Thursday, March 26, 2009


Cierra is seven and has always said funny things without having a clue they are funny. On Sunday she was sitting on the couch between Megan and me listening to our home teachers (Charles and Caleb Johnson). Since she moved to New Mexico 3 months ago and is here for a visit Charles started asking her a few questions. She decided since Mackenzie was not in the room she would divulge one of her big secrets. The conversation went like this:

Cierra: Mackenzie wants to move to Vermont and be a hobo.
Charles: Why does she want to do that?
Cierra: I don't really know. But did you know that I used to have hobo money?
Charles: What is hobo money?
Cierra: time I saw a hobo while we were driving in the car and I had some money. So I decided that the next time I saw a hobo I was going to give my money to a hobo. That is why it was called my hobo money.
Charles: How much money was it?
Cierra: I'm not sure but I think it was alot like maybe two dollars.
Charles: So did you give it to a hobo?
Cierra: Well....I was going to give it to a hobo if I ever saw one while I was on a walk. I always kept my hobo money in my pocket just in case I saw a hobo. But I don't have my hobo money anymore
Charles: What happened to your hobo money?
Cierra: Actually I spent it. I don't remember what I bought but it was something for myself. So my hobo money is all gone now.

Of course by this time everyone was laughing but Cierra. It was a very serious subject to her. I love the way kids think and the things they say. They just make every day better.

Cierra is my little trooper. She was having complex partial seizures for months before being diagnosed with epilepsy last August. There were times she had up to 30 or more seizures a day. She is doing better on medication but continues to have to deal with some seizures and all the discomfort and complications that go with them. Epilepsy has changed so many things in Cierra's life but she never complains (except about the taste of the medicine) and handles things like a pro.

My Christmas present from Cierra last year. It was not a joke.
She was totally serious about the gift.

Cierra just being Cierra

Swimming at night. So much fun!

Sunday, March 15, 2009

I made my bed today!

So I'm sure everyone is thinking "no big deal". You all probably make your beds everyday. I haven't made my bed in a long time because I spend 70% of my day there. But since I am coming to terms with the fact that I have a chronic illness I am also having to accept that I have limitations. Almost every night for the last 3 months I have gone to bed thinking I will feel better the next day and I will be able to accomplish amazing things. And every morning about 5 minutes after I get up I realize that my thinking is positive but my body is not cooperating. This, of course, was starting to be a big problem because I was so frustrated with what I could not do. So a few weeks ago I decided that I had to quit beating myself up for how I felt. Chronic Kidney Disease sucks and it has drained all my energy. That doesn't mean I'm giving up it just means I have had to readjust my thinking. So now I try to set a few small goals every day that are reasonable. And if I even get one thing accomplished then I feel like the day has been successful. But for the last 10 days one of my goals every day has been to put clean sheets on my bed. And every day it hasn't happened. First one corner of the bottom sheet started coming off and I thought "no big deal because I am changing those sheets today." Then another corner came off and all of the sudden my sheets were half way down the bed. A week later I saw that my sheets were hanging off the end of my bed. Sonja I know that you are probably really grossed out at this point because I was just sleeping on my mattress. I really cared but the tiredness and pain were so intense that I just couldn't make myself do it. But today I did it. I put new sheets on my bed and made it look all nice. And it only took about an hour. I had to stop and rest a lot but I finished it and that is what's important.

So I took a picture just to prove I did it. It won't look like this for long because I will be needing another nap in a few minutes. Suri was happy with the bed because she will only lay on it when it's made. My cat even has higher cleaning standards than me right now. That's a little pathetic.

And if you were wondering what I look at while I'm laying in bed: It's TINA TURNER! She's everywhere in my room. Tina is my hero and has been my inspiration for years. She has had so many obstacles to deal with and has come out on top in spite of her past. Besides the fact that she's a famous singer, has millions of dollars, lives in France and practices Buddhism we actually have quite a bit in common.

Okay there is a slight possibility I am a little obsessed with Tina Turner because there is a lot more Tina stuff in my room that I did not take pictures of.