Journey Beyond Survival

Okay. Now we're tired from yelling the title. I think we need to lie down. Chickadee is not feeling good.  She has special couch potato privileges.  She feels about like this. I feel about like this. So this is what I want to do today. And what I hope she does too. Picture 1 ,   Picture 2 ,   Picture 3 ,   Picture 4

1. 2. 3. 4. One of the few perks to having family far far away is that I get to have my birthday spread out over many days.  The birthday cards in the mail coming a little early (Thanks Foofer-doo) or a couple days late.  My mum likes to be unpredictable, so that adds to the suspense.   This year she called me and informed me that I had missed an email to my account that I now use as a junk pile.  I had a gift card waiting for me.  I deftly rescued said gift card from the junk mail, and proceeded to mull over what I was going to get.  Lands End might not be the most trendy place around, but it is quality stuff.  Plus, I go for classics anyway and I thought I could pick up a few basics that fit for fall. As I entered the site, I saw a promotion for $15 off if you order more than $75.  Hah! I thought.  Not a chance. So I look for something distinctive right off.  Yes, I am aware that this is irrational.  I love looking at their u...

Grandmother, on a winter's day, Milked the cows and fed them hay, Slopped the hogs, saddled the mule, Then got the children off to school. Did a washing, mopped the floor, Washed the windows, and did some chores; Cooked a dish of home-dried fruit, Pressed her husband's Sunday suit. Swept the parlor, made the bed, Baked a dozen loaves of bread, Split some firewood, and then lugged in, Enough to fill the kitchen bin; Cleaned the lamps and put in oil, Stewed some apples she thought would spoil, Churned the butter, baked a cake, Then exclaimed, "For Heaven's sake. The calves have got out of the pen!" ...Went and chased them in again. Gathered the eggs and locked the stable, Back to the house and set the table, Cooked a supper that was delicious, And afterward washed up all the dishes, Fed the cat and sprinkled the clothes, Mended a basketful of hose; Then opened the organ and began to play, "When You Come to the End of a Perfect Day." Author Unknown You ...

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.

Last Monday I got some overwhelming news about Chickadee. She needs a g-tube , and we need to get everything arranged. I sighed a heavy sigh and told the nurse practitioner I would work on Hubbend to get him to come around. Turned out he wasn't as far off that idea as I'd thought. He agreed to it with a fifteen minute conversation on the way home. I told myself it's normal. Our normal anyway. It makes sense, we understand it, it is time. We've had a year to get ourselves ready, since the word g-tube first came up really. But after I hung up the speaker phone, my irrational side could not accept what my rational mind had skipped over. That this is our normal. This is expected, it is in our life manual. My mind was screaming. My littlest sister already has a g-tube. I'm comfortable with idea, which is a big deal. I was comfortable with the idea of a g-tube last year actually, I just wasn't convinced of the need for it. Only one of her six spec...

I got 14 miles last week.  I did my abs twice.  I think that's pretty darn good. It was a hard hard week.  I didn't meet my goals.  But I'm not disappointed.  It took every bit of discipline I had to get those miles in.  It is times like these when Chickadee's situation combines with normal life stressors when I am excessively proud of myself for hanging on and ploughing through. It is tough to get up and out of bed some days, especially when Chickadee throws late night parties two or three times a week.  Or when she gets sick and keeps me worried all night.  Most of all when Hubbend throws me a fabulous birthday party half the night away.  Just my style. This week I wish to shoot for the moon as well. Twenty miles and 3 sessions on my abs.  It's gonna be another tough week, but I'll do my best. Tell me about you!  What was your accomplishment for last week?  What is your plan for this week? *photo by Lawrence Whittemo...

