My husband and I were excited to finally have a night out together. Between lack of childcare and me in school every Fri and Sat, date nights have become a rare treat. We receive respite from the Regional Center through a non-profit, but our workers have been overbooked and overworked. I called one of our regular workers to see if she was free this week and she agreed to come this Saturday at 4:30. Hooray! I don't have class AND Rick and I can have a date.
4:30 arrived. No sitter. I called our worker and got her at home.
"What time will you be here?" I asked.
"Today?" she said.
"Yes. Today. 4:30."
"Are you sure it's today?"
"Yes. I called earlier this week and you said this Saturday was fine."
"Let me check my calendar."
I heard her asking someone in the background to bring her a folder and when she finally got it she said, "Oh no, I wrote it in the wrong place. I'm so sorry."
"Okay. Well... goodbye."
Great! No date, no respite, no break from the week long 24/7 care-taking marathon.
When I told Queen Teen she grinned and said, "Really? You're not going out tonight?" She gave me a hug and giggled.
I'm glad one of us is happy.
But when I told my husband he was less than thrilled, and I have to admit I'm very disappointed. I adore my daughter, but the non-stop childcare gets exhausting. I need a break, a little time with my husband, adult conversation, and the chance to eat my dinner without needing to help Queen Teen with hers.
Sigh...
Looks like I need to find another respite worker.
Friday, November 27, 2009
The Christmas Jar
On the day before Thanksgiving, a strange package arrived addressed to my husband and me. No name or return address. Inside was a book called "Christmas Jars," and inside the book was an envelope which contained a cashier's check. Again, no name, no address, no note of explanation.
"What's this?" I asked, holding up the check and book.
"I don't know," my husband replied. "Did I sell something on ebay?"
"Maybe, but why the book?"
"Weird."
We discussed the possibilities. He'd just done a bunch of computer work for a friend for free so maybe this was her way of saying thank you, or maybe it was from his other friend who liked to surprise people with silly little gifts. But why the money?
I sat down and scanned the book. The book and the money must be related. Flipping through the pages I read, "Since the first printing of the Christmas Jars, many readers from across the country have contacted me to share their own personal Christmas Jar miracle..." Oh my God.
"It's a Christmas jar. Someone sent us a Christmas jar."
My husband looked up from his laptop. "What?"
I read the passage from the introduction to him and then read more. "I hope that when you give your own jar away, or if you've received this book with a jar meant for you, you will visit the website and tell me about it. The world would love to hear your anonymous story."
We stared at each in silence. A stranger had sent us a check which equaled whatever amount they kept in a jar to help us with Christmas because they felt we needed the help. No strings attached or word of explanation. Just a check and a book.
Neither my husband nor I knew what to say. On the one hand it felt wonderful knowing there were people in the world who wanted to help and had chosen to help us. On the other, it was horrible to think we were one of "those" people: the needy. I looked at our situation and saw two unemployed people who could barely pay the bills and who went to the food bank twice a week to make ends meet. We were raising a child who had major disabilities and we'd decided we couldn't afford Christmas this year. I knew it was bad, but my husband and I tend to be stoic; we just keep working and moving forward without much thought about our circumstances. What else can you do? But to an outsider, I guess our situation looks like something from a Lifetime Movie. Looking at the book and the check, we both felt grateful, humbled and ashamed.
We didn't talk about the gift anymore. The reality of it was too much. Were people really this kind? How could we possibly accept this? Did we deserve this kind of handout? Are we really this bad off that total strangers are sending us money?
It took a couple of days for me to let go of the shame generated from the gift. Feeling shame takes away from the spirit of the gift. Giving us the book and the money made whomever sent them feel good to know they could help. We should accept it with gratitude, not thinking of it as a gesture of pity, but as a sign of good will. And when we're back on our feet, we will pass on our own Christmas jar, hopefully next year.
Whoever you are, thank you for the Christmas Jar. And thank you Jason F. Wright for writing the book.
Wednesday, November 25, 2009
Gratitude. Bah Humbug.
I've been feeling an awful lot of that "humbug" feeling lately. The holiday season is upon us again with all its demands on our time and dollars, heralded by the turkey trumpets of Thanksgiving. I'm too busy and worn out to do the holidays this year! And then I started reading how grateful everybody is, which made me roll my eyes. Oh joy of joys, here we go again. Once a year we all haul out our blessings list and start sharing. Whatever.
This anti-Thanksgiving grumpiness was getting out of control, so today I FORCED myself to think about what I'm grateful for. Come on, Terena, give it a try. You're reacting to the demands other people create around the holidays and how they should be celebrated. Really, Thanksgiving is a relaxing and friendly holiday; all we do is share food with our loved ones and think about what makes us thankful.
After taking a deep breath I proclaimed, "I can do that."
So here's my list of what I am grateful for:
I am grateful that my daughter still knows how to laugh despite all the annoying doctor appointments and therapies and the endless blood tests.
