It's Not Fair

I know it's not healthy to be in the 'It's not fair' line, but this week I've been throwing a little pity party for myself. It almost seems backwards since Julia's been having a really good string of days, but I have been in a foul mood. At this moment in time, I am just plain fed up. I don't want Julia to have to do extra nebulizer treatments each day, be on a heavy duty oral antibiotic and have another sinus surgery - all to resolve a problem we thought we fixed with the sinus surgery in May. Enough already. Especially since each of these treatment options comes at a price. The topical antibiotic/nebulizer treatments are difficult to administer and expensive. The Zyvox was hard to find and the dosage was wrong - pharmacist Mommy figured it out after two pharmacists and the doctor missed the dosing error. And we have to do bloodwork to make sure her platelets are okay. Another sinus surgery...ugh. Not to mention, we need to do another CT scan prior to surgery. Lately it seems I spend most days that I am not working either at Children's or on the phone with Children's. It is exhausting to keep up with all of the medical stuff. And, if truth be told, I am tired of having a nurse in our home every weekday. We completely appreciate all of the help they give us, but some days I just want to hang out in my jammies or act silly with my kids or read a book without feeling weird. Privacy. Down time. Family time. I miss those things.

Okay, I know it's time for the pity party to come to an end. Because as we've learned during these last eight and a half years, the 'It's not fair' line doesn't move. So, it's best to just move on. After all, I don't see Julia complaining, and she's the one who is most entitled to it. I guess it's time to go back to doing a gratitude journal again. Counting my blessings is sure to get me in a better mood, isn't it?

Random Word = Cleaner

The challenge: Use a random word generator to get a word, and then journal using that word. Well, okay, that sounds like it might be interesting.

So, while watching "Clean House," I got the word cleaner. Now, that's ironic.

Here's my brain dump all around the word "cleaner":

• I've been going greener and using more natural cleaners. Matt thinks I have gone vinegar crazy. But, the nurses use it to clean Julia's neb kit and other stuff, so maybe I'm not so crazy after all. I will be exploring more 'recipes' for other natural cleaners.
• Along with being cleaner, we've been working on more de-cluttering. We're making progress, but it's slow going sometimes. My head knows it's just stuff, but when it comes to parting with it, I'm convinced I will someday have a use for it and regret getting rid of it. Believe it or not, I'm better at getting rid of my own stuff than I am with the kids' stuff. They really do have more toys than they need, so I'm going to have to toughen up.
• Also related to cleaner - organized. We have A LOT of stuff, but most of it is well-organized. Seasonal decorations, kids' clothes, craft supplies, cleaning supplies...it's all pretty darn organized.

Boy vs. Bus

Julia's bus driver, Anna, is an absolute gem. She is so sweet to Julia, and the little kids both adore her. Many days, they slip on whatever shoes they can grab, throw on a coat and race outside in their jammies so they can say hi to Anna. Luke helps push the buttons to lower and raise the lift. Anna 'pays' him with high fives. Today after four high fives, Luke said, "I'm really makin' some cash!" Anna has also commented that Julia helps with her seat belt - Julia holds it each morning until Anna clicks the two pieces together. I love that she notices the little things that Julia does. She is also very careful to make sure little ones are out of the way before she leaves. So, after Julia is secured on the bus, I round up Luke and Erica on the front patio. As soon as the bus is clear of the driveway, Luke takes off like a shot to race the bus to the corner. Anna drives really slow, and Luke can run pretty darn fast, so Luke usually wins. A few days ago, Luke started the race on his scooter, but that wasn't fast enough. So, he abandoned the scooter and finished the race on foot. At the corner, Anna waves good-bye, toots the horn and sends him back home.

