A day off from school

Friday, David had a day off from school. He decided, some weeks ago, that he wanted to return to the Hutch School for a visit, and then go to Children's Hospital to see doctors, nurses, and other staff who meant a great deal to us during our time there. We had been advised that some families find this very difficult, but he had been looking forward to it very much.

We took the ferry over in the morning, walked up to the Hutch School and visited with some of the staff there. They are a wonderful group. If you are looking for a school to support, that is a great one. They are so understanding of what the kids and their families are going through, and are truly supportive. They also provide a great educational experience.

After that visit, we took a shuttle to the hospital, so that David could show me first-hand what his experience was like commuting to and from the school during those days. We went up to Hem-Onc the clinic, and spoke with Dr. Park (Katie's oncologist) as well as Julie and Tanya (our ChildLife and Social Worker, respectively). We saw nurses who have helped us along the way. Then David's friend, Storm, met us and we went to lunch at one of David's favorite places, Metro Market, next to Ronald McDonald House. [This was part of David's Seattle routine that he enjoyed: he would get a sandwich (to take to school) and a smoothie each morning, and then meet me at the hospital. He and I would then have breakfast together before he caught the shuttle to the Hutch School, and I would return to Katie's room to spend the day with her.]

It was great to see Storm. We met him and his family in the hospital last fall, and got to know them when we all lived at Ronald McDonald House. I will tell you a bit about him: he is polite, interesting, fun, a skilled skateboarder, and the best brother anyone could ask for. His sister Madysen's caringbridge site is: http://www.caringbridge.org/visit/madysen. We had a nice lunch, and then a chat with his mom, brother and sister, before they left. We returned to the hospital for more "rounds" of visiting. Since Katie had been in the SCCA, ICU, CICU and Surgery wards, we had a number of places to go in order to see everyone David wanted to see...and we even missed some of them.

Gregg met us at the hospital, and then we went to the University Village for a bit of browsing and dinner. Since this was "David's day," we let him decide where we would eat. His choice: Blue C Sushi. After dinner, we drove to the ferry, and home.

It was a good day for David; he rated it an 8.5 on a scale of 1-10. It was a day of mixed emotions for me; I found myself exhausted at the end of it. I love the people at the hospital who loved and cared for Katie. It is a community of people who understand what we have been through. They know how to deal with us. There is no artifice there, and there is such real love, caring and generosity of spirit. For those reasons, I love being there, and even feel that I want to return someday to help others. But right now, it also brings back feelings of futility and enormous loss. I don't know when I would be ready to return, or able to help others, since my loss is so fresh and so very raw and painful. So I will wait and see what feels right.

This morning, David went golfing with my dad, Gregg went running and I slept in. I got up, sat on the couch with my coffee, read some devotional writings, read some Kubler-Ross, wrote in my journal, and just cried and cried. It was a relief, but it even hurts to cry. I can't explain that. It hurts to "go there," to reflect on the feelings that are always under the surface of my mind. It is so hard to adjust to living without Katie. She and I became so very close this year; we were almost always together. I miss her personality; I miss her take on life. I wish I could still help her, mother her, be with her. It is so hard not to be able to give her my love in the small acts of daily living. There are so many things that I wanted to do for her, give to her, share with her. I thought we would have time for those things, throughout our lives.

I thought she was going to have a break, a time of reasonably good health and some fun. She deserved a reward for all that she went through, trying to get well. I thought, If we can just get this horrible tumor out of her, she will have a second chance! I really did have great hope after she survived that surgery. I got used to being her amateur nurse, her buddy, her confidant, her assistant. I love her sense of humor. I miss it, even the jokes at my expense (see the photo for the typical 12-year-old expression). There are so many things that remind me of what I am missing, so many times a day. I don't mean this in a "poor me" sense; I mean "it's hard to do everyday things, normally" because I seem to see a reminder of this loss everywhere around me. Since I am a full-time mom, one-half of my job is gone. Think about it.

This might help to explain why a simple thing, such as grocery shopping, can be a real trial. I stay home alot. It is peaceful here, and I feel less likely to offend someone without meaning to do so if I minimize my social activities right now. It can all wait.

We watched "The Pursuit of Happyness" last night. It was very well done, well-acted, well-thought-out, and it taught me some things. It gave me a new perspective on hardship, and how much perseverance it can take for some people to get out of a hole in their lives, through no fault of their own. The scenes in the homeless shelter made me grateful again for Ronald McDonald House. Hardship comes in many forms in this world. Thank God there are people who want to help when they are able to. Ronald McDonald House is a true haven, as are shelters, for different reasons, but there are parallels between them. Thanks to all of those who volunteer to help, and thanks to those in helping professions, such as doctors, nurses, childlife and social workers. Your gifts make a better world.