- #SCREWING AROUND IN MY DISNEY KITCHEN HOW TO#
- #SCREWING AROUND IN MY DISNEY KITCHEN SKIN#
- #SCREWING AROUND IN MY DISNEY KITCHEN PLUS#
I harvested the basil this weekend and am making several pounds of pesto to enjoy this winter, and this year we enjoyed our first delicious crop of table grapes from our 8 year old vines. Now it is September and we are all starting to settle in to our new schedule.
Thankfully a good friend has helped out while I continued to look for regular child care Rick and I juggled my return to work and QT's reduced school schedule (half days for now) with our usual strategy: take it day by day and stress out the entire time. And then school started I went back to teaching and she started the 11th grade. I was frantically trying to finish the new website for Medusa's Muse before I went back to work (didn't make it). Her recovery was good, but slow, and I got to battle with three different agencies for a shower bench (more on that to come later as well).
#SCREWING AROUND IN MY DISNEY KITCHEN PLUS#
Queen Teen had two trips to Stanford, plus a muscle biopsy (more on that later). By the time August ends, I am longing to hide in a cool bath in a dark room far, far away from telephones and to-do lists.
#SCREWING AROUND IN MY DISNEY KITCHEN SKIN#
It's not just the unending heat or the way my skin bristles every time the too bright sun touches it life tends to triple its speed in August until I'm utterly worn out. I don't know what it is about August, but it has always been hell month for me. Thank you everyone for your continued support and comments. Her cousin is still her favorite person in the world. She can run her iPad on her own and can't wait for our Disneyland trip in November. Today she is in the 11th grade, loves neon colored clothes with lots of bling, is giving her new sitter a hard time, tries to manipulate me to do everything for her, fights with her dad a lot, is easily bored, and hates going to the doctor. Her life will be short, but how short, we don't really know.
We still don't have any answers and the future is enormous and scary. I took off my "fear goggles," looked around, and saw my daughter. It's almost October and she usually gets to school on time and will start riding the bus again. In August she was late to school every morning. Now, after a short rest, she wants to do something, usually go for a walk or shop or play a game. This summer all she wanted to do was rest on the couch watching movies. I have "fear goggles." All I can see is what she's lost, not how much she's thrived. Yesterday I realized that my whole world has been reduced to controlling the fear, so much so that I have become unable to see the good things in my daughter's life. I don't deny it, I just try not to feed it. I seem to be getting used to the fear, or at least making peace with it. I think I'm fine and then: wham! It's exhausting trying to keep up my guard and stay focused on the positive so fear doesn't overtake every moment of my day. It is large and dangerous and kicks me in the teeth at the most annoying moments, like when I'm driving the car to work and all of the sudden my heart constricts with grief. I thought about deleting this blog because I just don't have the time to keep it up, but I've made some wonderful connections here with other special needs parents through their blogs, so I'll keep it going.įear is my enemy. I'm so tired at the end of the day by the time she's asleep, I'm crawling into bed too. I'm filled with stories as usual but my daughter, my job, and my press require too much mental energy.
Writing used to be my anchor, but unfortunately I don't have much time to do that right now.
#SCREWING AROUND IN MY DISNEY KITCHEN HOW TO#
A garden filled with veggies you don't know how to cook. How do you not get lost in that battle? How do you keep perspective when the center of your life has collapsed and everything you hold dear is threatened?įriends. But I guess thats a mom's job sometimes hurry and put out the fires before anyone can smell the smoke. I've put all this energy into the crisis, unable to see the strength in her wobbly limbs. I've focused on stabilizing her health, getting all the supports in place, setting up more doctor appointments, researching Mito to try and understand her symptoms, while also starting another year of teaching. While I've been racing around trying to keep life in some kind of order, she's quietly but steadily grown stronger. It's been hard on all of us, but that girl is a wonder. But most importantly, the sparkle in her eyes, the disdainful grin when her dad does something "silly" and the giggly laugh have returned. The gagging has improved and she's eating well again. Still very tired, but back in school half days. I've been writing sporadically these days, and I apologize to those who've been concerned about Queen Teen.
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