There's a lesson in all of this - it doesn't take much to really make someone's day a lot better. School mornings tend to make me tense. We're on a tight schedule to make sure Julia is dressed, medicated, fed and packed for school - not to mention that the little ones need help with dressing and breakfast. So, while Julia is usually ready to go on time, there's not a lot of time to spare. Some of Julia's other bus drivers would blow the horn if Julia wasn't outside the second they pulled in the driveway. Anna takes a different approach. She's so relaxed that it helps me to relax. These days, she's here really early because Caitlin hasn't been on the bus. Instead of making me feel rushed, she puts the lift down and sits on the edge with her feet dangling over. She said she doesn't want to drive around to just kill time, so she just takes a few minutes to chill in our driveway. Jacob and Sam, the brothers that ride the bus with Julia, chill out with her. No worries, no horn beeping, no crabbiness...just smiles and laughing. It's amazing how one person's attitude can really help me get my day off to a better start. I hope that I can pass it on.

Obsession

I have an addiction. I need to have things to read. Books, magazines, the back of a cereal box, newsletters, emails, blogs...I consume words. For many years, my addiction was tamed - fours kids in six years left little time for the luxury of reading. And, when I did read, it was about kids. But, the book fast has ended, and I have been glutting myself on books. I suck them down at the rate of about one novel a day, 2-4 times a week. Shortly after I renewed myself with the consumption of books, I started having mild vision problems. My depth perception was off once in a while. At first, I didn't connect it with all of the extra work my eyes were doing. Turns out my eyes needed time to adjust to all of this extra exercise. Now, they are often tired and burning, but that's because I do most of my reading after the kids go to bed, making for many late nights.

My addiction is fed by the local library, along with the 40 libraries that it's connected to through an online system. Search, find, request, pick-up - it's not unusual for me to have 10+ books in the 'on hold' queue. It's like Christmas morning going to pick up a stack of 'my' books from the library.

Luke and Erica seem to share my problem. The library is a weekly destination for us at a minimum, but we try not to stop there daily for risk of being considered stalkers. And the kids have a whole new field of possibilities - CDs and DVDs. Music and movies to borrow and absorb and enjoy.

Julia also loves to be read to, and we work to track down colorful books and happy music for her each week. Alex still claims that he doesn't like to read, but frankly I think it's growing on him. And, I've hunted down a few treasures for him as well. Last year it was Captain Underpants, now we've moved to Diary of a Wimpy Kid. We're not far away from Harry Potter.

So, the fact that my library card now has 80 checkouts cannot be blamed wholly on me. Strawberry Shortcake videos and Bob and Wendy puppets and Barney music and train books and Lawnmower Boy are all in that count.

What can I say - at least my addiction is fairly cost effective because except for the occasional lost book or video, it doesn't cost anything but time.

Worry

I know that this is self-centered and not necessarily fair, but I want to know what people who have healthy children and good health themselves worry about. Often, I think that our lives would be so simple and so relaxed if Julia were a 'normal' child. There is no doubt that I love this girl thoroughly and with my whole heart and soul...that is not the issue here. I love her for the person she is, and I don't often travel down the road of imagining what she would be like if she didn't have Aicardi Syndrome.


But, the draining stress of worrying about issues both big and small is wearing me down. What to do about balancing seizure control and too many meds (we're not doing very well on either front as Julia's seizures have been in the not completely awful, but not great range while she is still on three different seizure meds), what to do about inclusion at school (my gut feel is that Julia should be spending more meaningful time with her regular ed class, but no one can seem to figure out how to do it), new mystery issues (her teacher pointed out that Julia has not been using her right leg/foot - sure enough, after studying her for the last couple of days, she really is not using her foot and she seems to be using her right hand much less as well - I'm in overdrive coming up with very scary explanations for why this might be happening), working to find a nurse (we were hoping that we would find someone we had no doubts about, but instead we're doing a trial run with someone we're not 100% sure about). All of this is on top of regular doctor appointments, brace fittings, winter illnesses, forms and paperwork and just everyday life. Not to mention, I am really busy at work and can't seem to get caught up.

Breathe in, breathe out. My head knows that I just need to tackle these stuff one step at a time, but some days, I just don't want to deal with it.

On the bright side, my capacity for handling stress in a somewhat healthy way has increased by about 200% since the time Alex was a baby. If only the number of things to worry about had not increased by 250%, I would be one zen woman.