I am teaching once again today at church .  This month the topic is kind of personal to me.  Well, it seems they always are personal to me.  I think I learn more preparing the lesson than anybody ever does sitting out in the audience.  I teach once a month and my subject matter is chosen for me.  It's a talk-or sermon-given at our semi-annual global conference that has been selected for me to teach about.  I've always loved those global conferences. Today, the topic is  scriptures .  I agree completely that the scriptures are wonderful.  I know that roughly a fifth of my commenter friends are agnostic or atheist.  I don't wish to alienate you all in any way, but I am proud to say that you are all very tolerant and magnanimous.  I appreciate you indulging me today. I've had a problem with scriptures since my psychosis.  I am religious.  There was a time when it was ninety percent of who I was.  I literally cannot ...

I had a wonderful birthday. Thanks to everyone on Twitter, Facebook, and here. You guys rock!

Today is my birthday! I've been working really hard on my layout. Doing things that I've been wanting to do for a while. Sort of my birthday present to myself. Well, that and buying myself a purse. Now you can have the song that gave me the idea for Chickadee's nickname. Or my road warrior survival kit for families. Now every time I'm yakkity yaking about something, it will be in the arsenal for surviving everyday life.  I put the button on the side of my blog and it looks like this: It was so much fun writing all the descriptions for everything. Isn't it pretty?  So pretty.  And a little funny too.  I hope.  So for my birthday, would you just check it out for me?  Let me know if there are any problems.  Please?  That's all I want for my birthday.  He He. **edited 8 comments in to add: how hard is it for you to find the categories?  There are four categories, and I'm trying to decide if I'm going to have to do some...

Food. I'm tired of trying to pretend that food should not be cultural, or enjoyable. Tomorrow is my birthday.  I will be .thirty.one.  I shall make no-bake Chocolate cheesecake.  I shall buy myself a new purse.  I shall run/walk for an hour and do the  abs workout  they use instead of waterboarding. I will eat Tasty , Real , and Simple food . And I will hope that my family remembers my birthday. If not, I will run away.  Anybody got a guest cottage? *photo by bluecinderella*

I get asked about psychosis quite a bit. People are fascinated with the actual break from reality. Horrified and yet unable to look away. What I find much more important, is how NOT to get there. I find that most books about mental health are either too sterile or they are condescending. At least, I do now. When I am desperate I buy a bunch of books and try to make their assessments fit myself. The books do help me gain quite a bit of insight, but sometimes an outside trained person, like a therapist, in front of me is what it takes. So, this is what I do when everything is going wrong in my life.  I think you'll find it's very similar to a lot of self-care recommendations: exercise balanced diet prayer positive affirmations scheduled routine prioritize relaxation exercises realistic limits All of them work.  All of them help.  They do not make reality go away.  They are not like drugs, sex, or alcohol.  But they do work.  My reality i...

Yesterday was a long hard day.  No hour long walk yesterday morning.  Beansprout had nightmares and Chickadee had a party afterward.  So it was a long difficult night Sunday night too. I went, did the test and talked the test over with the specialists.  It's time for Hubbend and I to get on the same page and make some decisions.  It's stressful, it's a lot of pressure, but at least it's not wringing hands anymore.  I like it when there is something to be done much better than when there are a lot of vague possibilities that all look bad.  So, there are a lot of phone calls in my immediate future as I research, make appointments and find out how much good I can do out of one difficult choice. miss THANG and Beansprout seem like angels in retrospect but drove me to distraction in the moments that I was trying to talk to technicians, nurses, and specialists.  They earned their restaurant and lunch of choice, but just by the skin of their teeth. ...

Someone stuck a knife in my back and forced me to walk stiffly down the plank. Every muscle was tensed, and I could hardly get my legs to obey my brain. If it hadn't been for the knife, I probably wouldn't have been able to do it. I didn't keep my legs crossed. I've never been good at that. Needless to say, I'm sore. Really sore. Wait a second. I think I was the one that volunteered to do the plank in the first place. Do you know what a plank is? No, a real life one that is relevant to this hemisphere. Yeah that one. OW! Those things hurt! They are despicable weapons of torture. I feel like I really did tumble off the plank and torque in the water, but it's been a few days. Man. I felt like I was going to cry during my workout. It lasted for what seemed like decades and now I'm embarrassed to admit that it was only ten minutes. I literally had to talk myself down and convince myself that labor had been worse. So that is why it is n...

