Journey Beyond Survival

You know how I said that Chickadee had to go to a pediatric dentist? And how she had to be put under just to have her teeth cleaned and cavities filled? I can't believe this. Chickadee already got it done!!! Yup. They just had me hold her hands down, and they got her done. Fantastic. That totally makes up for the two trains and traffic that made me fifteen minutes late in spite of planning to be half an hour early. It also makes up for being an hour longer on the way home because we got out of there at rush hour. No contest. But guess what else happened? Our primary insurance doesn't pay for dental. We got pre-approved for the visit early. From the Pediatric Special Needs Health Care. (I don't know if it's Medicare or Medicaid I get mixed up) I had to call/argue/persist for forty-five minutes to get seen. But GUESS WHAT!?! I did it! I didn't back down. I didn't cry. Not even once. Not even when Chickadee was yelling at me becaus...

I'm bursting with things to write about, but today cannot be that day.  I have to drive right back down to that hospital for another appointment.  Thankfully it is only for a one hour appointment.  I'll just drive seven hours to do it. Chickadee is meeting with a pediatric dentist that can deal with her inability to swallow water or other thin things, like dental paste or fluoride rinse.  She also has repetitive hand movements that could pose a tiny problem, even for the most practiced dentists.  So Chickadee must get cleaned and/or patched up under general anesthesia.  This appointment is to get the ball rolling and become a patient. I'm also hoping that we can get in her physical therapy appointment, but it all depends on what time the dental appointment really is.  Because I have it on my phone, but in a really weird 'new' format.  More efficient.  HA. More like confusing. Please, tell me all about your Memorial Day!  I fig...

You know you've been at the hospital when you clog the toilet when you come home. You know you've been at the hospital when you're glad for the free food, even the stuff in the lounge. You know you've been at the hospital when you realize how much you pay in premiums and that none of that food was free. You know it's been a good trip to the hospital when you're excited to make the call to grandmas and friends and loved ones. You know it's been a good trip to the hospital when your husband rides the goodwill wagon through the parking garage. You know it's been a good trip to the hospital when all you have to do is a general anesthetic MRI. You know you've been to the hospital a little too often when that is good news! photo credit

It went fabulous. No meds, no doctor wanting meds. Dr. just wants us to have an MRI later this summer. Thanks for thinking of us. Sent from my iFrenzied life P.S. Wahooooooo!

One more day of finishing up the 48 hour test. It takes forever doesn't it? Trust me. You don't want to talk to me right now. I've spent two days scrounging up food, neglecting hygiene, and sleeping on a jack knife sofa covered in plastic. Plus, I'm pre-posting this anyway. If I know me, I will be nervous right now. At 9:00 AM I will troop away from the VEEG center. Chickadee will have a combination of Dental cleansing paste mixed in with paper mache glue and a bit of "conditioner" that the techs try to help things out with. It usually sticks up like a good Southern bouffant, but since we're going for double the hours we might get up to a beehive quality pouf. Hopefully on Monday, I'll feel like typing about the results. I'm not so sure from this end of the tunnel. Please pray for me. That we can handle the seizure meds if she's having seizures, and that the neurologist will listen to me and keep her off them if she's n...

I prescheduled this post since I'm still at the hospital... I can dream about this garden, can't I? We've been working hard. In the morning before the kids wake up, and after dinner. My kids have even been helping. I know. They must be host bodies for parasitic aliens. It's the only explanation I've got. Miss wants flowers for the lemonade stand she mans every year. Mr. Survival wants to save money. I tend to buy a lot of expensive produce. I don't buy junk food. Lately though, he's been finding convenient excuses to  "swing by the store"  and my house has junk food again. So, I am no longer saving money by buying expensive produce. Hehehe. I'm nasty and I just like to play in the dirt.   Beansprout? He's what my brain should be.   Six. We like to play in the dirt and watch what comes up. photo 1 credit photo 2 credit photo 3 credit photo 4 credit

