Thursday, December 20, 2007

Lost bits

There have been so many times in the last couple weeks when I've thought of things I want to talk about or just throw out there for fun. I need to start carrying a little notebook around with me in order to jot them down. I could put them in my PDA/phone, but I'm not so good with the texting even if it is full keyboard. So here's a few semi-random things that I meant to give some time to... aren't you lucky you stopped by today??
December 14, 2006, the day we brought Braska home from the hospital...finally. Then and now. I hope to try to recreate this pic every year. It's the first one after the day of her birth with she and I together.

We've come a LOOOOOOOOOONG way, and me both.
I watched a show last week--I won't mention it or link it because I don't want to even accidentally be blamed for endorsing it--that I normally purposefully avoid even though it's watched in the other living room in our house. I watched it because it advertised having a DS character (this was not the ER episode), and I wanted to see how they dealt with it. I wasn't all that impressed with the actual storyline, but there was an exchange between two characters that I thought was interesting.
He said, "What would you do if you had a kid with too many chromosomes?"
She said, "How do we know that the rest of us aren't just missing a chromosome?"
(Might not be perfectly verbatim...didn't write it down right away.)
Some things aren't funny. This is something I've been putting together in my mind for some time, and it'll have to wait for further elaboration. But it's important to me...humor is good, laughter is great, but some things just aren't funny and shouldn't be laughed off "just because" or not. I've seen so much of that kind of laughing do serious damage to whole lives.
On Saturday, 12/15 we joined up with a couple small groups to do some caroling at a couple nursing homes here in town where members of our church reside. I haven't done this in many years, but it used to be part of our family Christmas tradition when I was younger. Granted, we are not actually part of either of these small groups from our church...we're kind of like the honorary small group members who don't actually attend small group. I wish that were different, but baby steps... Our friends are super enough to include us on social occasions so we jumped in. (My husband would say he was more dragged in, really. See his take on the night here.) It was fun to be with our buds again...we don't get together nearly enough anymore. And all the kids were at sitters, so we were fancyfree....well, as fancyfree as you can be on the churchbus visiting elderly and singing Christmas carols. But it was good. It snowed the whole time as we were in the middle of this past weekend's snow storm. It made for a nice setting.
A few pics of the evening...smiles on the bus. There were goodies and hot cocoa circulating to keep us happy and warm.
After we got done, we went back to the church to hang and eat more goodies. We borrowed Oasis, which is the teen auditorium area. It's pretty darn nifty, I say. Booths on the side, cafe area, with air hockey, video games, and such on the second level.

The girls gabbed as the guys played, for the most part. This is Jennifer S, me, and Karen K.

Today was a pretty good day. I felt more like myself today, getting out, talking to people, interacting with adults. Here's how it went...
7am--Up, shower, get Braska up and fed, get us both dressed and ready.
7:45am--Leave the house!! Take Belle to the groomer.
8am--Use the time on the north side of town to run errands. Post office to get stamps, Target to return a gift, Wal-Mart to get things we need, gas station to fill up before weekend trip.
9:20am--Return to pick up Belle and head home.
9:30am--Check email, reply to work issues, finish a project.
10am--Freshen up and dress Braska for going out. (Previous outfit was for errands. Pathetic, I know.) Prepare diaper bag and collect Braska's stuff for feeding while we're out.
10:45am--Leave house heading for lunch meeting.
11:10am--Arrive early at the Olive Garden. Make a few phone calls in the car while I have a minute.
11:20am--Go in, get seated, etc. Have nice lunch w/good friend/work contact. Fed Braska while there. (I'm getting used to doing her tube feeding in public. I don't even notice if people look anymore.) Did some business, got caught up, and relaxed a bit over soup and salad.
12:50pm--Head to the mall (big deal, I NEVER go to the mall). Managed to get gifts for BIL#1 and #2. Found a clearance pair of boots at Payless, stood in line for Santa, got pics of Braska with the very nice St. Nick. (Soon to be posted on her site. Gimme a day or two.)
2:20pm--Arrive home, feeling like I actually got out, and loving it!
The rest of the day was a bit less eventful, but that's ok. I got out. I had adult conversation. Man, I miss that something fierce.
I didn't do a dish, clean a room, unload the dryer or any of the many other things I needed to do, but I still feel good about the day.
While I was out today, getting gas, a guy came out of the convenience store with a brown paper bag, obviously holding one of the tall beer cans. (Yeah, I watch Intervention. That's how I know. Disturbing, yet very enlightening show. I've learned alot of helpful things that I've had a chance to use, but that's for another time.) He gets in his car, closes the door, fiddles around with some stuff, then opens the beer can in plain sight, downs quite a swig, then takes off. I don't like it. Not at all. He is putting my child at risk, and I don't care for it.
Target is expensive. While I was there today, I thought I'd use my newly obtained store credit to get the things I had on my Wal-Mart list. So I went to check them out. Now I don't usually know what anything costs. If I need it, I just get it, so I can't tell you how much a pound of meat is or what my deoderant costs or anything like that. BUT I do know what diapers and Braska's liquid food costs. And wow, even the Target generic brand was 15 to 20% more than I pay at WM. All the items I looked at were a few dollars more expensive. I just couldn't do it. Even though it was "free money," I couldn't do it. I didn't think I'd become this person, but I guess I have. Looking at price tags. Guess it's about time. I don't know how all you Target shoppers do it.
One last thing for now:If you're looking for more wit and sarcasm than the normal person can provide, check out M's blog. He's been posting again after a bit of a hiatus, and they're worth checking out. *Disclaimer (made with love):I cannot be held responsible for the content of that blog.*