A very good friend of mine came and watched all the kiddos for us and we got a date. She is fabulous, and I don't get to talk to her much. We used to 'work' together at church in the childrens' organization, and we'd talk all the time. I miss her. I told her about this blog. She thinks all of you are great after she read it. We agreed that this is better than therapy, and a nice supplement to husbands. Speaking of whom, we just went to a movie, "Knight and Day" which was hilarious and made things better. It's wonderful to laugh together. Hubbend claims that we don't know how to date anymore. All because we were quiet for ten minutes together. Then we laughed a little. Our tenth year anniversary is coming up. We feel very wizened. We were talking earlier this year about risk factors for divorce. We have three huge ones. Entreprenuer Handicapped Child Mental Illness Add to that that I had three family members die in '09, ...

TMI? Soooo sorry. I also just found out that Chickadee and I are to spend the day driving to hades on Monday. Someone neglected to place the appointment on the fridge calendar. Apparently I am not so digital after all. Oops. I also found out I am to deprive her of food for six hours. Hmmmm. All these things together add up to me savoring these pictures: mmm...must find way to... resist *Photo credit 1*   *Photo credit 2*

Fragility. Weakness. Incompetence. Overcapacity. Tensility breached. Have you ever read MizFit's Challenge Part 1 , Part 2 , and Part 3 ? I've been pondering it for quite some time now. It turns out that I-like Miz herself-ultimately find these excuses to be greater than any small facet of improvement in my life. They are not just about fitness, about writing, about motherhood or spirituality. My excuses are about me. My soul. My heart. My brain. It turns out that the one thing that motivates me is not what I thought. It isn't kindness, coaxing, or understanding. Nor is it hatred, belittlement, or bullying. It is this quote written by Marianne Williamson, made uber famous by Nelson Mandela: “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you n...

At our house we are doing something new. I thought we would wait for a couple more years, but these kids are driving me crazy they really seem ready. I think they will benefit, and I will benefit. It all started when someone said, "EW! Not again!" When I told them what was for dinner. For the umpteenth time. Rolling eyes, slumped forks, standoffs involving grouchiness on all sides, it was all too much. So instead of soliciting their suggestions-again-I put them in charge. That's right. I have a five year old in charge of my dinner this week. The rules are that they have to be healthy, and that they also have to be affordable. So after a round of shooting down, which is so much fun, of mac 'n cheese, ramen noodles, and brownies for dinner, they chose something I deemed Dinner. We made a list of what they needed. We went shopping. We practiced looking at nutrition labels. We checked out. Even Hubbend pitched in and made angel hair spaghetti last nig...

I'm loving being home.  Even though I'm super stressed and not quite recovered from my disaster vacation, it is so nice to be home.  I shaved.  I used MY extra hydrating super moisturizing body wash with my own loofah.  My bed.  Privacy in the bathroom.  For certain.  Need I say more? If any of you are wondering how on earth I can say my vacation was a disaster after writing at the Peanut Gallery , I must say that post was written at the beginning of my trip to the beach.  On the way back was another story, which MrsFatass let me unburden to her so that I could remain a lady.   Are we straight? Being home does have a few problems.  Okay, so it's got the same amount of problems it always did.  I come home, needing a vacation from my vacation and it turns out that sleeping in is just not an option. I am, like so many people, only able to exercise at one point of my day.  In the morning, very very early.  After that, Hu...

