Busy Week Ahead!

   This week is going to be super busy! I have to make lesson plans for both Kaitlyn and Tristan because I have been completely procrastinating on that all summer. With all that has been going on, I just never made the time. Kaitlyn will be starting her second year in home-school as an 8th grader (where has the time gone?) and Tristan will be starting his second year as well but as a 6th grader. I have to find balance when teaching them both and our normal school day usually lasts longer than a typical school day. I teach them Religion, Science, and Foreign Language together and then I have to separate the rest of the subjects. I absolutely love teaching the kids. The time I get to spend with them is priceless, and I don't have to worry about state-regulated exams or attendance issues when they are sick. Better still, I don't have to worry about my daughter being bullied and the school system doing absolutely nothing about it. And believe me, I have battled with them since she first started school.
   My daughter has a mild-form of Cerebral Palsy which causes her to be blind, she cannot run or jump, and she has a significant amount of brain damage due to her disability. Her form of Cerebral Palsy is called Kernicterus. It happened at birth due to an extremely high bilirubin count (Jaundice). She is different and in our society, people are afraid of anyone who is different. I hated sending her to school. She would refuse to get on the bus because of how badly she was bullied. Our children should never have to fear school...but she did. I was tired of fighting all of the time with the school system. I was tired of watching my daughter dread going to school even before the school day would come. Because I went to college to be a teacher, I felt fully qualified to teach them on my own...and it has been the best experience ever. Sure they miss out on social events but, I know my kids are safe and are getting an education without the worry of being harassed for their differences. There is no way children can learn when they are in constant fear.
   Tomorrow I meet with my cardio-thoracic surgeon. I dread tomorrow. I know it isn't surgery day, but, an open-lung biopsy is considered an extremely major surgery and I would be lying if I said I wasn't terrified. Tomorrow is a big day. The reasons I have to have the open-lung biopsy are: To diagnose my auto-immune diseases more accurately and the treatments for vasculitis itself involve substantial risk. This is why this procedure is EXTREMELY vital in my treatment plan. If only one of my doctors suggested me getting this procedure done, then I would probably say no to such a high risk surgery. But, all of my doctors, including my Rheumatologist, agree that this is the only way for me to get continued care. 
   One piercing piece of identity wisdom that I was given when I first got sick was: "I have pain. I am not my pain." You have an illness, but you are not your illness. Over time, it can become easier to lose your sense of a being that is bigger than yourself as a being that is bigger than your illness. I have to think of roles to wrap around my identity to help me accommodate to shifts illness may require of me. I sometimes have to change roles to cope with the demands of my illness, but I retain the essence of self that extends above my illness.
   Illness, as those of us who live with it know, is fluid, even capricious. Periods of stability alternate with periods of relapse. That's just how it is. Yesterday, I had an extremely good day and today, I am in bed with a high fever and vomiting. As your illness changes, the "before" and "after" become part of the rhythm of your lives.
   It can be so hard to find the goodness in being ill. It can be overwhelming to stay positive and wait for that good day, hour, moment to arrive. And, once it has arrived, it gets harder to hold out hope that you'll get another. That maybe next time it will stay just a little longer, that slowly you may get better.
   Then, there are those of us who will never get better. Or those who will get better, then sick, then better, then sick again. How do you keep hope alive? For me, it is a gentle flickering deep in my soul. It is the look on my three angels faces every time they tell me they love me. It is the adoration and the constant stares that I get from my Kevin every single day. It is the daily conversations with my mom...and it is the amazing friends that I have been lucky to acquire. They are my hope...like the stars that flicker in and out of the darkness of the night. Keep an eye out for these stars. They are not as bright and obvious as the sun, but they are equally as beautiful. Equally as precious. Love your life...no matter what obstacles or challenges you are facing...simply love your life.