Chickadee has a test today. I've seen a few new 'episodes' of staring which aren't like the others. She's more vacant during them. She's not staring at something shiny or otherwise distracting. That means calling the neurologist. Which means VEEG . With the electrodes on for 48 hours this time. While she always has an abnormal EEG, Chickadee has never had seizures. But, Rett Syndrome has a very high risk for them. All Rett children have an abnormal EEG by 4 years old. But, 60% or more have seizures by age six. So, it's kind of a big deal, but I've been trying not to think about it. In order to further distract myself, Please give me ideas on how to choreograph a dance. To make the technicians laugh. video credit

homemade yogurt I made my own yogurt. I know. I don't even shave my legs either. But I've got white blond hair. And I'm not really a hippie. I promise. Mostly. Whatever. I guess I'm about 60% hippie. So think whatever you like. straining homemade yogurt It only takes 1/2 cup of any yogurt with live cultures, 1/2 gallon of milk and a crock pot. Plus time, and jars, and a cloth covered strainer, but who doesn't have those?  All in all it takes 13-21 hours.  But the most labor intensive part is straining out the whey.  The more whey I get out, the thicker the yogurt.  The difference in time is whether or not I let the yogurt set up one more time in the fridge. Most of the time is spent in the milk getting warm, cooling off, and . . . well, turning into yogurt. berries in yogurt We don't drink a lot of milk.  We don't eat enough greens to get our calcium that way either. So we tend to eat yogurt a few times a week, as shown in someone...

Woo! Are we all perky from our weekend off? I feel good. How 'bout you? Summer's getting close. Can you feel it? My kids can. They want me to get out the 4' pool someone gave us last year. We couldn't put it up where we lived before. Because we lived above Mr. Survival's business. So every day it's warmer than 55 degrees they put on their suits and beg me with goosebumps bigger than a two week boil. They could try the patience of the sagest of the Sages. Come make the jump into summer with me, over at the Peanut Gallery Speaks . photo credit

Due to the amount of friends I have participating in FitBloggin'11 this blog will be closed until Monday. It may also be that I'm grieving very sad I won't be there myself. I was tempted to just grab my unsold ticket and drive, baby. I could always sleep in the car. But that would be irresponsible. Or ridiculously fun. photo by AndYaDontStop

Laurie was saying yesterday that I should be a writer. I love you Laurie . I want to be, and I'm going to keep writing and trying to make it profitable. In the meantime I've got to find something to bridge the gap. I thought maybe some of you writers out there would like to see some fabulous writing things I've come across? Here's a website that tells you whom you write like . I copied and pasted my last post and it told me I write like Cory Doctorow . I did it a few weeks ago when I discovered the site and it told me the same thing. Who the heck is Cory Doctorow? I don't know but it must be true. Mr. Survival is headed to the library to take back the overdue books he and Miss got on their last date together. Maybe he'll pick up a book or two of his for me. It's probably a mass conspiracy to get us all to read new authors, but it feels a bit like having my palm read or something. Very exciting. The second is a lovely sentiment. About wr...

I was driving along, minding my own business yesterday when it hit me.  A beautiful idea out of nowhere that makes so much sense!  Has that ever happened to you? It dovetails beautifully into where I'm going, what I want to do, and how I want to get there.  Why didn't this occur to me earlier? I started thinking about how Mr. Survival came up with what he wanted to do with his life to support his family and hopefully have fun.  I started thinking about how much I had to do with any of those choices. I could have had a lot more say.  But, I chose to trust.  I realized with that lucky wisdom of youth and inexperience that he would know better than I.  We talked out his ideas, and I was pretty honest about what I needed.  But, the decision was up to him. This time I've been motivated by fear.  Everything clenches from my teeth to my hands to my bottom and my toes when I think about running out of money.  That is silly.  We wo...

