Journey Beyond Survival

Today I'm going to Big City.  Three and a half hours away.  We do it in a day, all the time. The plan is that I will do C25K week two day three.  Before I go. Hopefully, I will take very very good care of me.  I've packed healthy food for me, and six bottles of her drink that costs an arm and a leg.  We'll head out with the other kids as they catch the bus at 7:05 AM.  After waving, we'll head on our way. Then we will spend the entire  day taking care of her.  We'll talk to them about how her eating skills are deteriorating.  How she can't keep down but 75% of her drinks and won't eat solid foods hardly at all anymore.  We'll weigh her in.  We'll deal with the panic of the doctors.  Hopefully she won't be hospitalized.  It's probably a 15-20% chance that she will.  They will tell me something that will inevitably make me cry on the drive home. It will suck. But then, I will also get to tell them.  I w...

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*

Today I'm going to the doctor's for Chickadee.  Three and a half hours away.  I haven't made up her bottles and miss THANG just drove 12 hours yesterday. I've missed my exercise window.  Again. I'm not excited. I also bombed out on Chickadee's birthday.  I was going to have her just celebrate it today when Hubbend and miss THANG were back.  But I neglected to tell the people at church that.  She looked so disappointed, betrayed even. Plus she's worse. She can't roll over very good.  And she's having a hard time sitting up even when propped. I'm really really really sad. *photo by John and Keturah*

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. ...

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*

We got rid of our television when we were too cheap to pay for cable.  I had most of our important child distraction educational videos online.  I cried a little.  But we made it through. It was hard. Then came online streaming video.   My mother had strict limits on television watching.  I still had no self control. I revel in watching what I want when I want. Given Chickadee's condition, it's been Beanspout's babysitter for quite some time during therapy and doctor appointments. Let's just say there is no POINT to my proclaiming self-righteously, "We have no TV."  We are still couch potatoes. Worse than we intend to be.  What is boggling my mind is that I am changing my life. I've lost 28 pounds yet I watch videos on the treadmill.  I sit and blog.  I surf the blogosphere and siphon off inspiration from others.  Yes, it helps me not eat.  Yes, it keeps me very busy. But, I want a different lifestyle.  I want to j...

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 ...

For a quick synopsis. I went to FitBloggin March 19th. Washington DC on March 31st North Carolina on April 1st Chickadee presented her Cement Colon April 2nd I got little exercise and lots of drama for one week I met MrsFatass I went home to small town Midbest on April 12th Chickadee received her new wheelchair on April 13th April 15th was when I tortured Chickadee. I also binged on a full plate of cookies April 15th Hubbend's Daddy died April 16th I threw tantrums at Chickadee's nurses and pleaded with her doctors I finally got a Pediatric GI appointment in July I pled with the Developmental Pediatrician She got Chickadee "jackhammers" for her cement problem Chickadee got an earlier appointment for June Hubbend came home Ten hours later we went to Chicago I taught the women's meeting at church I went to Indianapolis on Monday Yesterday I had two of Chickadee's therapists come I did laundry for my Beansprout and Hubbend leaving for Phoenix Why? Because I...

I weigh one hundred ninety four point oh. Yes. 194.0 lbs. And, I made it 3 1/2 hours to Indianapolis today and all the way back. And took on the navigation system, and a Developmental Pediatrician all together. The Developmental Pediatrician won because she is awesome. I would have kissed her but she probably would have found it offensive. Chickadee is doing well under her care. Utmost confidence. Also, I walked 4.4 miles in one hour. WooT. Yeah, I'm pretty much toast, sitting here like a slug. Mmmmm. I'm happy to be home with Hubbend while the kids are sleeping and watching our huge Hulu backlog. Home while it lasts...til Wednesday when Hubbend and Beansprout fly to Phoenix. We're kinda crazy traveling everywhere. Just wait til you see where I get to go next month. It's a surprise...

