Journey Beyond Survival

My kids are cleaning up their playroom. It takes them hours of milling around to do ten minutes' good hard work. But, they are learning to focus you know. It's all about breaking it down into pieces. So now I take a picture of the crime scene and then we compare when the timer goes off ten minutes later. Works like a charm. Nobody can argue with concrete evidence. There's a reason why before and after photos are so motivating. We can see progress. It used to be that they would work hard, come and get me, and I would still see the same old junk that had been driving ME crazy as I stumbled through on the way to the treadmill. I couldn't tell they had picked anything up. We were all frustrated and about to become gremlins. We broke it down, and we've been consistent. You know what? It's made it easier. Yesterday, some of the comments made a lot of sense. Well, all of them did really, but these relate directly to what I'm pondering today. ...

Well? I got up today. Had a good seven and a half hours of sleep. I got in my walk, after a good deal of numb mind bargaining. I look at it as an investment in myself, not as a half hour of wasted time on the potty. It's a three therapist day today. Not brilliant at all, but we'll live through it. I hope. I've got a new project that I'm working on, it's making me crazy. I love it. I hate it. But I love it ten times more.  It's distracting me from your lovely blogs, and making my usual comments.  Boo. I've been great, minus one Saturday minor slip-up, on the no sugar dealie that I promised Drazil and Yum Yucky . I was hoping it would make a difference on the scale, even though I hinted it wasn't a big deal. It hasn't yet. Giving up sugar is hard for me, so I expected the usual 2-3 pound insta-drop that I usually get. I'm really glad I have this new project I'm obsessing working on. I've only noticed I don't ge...

3:43 am Beansprout scares me to death.  He's had a nightmare.  I take him back to bed and try to snuggle him back to sleep.  It works as long as I'm touching him.  If I twitch, he's up like a jack knife.  Finally I tell him he's just got to be brave. 4:15 am Tossing and turning.  Beansprout goes potty. 4:30 am Jerk awake by a scream.  Moaning like a mummy I drag myself out of bed and schlump my way to Beansprout's bed.  I blindly pat my way around the bed. He's not there. I hear it again and I realize where he is.  Beansprout is right next to me on the ladder of their bunkbed yelling at miss THANG, who is blissfully asleep.  I pat his calf. He jumps out of his skin and rattles the ladder like a cage. Apparently he was trying to ask her if she wanted someone to cuddle with.  "She wasn't listening," he tells me petulantly.  It seems that she must have been doing it on purpose because that is why she does it whe...

I'm teaching in church today. Again. Again because I don't feel ready and I never feel like I'm ready. I'm fighting off a lot of discouragement lately. I feel like I'm running a race and I'm never where I'm supposed to be. I feel like I'm giving my all, yet I'm late for appointments, forgetting things, and disorganized. I used to be so proud of myself for being able to schedule everything and get an amazing amount done. Now the reality is that I need a good twenty minutes a day just staring into space, and another twenty minutes to process what is happening with my daughter Chickadee. Therapy is hard right now, at least home therapy. Every time I do it it reminds me that she might lose the very skills we're working on tomorrow. I know it's worth it. I know she will have better mobility, motility, bone density, lower rates of scoliosis, but I'm still mourning the first and second regressions. My brain just refuses to acc...

I got to go to Chicago today. No kids. Just me and Hubbend. I confess to morphing into crazy Monster Lady to get everything done in time. Stupid tornado messed with my mind. I completely forgot about the day trip until the babysitter called the night before to get things settled. Hubbend persevered grimly and we had fun once we were away. I exercised, showered, and powdered my nose. I think that's part of the success, and part of the exhaustion headache. I LOVE road trips! ******************************************************************************** Please note that there is a widget installed at the top of my blog allowing you to vote to give $250K in research money for Rett Syndrome, the disabling condition that Chickadee has. Please visit my site to click through if you are reading through FeedBurner. If you are reading from Reader, you can click on this link to VOTE You can sign up for daily reminders HERE