I've been mulling over a lot of things.  Most of them happy, exciting and beautiful.  But, the thing that is compelling me to write is not.  It's a dark tangle in my stomach and I need to get it out. I had a few conversations over the span of the Great Blogger Downtime and this past weekend.  Conversations that really hurt. I don't really need understanding , so much as I need to get this out . Psychosis is terrifying. It is worse than being locked in a basement in chains in the dark.  With spiders and rats running around over my bare feet.  I hate psychosis more than death, more than fatness, more than Rett Syndrome. I've written about it before.  I've tentatively talked about it.  But, I clammed up again.  It hurts when someone thinks I'm less religious than I am. It hurts when they don't understand the journey I've taken.  The measures of prevention I take every single day.  Of course some of it is motivated by fea...

My kids are developing a new form of time management. They are trying to see how long they can take  to do absolutely everything I want them to. Mr. Survival and I aren't so patient right now. Not as much as we want to be. Not as much as we should be. We were  are desperate. I decided to teach them a lesson for Family Night. I made up the labels of the things we needed to do after school. I attached each label to two different groups of ingredients. The front line has more fun things and less chores. The front line could do chores in any order they wanted, until school got out in June. If they chose to do things their own way, they didn't get these ingredients. Vanilla. Salt, baking soda, baking powder. They tasted it. They rejected it laughing. I rubbed my hands together in glee. Sugar first. Of course. Browny's ticket was on the chocolate chips. Fitting. Browny + egg = I'm winning Right? Mmmm. They put in the flour last. Without mixing anything e...

When I grow up retire from everyday mothering, I want to travel the world. I want to do it in comfort. In style. *style* Hem.  Well, let's just say this is a bit more my speed .   I could stake out my favorite movie premiers.   It would be awesome .   Astoundingly so. At any rate, I could probably attach it to my bicycle  and finally solve that problem of getting  Chickadee on our family bike rides.   In Style.

I'm so glad that wasn't my day.   I'm not going to share though.   Because ... well ... I'm just not.   Maybe if you do though!   Share your stories with me below... it's a link up! I'll share later to day if you will. Paste this code to share the link up on your site as well. I put a space before each < or >. Simply take out those spaces and it's a working code. < script src="http://www.linkytools.com/picturecaption_linky_include.aspx?id=87964" type="text/javascript" > < /script >

I'm going with Miss on her field trip today. She is excited! I'm excited because Mr. Survival always goes. This time she asked me! Chickadee will now get to spend the day with Daddy. I'm not sure if I want it to go well or for him to get a taste of my medicine.

The problem with having an intelligent three year old that is immobile and can't use her hands is engagement. Yesterday Chickadee spent the entire day harassing me. I mean, I get it. 1.  She can go potty but she can't get there by herself. That sucks. 2.  She can understand the story I read to her but she can't tell me what she thinks. That sucks too. 3.  She is delighted by so many toys but she can't play with them independently because of her hands. Complete sewer system suckage. 4.  She hyperventilates because of neurological impulses and mommy says, "Honey, what is wrong with you today?" What a load of crap. We looked at each other three or four times throughout the day. "I don't know what to do for you."  I said blankly. She looked at me with her wizened but slightly desperate eyes that said, "BRING IT." So.  I have a three year old with angst.  I've got to do something people. I've thought ...

So much of my life lately has revolved around one thing. Employment. It's been driving me a bit batty.  Mr. Survival have been round and round the issue and it just doesn't make sense for me to find a job.  I don't have the years experience, nor the degree to be able to pay our bills let alone Chickadee's childcare. So that makes sense.  But, it's difficult to be at the mercy of someone else's ability to get a job.  To witness their doldrums and be able to identify so well with what they're going through.  I've been fighting off feelings of frustration and anger.  Mr. Survival is dealing-very well-with a case of the dumps. I haven't posted about it, because it's not my life.  It's not my issue.  But, I realized last night that supporting him IS my issue.  Anxiety and frustration about feeling paralyzed and trapped are my issues. So I'm not really sure how to navigate this new turn my life has taken.  Privacy is obviously very...