Summertime is upon us. Somehow I thought getting home from vacation would mean the beginning of life perfection. I ignored that miss THANG is out of summer school, Chickadee's therapists are circling ever tighter as she reaches discharge age, and life just continues to complicate itself. I've been thinking about it for a long time. Almost the entire time that I've been blogging in fact. I need more balance to help with this crazy schedule. Jenn at Watch my Butt Shrink gave me the idea. I will only blog/write/tweet when Hubbend is at work. I will write my blog in time to post it in the morning. I will read and comment last, so that I can keep up with my writing I will put my health first, mentally, physically, emotionally I will put my family next and let nothing interfere. I've been putting it off for a long time, and hadn't wanted to. But, for the next month I will have to keep up with my family and put them before my blogging. So, I will try to g...

Today is my first post at http://peanutgalleryspeaks.com I promise I won't do this again (much) but nobody's commented yet *sob.* You all know how much I love comments. Will you please come share the love? Yes. I know that fourty-six minutes is not very long. But my butterflies are going to eat me from the inside.

A woman was once in the middle of Nowhere. She needed to make a call on her cell phone and spotted three cell towers in the distance. She trotted off toward one. Halfway there she saw no difference in the status of her bars. So she went twice as far to the next one. No bars. Trudging now she realized the farthest tower had her provider's logo. Still no bars. Climbing the tower, she saw that someone else had been there before her and rigged into the electrical to charge their phone. "Perfect" she thought as she kicked aside the skeleton and plugged in her phone. "911? Four days ago..." I never told you about my sarcasm? Oh. I thought I did.

I tried all of these things last night!  For the very first time, and I finished them all and have a stomach that is very content. I must be maturing. Photo 1 Scallops Photo 2 Octopus Photo 3 Oyster Photo 4 Quail Eggs Photo 5 Shrimp Photo 6 Carpaccio  (raw Italian beef)

The only option that I have this week is to talk about Mental Health. Otherwise I feel like a Health and Wellness failure. Why? I made good food choices even in the face of Adversity this week. I got in a walk Monday and Tuesday totaling 8.8 miles. Hubbend left me to help his mother and I couldn't leave the kidlets. It's not that kind of relationship. Which is totally fine. So, why would that make me feel like a Health and Wellness failure? Because mentally and emotionally I was distraught. I've been overwhelmed and unable to to cope well. I'm reverting to uncommunicative, strong and silent. Suck it up. Yesterday was fabulousness. Turns out I LOVE those people. Even if after three days family ends up, "stinking like fish." Her words. So true. We were all ready to part ways. Conspiratorial whisper: I think somebody sold me out and gave them this blog address. Because suddenly I'm being treated like freezer burn by them all. Oh well...

I've heard it said, "Fake it till you make it" a thousand times. I'm just going to pretend that I don't have any frustration. That I'm just fine. I don't like how ugly I sound when I talk all about it. However, I get to see one of my very most favorite people in the world today. So that will make most of it all better. Suffice it to say that I'm leaving a full 15 hours later from the beach than I wanted to. I'm excited about meeting this fabulous person later. They really are doing their best. There isn't anything nice left to say, so I'll just end. Oh, and a lot of it could probably blamed on Hubbend working a lot and the two of us having other things to talk about besides this beach trip. So I might have known the details beforehand. But I probably would have just built up a good steam. Why? *photo by westy559*

I promise I'll be back tomorrow. Fresh as a daisy, and so relaxed I'll be ready to write flowers into bloom. I hope you all had a great Fourth of July. I miss you, I'm sure. love, JBS 7/2/10

this post was written friday july second in anticipation of vacation time Look. I'm not trying to be dramatic. I'm not composing the most artful way to tug at your heartstrings. This is just how it is. Tonight my daughter cried at me after I'd put her to bed. I came to see what was wrong. Her legs hurt from the muscles cramping in her legs as the tendons shorten and make it harder and harder for her to stand. She had gas that was hurting her belly and she desperately wanted me put her binkie back in for a small measure of comfort. She wanted me to hold her and help her fall asleep. I hate Rett Syndrome right now and I honestly just want to forget about it for a while. The only reason why I'm writing this is because $500,000 is on the line again, and I'll be damned if I don't do everything I can to get that money into the hands of researchers. Even if it's too late for my baby. Please vote. Be obnoxious. Get people to notice.