I am grateful she is growing and learning and becoming more beautiful, inside and out, every day.
I am grateful that we've managed to keep our house this long, even though we're both unemployed.
I am grateful for indoor plumbing and heat.
I am grateful for my friends who stand by me and Queen Teen no matter what, and who are not afraid of her disabilities.
I am grateful for Whole Foods Gluten Free Peanut Butter cookies.
I am grateful that my car passed 200,000 miles and still runs so well.
I am grateful that I'm in grad-school learning a trade that will not only provide me with a good paying job, but will be beneficial to others.
I am grateful to the internet for allowing me to share my thoughts and read the stories of others.
I am grateful for my husband who loves me and supports all of my wild ideas (a small press?!) and who chose to be Queen Teen's dad even though he knew she was disabled and would need a lot of extra help.
And I am grateful that my husband and I have the same, dark and twisted sense of humor. It keeps us going.
After I wrote this list, I realized that I have a great deal to be grateful for, from the mundane (I'm grateful for a washer and dryer in my own home) to the global (I am grateful I don't live in Afghanistan). Even though life is difficult right now, with so many challenges there are days I literally have to bury my head under a pillow to scream, I still have so much in my life that is good and joyful. Okay, I get it. This is why people write down their blessings and focus on being grateful. The hard, scary, weary times can quickly block out any feelings of happiness in a day if you let them. By remembering what is good in your life, the bad times lose some of their power.
It's what Thanksgiving is about. I'll try not to forget that.
Go ahead and write your own list, and if you want to share your gratitude's, I'd love to read them.
This anti-Thanksgiving grumpiness was getting out of control, so today I FORCED myself to think about what I'm grateful for. Come on, Terena, give it a try. You're reacting to the demands other people create around the holidays and how they should be celebrated. Really, Thanksgiving is a relaxing and friendly holiday; all we do is share food with our loved ones and think about what makes us thankful.
After taking a deep breath I proclaimed, "I can do that."
So here's my list of what I am grateful for:
I am grateful that my daughter still knows how to laugh despite all the annoying doctor appointments and therapies and the endless blood tests.
I am grateful she is growing and learning and becoming more beautiful, inside and out, every day.
I am grateful that we've managed to keep our house this long, even though we're both unemployed.
I am grateful for indoor plumbing and heat.
I am grateful for my friends who stand by me and Queen Teen no matter what, and who are not afraid of her disabilities.
I am grateful for Whole Foods Gluten Free Peanut Butter cookies.
I am grateful that my car passed 200,000 miles and still runs so well.
I am grateful that I'm in grad-school learning a trade that will not only provide me with a good paying job, but will be beneficial to others.
I am grateful to the internet for allowing me to share my thoughts and read the stories of others.
I am grateful for my husband who loves me and supports all of my wild ideas (a small press?!) and who chose to be Queen Teen's dad even though he knew she was disabled and would need a lot of extra help.
And I am grateful that my husband and I have the same, dark and twisted sense of humor. It keeps us going.
After I wrote this list, I realized that I have a great deal to be grateful for, from the mundane (I'm grateful for a washer and dryer in my own home) to the global (I am grateful I don't live in Afghanistan). Even though life is difficult right now, with so many challenges there are days I literally have to bury my head under a pillow to scream, I still have so much in my life that is good and joyful. Okay, I get it. This is why people write down their blessings and focus on being grateful. The hard, scary, weary times can quickly block out any feelings of happiness in a day if you let them. By remembering what is good in your life, the bad times lose some of their power.
It's what Thanksgiving is about. I'll try not to forget that.
Go ahead and write your own list, and if you want to share your gratitude's, I'd love to read them.
Monday, November 23, 2009
Waiting
It feels like I spend a great deal of my time waiting. Just waiting. Sitting in my room surfing the internet, not really getting any work done because at any moment Queen Teen will yell for me to come and help her with something. She can't find her book, or her little puppy figurine. She wants to play with her Groovy Girls but can't get the box down from the shelf by herself. She sneezed but can't find the tissue box. About every ten to fifteen minutes Queen Teen will call me and I will drop whatever I'm doing to see what she needs.
I've tried relaxing and just doing what I want, not worrying about the moment she calls me. Maybe I can sit down and read a text-book, or work on my novel, or fold ALL the laundry at one time. But what usually happens is that I get so frustrated with the constant interruptions that I give up on doing anything that requires too much concentration, like my homework. I do my homework in the morning, or when she's watching a DVD (thank goodness for Sponge Bob!). At night, I wait for her to go to sleep because if I try to go to bed before then she'll pull me out of bed with more needs: she can't get comfy, her pj's are twisted, she needs a drink of water, her hair is in her face.
As soon as she gets on the school bus, the clock is ticking. I rush around trying to get everything done before she comes home, which is impossible, but it makes me great at time management. I've had 14 years of practice. Right now I'm not working, but that will change when I finish school. How will I get anything done once I have a full time job?