MrsFatass introduced me to my dear friend Drazil . Given the sad crazy state of my life at the moment, I thought it would be fun to participate in something she regularly does on Fridays. Here are her questions: Get your crazy creative thinking caps on and answer would ya? I love getting to know all of you better! 1. This comes from my post yesterday about me bragging that I can still wear the same earrings I wore in high school….got me to wondering…how many piercings do you have? (the ones you can tell us about anyway – *wink wink) I am so boring. So boring that I'm unique! I have none. Absolutely zip. It was against the rules for me to get my ears pierced at all before I was eighteen. Then, I never had the money to buy the earrings I loved. Expensive taste you know. 2. I’m asking this one because I’m getting another tattoo soon…and even have plans to get one of a lizard – my little Draz – because this blog and you all have become a major part of my life. Anyw...

Sorry everybody. We had a tornado touch down about a mile away from us last night. We don't have power, so I snuck away to the car to give enough juice to my phone to post. Funny how I still take care of the important things! Gets me thinking about my priorities. It's more important to get out of bed than it is to wallow. It's more important to take my meds than wipe the table. It's more important to get new braces for Chichadee's legs than it is to do just about everything else. It's more important to cheer up a downcast Hubend-wink wink-than it is to do ANYTHING. And that is my day.

Today, I want to share something with you that has been my obsession lately. A question of my past, my present and my future. It's taken up a bit of my time usually spent commenting on your blogs. Without further ado, I was invited by Mish to guest post on her blog Eating Journey. I love Mish. She writes fantastic things. So, I spent this entire month working on the post that will be up a bit later today. Go take a look. If it's not up yet, you can get the cliff notes in my fb photos . And, please remember to vote for Rett Syndrome at the top of my blog and to share it with your friends. We're moving up the ranks!

We are taught so early to hate ourselves. Interesting isn't it? When the entire cultural 'Golden Rule' relies upon us loving others as we love ourselves. I don't know when it happened. But I rebelled. When I eat too much dinner, or I buy ice cream, I no longer motivate myself by screaming inwardly. I don't need toxic levels of disgust to be consistent. It's strange. It happened after psychosis, and it happened after my daughter Chickadee was diagnosed with Rett Syndrome. Until that point in my life I had never truly felt like I was incapable. I had always told myself I was horrible, selfish, fat, and so on, but I felt like I could change those labels at any time. I felt motivated by berating myself because there seemed to be an actual chance of change. I did therapy, I lost weight, I managed stress. I earned an extra 4-8 years undiagnosed. I helped Chickadee escape diagnosis too. We did our own therapy every day. Because of my training I k...

Over the weekend I had several opportunities to speak up about one thing. Medication. Most were in the form of emails, from people that are like me or know people like me. I love having conversations with people who have been through something that makes them relate to my experience. The best way I can describe it is that we're refugees from the same war. But we never want to talk about it because we don't want to get deported. Another opportunity was on THIS blog. I have to admit it's that time of the month, and I'm trying not to be witchy. But this worried me. Mostly because of the comments. Karen, the writer of the post tries very hard to be fair and researches what she writes about. I was just disturbed at the way people were flippantly baddying about what people should do. I probably overreacted. Anyway, I commented and poor Karen had to handle the aftermath. She is a gracious lady and posted a follow-up today. The first comment was mine from Thu...

To the man whose favorite Fathers' Day present is a dogpile on top of him in bed. One that nearly breaks the bed. Because he gets me stamps in my passport, sends me off to a blogging conference and kisses me soundly. Most important, Because he is Cavity Caper today. He is hauling around Pretty Power Pink being chased by Toothpaste Boy and Rainbow Girl. "Prepare" shouts Rainbow Girl commandingly, "to be Confused!" she is delighted when it works.  Cavity Caper is rendered incapacitated by a fit of giggles.  Later, in a dizzying chase around the table Toothpaste Boy holds up his hand.  Cavity Caper stops and grins. Toothpaste Boy wipes the air in front of him clean from the stinkyness of Cavity Caper.  Then he casts his spell, "CONFUSED!" Cavity falls to the floor incapacitated once again. I love that man. ********************************************************************************* Please note that there is a widget installed at the top ...

