Thursday, July 10, 2008

Home sweet home (or not)

Tomorrow all my peeps will be coming back to the nest. Ronnie will be in town, very briefly, from Friday afternoon until Sunday evening. We will be picking Alannah up from camp tomorrow night. I will be happy to have them all home!

Mandy did pretty well today for a post chemo day. She is just so tired. I had to wake her up this morning at 9:45 to take her to her neurologist appointment. I suspect she had a good other hour of sleep in her when I so rudely woke her. All was fine at the neurologist office. He and I talked a lot about prognosis etc. Nothing new to report there, really. She then slept from 2-7pm and then was back in bed at 9:30. She was in a pretty good mood when she was awake. We went for a short walk tonight and she really struggled with making it very far. She was tired quickly and winded and her legs hurt. The leg pain is a product of the neuropathy(nerve damage) and the Vincristine side effect. It is so hard to see her just not be able to do what she wants to do.

She ate no breakfast at all. I was thrilled as she ate some pizza for lunch. All she wanted for dinner was a little bit of Captain Crunch and she ate a total of about 6 pieces.

Speaking of normal things that aren't anymore. We had set her up last year for dual enrollment at school, meaning part of the time she would be at school and part of the time she would be at home with a teacher coming here. The original plan was she would go Mon- Wed, and then a teacher would come to the house Thur and Fri. Since her change in treatment days and the fatigue the chemo is causing she will only be in school Mon and Tues next year. I called to talk to the school district about this change today only to be told that her IEP and 540 had been CANCELED. After I swallowed a whole host of 4 letter words, I asked why it had been canceled. Seems no one knows the answer to that. The IEP and 540 are the plans that allow the special accommodations and teacher coming to the house. Frankly, I was proud that I maintained my cool. I had a CHAT with someone there and have a message pending for the administrator of the program. I hope to hear from her tomorrow. My hope with getting this done last year was that we would be able to hit the ground running this year and have it in place from the getgo. No one else seemed to get the memo about my plan. This, um, shall we say, irritated me, just a smidgen. In order to get his in place you have to fill out a small pile of paperwork and then get teacher, administrators, district reps and parents in one room for a meeting with the small pile of paperwork, some of which has to be signed by the social worker at the hospital. SO, it is a lot of leg work to get all that paperwork and all those people in one room at one time. And frankly, I already did that. So it takes an act of Congress to put the plan in place but apparently a flippin' typo can cancel it. I am told we will have to start all over with the people and the paperwork. From square one, which means all that from last year was a complete waste of time. I don't have time to waste. I mean if I did, I would do my laundry, for crying out loud. Obviously, I haven't done that so I must not have much free time on my hands.

Now, it's possible I am just in a bad mood. In case you hadn't caught on to that yet. (But, come on.. it was CANCELED! I still think I get extra credit for NOT saying what I wanted to say) That said, I suspect even if I was feeling all Susie Sunshine and in a great mood that still would have ticked me off to no end.

I am feeling some stress lately. And this? This was just one more thing on my ever growing and never, ever shrinking list of things to do. I think it is just that time and it is all adding up. Ronnie has been swamped at work. And work for him is almost always somewhere other than the confines of the Sunshine State of Florida. This week found him in Canada again all week. I would love to find time to just go out on a date with him. Honestly, even when we do manage to find a few minutes alone, the conversation revolves around dr's and bloodcounts and worry how the kids are coping. I had to apologize to him the other day for basically being wretched. Frankly, I am surprised he wants to come home!

I spend so much time and energy making sure that the kids are okay, and going through each day pretending all is some semblance of right with the world for their sake, I just don't have much left at the end of the day. I am trying to make huge decisions about school for Mandy and Zachary next year and what school to send them to. Since I won't be working at the school again next year, there is a part of me that wants to put them back in their neighborhood school, instead of the magnet school they are in now. They only went to the magnet school for part of the year last year, so to go back to the neighborhood school would not be a disruptive change to them. I have after school care issues with Zachary on Wednesdays at the neighborhood school that I don't have at the magnet school. I just don't know and can't seem to figure out the right answer. I am stressed about money and bills. I am stressed worrying that I don't make this as easy on the kids as it possibly could be. I try, but I worry I don't succeed. I am stressed I am not as good at helping to ease Ronnie's mind as I should be. I am stressed about the laundry that never gets done. I am stressed about my house that never gets cleaned completely. I am stressed that poor Zachary seems to always get shuffled off somewhere, not that he doesn't love hanging with his buds, he truly does and would so much rather be there building Lego Metropolis than any of the fun filled appointments Mandy has. I just don't want him to feel cast aside either. I am stressed worrying in general. I am just stressed. I think I am just tired.

The upside is the kids all seem to be acclimating to the new abnormal normal and doing as well as could possibly be expected of them. Mandy seems to be less sad than in recent weeks, which makes me so happy. Zachary is smiling and joking his way through, as is typical. I think the two week break at camp has been a great thing for Alannah.

If I have said it once, I have said it a million times, this is a marathon, not a sprint and I guess i have just reached that point where a marathon runner would say they have hit the wall. I will keep running through the wall and will be fine. But, man, I sure need someone to hand me a Gatorade from the sidelines. Plus, I think chucking that paper cup with a little bit of anger behind it might make me feel better too.

Love to all~

1 comment:

Jennifer said...

I would LOVE it if you would ask your N-O if he knows someone around here. We are in Kansas City.

I'm sorry that Mandy is so exhausted and that you're feeling so stressed. It just plain SUCKS to watch your kid go through this kind of crap and not be able to do much.

I'm praying for you guys faithfully.