Journey Beyond Survival

National television coverage. Wow! The   Gutierrez family  was brave and heroic as they shared their journey with the world.  Brave because they spoke about the difficulties they face every day in an articulate manner, and heroic because of the way they cared for their daughter. I was touched by the way the entire cast handled sweet Anna Gutierrez.  She was not entirely happy.  Not only was it a lot of people and sensory overload, but they were talking about her least favorite things.  As Anna became increasingly upset, I realized it was just like Chickadee. Chickadee hates it when I have to talk to the doctors and tell them all about the missing pieces since the last visit.  It's depressing.  She is-of course-always very quiet when I'm talking about all the marvelous things that she has accomplished.  Unfortunately, to build awareness and to get her help Chickadee must endure being talked about.  But she doesn't like it. I ...

I'm here... But barely. All three of my chiclets are sick. It got so bad that I had to call someone to go pick up meds for me because my kids didn't want me to leave them. Two days later, I waited till it stopped snowing, warmed up and the kids were happy in the sunniest room with a movie. Then I dashed out and bought four or five boxes of all the meds we're using. The pharmacy claims that Chickadee's Rx is expired, and that they called me back. I called them back, then deleted the new message they left without listening to it. Unfortunately, it was the 2nd call, which was the notification that she needed a new script. BLAST. See, it scares me to death when Chickadee is coughing up phlegm. She could aspirate. Every single time She won't keep her feedings down and she hasn't taken a thing by mouth in three days. Thank goodness for the g-tube. Even then she would only keep down an ounce or two at her worst. I'm worried. But, I got ...

What is the difference between me at Easter 2010 and now? I feel . . . DEFEATED Rett Syndrome took me by surprise. Again. Mr. Survival was emotionally unavailable due to the loss of his father. The Beast diet was much too restrictive. Moving. Unemployment. Not being able to get the care for Chickadee that she needs. (stupid money) I look at that list now, and the anxiety is mostly gone. Except for the unemployment. And the Chickadee needs. What I see is things beyond my control. Instead of compulsively reacting like anorexia or cleaning my house, I turn to something else. I rebel and do what I want to do.  The way that I have found that doesn't mean dropping my responsibilities is to eat what I want.  If life gives me lemons, I turn my back and comfort myself with food. This is faulty thinking. Did we hear myself? EATING WHATEVER I WANT DOES NOT GET ME WHAT I WANT. What do I want? I've thought that I should be healthy for Chickadee. It's be...

Fifteen miles. That's how much I got in last week. It helps my brain pull back from the drama I've created within and realize I'm being silly. Endorphins are better than sugar. Why? Because they don't leave my brain bottoming out and a life left to handle. So, it's obvious my cardio has been good. Strength training? Not doing it yet. Food? Food? Oh, you can't hear that maniacal laughter? That's just in my head, huh? Yeah. I feel like my relationship with food is improving. I'm being real. About what I want, what I need, and what I'm doing. I'm realizing that I have disordered eating patterns that are either too rigid to maintain or too unhealthy to maintain. I'm finding my fledgling way. In other words, I have a long long way to go. My portions are off. I'm not really dialing in to my bodies' needs either. I'm dialing into some emotional eating drama from my past. All those miles I'm getting...

Times are hard. I want to be able to post an awesome post. I want to tell you fabulous things about the service dog. I want...to have a stable life again. Those things ain't happening today. My brain is fried. I'm quagmired in paperwork for the service dog. Stability is something I look to the far distant horizon for. Like the Nebraskan horizon. So today when I take Chickadee to preschool, I'm going to get my walk in. I'm training for a 10K right? The way things are going, I just might still get that done before the doggie arrives. Then I'm going to demand my kids help clean up the china and silver from our dinner party on Monday. Or I'll cancel their pizza party tomorrow. Then I'm going to bed. Naw. I don't think I'll feed the fam in between. They don't seriously need food. Do they? hehehehehe I mean... Thank you for donating for Chickadee's service dog. Tweet

Sometimes, nature wins. Nurture can only do so much, you know! Come see me at the Peanut Gallery to pick your side. Beware. I fight to win. Thank you for donating for Chickadee's service dog. Tweet

The Tuscon Shootings : The Blame Game in the Economist   Just about any news I have listened to in the past week was a charged experience.  On Tuesday, January 11, 2011  NPR's Diane Rehm   had an emotionally exhausting show. For me.  It was about "Serious Psychiatric Disorders Among Young Adults."  Their mission and goal was to encourage people to get educated about mental illnesses.  To know the signs. While all of this advocacy was going on, I heard the tone in their voice.  I felt the distinct separation going up.  I saw scenes flash before my eyes.  I tasted fear again. Technically speaking.  I am 'seriously psychiatrically disordered' and from what all the panelists were saying, a hair's breadth away from being exactly like Jared Loughner.  I am the 'they' that the show was about.  Me. I felt the searing pain again of two best friends that were uneducated in mental illness.  We were pretty close, relyi...

