Saturday, October 2, 2010


I know I have cute children. Some days I have to work harder at reminding myself of this. On the more challenging days I sometimes find myself wondering how I would react if I was observing them for the first time. It is then much easier to smile and be amused by their strong personalities and unique quirks. I find myself needing to do this when overwhelmed and tired, which has become the new norm for my life.

I've titled this "tired" for both Amanda and myself. School is in full gear. Keeping up is a challenge. After juggling and experimenting with activities and what she can keep up with, I've had to remind myself why we keep it simple. The headaches and vomiting have increased. It is her body's way of letting us know that it is exhausted, or fighting off viral bugs. There is no running to piano lessons, soccer, or gymnastics at our house. There are few if any movie outings or days at the park. Amanda is rarely involved in running errands or heading out to the store. All energy goes to school, homework, and a little bit of socializing. That is how it will stay for at least another year. She doesn't always know what she is missing, but it is discouraging when she does. It is just a season of our life. Seasons eventually change.

I've been on a reading kick lately. I really enjoy reading about scientific discoveries and research. I've read some great information pertaining to childhood cancers. I could write an entire blog entry on the interesting facts I've learned. But what stood out was the section on caretakers and the toll it takes on them. Particularly that it is quite common for parents to try to diminish to other people how hard it is and to sugar coat how they are doing. I am the poster child for this. Honesty opens up vulnerabilities. But lately I find that I cannot hide how tired I am. I have been for quite a while. I even switched to glasses from contacts to cover up the chronic bags under my eyes. Caring for Amanda while I was sick was physically exhausting. I've not had a recovery period. There were days I found myself crawling up the stairs asking God for help to make it up because I was too weak, only to find myself lifting her and bearing her weight because she was weaker than me. It was hard. Really hard. Then Will came and I found myself waking up every45 minutes to 2 hours for over a year. That's just the physical exhaustion. The emotional stress and worry have been great. Some days I feel that I will crack under the pressure. I am not super human. I still have and need a lot of help. It is easiest to open up to close friends and family. I appreciate their listening ears. Often I am asked "how do you do it?". The answer is always the same - I just do. I have to.

Will is starting to sleep better. He stopped nursing and for some odd reason that helped. But in doing so, he started loosing weight. I think it's because he started walking, but regardless he is heading the wrong direction on his growth chart. We're hoping to meet with some specialists next week to figure out what to do. I can't get him to eat or drink enough. We'll just do our best until the doctors can give us some answers.

1 comment:

  1. Thanks for sharing what a difficult journey this is. I always keep you in my prayers. I admire your ability to keep going forward! Much love!! Jolie