A few things that have been out of sync in my life recently that are now in sync. sleep Chickadee's therapy ALL Chickadee's doctors on the same page cleaning house A few things planned to be in sync that weren't in sync and still aren't exercise miss THANG's entourage of playmates [playdates] sterilized house [okay, so even a house that can be classified as clean] flowers all planted Things that are still going drastically wrong Four THIRTY AM wakeup call by rooster Chickadee for a week. exercise clearing out my google reader consistently commenting late for appointments So, while I try again to straighten out my wheels and balance my bubble in the middle, let's talk about you. How do you prioritize your life 1-5. The most important things to you? *photo by zoe.muscat*

Bad news. The happy Nutritionist came on Wednesday. She likes that I feed Chickadee ground up things like broccoli and poached eggs. She is my favorite personal cheerleader. But. Chickadee lost weight. How ironic that this is bad in my life. Chickadee also grew. For the second month in a row. She is two pounds down and one centimeter up. This is the cause for my missed runs and funky 'tude. She's going to need a GI pediatric specialist. They need to do a study of her digestion. I don't want to do this-add another doctor-again Pray if that is what you do. Think happy for us if you remember. *photo by Sighlent J*

Stressful day. We had non-stop action yesterday. Now we are prepping to go on a 7 hour round trip for another Dr. appointment. I'm hoping it will go smoothly. All the tests have come back great for now. Her skills are back. I almost feel like canceling the appointment. But, maybe the lung Dr. will give us a year before we have to come back. That would be nice. So, we go. The best part about this? I've been able to handle the stress so far. Are you sure you read that right? I am. This exercise thing is TOTALLY AWESOME! I know, I'm dating myself. Who cares? You know home life is stressful when a dr. appt. means a break! Ta for now! I'll try to swing by your blogs at the hospital.

*little girl from flickr unrelated to me* My life is wobbling. My schedule is out of balance. I'm dropping plates instead of keeping them spinning high above me. My pot is beyond wiggling on the wheel. The pot is woefully peanut shaped! With Chickadee's perpetual appointments, the rest of my family's dental care (and it's health equivalents), real estate machinations, and various recreational *gasp* appointments, I don't have time. But, I have been creating time out of thin air and blogging with a side of exercise. I should really give lectures on space-time curvature. Every mother should. Looking around my house, I have a question for all my fellow bloggers. What kind of scheduling magicians are you? I mean, for goodness sake, the sheets on my Beansprout's bed don't even remember their expiration date! Don't even talk to me about the mopping the floors or vacuuming. It was before the hospital that it got done. I know that I am recovering from ...

So the trip to the hospital was stressful. I got into my car in the parking garage, and I just wanted to start crying all the sudden. It's a lot to handle. Up all night with a poor little kid that doesn't want their head taped up anymore or that stupid wire box trailing behind them like a tail. To top it all off I scheduled a communication evaluation when the VEEG was finished. You know, save the 7 hour round trip and an entire day spent. Two fer one. I wanted to cry like somebody had died. I had no idea I'd been feeling like that the whole time. On the way home I slid of the road twice. It was surreal. I'm steering one way, and the car is sliding off the road. Seriously. At least I had the 'non'-sense not to brake. Two semis behind me and a whole train of cars. I was in the left lane, and I slid onto the shoulder. I tried to get back on the road, but I slid off again. I have no idea how I stayed on the shoulder. I'm really glad I did. I saw s...

This is what it looks like. Only this little girl was having an EEG. The difference? Twenty-three hours. Chickadee has on a hat a lot more permanent than this. However, Chickadee is only this miserable when trying to go to sleep. Or when they put it on/take it off. I've really realized that a huge amount of my stress is due to anxiety about being prepared. I worry about making sure we really have an appointment, or getting enough laundry done so that Beansprout can have a couple emergency pairs of pants. I worry about food, about forgetting the components of Chickadees fluids, or about having Miss THANG's ballet stuff clean and packed for her to take to the sitters. It doesn't help. I still forget things. Several 'crucial' items on my list always get squeezed out. My stress does not seem to be directly related to the tasks or the tests. My stress seems to be about the chaos surrounding the events like this in my life. My stress has the effect of me cla...

