It was nice to have a weekend with no doctor/hospital visits. Mollie's moods really go up and down. She seems very lethargic and we're trying to figure out whether it's the chemo or depression (probably both). She says she wants to go to school, and she's not too interested in doing anything except watching T.V. and napping. It's hard to get her engaged in anything. Today she and I doctored up some of her stuffed animals and yesterday she got into an art project for a little while, but most of the time she was laying on the sofa.
Mollie did finally let me give her a shower today and we got all of the bandages off! Her appetite is good and she enjoys going outside. Today she and Matt bought a Radio Flyer wagon and we took it out for its maiden voyage after dinner (and I forgot the camera).
All of this is so heartbreaking. All Mollie knows is her "regular" life is over. She's not going to school, or ballet, or the Y. Aside from the docs saying that she couldn't, she's not feeling up to it. I know the importance of socialization and I wonder how this will affect her.
It's so hard to know how much we can push her to do routine things- like sitting at the table and eating dinner. The line between physical and emotional well-being in kids is very blurry. Limits and consistent discipline are important for kids; but when your child has a life-threatening disease and is taking drugs with horrible side effects, it's hard to be consistent.
My parents are leaving on Tuesday and Matt is going back to work tomorrow. With no family close by, all of the day to day stuff is going to be my responsibility. How ironic is it that THIS was going to be the year we moved to CA to be closer to family? Three weeks ago we were talking about how fall might be the best time to try to sell the house, quit jobs, etc. On the one hand I'm so glad we're in a stable situation because we have a home, health insurance, friends in the community, etc. On the other hand, we need family more than ever right now, and they live 3000 miles away. Sometimes I just want to throw something at the wall (preferably something that will make a loud noise and break into a million pieces)!
you edited this since i last read it. my heart goes out to you. this is not the way one wants to become a stay-at-home parent. please call me if you want/need to vent. and for mollie, do you know how much she understands of what is happening to her? how much have you talked with her? are there groups/programs/classes that she can participate in through the hospital? i know the last place you want to spend more time is the hospital, but they likely have support services you all might find so helpful right now. you know you aren't alone in parenting a child with cancer, but she is 4 and doesn't likely understand all that is happening or why. huge hugs.
ReplyDeleteIf there is a dollar store in town you and Mollie should make a trip, buy some thin ceramic plates, vases etc, and have a great big throwing things at the wall party. I've always wanted to do that. But seriously, this sucks. I'm no expert, but my instinct says you should try and keep routines, such as eating at the table, even if it does cause a ruckus at first. Even when ill, Mollie is going to need boundries. At certain points she may just be too sick to eat at the table, but it doesn't sound like that's the case right now. I think some days of laying on the couch seem normalish, she's got to be tired, and this is a big adjustment for anyone, much less a 4-year-old. If it really bothers you, you could always limit T.V. hours. Nothing's easy, but sometimes life is excrutiating.
ReplyDeleteThank you guys! We are trying to keep routines except when she's really not feeling well. One of the side effects of the drugs is "tiredness not relieved by sleep". So, even after taking a nap, sometimes she's still exhausted.
ReplyDeleteToday is better so far- we are going to Old Navy to get 4th of July T-shirts and then we're going for ice cream. My parents left today so it's all on me.... will let you know how it goes.
And, G, the cheap plates are a great idea. I know people make mosaics out of broken ceramics so I'm thinking PROJECT (wearing gloves, of course, to protect from the sharp edges.)
Ooohh, that sounds like fun. It makes me wish Tracy still lived in Lancaster so I could go to dollar stores down there myself (when visiting her of course) to buy my own items to destroy for art! There may be dollar stores in Alaska, but I'm not making the trip. Bishop, alas, has no cheesy dollar retailers. You may be separated from you extended family, and perhaps a bit isolated south of the mason dixon line, but at least you have cheap chain outlets.
ReplyDeleteAs for the plates, our local Goodwill has quite a nice selection for 25 cents each!
ReplyDelete-Sarah