Now, I don't know about you all, but I don't know many millionaires. I hate to be hitting up people I love for money, I know that most of them are struggling just as much as I am to make ends meet and provide a future for their families and retirement. I get that. But, I am perfectly willing to shamelessly use my friends for VOTEs . Shameless. Did you know that the International Rett Syndrome Foundation has a small window of opportunity to double their money? That's because the Pioneer Fund of Colorado gave the IRSF a grant of $1 million dollars to be awarded when the foundation has matched that amount in fundraising. This is why I'm willing to be shameless. Especially when it comes to $250,000 for getting the most VOTEs . So, please feel free to sign up for the DAILY EMAIL REMINDER and return to vote every day until the end of June. You know I'm persistent. You know I'm consistent. You know I will drive you just as crazy as I am until you do...

Thank you to Deep Fried Fruit for the Mind Boggling award. It seems that the only requirements are for me to name 5 mind boggling blogs. Which is incredibly easy: Michelle @ Eating Journey is so insightful it's scary. And, she's the snarkiest little thing you ever did see! She gets the better of Jack Sh*t on Twitter all the time. Seriously, I love her! MrsFatass @ Did I Just Eat That Out Loud? She makes me laugh. Very important. And, she is confident with a splash of pizazz. Real, and she says it like it is. Plus, she is the friendliest most inclusive person I've met in a long time. Plus, you can get in on #TubbyTimeWithMrsFatass on Twitter once in a while. Not that I ever have. *weeps* Miz @ MizFitOnline is a community hub. She believes in people. She cares about people. She's an Excellent Mother. And I find it entertaining when she messes up her Direct Messages with Public Tweets. Don't miss it. Ryan @ No More Bacon is AWESOME. He has a...

Or not! I decided to focus on the positive and use some of the awards that have been collecting out there in cybersphere. Thanks to Pam @ The Rest of the Journey and Karen @ Waisting Time for the Beautiful Blogger award. So wonderfully sweet of them. You should read their blogs. They are super inspiring. Pam has been trying to lose weight for a while, but then got pregnant. I hope she doesn't mind my talking about it, but she lost her little baby before it could survive. She is back to struggling with her health, and could use as much encouragement as we can give her! Karen is so intelligent. She's introspective and an excellent writer. I feel better every single time I read her. She always has some way to spin her thoughts into an uplifting achievable medium. I received this award before, so please check out the POST to see my referrals! Funky 5 Meme!!! Traci @ Traci's Treasures gave me the Funky 5 Meme Funky 5 Meme It's a take from Glee where ...

I have a new worry. I hate to share it, because I feel like I've already sucked up more than my fair portion of the blogosphere's empathy. You are all so supportive, and I care about you. I hate to hurt people I care about. Besides, saying it out loud makes it worse. The hard truth is that Chickadee is not done regressing. She has experienced two major regressions, and I thought this last one was over. Observing her the past week I've realized she's not done. Three weeks ago she was walking thirty feet with two hands held. Like an almost toddler. I now have to coax her to go three feet. She is also having a hard time sitting with her feet out in front of her, what her therapists call ring sitting. She can only sit that way for 5 minutes or so before she falls over. It was pretty indefinite a week ago. This means she's less mobile. That, coupled with the facts that the gastroenterologist we saw yesterday told me has made today a hard day. Chic...

