Journey Beyond Survival

Did I tell you it's a crazy week? Chickadee started preschool I am writing during Chickadee's school We're working on a mortgage Hubbend is going to Deutschland I am going to Utah I am pulling my kids out of school so we can go We're going to Big City 3 1/2 hours away TODAY Chickadee is getting a g-tube and this is her consult. I'm just going to do my best and know that I'm good enough right now . After all, I've got plenty of friends to support me . Friends that make me laugh , and let me know it's okay to cry. (that really is a compliment) I hope you all are doing great, and bear with me during this crazy week. I am determined though to get back in the groove and lose weight. Even if I don't have a working scale (yet). I am drawing strength from you, and lending you my own support even if I'm not able to get you a typed out one. We can do this. Let's DO THIS THING!! *photo by Globetroppers*

Hubbend is leaving to help his mom with the estate.  I was mighty tempted to go.  Just so I could visit MrsFatass .  But Chickadee can't do two 12 hour drives separated only by 48 hours.  We impose long drives on her too much as it is.  So I must stay home with her. miss THANG is elated to go on a trip without JBS.  She loves exotic, which means no mommy around usually.  Beansprout keeps changing his mind.  Since I'm posting this before they leave, I'm still not entirely sure that he's going to go.  But  I'm fine either way.  If he stays, we get one more time of just being us before he goes to school.  If he goes, I get some time with Chickadee. At any rate, I'm very happy to report that The Peanut Gallery Speaks  is running smoothly again.  Well, not that anyone on the surface can tell, but I was pulling a lot of strings behind the scene.  If you could come say hi to Carole -whose post I lost and she found f...

That is actually my ring.  For once I took my own picture.  It's a beautiful ring. There's a good story behind that ring.  The diamond is from a man that Beansprout's middle named after.  He had no children.  Hubbend was like a son to him.  That was part of the reason I fell in love with him. Hubbend  took care of his friend like he was his grandson.  We spent many of our dates taking him out of the house for a drive.  I was conned a few times into going alone.  I got very extremely lost, with a slightly senile old man. This man gave Hubbend the diamond from his wife's ring.  It's so beautiful to have a stone carried on from a happy marriage.  He loved her so much, and I think their love has been a sort of blessing over ours. We've been married ten years today. I'm wishing there was a way to express better how I feel about him.  I suppose the ordinary will have to do for the extraordinary today.

"Don't step on it!" Beansprout yelled.  I just about peed my pants, but obliged. Beansprout has become the Keeper of the Catepillars. When I was out gardening in my beautiful flower bed, he just about drove me crazy. Punctuated with the occasional, "LOOK OUT" my afternoon was peaceful, getting in my last annuals and stepping back to survey the fabulousness every so often. I even learned to capitalize on his exuberance.  "Yo Beansprout!" I point my spade, "Your friend there is eating my plants!  You better get him off my plants!" the lovely little boy would oblige!  Worked every single time.  He never got tired of it, and I should know because I tried it a lot of times. He was vigilant in taking care of those plants catepillars. Why am I telling you this?  I should post this on my personal blog right?  Of course.  But the reason I bring that up is this:  he was vigilant!  He attempted the impossible. You know and I know...

Tuesday night 10:30 Fail at getting to bed until Wednesday 2:30  Chickadee throwing a party 3:30 Party still going strong and sounds like fun 4:30 Hubbend gets tired of me sticking the binkie in and talking sternly 5:00 time to wake up! 6:10 got 3 miles of walking in 7:10 missTHANG off to school 7:30 off to Big City for Neurologist appointment 9:00 time to feed Chickadee breakfast driving 10:30 time for Chickadee's drink driving 11:20 appointment time! conclusion: no seizure meds! 12:00 time to go home *phone dies* 1:30 time to stop for lunch 3:00 time to give Chickadee another drink 4:00 home Hubbend unable to help call babysitter Hubbend a bit brusque (at this point all it takes for me to be hurt is a look) Charge phone, call sitter and she's annoyed I'm at home Don't take the time to explain or be defensive Find out her current location (long story) 4:20 missTHANG has to feed Chickadee nobody's happy 4:50 pick up the Beansprout 5:20 ...

