My Wish for the Upcoming Year

I sometimes cry in the shower. It's private and there is no mess to clean up. I can also get the tears out of the way before I put on my happy face for the day. It works for me.

I don't cry for myself. I cry for my family, especially my beautiful children...especially my daughter, Emma. Emma has had a really rough 2010. Finishing her first year of elementary school, the 1st grade, proved to be very traumatic for her. Emma's 1st grade teacher was diagnosed with a rare brain disease in February and died on May 3rd. This was the teacher that Emma told me earlier in the school year, before she became ill, was like a second mother to her. What was supposed to be a typical right of passage for any child, completing first grade, became a lesson in grief and loss for Emma. Watching my daughter grieve and not being able to take away her pain was excruciating. Starting in February Emma started complaining of belly pain. Many visits to doctors and specialists later, we came to the conclusion that these were somatic symptoms. Her anxiety actually makes her physically ill. Whenever Emma said, "Mommy, my belly hurts", she's really saying, "Mommy, I'm scared" or "Mommy, I don't feel safe". I am certain I have the only 7 year old child who walks around with a pocket full of Tums everywhere she goes.

The school year ended and so did the belly aches. Until I was hospitalized in late June. We had a few belly aches and some behavior issues that were unusual, but nothing too bad. I was only in the hospital for 3 days and on IV's for 2 weeks. I felt like we got through it without too much trauma for the children. We told the kids the what's and why's of everything that was happening with mommy and have been honest in an age-appropriate way all along. A few weeks ago my husband told me that Emma asked him if he had a disease.

THAT BROKE MY HEART...

She's taking stock of her options. She knows that not all people with diseases live. She learned first hand that sometimes even being a really good person doesn't save you from the harsh realities of the cycle of life. She learned that anyone's time can come too soon. She learned all of this in first grade. She knows that Mrs. Williams had a disease and Mrs. Williams died. She knows that mommy has a disease, she's deducing that mommy may die. I have told her that the doctors are doing everything they can to make sure that I get and stay healthy for many years to come. I know from working with cancer patients that lying to children about disease is not recommended. I can't tell her I'm going to be OK. I don't know that I am going to be OK. The truth is that my disease is terminal. I have been aware of this truth since the age of 2. The truth is that most of us, more than half, with this disease will die before we reach our 40th birthday's. A lucky few...a handful...will reach their 50's. Things are trending in a positive direction, but who knows if we will find the illusive cure in my lifetime. I'm getting older.

So what do I tell my daughter? How do I tell her? How can I take away her fear and pain?

There will be no escape over the next year. I will start my treatment on Thursday and will be treated for ONE YEAR or longer. I will be on IV's, nebs and oral antibiotics for the first 8 weeks. Then about 4 months on nebs and the remainder of the year will just be easy oral medications. This is really powerful stuff. I will be getting millions and millions of milligrams of medication. It will likely make me sick. I may get worse, before getting better. There will be no hiding this from my children. I am going to do everything I can to normalize this experience for them. Similar to the approach we take with my Vest treatments. I let the kids put the Vest on and sing. They love it! To them it's just something mom's have to do every day. Yet, they know that normal mom's aren't hooking up their own IV's at the breakfast table. They know that normal mom's don't walk around with PICC lines. Normal mom's don't have a home health nurse come weekly to take labs and do dressing changes. I'm going to do my best to be strong for my kids. Maybe I'll let my daughter hook up my IV's sometimes. Let her feel involved. I'm going to smile through it and tough it out. As long as I can use my blog to express my weaknesses, I will do the best I can to "stay strong" in the real world. I have GOT to protect these children...these gifts that I have been blessed with...

I just worry about my Emma. My wish is for her to open up to us. My wish is for her to not be frightened or lonely. With everything that will be going on with mommy, my wish is for her to feel safe. My wish is for me to have enough energy to be able to cater to my children's' needs. My wish is for no belly aches. If you're the praying kind, please pray for no belly aches...