http://peanutgalleryspeaks.com that's it jackpot

I am finally going to set you all up with my latest project. I've been working on a new blog. My favorite blog, The Apron Stage ended. I cried. Okay, so I missed making outrageous comments. I missed their wit. But mostly, we missed the community. This blog is how we “rose from the Apron Stage’s ashes” as my new friend Jeri Jacobs said. We wanted to band together. Imagine this fitness community we have dried up instantly. Like the flash of a nuclear blast. What would we as a community do? Well, we'd build a bridge right? That's what my Apron Stage community decided to do. Well three of us. Then we connived the rest of them to follow us, bribing them with the enticement of a public forum. They were very obliging. I was surprised. I began to scour the internet for available domains. I diverted the Apron Stage masses with a name that blog game on Facebook while desperately searching for a likely domain name. Finding one, I latched onto it with my underarm su...

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. EverySingleDay. Every single one. I will. You know it. Please? VOTE If you are a fact checker-which I applaud-here are your sources: Wikipedia Synopsis including research developments Or on the identification of the genetic mutation (one hour long): Huda Y. Zoghbi , Howard Huches Medical Institute investigator and professor at the Baylor Colle...

Okay. Drazil commented on my last post. Then I wrote her back and said, "You are so so so cute. Sorry about BYOC. I forgot. Boo." Then I read her post . Read it. Yeah. That last paragraph? That's me burning in SHAME. 1. Seeing that it’s a patriotic holiday of sorts I thought of this one: Where were you on September 11th? I was at NC State in English class. The teacher was gone a long time while we were writing out essays. When he came back, he looked very stricken. He told us vaguely about the first plane and hurried back to where he could catch up on anything that had happened. When he came back he told us about the second plane. Class ended and we walked in a haze to classes. I was standing in the hallway when I saw my first TV. They were showing unfiltered footage, that was later removed from all airways. The buildings were on fire and people were jumping. I will never forget those images. By the end of the next class the plane had crashed into...

It has officially been six months. This goal is halfway over. How am I doing? Well, I thought perhaps we could take a good look at what my goals were. My Goals are as follows: -Run 5 times a week  Does exercise in general count? Cause I'm exercising 3-4 times a week. I was doing 6 times a week before Chickadee's latest regression -Run @ 6.0 mph  Um. I'm back to jogging for the first time in weeks at 5.0 I was doing 5.7 before her regression -Run 20 miles per week  I was getting 20 miles in. Now I'm getting in a steady 11 to 13 miles. Even if it was walking, it's nothing to sneeze at. -Eat only at 3 meals and 2 snacks Done. -Eat only in the kitchen  Getting a leetle slack on that one. We like to eat on movie nights in front of the computer. Stop sniggering at me, it's a 27" screen. It sounds so weird though, doesn't it? -One helping Done. -One treat a day (eventually phase out to complete 52# goal)  Done. Includi...

It's like having the cable guy come in a window only and hour and a half wide, but three days a week and sometimes twice on the same day. It's someone telling me I'm a great mother because I "let the house go" . . . . . . and let the kids have fun. It's having someone checking up on you five times a week. Only it's like telling someone with Alzheimer's because each therapist has a unique reaction. It's having five hours a week when Beansprout must be quiet and self entertained. I sure am going to miss having them around. Nobody can get Chickadee to work like they can. Nobody else has seen all the regressions, or cried with me when she just can't do something anymore. Nobody cheers louder for her, no one is happier when she succeeds. Together we know her idiosyncrasies and strength. I'm having a little bit of empty nest syndrome. Chickadee and Beansprout start school August 13th and 18th. I know exactly what I'm going to...