Wednesday, December 12, 2007

Mommy life: Donation for Daria

Today I finished my Christmas shopping for all our "team" of people that keep Braska going and gorgeous! We donated to Daria, the Waiting Angel of the Month. We'll give cards to each of our team members telling them of their gift and how it will help this child.

It's hard for me to just give money and pray, but right now that's all I can do. And it's alot...nothing's more powerful than prayer. But sometimes I just want to get up, fly to wherever they are, and just spend time holding them, reading to them, and taking them to families who will love them. Lately I've been wishing I could just call someone up and say, "I'll take her!" and be done with it, but it doesn't work that way. Plus my husband would be less than happy with that decision...

I would like to set forth this small challenge.... can you spare $5? I think that most likely every person who reads this can. Will you consider sending that to Daria today? More is better, of course, but a bunch of us sending $5 would be huge for her. Five bucks....that's all. How long would it take you to whip out a debit or credit card and donate five bucks? If you're in Champaign-Urbana and this means you won't have money for lunch, you come on by, and I'll take care of feeding you!

Monday, December 10, 2007

Shop talk

Saturday I was at Wal-Mart shopping for a few items, more than one of which was in the baby section. I've always thought that when people are actually shopping in the baby section, they seem to slip into a friendlier mode, talking to others who are also in their world, discussing ages, genders, and latest milestones of their kids.

As I was standing in front of the shelves full of baby foods, cereals, and juices, there was a lady who came up from my right side. She was talking to the man a few steps behind her who was dutifully pushing the shopping cart piled high with their coats and scarves. There was no kid in sight. I should specify that she was talking LOUDLY. It was almost as if she was unabashedly inviting people to stop and listen to the earth-shattering things she had to say. As she walked up to where I was looking through the Graduates items for Lil' Crunchies, she stood about 12 inches from me and sighed very loudly. She said, apparently to the man, although she didn't direct it toward him, "I just WISH he would eat! What do you think we should try this time? Or do we just give in and let him eat the same two things." The man made no response, just followed as she passed behind me and then stopped on my left side. She continued, still sounding like she was trying to share this info with someone a few aisles over, "Nobody gets how frustrating this is! I wish we could go back to when he just took a bottle. "

Since I hadn't found what I wanted yet, I considered walking around the next aisle and waiting for them to finish and leave before returning to search some more. But that seemed silly. Before I realized I'd decided to say anything, I heard myself blurt out, "I know feeding can be stressful sometimes." "Well, WE are trying to get him to start taking some solids, and he only wants a few particular ones," she replied. "It's been like three weeks, and I don't know how long I can take this!" She had such a martyr's air to her, at least I think that's why I said, "Aw, that is hard. My daughter has a feeding tube." I surprised myself, let me tell you. She hesitated for just a second, and she said dismissively, "Well I guess I should be thankful, then. "

Thank goodness, I spied those evasive Lil' Crunchies, and grabbed them up. I said, "I'm sorry it's frustrating for you," smiled as sincerely as I could, and I walked away.

It got under my skin, and that surprised me. She had no way to know what feeding issues meant in our house, and I'm sure they are just as frustrated with their particular set of circumstances. There was just something about her more-distressed-than-thou air that was too much for me. It was almost like she wanted some kind of medal of courage for hanging in there, and if she did, I'm sorry she felt like she needed to look for it in a Wal-Mart aisle. I gotta say, that poor guy looked like he'd been hearing that song for a very long time.

Friday, December 7, 2007

Two hospitals in one day

Mommy and I went to St. Louis again yesterday for some more doctors and stuff. We left very early in the morning. This time, we went to a different place than where we usually go. We went there because they have a big place just for kids like me that are little but need glasses to see better. Mommy told me that when I get my glasses that I will see all kinds of things I don't get to see right now. I'm not sure how that works, and I don't like when they put the glasses on my face to try them on, so I don't know if I'm gonna like this thing of wearing glasses.