Yesterday was another out-of-house day. Miss THANG had ballet. Beansprout had storytime at the library and Chickadee was supposed to have an eye doctor appointment. My bad. I think it was a subconscious slip sabotaging me. My experience there was less than stellar. To top it all off my house was again to be occupied and unavailable. We went shopping. For our very own healthy snack pack for the trunk. I didn't go off! I did not get to exercise, but it was a pretty good day. I've got exercise done today though, and I'm excited for another day. Maybe I'll clean my house (Don't tell Kat and Lisa it isn't clean yet!)

ME WANT COOKIES! OwNUM NUM NUM. Did I? Or didn't I? Days like yesterday make me feel justifiably in need of comfort. Huge machinery whining around my Special girl, lead vests needing to be worn. Specialist after doctor after technician talking seriously. Recommending things I should do more of, telling me I need to do less of. Looking concerned. "You need to get respite care, take care of ALL your relationships." Ha. I just want a morning alone so I can write. "She shouldn't be drinking that/vomiting so much/holding her head that way." Really!?! NINE feedings a day. Nine. I'm so tightly wound I can't quite relax before my hour and a half 'break' is done. Good thing they didn't tell me she needed night ones. Someone would've gotten hurt. So did I cave on my first test of the year? NO! I did not order the soft drink, I got a HUGE water. (Incidentally I finally figured out how to get a HUGE water at a fast food restaurant: "...

I'm tired. I traveled to a BIG CITY on Saturday with my church ladies. I did Church and other Sabbath things on Sunday, then I had a MONSTER day on Monday. The dentist did not spend hours extracting anything. Thank goodness. He only used that high pitched one that sounds like the whine of a missile for a few minutes. It felt like forever. But now it's done. Today is what is really making me tired. Miss Thang and Beansprout are farmed out, while my Special-girl, Hubbend and I go to another BIG CITY. Sometimes small towns are mud. Sometimes they aren't, but today they are. It's hard to work out and eat right when the only time I have to breathe will be in the car driving. This would definitely have been a blank day on the exercise calendar of yesteryear. How on earth do you guys get things done when you are busier than all get-out, and then add on the stress of medical tests and serious doctors? AAAAAAAAAAAAAAHHHHHHHHHH!

Don't you love it when someone helps out? I do. I'm writing this post on Saturday, knowing my week is going to be crazy. I have two therapists for my daughter tomorrow, and one appointment-for myself-at the dentist. That is pure craziness, except that hubbend is unable to take Martin Luther King Jr. Day off as planned. Speaking of the man inspiring the holiday, Martin Luther King Jr. was wonderful at asking other people to help. A master. He got them to work together. I am finding the more visible my daughter's disabilities, the more people want to help. People have been sort of watching my on my descent through Dante's circles and emerging again. Watching, and waiting for me to get close enough to extend their hand. My kids are all going to be watched by someone else tomorrow. I'm relieved. Because, I also have a babysitter for seven other day trips in the next two months. I am relieved. It is a worry to me to have so much to do for one and have two le...

I got stuck today. The exhaust pipe was sputtering until the snow melted enough to be below it. I felt like those marooned drivers standing beside my drowned car as part of some smart aleck photographer's spread that captures a flood. I swear it didn't look that deep. And most especially like them, I should have kept driving. But no, I had to close the garage door! All those burly men roaring down the street in their huge 4x4 trucks with plows on the front. Blargh! I tried everything. Everything I knew. Shovel, reverse, forward, spinning the tires really fast until the snow is flying higher than my car. Nada. Finally-after dialing three times and hanging up-I called my husband. The man comes bounding up to my car, and tells me to go wait in safety. I try to tell him we may as well surrender, but no. "You're not stuck until you have to get pulled out." He says, and walks confidently to my car. Thirty seconds later he whips a 180 to stop beside me and o...