So, yesterday I had a crazy day. In addition to all the things I was talking about yesterday, I took chickadee to Big City for a Doctor's appointment. That's why I let the house give me lip. I've had a hard time shutting out my old expectations of myself. It's hard to sort through what I should invest my time in trying to improve in my lovely life disaster, and what I should let sift away in the wind. Sometimes persistence becomes OCD anxiety, and other times it saves my life. Like the house for instance. Versus getting up every morning and exercising. Yesterday I; got up, exercised, showered (earth shattering), put on makeup, drove miss THANG to school, and then had breakfast. While I was putting on makeup-and miss THANG came to watch me with curiosity-I realized I felt fabulous. Even though I felt like I didn't have time, and even though I almost made her late to school. I cleaned off all the sweat with Noxzema, which reminds me of my mom. The eu...

"Good Morning" says Mr. House. I'm caught off guard. Mr. House continues, "You look Chipper" Ah ha! I knew it was going to start. Wait for it... "You finally going to do something about me? It's depressing. You look like you have all the energy in the world. You've slept, you've exercised, you're ready to move on in your life. Right?" Mr. House looks hopeful. Funny, I thought hope could only come from something with a soul. Glowering, I survey the damage. Mr. House is right. It is depressing. Dishes left undone by the chiclets. Mail waiting for Important Decisions. Sighing I begin my script. I see Mr. House glaze over with boredom, "Well, as soon as I'm done with breakfast, then therapy for Chickadee, and grocery shopping then I can. But I'll have to make a list first. And I haven't helped the kids clean up their playroom in a while. They must've sat on all those bags of clothes I sorted. ...

Chickadee has been crying during the day every half hour or so and won't calm down until I pick her up and cuddle her with her binkie. I know that a typical child who is around 18 to 30 months experiences this to some extent. Usually in the context of social anxiety and strangers. I can't decide whether this is a brilliant stoke of genius strategy in which she escapes the boredom of her immobile life. Or if she is experiencing some neurological side effect. Regardless-in spite of the fact that the latter makes me heartless to say it-SHE IS DRIVING ME CRAZY!!! Oh wait. I already AM. Well she's upsetting the bats in the attic at any rate. At least she is sleeping through the night. It's a miracle I will not cease to be grateful for! Now if I could only find new toys she can operate we could be set. Please note that there is a widget installed in this post allowing you to vote to give $250K in research money for Rett Syndrome, the disabling condition that C...

Please note that there is a widget installed in this post allowing you to vote to give $250K in research money for Rett Syndrome, the disabling condition that Chickadee has. Please visit my site to click through. If you are reading from Reader, you can click on this link to VOTE You can sign up for daily reminders HERE Really and truly though THANK YOU to everyone who has voted, passed on and helped! Remember that this money gets doubled by the Pioneer Fund of Colorado. I'll be back with more tales of life on Monday, but I'll post another tidbit to remind everyone to vote tomorrow!

Now, I don't know about you all, but I don't know many millionaires. I hate to be hitting up people I love for money, I know that most of them are struggling just as much as I am to make ends meet and provide a future for their families and retirement. I get that. But, I am perfectly willing to shamelessly use my friends for VOTEs . Shameless. Did you know that the International Rett Syndrome Foundation has a small window of opportunity to double their money? That's because the Pioneer Fund of Colorado gave the IRSF a grant of $1 million dollars to be awarded when the foundation has matched that amount in fundraising. This is why I'm willing to be shameless. Especially when it comes to $250,000 for getting the most VOTEs . So, please feel free to sign up for the DAILY EMAIL REMINDER and return to vote every day until the end of June. You know I'm persistent. You know I'm consistent. You know I will drive you just as crazy as I am until you do...