I guess God did not intend for me to be zen. Perhaps he has an inkling that I would turn into a complete couch potato if things got too relaxed. I guess he wants to keep me motivated.

This post has been entirely too much whining, but it's my blog and it felt good to get it off my chest. So, there.

16 Things About Me

Well, it's the blogging thing to do, so here it is.

1 - I am into cooking, and I take it seriously. Most weeks, I create a menu plan and do my grocery shopping over the weekend so I have all my supplies. I love AllRecipes.com - it's a key part of my planning, and I usually get inspired to try a couple new recipes every week. A really well-executed week means we have planned leftovers for lunches, lots of good 'grinding' food and extra pucks for Julia and a least a couple of meals that everyone loves. A less stellar week means lots of PB&J sandwiches, some make-ahead dinners out of my freezer back-up and a trip (or two or three) to Cousins drive-thru.
2 - I've started wearing scarves again (not as in outdoor gear, but as in fashion). I have quite a few that were tucked in a drawer and unworn for years. Last week, another blogger posted some scarf-tying techniques, and I was inspired to dive into my stash. I've been able to put together a couple of outfits that wouldn't work without a scarf to pull it all together. I even got to wear a brand new pair of pants that I got on clearance, but didn't have anything to go with them until I did the scarf thing. Fashion at my fingertips.
3 - I love our redone bedroom. It's been a couple of months since we finished it, and I still get an "Ahhh" feeling every time I walk in there. The colors turned out perfect, and it is such a serene, relaxing space. Thinking about it gets my itching to do another re-do project. Basement, hallway, kitchen...what to tackle next!?
4 - Work is exciting right now. New ownership, Christine as the new VP of Marketing, new projects, new opportunities. It's been a long time since I've had work on the brain at home, but it's been good to stretch my mind with all of this "new".
5 - I love the mail. I can hear the mailtruck when it does the other side of Woodview Court, and I know it will be 45 minutes until delivery at our house. I practically dance out the door as soon as the mail arrives. This obsession is directly related to number 6.
6 - I am addicted to magazines. I have about 7 magazine subscriptions, and I regularly check magazines out from the library. Just can't get enough of them.
7 - As long as we're on the topic, I also LOVE to read. I take the kids to the library at least once a week, and I use the online searching/hold system to keep my reading queue filled so I am never without a good book to read. Luckily I am a super fast reader, so I can crank through a good book in an evening. Right now I am totally into vampire books - it started with the Twilight series, it moved to Sookie Stackhouse (done with all 8 of those), and now I'm into the Undead and ... (Unwed, Unemployed, etc) series.
8 - I have always worn my hair fairly short. It hit shoulder length for a while in the late 90's, but it's never been longer than that, and it's now a lot shorter. Since becoming a mom, my rule is that my hair has to be 'done' with no more styling than a quick blow dry. That works for me.
9 - I wear glasses all the time. I used to wear contacts most of the time, but that gave way to the ease of glasses nearly 10 years ago (yes, right about the time Alex arrived...no coincidence there). I tend to go for funky glasses now. One of my best splurges EVER was a pair of Juicy prescription sunglasses. They are brown and pink with a bit of bling and I just LOVE them.
10 - I take a lot of pictures. We got our first digital camera about 6 years ago, and I take thousands of pictures every year (the last couple of years, it's been around 10,000/year). One of my personal to-do's is to learn to take better pictures. I have a new Canon Rebel XTI (almost a year old now), and I still use the Auto setting for nearly all of my photos. It's time to take it to the next level.
11 - I love to play with color, and I'm not afraid of bold colors on the wall. I LOVE the orange wall in our Great Room. Before it was orange, it was a blend of deep red and dark blue (stipple painted). I love having a statement wall as the first thing people see when they come into our home. I think it says "Bold Personalities Live Here."
12 - I am fascinated by the sibling/family dynamics of our kids. It completely amazes me that 4 kids with the same DNA building blocks can turn out so different. And, it is amazing to see how those four personalities interact with one another. And, I must add it makes me so proud at a gut level that these children are mine.
13 - I am a multi-tasker. I usually have a lot of irons in the fire. I think this might be because my attention span keeps getting shorter and shorter. It might also be that my ambitions are greater than my waking hours. So many interesting things to do, so little free time to do it.
14 - My next creative project to learn is beading. I've already started accumulating the beads and some tools (and, no surprise, checked out some books from the library). Next step - gather everything I need and make my first creation from scratch.
15 - Movies don't have to be all that good for me to enjoy them. Matt and I go out so infrequently that just the time out in a quiet theater and comfy chair contents me.
16 - I think I have a fairly large amount of patience, but when it runs out, watch out. I can tolerate quite a bit of chaos and big voices and scattered toys and busy schedules, but when I reach the end of my rope, just back away.

