28 February, 2010

While You Were Out...

So apparently the world does keep turning, even when I am not on Twitter, FaceBook and every other form of social media on which my moniker aspires to perch. I lost some followers, but since I don't even like that word it doesn't bother me much.

My family is on the mend too. February was a blur of illness and fever and snot, and for me it also included my first nebulizer, steroids and some heavy duty antibiotics.

Sage reminded me that probably the best lesson I could possibly learn from being sick for 25 days is to learn how to ask for and accept help. This is a big one for me. When I ask for help I feel like I am failing, like I am letting everyone down, and I hate that feeling.

I am grateful that my closest friends don't wait for me to ask them for help, and they jump in and shuttle my kids, cover my work, make me dinner, buy me groceries and call to check in on my feverish little self. I chose well, and I'm so glad they chose me back.

What is interesting to me is that I love helping people. It pleases me when I can make someone else's life easier, so why can't I just accept help...especially in the beginning of a problem so it doesn't spiral out of control later? I think I actually know part of the answer...Jake.

I feel like I am going to have so many BIG THINGS I need help with in life that I sort of don't want to use up all my chits asking someone to pick up two rolls of paper towels from the market for me. When Jake stepped on a three inch nail, I needed someone to take care of my daughter right there at that moment, and I had that in two minutes. I guess I don't ever want that feeling like "Oh I just asked her to do this little thing and that thing, so I don't really want to ask again for this."

Now I know I have close enough friends now, after being a part of both this special needs and the greater community, that I really could ask for just about anything and someone would help me. I know an amazing, powerful, get it done bunch of people, and yet I am loathe to ask for help. Even when someone is offering, and it's easy and they are already there, in the store, I feel like I am being lazy, or not self-sufficient. And even as I write this I sound like a ridiculous martyr.

Yeah, I know.. get over it. And I'm trying. I am.
and I really want to thank my friends for taking care of me and feeding my family here, and thank you, dear sister, for taking care of my sick husband and my babyGirl for those 3+ hellish days. Descartes could not have asked for a better nurse, and it is a darn good thing I sent those two to Tahoe, because I probably would be dead if I had tried to take care of Descartes that weekend too.

This morning Descartes got up with "all those children".. I have not slept so soundly in a hundred million years, just 1.25 hours past when I would normally get up, and I felt so much better. Sadly I think I get my best sleep between 5:30 and 7:30; these are also the hours when I have been nursing, or getting children ready for school for nearly 10 years. Oh my God ten years.

We took a hike this afternoon, not a long one, but just long enough for me to realize that I didn't do much walking for the past month. Jake did such a great job. He walked the entire time without dropping to the ground once or trying to run away. He held Descartes' hand the entire time up and down some steep hills. We went about a mile round trip, which may not sound like a lot, but when you have a kid with cerebral palsy that you don't think will ever walk.. it is life changing for our family... and yes, Lucy hiked in a princess dress, and heart-covered tights and pink converse with multi-colored stars. We were quite a sight.

18 February, 2010

Some Things I Know (Now)

  • a 3.5 year old with a fever will either be lethargic, and look terrifyingly close to death, or, when properly medicated with Motrin, be bouncing off the walls and tearing apart the couch you are using as your own deathbed.
  • a 9 year old with an inability to blow his nose due to multiple disability, can sneeze out an entire cold's worth of snot in one achoo.
  • an adult suffering from walking pneumonia can never get to a 9 year old with an inability to blow his nose due to multiple disability, who has just sneezed out an entire cold's worth of snot in one achoo before it gets all over the 9 year old's pajamas.
  • that same 9 year old, who has been noted to not quite be in the present due to his autism will laugh hysterically at the mommy who is hacking and coughing across the room to get to his nose.
  • there are not enough episodes of "Little Bear" to get through 5 days of illness.
  • that Little Bear show is whack. Dewd that doll dies? A funeral for a doll? A wedding for some skunks?
  • i am quite certain my husband is thankful for his job this week. He probably gets to rest there.
  • i am married to a very kind man who has not complained even once about taking care of whatever needed to get done this week.
  • i have no idea what that man is wearing to work because the dry cleaning has not been picked up in nearly a month.
  • this illness is kicking my arse.
  • if I don't behave and rest Squid will have her ER nurse mom call me, reprimand me, and tell me every bad story she has ever seen relating to pneumonia.
  • when I am sick and don't take care of myself my mom threatens to come to my house.
  • i have awesome babysitters who thankfully have their health and time enough to come to my house and act as another mom...one who can stand upright and feed children without coughing up pieces of lung.
  • my desire to escape to Tahoe is not diminished by my inability to properly breathe.
  • (and I knew this already...) I have great friends who check on me, bring our family food, and cover me at work. thank you thank you.