I miss waiting for a new book. I loved being so addicted to a story that my mind was sucked inside the book, leaving only a shell of a body behind to bump into things.   My family misses the animation that lasted for at least  ten days prior to a book coming out. I miss the disgusting new as well as the fascinatingly winsome. You too?  Go here for more delicious creativity . That is, until THIS!

BuyT-Shirt Here Please remember to email me if you want to buy my   FitBloggin   ticket. All offers will be considered.  I have already submitted my refund for the hotel, so that is no longer on the table.   Also, it's my week to host over at the Peanut Gallery Speaks.  I will head up the week today , and will be followed by Charlie on Tuesday, Jeri on Wednesday, and MrsFatass on Thursday. If you'd like to be a guest poster, please let me know and perhaps we can have you one of these Fridays coming up soon. What is my post about over at PGS?  It's about me spanking a kid at Sprout's birthday party of course.  Well, maybe not.  Then again, why don't you come see? Sprout's birthday came so soon after Chickadee's hospital visit that I barely scraped together the usual glories of the day. It's his turn for a party, but I just couldn't get on top of things.  Mr. Survival saw how guilty I felt at not being able to get it done and ...

by pink fingerprint I've been struggling to replace one part of my team.  The drug prescription part of it.  It struck me that in spite of my mental health education and google savvy I still have struggles getting what I need and want out of the mental health system. Six weeks of research, insurance, doctor calls and referrals and I still don't have a person with a prescription pad to call mine. ( update, I do now! ) So, I decided to write a post about it.  Not being 'normal' I do the next best thing.  I normalize. prioritize needs gender, specialty,  diagnosis, talk, insurance, cost See the link above for a post about what each need can mean for who you want in your corner. start small So, we're deciding between talking and medicating.  Not sure? See link above or go with talking and a therapist.  They are compassionate and do not usually have the highest price tag in the bunch.  A good therapist will guide a patient to other needed...

I had the longest day yesterday, and I'm off again.  We have therapy, then a church thing called Visiting Teaching, and thank goodness Chickadee doesn't have school.  Because I sure thought she did. I hope you all have a great day, and enjoy the video!  I found it on Dooce and I'm kind of a nerd so... Nature by Numbers from Cristóbal Vila on Vimeo . (smaller is better, I always have a hard time with the buffering on this)

photo by Akiko@Flickr I saw a few really good ideas to keep my belly from growing.  Stem the tide.  Reinforce the dike. I have a million more stupid analogies.  I'm moving on though.  I promise. I drive a lot. We live in a small town.  I've done the math and being reinforced by other Rett Moms, we have our mathematical solution.  I need 23 hours in a day to do all the therapies, potty breaks, reading books, bath times, wardrobe changes (3+), 4 bottles, 3 pump feeds in the night, and play.  Plus I need to sleep.  I can eat at the same time as the kids and even cook magically, but definitely not sleep and get everything done. I don't exactly have time to pack myself lunches yet.  Someday I'll be that superhero.  Someday someday soooomedaaaaaay. But.  Until that time there is this: 37  HEALTHIEST RESTAURANT BREAKDOWN For those freakish days when I do get to be June Cleaver there is this: PARENTSDISH TOP 20 COOK...

It feels like I've become a detached voice, writing but not feeling on this blog.  I'm living a lot of things that don't fit neatly into my bloggable ownership file. Even now, I've spent an hour with this tab open to write a new post and I've done absolutely everything else possible.  For once I can't put a finger on what I'm feeling.  I don't fit into any definable box. On one hand, I'm spending an hour in therapy with Chickadee and another hour round trip three times a week. Mr. Survival is fighting off unemployment blues. We cannot shake things up and have me go to work. I'm not going to go to FitBloggin'11 . But, on the other hand, Chickadee is STANDING in the stander for minutes instead of seconds! Chickadee is grasping things momentarily for the first time in eighteen months. I'm so in love with Mr. Survival it's unbelievable. We are tighter as a family than we ever have been. I'm stressed and frustrated.  I...