We raised $5597 at FirstGiving.com We raised $25 on Facebook with Paypal Ryan and Deb raised $1000 for a new website . And? That puts us over the top! Even when we factor in any fees that Paypal, Firstgiving, or Ryan incur due to credit card use fees, we are over. So. What does that mean? We are on our way! At Midwest Assistance Dogs, they are excited about training a dog for Chickadee. It's a unique situation that has never been done before, so I appreciate all of you being supportive and open minded about it. We are still discovering the ways that Chickadee can be benefited by her Service Dog. So, I'm working with the director. He is reviewing our life, and bouncing ideas off me as to what will work. What does that mean? I don't have a specific doggie, or date yet. It depends on what is realistic for the dog to learn, and for Chickadee/I to be able to help it execute. Basically it's gonna take time, research and experimentation. Usually? i...

We didn't want to worry everyone. Okay, scratch that. I didn't want to worry anyone. Chickadee? She'd have shouted it at you. Guarantee it. But, since I provide the talking in this relationship...Poor girl. She's been sick. Mighty mighty sick. The kind that leaves Mr.Survival and I with dark circles under our eyes, and her chest rattling. She has a hard time swallowing thin liquids. So, when the congestion of this particular flu cleared out that was scary. For both of us. But she's better! Well, better to the point that I'm not scared anymore. I'm thinking about considering that maybe she'll go to Preschool tomorrow. So, that means she is a LOT better than what she was. I am snatching meals and sleep, she needs to have me visible most of the time so she doesn't get terrified. It's hard for her to be alone. But...it looks like that won't be a problem for much longer! After our dog is trained specifically for Chickadee...

I noticed it when we were going potty.  We use the big wheelchair ones at the back.  You know, because we have a wheelchair?  I was a bit glad when she got the pink chair.  I didn't have to worry about irate middle aged women harassing me about using handicapped utilities.  I love the automatic doors, but we can totally do old school backwards. Chickadee likes to have a conversation while we pee. I don't. But, one must accommodate when one has an audience.  Just as I finished up, she implored me. "You need to go potty too?" Yup.  So I started the long process of extracting her from her seat, chatting a little to keep her calm.  Like a lot of 3 year olds, she has a hard time holding it once she's decided it's time. "Here.  We're just going to unbuckle your belt...get your arms right...okay, hold onto mommy and you're out!" Chickadee usually panics at this point.  Gravity takes over. "Let's strip you down, don't wor...

First of all, to truly understand in context, I must explain to you in Gory detail. Yesterday was a very difficult day. Traveling is always hard. For both of us. But yesterday, the doctor's visit was horrifying. Not only was there an unusual amount of detail-mineral and vitamin absorption, bowel and swallowing habits, regressions, physical strengths, Momma's mental stamina, potty training-but there was also a problem. Chickadee needed me to hold her the entire afternoon and evening after her first day at the new preschool. I worried that she might be sick. But there was no fever. Just Mommaness. Then while I was on the treadmill Chickadee woke up yesterday and had a pretty bad diaper. Mr. Survival deserves a reward. Josie at YumYucky told me Tuesday about the Barfing Boat. And it's a good thing. We were at the Doctor's office. Chickadee was stripped down to her diaper, but was wearing my Christmas present I made her. This one: It caught all of it...

...thought you might like to see how we're spreading the word locally... Please remember to donate for Chickadee's therapy dog.

things we do on the potty loves the bus siblings adore her Today is a traveling day. Again. Unexpectedly, we got a call from the Developmental Pediatrician yesterday, saying we could have an appointment today. The DP is the fabulous lady who coordinates all of Chickadee's specialized care. It's her job to know that the Pulmonary recommendations do not interfere with the Neurological, or the Gastroenterologist, Primary Care, or Rett Specialist. Since we got the G-tube placed, we must be on some high priority list. Which is great, because it's time for her regular battery of tests to be run. Swallow study to see if she can still eat what she's eating by mouth, or gotten better or worse. EEG to see if she's having seizures, EKG to monitor for a heart thing that kinda goes with Rett Syndrome, and maybe (I hope I hope I hope not) a sleep study where they stuff her nose full of 6 monitors, attach EEG electrodes to her head, Put on chest and toe and fi...

Today was the day. Yesterday was spent dismantling the tree, and untangling twinkle lights. I waited until my oldest two were in school so I wouldn't have to spend half the day comforting them as they cried. Quick like a band-aid. I 'was' even going to go grocery shopping. So today I could blog. I've decided I love blogging too much to stop. Even if I didn't have Chickadee to process, or bipolar NOS to wade my way through, I still would need the therapeutic effect of putting my thoughts out of my head and crafting them into sense. I need too to be able to connect with other bloggers and buoy them up. I love the community here, and the support network it has become. There is no way I could just stop right now. I want to craft about more than my weight loss though, which is the whole reason I set up this blog a year ago. I've decided that weight loss isn't the only part of me that is part of my journey. If I'm to really get that driving n...

I've been evaluating my blogging. Mr. Survival is increasingly 'around' and it is difficult to blog when he is hovering. I do a significant amount of staring off into space, and then madly typing away. It's apparently hard to resist the impulse to see what I'm up to, and I'm self conscious while creating. Chickadee increasingly demands mama be Present, and the recommendation of the doctor to socialize demands I be present as well. My other two children need mama when they are home. Essentially, my blogging time is getting whittled down to nothing. I've watched MrsFatass in her parallel family cocoon. I've chatted with MizFit silent tween scream and faint and read the wisdom of YumYucky and her links. I've skimmed tweets in spite of myself and family. Bottom line? Blogging and the social networking involved takes too much time. My family relationships are more important than blogging Blogging about my weight loss has sometime...