First we went to St. John's so we could pick out my glasses. Miss Mary helped us, and she was very nice. Mommy put some of them on my face, and they kind of make my nose feel funny. She decided which ones she liked, and I told her they were my favorite too. And guess what color?? Pink, of course! We will have to go back and get them in a couple of weeks. I sat like a big girl while Mommy was paying for everything. There was alot to look at in there!

While we were waiting to get done, Mommy asked Miss Mary about our new little friend Levi who was in that hospital, but he got moved. I'll tell you about him in a minute.

After we got done, we met Auntie Rachel for lunch since we were close to where her new job is. She works for a different hospital, but we thought two in one day was enough, so she came to meet us at the lunch place. I played with the shiny paper that the chips were on, and then I sat with Auntie Rach for a while and tried to grab her pizza. Mommy said I could eat some if I wanted, but I didn't...I just wanted to play.

We finished up with lunch real fast and went to our regular hospital called Children's. I met with another nice Miss Mary who talked to Mommy about how I eat. She said they were going to do something called a swallow study, but Miss Mary decided pretty fast that I didn't need to do that. I swallow just fine, thank you!

She watched while Mommy fed me some, but I didn't really want to eat. Then Miss Mary gave me a thing called a Crunchie. It was pretty fun to hold on to and after she put it on my mouth, it kind of tasted good too.

I even held it by myself, which made Mommy all surprised.

After we finished with Miss Mary, we had some extra time, which was very good. We went to find our new friend Levi. Mommy knows the story better.
I knew a guy in high school from church camp, Michael, and hadn't really thought about his family in probably 15 years. My parents have kind of kept up with them. Earlier this week, Michael's wife Carrie had a baby, Levi, who was born at less than 3 lbs. He has some major heart issues and will need multiple surgeries, but currently, they're working to get him to at least 5 lbs before they can consider operating. When Carrie was discharged from the hospital, they transferred Levi over to Children's. Since we were at both St. John's (where he was born) and Children's on the same day, I felt strongly I was there to make contact and offer a little encouragement, even if I hadn't seen them in so long.
I'd never met Carrie, but I waited in the NICU waiting area until she and both her mother and Michael's returned from grabbing lunch. It was nice to see Michael's mother again, and Carrie and her mother were both very sweet. I talked with them a little bit, just trying to encourage her. She told me the doctors had given them the possible scenario that he might not ever come home, and they asked her and Michael to consider the possibility of taking him home soon to simply spend what time he had as a family. How can that kind of a decision be made? How difficult that must be?!
So your prayers on Levi's behalf are appreciated. I'll be checking in on them again when we're back there soon if he's still inpatient.
After we checked on Levi, we went down to wait to see Dr. R. I spit up on my shirt, so Mommy just took it off. It was alot of mess. That's why I've got no shirt on. I thought it was pretty fun to play around like that. Mommy kept a blanket on me so I would be "proper."

When they put me on the silly scale, I was 15 lbs 0.8 oz. Finally made it to 15!! Mommy was happy about that. Then she put me in clean clothes and she was happy again. Dr. R thought I looked pretty good, and my button too. He said Mommy could start feeding me different. They talked about milk and something called Pediasure.

When we came out from seeing Dr. R, it was snowing! Mommy called Papa Beagle to see what the computer said about the weather, and we decided not to go home. Mommy doesn't like to drive in the dark and Papa said it was gonna be slippery too. So we decided to go to Grandma C's house for the night. We watched the Bears game with them and Grandpa J played with me by the neat tree they had in their big room. It had lots of lights!

Today we came home before it got slippery again. Our house got lots of snow! It was good that we didn't go home during the snow, because we saw a whole bunch of cars that slipped off the road during the night. But we made it safe!

Monday, December 3, 2007

The Raisin Bran Life

Just finished making dinner. Like with ingredients combined to create parts of a meal, all together making what most people might call "dinner" or "supper."

Here's the thing. I don't cook. Now, mind you, it's not that I *can't* cook, it's that I just simply don't. Why? Because I'm married to man who doesn't eat real food, and I have a daughter who also doesn't eat. And I got tired of cooking for one (me), usually after I had "cooked" for one (him) in the form of mac n' cheese or some such boxed item. SO...therefore, I don't cook.

I would be happy to live on Raisin Bran, even a generic. Yeah, that's how far I've fallen. When M is busy or it's just me and Braska, I practically do live on it. Throw in a Slim Fast shake here or there, and I'm good for a long time.

