Journey Beyond Survival

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...

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've learned a lot about doctors. Chickadee's primary care doctor didn't believe me for 10 months that anything was wrong. She taught me that I just might be right.  Even after the expert has told me I'm wrong many times. The neurologist, our first specialist, taught me that it takes 3-6 months to be seen by a specialist.  And I don't even know if I'll get any answers. The pulmonary doctor taught me that dire predictions don't always come true. Chickadee outlasted her need for a g-tube by 18 months. The developmental pediatrician taught me the importance of primary care.  Even though the former may prescribe, it is the latter that must call it in.  She also taught me that though things may not make sense, I must abide by the system or get run over by it. Gastroenterology taught us that the medicine we need may not be what we want or expect. Today I'm trying to use all of this knowledge. Really really hard. Chickadee and I went to this stu...

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*

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...

When taking Ambien: Hide car keys in an unusual place Chain and lock the fridge Remove phone battery Nobody likes to feel out of control. Life can catch us off guard. Sometimes it is a medical issue that haunts us: I whine repeatedly about being on medicine that is "known to be responsible for significant amounts of weight gain". Try 10+ pounds! Not to mention the other medicine that caused 35 pound weight gain even though I only took it for a month. Not water weight. Believe me. Helen at Doing A 180 has a thyroid condition. She said, "I was running 40-50 miles a week, eating just enough to sustain myself and gained 25 pounds?!" Other times we are told to buck up. To move on. Get over "it". Sometimes it's a mental issue: I know you guys are dreadfully sick of me and my Elephants but, Elephants can kill us. I don't know very many bloggers[people] that admit this. But one in four of us have a mental disorder . Even if I take two of them (j...

regression I BEFORE pulled up to stand walked with walker turned while walking with walker fed herself with both hands pincer grasp both hands ate dirt ate hair ate sand like it was sugar ate all table foods 15 words spoken 15-20 sign language words crawl up and down 20 stairs AFTER no fine motor skills in hands compulsive movements with hands (touch hair slap downward) 2 sign language word adaptations all liquids thickened to 'nectar' consistency all solids ground to stage three baby food consistency crawl two stairs up not down at all walked with two hands held cruised along furniture 4 oz maximum tummy capacity feeding 9 times a day 1 1/2 hours apart while awake regression II BEFORE crawled thirty feet walked to fatigue two hands held loved whole milk 1/4 tsp laxative in her nectar thick liquids had thunder thighs cruised furniture in both directions with incentive (insert evil Jillian laugh) ate from 1/2 cup to 3/4 cup ground up table foo...