Journey Beyond Survival

* We just picked up Chickadee's glasses today. They are the most adorable things. Like a doll's. At my house, this makes them dangerous. Mean mommy surfaced out of the murk and snarled, "NO TOUCHING!" or "I DON'T CARE IF SHE'S PULLED THEM DOWN TO HER NOSE." Miss THANG and Beansprout think those glasses are so cool. Chickadee does too. When she has attention or she has something really fascinating to watch afar and realize that she can see it. All other times- not so much. We spent the afternoon watching movies to get used to it, then removing them as quickly as we could before the meltdown window closed. It wasn't pretty. It's different. It's a change. They slide down her nose and Mommy got that really annoying elastic band around the back of the neck. Those times she doesn't CARE that they make her look 'gorgeous' and she can see the detail of the PB Beansprout left on the wall. But this got me thinking. My wei...

Family really affects my ability to function. The well being of my children is a factor, but also my extended family. I grew up knit so closely with my brothers and sisters that I think we felt like the largest living organism in the world. Not that we were the biggest family, but that we were connected together underneath just as importantly as we stood alone outside. I depend on family. They depend on me. We've been shaken the past year. It's been with me heavier since this weekend. My nephew died, a month and a half later my grandmother died. In May my own personal tour of Dante's Inferno began. Chickadee began losing words like they were diamonds in sand. Then skills, and finally she ended up in a rocking hell all her own for two months. In July came the diagnosis for Rett Syndrome came. We did more tests in 2009 than I ever thought possible. But, we weren't finished. Hubbend's mother had a double mastectomy because for the third time her breast ...

Since I feel the need to post this sometime, I'll do it today. This is the anniversary. A year ago tomorrow my nephew died. He was seven months old. He had an undiagnosed heart condition. It was terrifying for my family. He was so young. It was horrifying for me. Two months before his parents thought Chickadee had the same thing as their son. She didn't, but there was no way to know for sure at the time. A year ago this week is when my Chickadee's right hand stopped working the way she wanted it to. For good. I remember because when I flew out to my nephew's funeral it was the first time I got comments about it. Why was she touching her hair over and over? Did she have a pinched nerve? Did she have headaches? I didn't mind. Much. They seemed logical questions to me. Anniversaries of tragedies are difficult. Hubbend planned a wonderful evening. He made reservations weeks in advance for a romantic dinner at our favorite expensive restaurant on Valentine...

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...

And so it begins. Thursday is the day where much of my theories are going to have to be put into practice. Chickadee has a Routine-Evalutation-to-See-if-She-Has-Seizures. I'm trying to tell myself this is normal. Our normal anyway. I have to farm out Miss THANG and Beansprout. Hubbend has some foreign business partners flying in. Chickadee and I will be stuck in one room together for 24 hours while electrodes map out her brain activity. This is routine. This is normal. We will be doing this every six months. Breathe in. Breathe out. Repeat. I am SO stressing about this. Despite trying not to. Cookies have crept into the 'bane of my existence' category once again. Chickadee is having a hard time sleeping, which means I missed my workout this morning. Not a great plan. The therapist says waking up in the middle of the night repeatedly could signal seizures. Boo. So, any suggestions as to how to do this? I don't want to backslide. I have to order hospital ...

Anybody ever drink from a sprinkler? Or seen a dog do it? That is what it is like to feed my little Chickadee. It's pretty funny. People sitting in front of us at church or even just hazarding to get in line in front of us at the library or grocery store have learned that lesson. Don't cut in line! HA! I realized the other day that my glasses aren't getting spittle on them from some weird reversal of gravity regarding my flossing. Or from my hubbend's flossing. It's from her blowing constant Raspberries in my general direction. Because she loves me. Some people know exactly what I'm talking about. Others are horrified. Then they are even more shocked when I joke about it. It's funny! It's that or be offended. By their inability to understand. By their obvious disdain for my parenting-seriously, babysit for an hour-or our general unkemptness. I could really go on and on, and I've only been in it for a year. I prefer to laugh. I like to t...

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!

So, it is Sunday. I am feeling late. I want to share how this blog came about and how I feel about Sunday. I believe in fasting for spiritual benefit. I fast the first Sunday of every month, for around 24 hours. Then, I give the money I've saved on food to my church . It's something we do there. I usually dedicate each fast to some specific problem I'm facing in my life, or in behalf of someone in my life and pray for help. January the third I'd been thinking about my weight, and honestly I'd been trying. I have my calendar to prove it. It has all the days on it that I've run. I look at it sparingly, because it reminds me of all the terrible things that happened last year. When I looked at it on New Year's Eve, I saw all the days of exercise missing. My eyes burned and my tongue lumped in my throat. They were they days that my grandma died, when my 8 month old nephew died, and my other grandma died. They are the days we went to see my father-in-l...

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...

Postpartum Psychosis after 7 months of intensive breastfeeding with Chickadee who had-unbeknownst to me-pervasive low tone and an unproductive suck. I talked with 5-10 people about something possibly being wrong with Chickadee, but no one believed me. Who wants to be right about that anyway? Bipolar NOS was my diagnosis upon leaving the psychiatric hospital on April 1, 2008. Yes, that's right. April Fool's Day. The allusion was painful. A close relative-as I've talked about-has bipolar I and has also experienced psychosis. My identity will always be guarded for their sake as well as the others in my family that confide their difficulties in me. Rett Syndrome became a part of our family on July 28th, 2009. Many, many, many tests and doctors preceded that. My daughter Chickadee had many horrifying things happen to her.