Appreciate

I have to admit, I've pretty much abandoned making New Year's Resolutions. Somehow it seems that the busyness of the holidays leaves me without enough energy to think about a master plan to improve my life over the upcoming year. So, by the time I get my head around the fact that it is a new year, it's mid-January and the momentum is gone.

This year is different. Oh sure, I went through the first week ignoring the whole resolution thing. I toyed with the idea of doing a 365 photo project. I glanced over the 'word of the year' posts on the blogs of 'famous scrapbooking women'. I watched bits and pieces of Oprah's Best Life series. But, I didn't summon up enough hutzpa to actually do anything until today. And, really, it just kind of hit me unexpectedly.

The word hit me and just stuck. That word is appreciate. As in appreciate my blessings. As in show appreciation for those I love. As in appreciate what I have rather than regretting what I don't. But, I guess it's really not enough to just have a word. I need a plan.

So, here's the plan. This last week has been sending me bits and pieces of information that I've synthesized (oh, I love that word) into my big plan. At the root of it all, I want to appreciate the gifts I've gotten from God. So, I've been reading all kinds of books waiting for something to resonate. And, I found Beth Moore's "Believing God". Just picked it up from the library tonight (and, that library is near to the top of my appreciation list!). I've only started, and the ideas are still sinking in, but this book is going to be a big part of my plan. Read a blog by Leo Babauta that said change a habit rather than making resolutions. He says it only takes 10 minutes a day to create change. That's going to be the ticket. I'm going to work Beth's spiritual challenges into a plan that takes 10 minutes a day (okay, maybe a bit more), and I'm going to get closer to understanding God's plans and gifts and wonders for me.

I know, it's a little loosey goosey right now, but I can feel it in my heart that this plan is the thing I'm meant to do. I'm going to get stronger and kinder and happier...it's going to be good. This is not an idea that I can let just fade away. So, more details for this grand master plan and my progress to follow. Eventually...

There Were Hints

For the longest time, I thought that the woman I have become was not very much like the teenager I was. That girl was going to be a career woman, and here I am - mother of four. But, when I think about it, the stuff at the core of me now is very much like that girl I was. Here's what I mean:

Pro-Life - Way back in middle school, I did a research paper about abortion. I was very much against abortion then, but I didn't know that I would someday be tested in a way that rocked my very soul. When we found out that Julia had some brain abnormalities at our 20 week ultrasound, one of the options we were given was to terminate the pregnancy. And, I was so shaken and scared about what we'd learned, I felt like I just wanted to run. To further complicate things, we had to make a decision quickly because we could not terminate the pregnancy once we reached 22 weeks. So, for a couple of days, I felt like I had this enormous decision to make. Crazy thoughts went through my mind - could I be sedated if I terminated the pregnancy? Could the baby be sedated - after all, I'd felt her moving... For me, those awful days of trying to 'decide' still remain the most difficult part of our journey with Julia.

Then, I finally realized that there was no decision to be made. Although abortion was an option we'd been given, it really wasn't a choice for us at all. No matter what, we already loved this baby. And, it hit me - having this baby might change my life more than I could even understand then, but aborting our baby would destroy my life. So, yes, even when my faith was put to the test, I can say with 100% certainty that I am pro-life!

Part 2 and more to come.