I have only a minute or two, but I wanted to write this down, mostly as a reminder to myself.
I am facing a major change. And I’ve been stressing and stressing without realizing the reasons. Now I understand the reason, but I need time to ponder.
This is mostly to remind myself to write about it. By forcing myself to write, I have to think. To think forces me to face this change which is normal, but scary to me… More later
What would my life be like now if
These are little things I wonder about…
To be honest, it was hard to find a title for this post.
Jay saw his specialist on Tuesday. They have decided that the anti/pro biotic thing isn’t working and it’s time for "R3micade". This is a drug that is given intravenously. The idea is to get him hooked up, starting in March, 2 hours a time, every 2 weeks for 3 infusions of this drug. They will check for side effects, they will test for liver function and things like TB. IF this works, he would then go to weekly shots at home. The doctor was honest and said that 1/3 of the patients go into remission. 1/3 have relief, but need other treatments, 1/3 have no improvement. Well, let’s hope he is in the 67% that gets some form of relief with this medication.
I know, this isn’t about me, but I hate this disease. I hate seeing him in so much pain. I had the norovirus last week (that was my yuck). I gave it to Jay. For me, it was a horrible time. For him, painful and horrific. One of the ulcerated spots in the colon ripped open again because of the virus. He’s in pain every night when he lays down to bed. I have had people ask about surgery, but the honest answer is that it is a MAJOR surgery and so you remove one spot that is damaged. If you don’t remove the cause, another spot will become damaged.
I want my Jay back. The one who doesn’t have temper flare ups because of the damn steroids he is on. The one with the lean face (he has the steroid moon face now). The one who can rest and play with the kids in the evening. I hate this disease and what it has done to him. He feels old. And he isn’t….
Please hope that this med works. He’s been in a 4.5 year flare up. This just sucks…
A big yell out to JenEx who changed up her website which made me think and decide to change my banner. Turns out Mrs. Figby also got the change fever. However I am lame and cheap and ended up getting some free clip art, learning how to make computer kids, and make a new banner myself.
So, what do you think? I like the blue. I think I am keeping that….
Of course, it looks like I’m blowing off my kids while I work, oh, wait, I did that today….
As we are home with snow everywhere, we started working on our Hawai’i plans. We can’t book a hotel until March 1. That’s when the group rates start. My parents booked a room at the Hal Koa hotel for Retired Military. Nice.
The American Astronomical Society is holding the summer meeting on Ohau. So, we are going. We are taking the kids and we invited my parents to come to "watch" the kids 4 hours or so a day. The idea is that Jay and I can go to the meeting while my parents play with the kids. Then we do some family stuff together.
My parents tried a cruise to Hawai’i last year. It was cloudy and rainy the whole time. I felt terrible for them. On their way back from the cruise, the plane was over booked. They took the vouchers. Their flights to Hawai’i will cost $250 each, routrip with the vouchers covering the rest. They are staying an extra week after we leave and a day or two before we get there. I am glad they will take this time.
So, we are exploring the hotels and options today, looking at the flights and such… Sigh… this will be fun and crazy if we can get everything to work right! The girls will spend all day in the pool and ocean. I know that!
Jay saw his doctor on the crohn’s yesterday. I will write another post about that because I am SO FRUSTRATED with it. I don’t like the answers…
My good friend, The midlife Traveler, wrote an interesting post the other day, in which she opened herself up to criticism (sorry, MLT, you did). So, I thought about this. I am a part-time out of home worker. I have a 32 hour work week. My commute is 21 minutes (no traffic) to 1 hour (rush hour). Each way. I chose a daycare close to my work for several reasons,
The one thing that MLT said that made me think (and not get angry, because I know where she is coming from) is:
I’m still shocked by the reality that, in some households, allowing a
child the recommended number of hours of sleep would mean the parents
would literally not get to see their children when they got home from
work.Go ahead, shoot me for saying it: if your kid is away from you for 12
hours a day, 5 days a week, maybe you should have adopted a chihuahua.
NO FLAMING HER PLEASE…
This hits in a couple of ways:
First, our children are not good sleepers. They wake during the night (although luna is doing much better), and they don’t NEED as much sleep as the norm. Soleil usually sleeps from 10-7. That’s what, 9 hours of sleep? The guidelines say 10-13 hours a sleep for a child her age.
Second, we both work! So I started thinking about the time away from my girls.
