesn't like to go to the classes, but he loves to perform. This last performance he was a little nervous, but he still went out there and did a great job. Hopefully I'll have the energy to help him learn his part better this year. Last year I taught during his class time, and so I didn't have much to do with it, and I think that was harder for him. The one blessing of not being able to work is that I have more time for him. He's growing so fast, and I don't want to miss one minute.
Finally, I am adjusting to my new medical state. My neurologist said that all signs point to MS, or Seizures or both. She is sure there is an autoimmune connection, and is willing to treat me as an MS patient, but since I'm going to UCLA, we're waiting for them to confirm the diagnosis, or maybe come up with something better. In the meantime I am doing all kinds of exciting tests to help speed that process up so when I get there, we'll hopefully be able to avoid a lot of extra testing. My new neurologist is awesome, and I adore the fact that she'll spend the time reviewing my history, and going over everything in great detail. I also am in love with the fact that she is willing to treat me "as if" and see if it works. Not one doctor has been willing to do so. If the treatment works, then the diagnosis is probably right.
I have been analyzing my life lately. If I am diagnosed, and successfully treated, I could possibly go back to working. It doesn't solve the fatigue, and fibromyalgia issue, nor does it address the fact that flare ups will make me unreliable. Regardless of what I choose, I cannot work full-time without getting really sick. So, the question is, do I finish school, and power through the internship? Do I return to teaching music, knowing that I won't always be available for my students, when consistency in practicing and lessons is so important? Do I find another job that I can do here and there to provide us with income. I might look into substitute teaching again, but that drains me for days afterwards.
I think I have come to the conclusion that I am done working, and I've had enough education that if something happened, I would be able to get a decent job. Not that I could do it, but I have the education and background, or could get it quick. Mostly I'm enjoying the benefits of being home with my son. I never realized how much I was missing. I want to have family dinners, and to actually cook them and sit down and eat together. I want to be more involved in Church and to be someone who is home and available to provide service. I want to read all those books, and do the crafts that I've put off for other things, and mostly I want to draw closer to the Lord and focus on the spiritual things in life for myself and my family. Somewhere in our business that got lost.
I am a perfectionist, and I love to be busy and doing. This illness has forced me to literally lie down and reconsider my priorities. I want to leave a legacy, but I can do that in so many ways. I would be a great counselor, but I would rather help and love my friends and family. We have enough money to meet our needs. Our budget is tight, but then so is everyone else's, and if I'm careful, and learn to save here and there, and cook more, I think we can have a brilliant life without me feeling the pressures of work and school. Besides, the reduction in stress will help me to avoid flare-ups.
I do need to be busy though. I need to find meaningful ways to use my time, and give myself permission to rest and be sick. I want to be one of those inspiring sick people if I have to be a sick person at all. So far, I just feel angry and whiney. There are so many choices in life. I just want to know which choice is right, and best for me and my family. A diagnosis would go a long way towards helping me make these decisions, but part of the journey is learning what is most important, and where my focus should lie regardless of my circumstances.