Being beautiful is more than having the right proportions.   It's about attitude, engagement, and most importantly confidence.  Operation Sexification comes from Mary @ a merry life . Please go and read her inspirational post. I chose my points and goals to help myself with my attitude.  To be engaged in life and give me more confidence.  They were: Exercise. As you may or may not know, I had a difficult week. Monday through Wednesday knocked me down flat. Thursday I did 30 crunches all ways, 20 back lifts, 20 leg lifts, and 10 girl push-ups. I'll be doing the same today. I usually do a 'basic' strength everyday. Is that bad? Makeup. Okay. I suck. I only wore makeup Sunday and Thursday night. I NEED at least concealer and mascara every day. Come ON JBS. Okay, maybe Tuesday day I can give myself a freebie. But I want to do better. Next week I want to wear makeup every day. Clothes. I decided a great place to start is to shower and change...

I picked my favorite recipe-for right now-over at 500 in 2010 HERE . Check it out. You won't be sorry...

From Diminishing Lucy Comes Fat to Fit Thursday. I believe that the main reason I've maintained at 194 pounds this week is because of THIS . Which was NOT worth it. FYI. I'm hoping to eat high fiber...in the near future. Yes, I did have to pause and shudder. I confess I am not there yet. Goals: reach 10000 steps each day [including treadmill time] 5/7 I got there on Saturday even if I didn't get on the treadmill get on the treadmill 30 minutes five days 4/7 Well. Being sick certainly doesn't help with consistency. Does it? I'm proud of myself for getting in my 20 miles last week though. Awesome. sleep. as in at all 5/7 If only I could get to bed on time Hubbend has been keeping late hours again. I can't sleep if I'm waiting for him. I think I'm just a woman with sleep issues and a house FULL of excuses. So, if you want to join in on the Blog hop Go HERE for directions and then link up. It's fun. The whole point ...

Every week one of my favorite blogs features a participant in the challenge to get 500 miles in 2010.  Today is my day!  My post is over there at 500 in 2010 . It will probably be mid morning to lunchtime, as I believe they are on the West Coast. Why should you go over there? Because there is a Survival Family picture! Edited super ninja spy picture yes, but picture nonetheless! Okay. I sent the wrong one!!! Sorry.  This is from July 2009. Here it is here: Who says treadmills are boring?   Treadmill Choreography You're welcome. If you're wondering, four times is too many times to watch that. *photo by ~*~...nicole...~*~ *

Well-because of Blogger yesterday-I have no post today. So I thought maybe I would tell you a little story. I haven't been feeling well. It started out yesterday after my walk. My stomach sounded suddenly like the plug had been ripped off the drain of a big pipe. You know, that wet gurgling sound? Only it sounded like the industrial size. I felt fine. But I thought, "uh-oh". Uh oh indeed. I spent ten minutes taking care of some painful business in which normal and abnormal conflicted a great deal. Wreaking havoc on my internal workings. Oh yes. Pleasant way to start out the day. My system is such that I had high hopes it was a fluke. Something that happened once for inexplicable reasons-too much sugar or butter-and was now over. It's not that completely ridiculous. It has happened before. I was excited for yesterday evening. As you may have noticed-given my trip to Stockholm -Hubbend does business of an international nature. We were going to...

theirs...mine For as long as I can remember, early June is jam making time. Strawberry jam. We would hunt down the best price at the markets, and mum would come home with flats of berries. It was a harried time. We would buy them, hull them, and mash them all up on the same day. Then we would cook it all up. Then we'd pour it off into jars and freeze it. As I was working with my chiclets alone this year it reminded me of our journey here. Toward a healthy lifestyle. A lot of work in a very short space of time. So that we can enjoy life better for a long while. It sure can be overwhelming at times. Everybody knows that the best strawberry jam is freezer jam. Just doesn't stay that vibrant red color unless you barely kiss it with heat and then turn it into a jamberry popsicle. Cooked strawberry jam-the kind you can store on your shelf-is a dull autumnal color. Nothing like summer. Unless it's been ravaged by coloring or worse. Jelloed. The whole o...