Let’s take the "average" family. The parents work 8 hours a day. Let’s say they have a simple commute of 15 minutes. let’s assume a daycare situation. You take the kids to daycare. Take 5-15 minutes for the dropoff. Then go to work (15 minutes), work. Plus 30 minute lunch. then go to pick up the kids. That’s 9 hours right there.
Now, increase that commute to something more reasonable, 20-30 minutes, and you are away for about 9.5 hours. Okay, now what if you work a longer day? Say a 9 hour day, now you are away 10.5 hours a day from your kids.
How about the school situation? Some kids go to school early. Next year, the bus comes at 8:10am. We will be home close to 6. That’s 10 hours, just because I can’t control the time when school starts or ends.
This whole thing started me thinking about having children in general. We wanted children. Some was the basic programming gut instinct stuff, but some was for the experience. Jay wanted to life experience of raising children. Of helping a new person grow and learn. A bit egotistical, yes. Part of that human thing. As our children grow, we spend less and less time with them. We can still visit and talk, but there will be a point when the kids are out of the house. They are already their own people.
I can already see them learning, experiencing life in their own ways. School is yet another thing that will separate us, but I hope bring us together. Obviously, Jay and I have our own ideas on schools and helping our children in school, but I do hope to share our love of learning with them. Even when we aren’t there.
I guess this whole thing has me thinking about how we learn to work with our children in the context of a family. Even lovers aren’t together 24/7. Should we expect to be with our children that way?
You know, just when you think it is safe to go into the water…
I am almost recovered from the stomach bug I got on Thursday. However, Jay just picked it up. He came home from work last night and nearly collapsed. Sent him to bed. Okay, that’s not bad….
when brushing my teeth last night I was pondering something deep and profound (and not my belly button). And then I stopped the tooth brush and kept thinking. Then I heard it. Drip. Drip. Drip.
Ok, that threw me. I looked around. No faucets dripping. Check the shower. Nope. Drip.Drip.Drip.
Hmm, got down on the floor. Louder here. Then I notice that 2 sections of the grout are slightly wet. Very slight. Drip.drip.drip.
I go back into the bedroom. I explain what I think and what I hear. I think we have a broken pipe, Behind the wall.
I decide to go get some chalk to mark the floor. While I am downstairs I figure, what the hell, go check the garage. I went to the spot directly under the drip. Oh hell. The floor is very wet. Very very wet. The ceiling is leaking.
I walk back up, staying calm, grab the phone book. Explain this to Jay, call the plumbers and leave a message. Jay struggles out of bed and checks the garage ceiling. We turn off the water main to the house for the night.
The plumbers should be here between 9-11 this morning. I am glad we caught this. I would hate to have it break while we were at work or something….
UPDATE: sob… my beautiful wall in the bath is being cut as I type…Sigh….
UPDATE 2: Sigh.. the PVC connector cracked. Good news, on the DRAIN, not the supply (no danger of a burst pipe) Bad news, still have to fix this…
* The title is from Major League…the pitcher, Wild Thing, can’t throw well until he gets glasses. His original pitches are what we feel like right now!
The new fireplace insert
My pigtail girls
I am finally getting better. I have lost 2lbs these past few days. There is a bottle of wine looking at me and I SO want a glass, but my guts are revolting…
I have a post in my head….something from what my friend, the Midlife Traveler wrote. I don’t have it all organized yet… So instead, I leave you Soleil and I in Disney!
I have been quiet, but reading. What got me on Thursday is still here. I suspect that I have the strain of the flu that I was vaccinated against. I feel terrible, without the normal…um…fluid extraction that flus give you. So I am walking around, tired and constantly nauseated, but not losing fluids. That’s good.
We finally got the fireplace finished. It started in December. We got the fireplace measured and chose exactly what we wanted. We waited. And Waited. AND WAITED. We called. And we never got the call back. Finally, we got someone who realized that the order was never sent in. Sigh.
Order was sent in. We waited 1 week. Then they came to install. Great! They were able to get the insert in, and then the ductwork. That was it. It could run, but it looked terrible. They told us the surround that would cover the opening was the wrong one. They left the glass we chose.
Grrr.
one week later, another call. The order was in, but it was wrong. Jay actually went over to the place and discovered that we HAD the surround in the house and that the glass was wrong. Sigh. Then it turned out that the glass didn’t exist. The company had the glass in the catalog, but you couldn’t buy it. UGH. So we changed the order around and this morning, they FINALLY finished it!
It looks great! i will try to post a photo later.
MIL and Jay are taking the girls grocery shopping. I am going to climb into bed and nap. I need that!