13 February, 2010

It's What I Like About Him

  • You can build anything, fix most things, and figure out how anything works.
  • You bought an Adventure van for your boy.
  • You love your children fiercely.
  • You are a kind and good son.
  • You have a sense of adventure that is tempered with common sense and a proper dose of humility.
  • You will at least try almost anything I bake or cook.
  • You are so strong. I don't think we've ever encountered something you couldn't lift, or pull along, and watching you scoop up one of our injured children melts my heart every time.
  • You've helped me move 6 times.
  • You bought me cheese for Valentine's day. Cheese!
  • You can dance. Yes, you can do the white-man overbite, but you can also dance like a gentleman, and I love going to weddings with you when I know we'll be able to twirl across the floor.
  • You are still married to me in spite of the fact that I forget to let you lead while we are dancing.
I love you more each year.

12 February, 2010

Shopping List for Lucy

Lucy is not eating anything anymore. Okay that's not really true, but I just sat down with her and named just about every food on the entire planet in French and English (okay that's not entirely true either).

This is the final list.
  • quesadillas
  • bananas
  • popcorn
  • barbecue chips
  • pasta
  • Parmesan cheese
  • butter
  • shredded cheddar cheese (only shredded not in "big pieces")
  • tortillas with butter and sugar
  • steak
  • Dutch baby
  • cheese pizza
  • ketchup
  • chocolate milk
  • pink lemonade
  • donuts
  • pears
  • apples with no skins
  • bacon
  • watermelon
  • olives
  • pickles
  • ice cream
  • popsicles
  • cereal but no raisins!
  • croissant
  • chocolate chip cookies, "but only mommy's"
  • chow mein noodles
  • potstickers
  • beef jerkey

I decided not to even ask if she likes PopTarts, Cheetos, Chili-Cheese Fritos, candy corns or ginger ale, because then I would have to put them on the list and you would know how sad I am that my daughter even knows what those things are.

I am trying really hard not to continue this short order cook thing. I think it's so disrespectful when children won't at least try a bite, but since we aren't sitting down as a family, it's sort of hard to rein in some of this. Jake eats dinner early because he goes to bed early. I've always made Lucy her dinner at the same time, but now I'm realizing that she enjoys eating when Descartes come home, and is often more adventurous with her food if she is eating off of Daddy's plate.

and, of course, because I am so trendy, after reading 500+ blogs a day, I started thinking about meal-planning. It seems it's all the rage in "this economy". I always sort of have an idea about what's for dinner, but I think it might be healthier for our family and our bank account, if I think about what we are going to eat in a more orderly fashion.

The real problem I have right now is that Descartes has created a $40,000 problem at our house. Okay maybe that's also not entirely true, but he's opened up a can of worms for sure.

he busted my oven.

Not enough so that it doesn't work, just enough so that it's difficult to use. He spilled 8 quarts of boiling corned turkey water on the stovetop above the oven, right after I said "Be careful not to spill water on the stovetop because if it GETS DOWN INTO THE OVEN TIMER BELOW IT WILL PROBABLY RUIN THE LED." And of course that is exactly what happened. Well, first the timer bell went off for an hour, then it stopped, and now I can't read the temperature control. So it's not that the oven itself doesn't work, I just can't tell what the temperature actually is on the outside.

"Get an oven thermometer" you say? Yes, I have one, so that tells me when it is near the number I want, then I try to adjust the oven temperature, but sometimes when you press the button it goes back down to 250F, and sometimes it starts where you were, maybe at 350F. S0, I never know where I am, and it takes about 45 minutes to get the oven to the correct temperature.

I use the oven at least once a day if not more. I bake. I cook for my family. I make homemade cookies like Martha Stewart for goodness sake! (Actually I did just make about 100 heart shaped cookies, and it took me over an hour to get the temperature adjusted correctly before I could even start.)

So the part is $200+ and the labor would be another $200-300. Maybe more? A new oven is $800-$2000, depending on the one we would want. Of course, I don't want another electric oven, I want a gas oven, and I don't want a single oven underneath my cook top, I want a double wall oven. I know wah wah. So you see, I now need to remodel my entire kitchen.. which of course, we cannot afford this decade.

I'm thinking about buying a toaster oven, to at least make quick heat up meals for the kids. Maybe I can store it inside the oven.

08 February, 2010

Things that Make Me Very Upset

  • lice
  • hives
  • peanut butter hands
  • missing remote controls
  • overflowing trash bins
  • sticky floors
There are many other things that disappoint or disturb me, but today, this is the list.

After just having a conversation about lice my head began to itch. In fact, it itched again just now when I wrote that. The power of the mind eh? I cannot fathom how I would cure Jake of lice should he ever contract it. Even in his sleep he moves pretty fast for a kid with cerebral palsy... dewd you should see him dodge scissors.

I did have hives this morning, and now that the Benedryl is wearing off I am beginning to feel the welt rise up again. Becuase, uhm, you now what I was thinking? If it gets too easy, add hives. HIVES! Really God? Really? Has someone set a plague upon my house? Why? Is it all those times I throw my Diet Coke cans away in the trash can when I'm at the gas station, instead of saving them for when I get home to recycle them? I feel really badly about that.