I've learned that community is the difference between surviving and thriving!  From Chickadee's dog  to the quiet support of showing up day after day and putting some words down at the bottom of the page for me to read and smile at. I've learned that bloggers are some of the nicest, most considerate people I've never met.  We live our lives, love our lives, and share out lives.  We know what is important to us.  I know you care.  I will forever be amazed at the lovely people beyond the digital screen all around the world.  How we build networks of beautiful connections.  Connections that sustain us, bless us, and help us to thrive. I've learned that bumps and bruises never stop happening, especially while learning.  I've learned that I tend to sit and sulk a while, sucking my thumb.  I've also learned that while it isn't my "ideal" response, sulking is definitely a valid response.  When I treat myself as I would tell a stranger...

Day 1 Radio silence. Phone is dead. Day 2 Chickadee had physical therapy.  Lots of compliments. I waited an hour, and gesticulated wildly for an hour.  I got my phone replaced. Chickadee was an absolute angel. Day 3 Whip kids into shape so they will whip the house into shape. Two bathrooms cleaned.  Bedroom tidied. No dishes done.  No picking up after kids. Mr. Survival too busy to talk. Day 4 Miss complains that I won't entertain our friends we see. Miss learns that a fairy isn't actually putting away after her. Sprout loses Browny the guinea pig  and is scared to tell me.  Mr. Survival travels to where there is no reception.   Day 5 I'm wilting. Chickadee has therapy.  Therapist could tell ZIP therapy happened. I use this FUN grocery shopping/couponing widget to make my list. I cry a little at night. (okay, a lot) Mr. Survival stuck wiring a house for  his mother.  Day 6 Preschool for Chickadee. ...

*my sisters {married in or otherwise stuck with me} and my mom are fabulous.  We keep in touch with an online private journal. I found myself updating with some things that I thought might be amusing. Who am I kidding, I want to make more people laugh with my corny jokes.* I’m happy to report that the visit to the Rett Syndrome Natural History Study went much better this time.  I think it had something to do with the fact that I broke my iphone and had to take books to entertain Chickadee.  Wouldn’t you know she chose the Cinderella book with dress-up veil and gloves attached? It’s hard to think that a girl happily absorbed in her book and enthusiastically interacting with anyone commenting about her book was “uninterested in her world” like they said last time.  Plus a few props like a veil and elbow gloves never hurt to make a pink wheelchair occupant even more adorable.  She finds strangers so much more relatable when they're addressing her as Princes...

photo by rwangsa Chickadee has a new song. It all started when she hit me over the head. No? You're not gonna believe that? Oh, right. I've informed everyone too too well of her abilities. Shame. Well, I suppose it was my fault then. I was carrying Chickadee on one hip and our travel toiletries were on the floor. I needed something. I'm sure it was vitally important, but I have no idea what it was now. I bent down sideways. You know. The way that my mom taught me to bend over modestly in a dress. Chickadee doesn't like the blood rushing to her head suddenly and feeling like she's going to fall to the floor. With counseling, we've reach the modesty agreement. This time, it wasn't a good plan. The toilet was right in front of me, and my cell phone hit my hip and worked it's way up and out of my pocket. Well, you know the rest of the story .  I am so glad we have a warranty, and the lady was super nice enough to give us a new phone. ...

I don't have money for a gym. I don't have money for a trainer. I like routine. What do you think? Anybody else out there in the same boat? I'm thinking about this workout called 30 Minutes to a Sleek Physique. What are your thoughts? My favorite part is that I can do it anywhere. Reminds me of my friend MizFit . *I wrote this before she made her big announcement yesterday.  She has her own!  My Trainer Fitness  doesn't need a computer, and goes anywhere without internet or electricity! Genius.  Pre-order now.