Don't panic.  I have to explain.   This is NOT me. No yelling. This is a happy place. We do not yell here. They have much better lighting. I tried to take a picture,  but you can't see the detail. So I'm publishing the  Nordstrom's online pics. Besides. My VeryCloseRelative wants  desperately to remain anonymous. The one that was my bipolar lifeline. I've mentioned them too much. And it's more than my identity at stake. I WILL publish some.  Just with some photo shop... ...like a maze over my face. bwa ha ha ha! Tonight is the night. I'm meeting with all the bigwigs and titans of Hubbends industry. I think I'm supposed to schmooze. Didn't he realize that... bipolar NOS rett syndrome dealing with bajillians of doctors ...those things make it hard to care what people think? Just kidding.  I like 'em. They're all right for bigwigs. I'm off!  Wish me luck.

Eat Chocolate Eat Sugar Eat Lie down and cry Eat Go to the store and buy junk to eat But I decided not to. I wanted to Blog, I wanted to read others' blogs for a lift, I wanted to hop on the treadmill and stay there. I couldn't. I had therapists coming, a new wheelchair to fit, and Hubbend leaving again to see his father. I had to reconfirm to myself again that I'd done the right thing coming home. I know I did, but it was a difficult decision. Chickadee is worse, and she needs to be seen by her team. She needs to recover from too much noise and too little space. I need the teams' support. We have to be here. I'm seeing patterns of regression-which is permanent-but hoping it is simply overextension. But Hubbend needs me too, so it is hard. The victory on the scale only carried me for an hour. I started cycling through the above phases again. I realized I couldn't keep my pants up. Really. So I thought, why not try on the 'skinny jeans...

Do not give birth to a severely constipated Chickadee. Do not give way to her anguish. Do not put Chickadee in a warm bath to 'smooth things out'. Do not listen to her traumatic wailing. Do not throw caution to the wind and strip in 10 seconds. Do not get in the bath with constipated Chickadee. Do not forget to lock the door. Do not let warm water massage child's lower back. Do not panic when hot water is gone. Do not break the aging Hot Water Faucet. Do not keep trying to turn off the now cold water. Do not streak to clean clothing across the hall. Do not yell for Hubbend. Do not send miss THANG for Hubbend. Do not tell miss THANG to ignore Grandma and get Hubbend anyway. Do not get angry when it takes Hubbend 20 minutes to get there. Do not sob and tell Hubbend ALL about it. TOM came this morning. An enema came afterward. Chickadee seriously needed me as a doula. It won't do any good to tell me I shouldn't have done it. I know it was the right thing for us. I...

Who hasn't stayed up for stupid reasons? Because the tv was on, or the stove wasn't clean yet, or the blog wasn't written yet. I've even stayed up for good-sometimes what could be termed saintly-reasons. Packing for hospital trips, massaging Hubbend's poor stressed back, doing laundry so miss THANG can be all Pink for the day. In life we have so many things that are beyond control. One thing that I don't have control of is the night. Something about those witching hours of 2 AM to 5 AM brings out the worst in my family. Chickadee and her late night concerts, Beansprout and his boney-at times paranoid-perpendicular body, miss THANG and odd emergencies that tend to happen the same time as the others. Even Hubbend plays along. He tosses and turns. Or he cuddles. I'm not a cuddler. I've worked very hard. Like this: Regardless, I'm sure that you in all aspects of life can relate. Be it yowling cats in the night, or roommates coming in at 3 AM...

BLOGGING I've never experienced so many people doing the same thing in the same creative space. It's been inspirational. candle method: write something everyday like this- I AM HERE. nuclear method: blogstalk everyone you can find with a blog while referencing their followers for future use. COMPETITION With myself of course. My favorite kind. candle method: increase speed slowly so I don't notice. brag daily on dailymile-I DID IT! nuclear method: walk/run/crawl/roll 20 miles. yell with caps-BOOYAH!-on dailymile. MORAL OBLIGATION Nothing better than a promise. Especially when it's with God. candle method: start a modest blog with the pledge to blog everyday for accountability nuclear method: completely abstain from the biggest crutch in my scotch taped life in order to 'adopt' Lent. LOVING MY NEIGHBOR IN THE MIRROR Considering she's coming along anyway, I want it to be pleasant. candle method: get enough sleep. compliment once daily in mirror. nucl...

Hubbend is Home!! We shall go to church. Then we shall roll up into a cocoon. We may never ever forever come out.