Journey Beyond Survival

I'm teaching in church today. Again. Again because I don't feel ready and I never feel like I'm ready. I'm fighting off a lot of discouragement lately. I feel like I'm running a race and I'm never where I'm supposed to be. I feel like I'm giving my all, yet I'm late for appointments, forgetting things, and disorganized. I used to be so proud of myself for being able to schedule everything and get an amazing amount done. Now the reality is that I need a good twenty minutes a day just staring into space, and another twenty minutes to process what is happening with my daughter Chickadee. Therapy is hard right now, at least home therapy. Every time I do it it reminds me that she might lose the very skills we're working on tomorrow. I know it's worth it. I know she will have better mobility, motility, bone density, lower rates of scoliosis, but I'm still mourning the first and second regressions. My brain just refuses to acc...

Chickadee is worse. Thursday night she started falling over when sitting. She started taking 5 minutes to turn over from her back and get back into kneeling. I've been an absolute wreck. BEFORE is back in full force. I allowed movie night tradition to become soda, ice cream, oreos, pizza. Yes, I had salad. But I was completely and totally out of control. Numb. I didn't care. I weighed myself Monday and I was 194. Today I am 198. Four pound gain in five days. I'm pretty sure I earned it. Just about. Okay one pound might be water from all the sodium and another might might be TOM. Again, I wasn't phased. The thought that crystalized as I stared at the scale was this: I wish it was more. Wallowing, sabotage, rebelling, filling a 'hole', addict, despair, NOTHING describes what is going on in my head. It's too deep, wide, and turbulent to name. I prayed all day yesterday. I loved your comments. I've been trying to find somehow somew...

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 have to admit I've been depressed. I've had a hard time dealing with all this. But I feel different this morning. A bit better. I just wanted to say thanks again for the emails, notes and comments. They really do help. More than you know! *photo by zoniedude1*

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...