I, and others, want to love and care and make Ruby happy. I also want all the girls to have manners and be thankful. They have been spoiled with lots of gifts, and they're becoming a little immune to the generosity. Today I helped Ruby finish her breakfast (like, putting the bite on her fork and into her mouth for her-the things you'll do to get them to have food in their bellies), but made her finish cleaning her room by herself. I noticed that I've been leaning too far on the spoiled side of things. The other girls could certainly pick up their room without so much complaining or whining that they need help. It's not that I want my beautiful girl, who also happens to have metastatic melanoma, spending her days cleaning her room. I do want her to have good habits and make progress towards responsibility and independence.
On Monday night I noticed the band aid on her neck was looking a little gross and needed to come off. She hears us talk about it and starts crying. Mark is the softy, so I told him to hold her (while we put on a show and gave her peanut m&ms) and I took it off, along with the 3 electrode stickies. Not as bad as all of us thought it would be :) We then went to Macey's grocery store and got ice cream cones, then to the park to hit some baseballs, kick the soccer ball and play on the playground. As Siri and Ruby were racing to get the bat, Ruby tripped and fell, face first onto the bat. Insta bloody nose, but not too bad. We are SO thankful that life is going on as normal, she's not having any side effects so far. I imagine she may get some as she gets more doses, but we are enjoying her normalcy for now. She is still waking up at night a few times, and is grumpier than usual, but nothing crazy.
Before I learned about Ruby's port, I didn't know what one was. So, here is a video that can help you understand what a port o cath is. I haven't felt comfortable taking the girls to the gym daycare, partly because of Ruby's recent surgery and not knowing how she'll feel/act, and the germs. If you get a fever with port, it can be serious. So, the less bad germies I can expose them to the better. Keep in mind I do take them to the library and church-germie places, but less gross germie places.
Yesterday was beautiful wasn't it?! I love this window of springtime when the weather is in the 70s, flowers blooming, birds are singing (except the ones in the vents in our attic-those ones drive me nuts ;) I couldn't stand to know Siri was in her school class room (that has no windows by the way-blah!) on such a nice day. Liz came to be with Ruby, I dropped Jane at school, and picked Siri up. We went to Lisa Falls, a short hike up Little Cottonwood, and then went to Wildflower Park. Good to be with just her. When you have more than one kid, one on one time is valuable. When I was with her I asked if she was afraid to die (because I think about dying, and what she thinks about dying). She paused and said "No, because I know I'll be with Jesus". I love her simple answer.
No comments:
Post a Comment