Peanut butter hands
My sister can't stand banana hands, I don't deal well with peanut butter hands. I don't know many people who actually enjoy this thing, but peanut butter hands lead to peanut butter walls and peanut butter cars and couches, and one of my dads is anaphylactically, deathly allergic to peanut butter, and while he is not in my home often, he is in my car periodically, and that whole CSI thing reminds me that there is transfer, from one place to another, and that's ALL I NEED TO DO is go and CIL my dad. So poor Jake has to be hand fed his sandwich so as to avoid too much PBT (that's peanut butter transfer), which makes him a bit upset because he thinks he's all cool and independent now that he's 9.

Missing remote controls

This only happens in my house when Lucy is crying about "needing" to watch Little Bear. The only other time the remote control goes missing is when we want to change the channel.

Overflowing trash bins
I like to pretend that I don't hang a 33 gallon trash bag off the side of my counter every other day, but it seems there is always a giant black trash bag tucked into a drawer next to the stove. I'm not sure when I started this habit, but I hate emptying the 10 gallon trash can under the sink every five minutes, and going to the large bin outside on the deck seems too dauting for every scrap. Oh and I have a brown paper sack kicking around the kitchen floor too.. for the paper recycling.

Sticky floors
It's not secret that Jake is a messy eater, and he loves to do drive-by snacking, where he picks food off the counter and marches off throughout the upstairs, and backyard if he can. If he is really hungry, and I am not paying attention for 3 minutes he has been known to grab a piece of fruit out of the fruit bowl to eat. This is generally fine. Messy-ish, but fine. Unless he gets a home-grown and surprisingly not-sweet tangelo. He took one the other day, and when I saw his puckery face from across the room I knew exactly what he had tasted. When I went into the hall, I saw the first bite, small, to get through the rind, on the ground. Next there was the actual bite he took which made him pucker. It was spat out on the ground and stepped on with his precious little shoe. Finally there was the rest of the tangelo, lightly clipped by his gigantor foot, the innards of the citrus splayed out across the hardwood like an image from Wheels of Tragedy.
I cannot get the sticky off the floor. Or maybe it's just now on every shoe in the house.

Did I already say hives? Okay, must go itch now.

07 February, 2010

And She's Out...

I sat there last night frantically trying to finish my work before I threw up on my computer. I thought I was feeling better, but last night was the worst all week. This half-flu half cold thing does not suit me well. I feel just better enough to do things, then I crash and burn.

I think I am the kind of person who really needs to, I don't know, break. my. leg. before I slow down. Don't give me half illnesses, because I will still feel full-guilty for not accomplishing things. Then when I half-finish, half the things I should do, it will make me want to crawl under the covers when I eventually am well.

I have spent a lot of time with Jake lately since he's been home sick too, and I am just so proud of him, and happy for our family. He's so engaged with the world around him in ways I haven't seen before, or ways I've seen, but now others can see it too. He's tracking conversation and having reactions in the moment, which has happened in the past, but now I feel like he's really "here" all the time, and others can see his reactions as well because they aren't as subtle. He laughs at jokes, and smirks and chuckles when Lucy is being a brat about something. He's been following some directions in such a timely manner that it appears he is actually following the direction. We always give him the direction we want verbally, then usually give him a physical prompt to tell him what to do next, but twice this week (at least), I have said to Jake, while he was at the bottom of the stairs "C'mon up buddy, it's time for dinner." ...and he has come up the stairs and gone to the counter! He has gone into the bathroom with only a verbal prompt, sat down in his chair several times. This bodes well for Jake demonstrating safety awareness.

He's also doing a lot better at making choices using icons and the actual item, and of course I am most pleased when he makes choices between my two hands after I tell him what each hand means. "home" or "park", "ice cream" or "cookie".

The other night Jake came in to my room while I was folding laundry (see mom I do fold laundry sometimes). This was after Jake had gone to his room for the night, but before Lucy and Descartes had come downstairs to "watch a show". I asked Jake if he wanted Daddy to come down and watch a show with him and he made his happy "aYeah!". Descartes came down and the boys watched Top Gear which, along with Mythbusters are two, that's right TWO television shows that Jake seems to enjoy. Most people don't actively encourage their kids to watch television, but for Jake to show preference means he is paying attention to what's happening in his environment, and for him to enjoy programming that happen to be two of his dad's favorite shows, provides one more point of contact for engagement. It also means there is one more thing we can add to the (short) list of things grandparents can buy him for Christmas.

I discovered Jake likes Mythbusters a couple of months ago when he was sitting on the edge of one couch, and Descartes was on the other. I went in to speak with Descartes, sat down on the ottoman, and Jake said, "Ma-aw" in a gentle, but irritated voice. I realized that I was in his line of vision. Descartes spouted that I was a better door than a window, Jake laughed as I moved, and then settled down and proceeded to watch the rest of the show!

Progress, little steps, a happy child, not-so-stressed-out parents...all very good things.


Descartes has just awoken from his pre-Superbowl nap, so now that he can keep on eye/ear out for Jake who is playing solo in the extra-locked down back yard, I am comfortable crashing in bed for a few more hours. I asked Descartes to record the game so I can watch the commercials later.
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