I've been writing sporadically these days, and I apologize to those who've been concerned about Queen Teen. I'm happy to report she's doing great. Still very tired, but back in school half days. The gagging has improved and she's eating well again. But most importantly, the sparkle in her eyes, the disdainful grin when her dad does something "silly" and the giggly laugh have returned.
It's been hard on all of us, but that girl is a wonder. While I've been racing around trying to keep life in some kind of order, she's quietly but steadily grown stronger. 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. I've put all this energy into the crisis, unable to see the strength in her wobbly limbs. But I guess thats a mom's job sometimes; hurry and put out the fires before anyone can smell the smoke.
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?
Friends. Breathing. A garden filled with veggies you don't know how to cook. A glass of wine. Good dark chocolate. Meditation. Running. Self-compassion.
Writing used to be my anchor, but unfortunately I don't have much time to do that right now. It's frustrating, though. I'm filled with stories as usual but my daughter, my job, and my press require too much mental energy. I'm so tired at the end of the day by the time she's asleep, I'm crawling into bed too. 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.
Fear is my enemy. 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 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.
I seem to be getting used to the fear, or at least making peace with it. I don't deny it, I just try not to feed it. 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 have "fear goggles." All I can see is what she's lost, not how much she's thrived. In March she couldn't eat. In September, she eats hamburgers. In May she weighed 79 pounds. Today she weighs 88. This summer all she wanted to do was rest on the couch watching movies. Now, after a short rest, she wants to do something, usually go for a walk or shop or play a game. In August she was late to school every morning. It's almost October and she usually gets to school on time and will start riding the bus again.
I took off my "fear goggles," looked around, and saw my daughter.
We still don't have any answers and the future is enormous and scary. Her life will be short, but how short, we don't really know. 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. She can run her iPad on her own and can't wait for our Disneyland trip in November. Her cousin is still her favorite person in the world.
Thank you everyone for your continued support and comments. It really helps.
It's been hard on all of us, but that girl is a wonder. While I've been racing around trying to keep life in some kind of order, she's quietly but steadily grown stronger. 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. I've put all this energy into the crisis, unable to see the strength in her wobbly limbs. But I guess thats a mom's job sometimes; hurry and put out the fires before anyone can smell the smoke.
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?
Friends. Breathing. A garden filled with veggies you don't know how to cook. A glass of wine. Good dark chocolate. Meditation. Running. Self-compassion.
Writing used to be my anchor, but unfortunately I don't have much time to do that right now. It's frustrating, though. I'm filled with stories as usual but my daughter, my job, and my press require too much mental energy. I'm so tired at the end of the day by the time she's asleep, I'm crawling into bed too. 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.
Fear is my enemy. 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 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.
I seem to be getting used to the fear, or at least making peace with it. I don't deny it, I just try not to feed it. 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 have "fear goggles." All I can see is what she's lost, not how much she's thrived. In March she couldn't eat. In September, she eats hamburgers. In May she weighed 79 pounds. Today she weighs 88. This summer all she wanted to do was rest on the couch watching movies. Now, after a short rest, she wants to do something, usually go for a walk or shop or play a game. In August she was late to school every morning. It's almost October and she usually gets to school on time and will start riding the bus again.
I took off my "fear goggles," looked around, and saw my daughter.
We still don't have any answers and the future is enormous and scary. Her life will be short, but how short, we don't really know. 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. She can run her iPad on her own and can't wait for our Disneyland trip in November. Her cousin is still her favorite person in the world.
Thank you everyone for your continued support and comments. It really helps.
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