I used to cook. Even when I lived alone after college, then when I had a roommate, and even at the very beginning of our marriage, I did actually cook. But when I learned that my husband preferred, yes that's right...preferred Hamburger Helper to homemade dinners, I took the easy way out. It eventually slipped even further, as now HH is a "real dinner," as opposed to things like mini-tacos in the toaster oven, nachos, grilled cheese, and frozen pizza. While you're shaking your head, realize this....he actually LIKES this stuff, at least as much as he likes any food. He doesn't like to eat anything, really. He says that eating is a hassle, and he's jealous of Braska's ability to receive sustenance without putting forth effort. He even talked of seeing what it would cost to do an elective g-tube. Yeah, crazy, I know.

He likes turkey, if it's pulled/shredded and dried out about 10 minutes then salted. He will eat lasagna sometimes, tacos usually, chili occasionally, and chicken bits here and there, that's chicken breasts cut into small pieces or pulled then cooked again with seasoning until they're pretty dry. The hard part, really, is this... even food he "likes" are not always acceptable. Like tacos could be considered a favorite, but it is possible for me to have all veggies chopped, meat seasoned, and shells warmed and he'll walk in from work and not want tacos. Or I could make homemeade lasagna, one of my best offerings, which he does like, but after spending all the time to make sauces and layer and such, it wouldn't be a surprise if he didn't feel like lasagna that night.

SO in order to avoid such things, I've just gotten in a pattern of not planning at all. That's hard for me, as I am WAY a planner. Dinner time is the old college style "what do you want, I don't know, what do YOU want" kind of thing. Then I stand and look at a bare fridge and sparse pantry and give him options of mini-ravioli, beef ramen (which he actually CHOOSES sometimes), or popcorn. It's a sad place we've come to, but he really doesn't mind.

I, on the other hand, have fantasies about dinner time. Meals planned out ahead of time so that I can order my day appropriately and shop more efficiently. It's when we set a crock pot of beef roast and veggies on the table with rolls and salad. We sit down and chat about whatever comes to mind, things of the day, what's new with the kiddo. It's comfortable and relaxed. Even after 10 years, I still have that dream. Is it any wonder that we have a child with feeding issues? I don't think it's a coincidence...and the speech/feeding therapists that we've seen don't either. They keep trying to get us to sit at the table and include Braska. But our dining room is generally just a walkway from the hall to the kitchen. I keep thinking I'll do it with her, just us two, even if it's not a group thing, but I haven't. It's just easier to stick with the norm...catching up on DVR shows while I eat off a TV tray and he eats at his computer across the room. We're not eating the same things, so we don't usually even eat at the same time....well, sometimes that works out. Braska usually is already done with her 5 minute straight-to-the-belly dinner before we start. Then I fix whatever he's eating, then I decide what I'm going to eat and I make it.

Wow...didn't mean for this to become all about our eating, but it is kind of interesting, or pathetic maybe. We admit it. We're not deluded into thinking this is the right way, it's just survival on my part, and it pretty much the way he's always known.

So anyway...back to tonight. I have been very upset at the state of things and how bad they've gotten. Our house is trashed, like the worst it's ever been. This is completely unacceptable to me, but thankfully in a way, M doesn't mind. He never says a word about it... so at least I'm not being hounded. That's a good thing. But I don't like it. I don't like that we've been doing take-out too often, that we haven't been actually eating food, non-boxed. So today, after a frustrating therapy session that made me feel like I would NEVER get things right (not the therapists fault, she's good), I decided that I was going to get something accomplished today. So I started with the kitchen. I always start there. It's the one place I can dig into and actually finish. And when it's done, it looks so great.

Since I had a clean kitchen, I was more in the mood to put forth an effort to make something. So I decided on chicken, rice, and salad. This is on the "usually" list of acceptable things. We haven't had it in a while, so that makes it a better bet. I went through the process of the chicken (thawing, dicing, cooking, seasoning, cooking more until dry) then I saw an onion. This is rare because I don't usually buy produce because it always goes bad. M hates onions, so I got an idea. Why I thought of this, I do not know. I decided I'd make my own onion rings. I LOVE onion rings. I don't remember why I bought this onion, but who cares. I did a quick web search for batter recipes and there I went. I managed to keep an eye on the chicken, start the rice, chop the salad veggies, make the onion batter, slice the onions, and get them in the oil all in stride.

Man, they were good!!!! Check out how pretty they are!

In the end, M had a nice dinner of chicken bits, rice, and salad, followed by vanilla ice cream. I had part of a chicken breast, tomato, and onion rings! Now that's dinner!

I'll hold onto my dinner dream. Someday I may get there, but I'll not hold my breath. Raisin Bran will continue to be my friend, but at least for today, I accomplished a few things that made me proud.