It's not you. It's me. Don't change a thing because you're perfect the way you are. You know how I am. I dropped Facebook in RealLife like a hot potato once you and I got going. My personal blog hasn't been updated in months. You changed my life. You validate me. Give me motivation and purpose. It's just that now that six months have gone by, the shiny has worn off. I'm pushing too hard to keep up the pace. I just need some time. Okay, so it's only been five months. But from the first weekend I was dragging my feet. You remember that right? The goal was enticing, goading. But now, I need to find the perseverance to keep on for the whole year. I know this might be a deal breaker to you. But, the truth is that I make the rules here. If you don't like it, I'm sure there's someone else willing to change. Jack Sh*t has never missed a day for instance. And the Anti-Jared is pretty die hard too. I'm sure you've fi...

So, a huge part of the reason I started this journey was because I lost it. I felt like a mooshy mallow. I actually felt worse than that. I felt like a sexless pod. One that recharged at night and bumped around pointlessly like a Roomba* after. My life was in shambles-if you remember-but I let my self slip away. I was reading around the blogoshpere when I ran into some inspiration : Operation Sexification Points and Goals. Exercise. I'm not trying to just dehydrate here. I am flat chested, but Hubbend had other curves he appreciated. Believe me, my hips are not going anywhere. Also, my booty consistently requires me to purchase jeans a size larger than my waist. Get the picture? So, I want to build up my chest, and take down my abs and posterior. Abs in, butt lifted. This means adding in strength. Do I have time for this guys? Makeup. I wear nothing. When I went to Stockholm I did wear it all the time. I didn't wear eyeliner and blush once, and th...

From Diminishing Lucy Comes Fat to Fit Thursday. As Holistic Health Coach-Tri Mom pointed out to me last week, I'm never going to be fat again so I shouldn't call it Fit to Fat. Oops! Goals: reach 10000 steps each day 4/7 FYI I include my treadmill exercise IN the 10,000 get on the treadmill 30 minutes five days 4/7 I seem to be more active the rest of the day when I've been on the treadmill I'm having a hard time adjusting to my daughter being home We're all looking forward to the summer supplement program starting next week apparently the brilliant child needs MORE school sleep. as in at all 5/7 All of your well wishes seem to be working! Chickadee has decided that she is now going to sleep for ten hours and start taking naps again Feast or famine! And I'm taking advantage of the feast So, if you want to join in on the Blog hop Go HERE for directions and then link up. It's fun. Also, if you type the name of your blog instead of the n...

I got everyone to go to the Farmers' Market last night. Okay so I was going to go with miss THANG to reconnect with her, and Hubbend begged to come along. I was grumpy and catty.  I said sure, and then made everyone sorry as we got ready to go.  I growl, snap, and snarl, but I'm getting to be more civil about it. Like an unashamed grumpy old man. So, skipping to the part that really matters- I ate well at a restaurant.  We walked to the restaurant from the market.  We did not leave the restaurant even-especially-when Chickadee freaked out.  We walked back to the market for the van.  And guess what miracle occurred? We all ran!  For fun!  Even miss THANG who is extremely self conscious about being left behind and usually doesn't even try to run.  I had to really coax her, but it was like a flashback to when I was in Jr. High and first gained weight when my parents hit a rough patch in their marriage.  I knew exactly how she felt! ...

Staring at Beansprout-who has grown six inches in two months-I marvel at his height. I just gave birth to the boy. Five years seems like nothing. "Look at me Mommy! I can reach it now. Cause I'm tall enough." After the requisite pumping of his fledgling ego, I stared at him. He is probably about a third of his adult height. It's absolutely amazing. Right now, there are bumps in the road. In more ways than one. Beansprout has temper tantrums. I have problems not eating my emotions. Seems we're both working on getting ourselves under control. But we will. One day at a time. When Beansprout demands a full grown St. Bernard, or begs to jump off the roof like his favorite hero for a zillion hours, it's tempting to revert to insanity. Only when I refuse to become involved in the drama am I able to steer him clear of a bigger meltdown. It's very interesting. No bargaining. No threatening. Just a calm low voice. Making clear standard e...