By now, I thought she'd be doing more for herself like other children her age. Instead it feels like I still live with a toddler who needs constant supervision.
Do other moms feel like this? How do you balance the waiting with your own needs?
I've tried relaxing and just doing what I want, not worrying about the moment she calls me. Maybe I can sit down and read a text-book, or work on my novel, or fold ALL the laundry at one time. But what usually happens is that I get so frustrated with the constant interruptions that I give up on doing anything that requires too much concentration, like my homework. I do my homework in the morning, or when she's watching a DVD (thank goodness for Sponge Bob!). At night, I wait for her to go to sleep because if I try to go to bed before then she'll pull me out of bed with more needs: she can't get comfy, her pj's are twisted, she needs a drink of water, her hair is in her face.
As soon as she gets on the school bus, the clock is ticking. I rush around trying to get everything done before she comes home, which is impossible, but it makes me great at time management. I've had 14 years of practice. Right now I'm not working, but that will change when I finish school. How will I get anything done once I have a full time job?
By now, I thought she'd be doing more for herself like other children her age. Instead it feels like I still live with a toddler who needs constant supervision.
Do other moms feel like this? How do you balance the waiting with your own needs?
Saturday, November 21, 2009
Stress causes hair loss? Who knew?
While my hairdresser was trimming my hair today, she paused and touched a few short hairs sticking straight up from the top of my head."You've been under a lot of stress lately."
"Yeah, a bit," I replied.
"And you had surgery recently too, right?"
"Yeah."
"I can tell." She ran the tiny, one inch hairs between her fingers. "You've had some hair loss."
"What?" Hair loss? Not something you want to hear from your hairdresser first thing in the morning. Or any time, really.
"It's okay. The hair is growing back. But these little hairs may stick up for a while. Just smooth them down with a tiny bit of wax and they should lie down."
More proof that this past year has been even more stressful than usual and my body is feeling the pressure.
I'm already paranoid about losing my hair because I was not gifted with thick, luxurious tresses. Instead I was born with thin, fine, perfectly straight hair, the kind of hair that would look better on a three year old boy than a 42 year old woman. I've pretty much accepted the fact that I'll be wearing wigs when I'm 60. But I really hate being reminded of how thin my hair is and how it no longer grows past my shoulders.
When I was a little girl I used to put tea-towels and baby blankets on my head to pretend it was my long, Princess hair. Although my hair was fine and baby soft, I insisted on growing it long. It was never thick and lovely, except that wonderful time when I was pregnant and my hair thickened and grew to my waist. Of course right after I gave birth it fell out by the hand-fulls, but the hair that remained stayed strong enough to keep long. And then when I got a divorce after Queen Teen turned one, I cut it off short because I felt I needed a change. It never grew back.
And now I'm 42 and my hair line slowly recedes up my temples, so I grew out my bangs to fill in the gap. Eventually that won't work, especially if it keeps falling out from stress.
Maybe I need to look into wigs sooner than I thought.
"Yeah, a bit," I replied.
"And you had surgery recently too, right?"
"Yeah."
"I can tell." She ran the tiny, one inch hairs between her fingers. "You've had some hair loss."
"What?" Hair loss? Not something you want to hear from your hairdresser first thing in the morning. Or any time, really.
"It's okay. The hair is growing back. But these little hairs may stick up for a while. Just smooth them down with a tiny bit of wax and they should lie down."
More proof that this past year has been even more stressful than usual and my body is feeling the pressure.
I'm already paranoid about losing my hair because I was not gifted with thick, luxurious tresses. Instead I was born with thin, fine, perfectly straight hair, the kind of hair that would look better on a three year old boy than a 42 year old woman. I've pretty much accepted the fact that I'll be wearing wigs when I'm 60. But I really hate being reminded of how thin my hair is and how it no longer grows past my shoulders.
When I was a little girl I used to put tea-towels and baby blankets on my head to pretend it was my long, Princess hair. Although my hair was fine and baby soft, I insisted on growing it long. It was never thick and lovely, except that wonderful time when I was pregnant and my hair thickened and grew to my waist. Of course right after I gave birth it fell out by the hand-fulls, but the hair that remained stayed strong enough to keep long. And then when I got a divorce after Queen Teen turned one, I cut it off short because I felt I needed a change. It never grew back.
And now I'm 42 and my hair line slowly recedes up my temples, so I grew out my bangs to fill in the gap. Eventually that won't work, especially if it keeps falling out from stress.
Maybe I need to look into wigs sooner than I thought.
Thursday, November 19, 2009
An Ode to my Mac Book Air
My mac book was making weird, grinding noises from the hard drive, so I sent it to the shop. It sat there for over a week and I went through major withdrawals. I love my Mac Book air. So light, so clean, so fast and portable. I couldn't get any serious writing done while it was in the shop, so I worked on collages and waited. And waited. And pined.
At last, my mac book was returned to me on Monday and I did a joyous dance in its honor. Then I sat down and wrote her this poem. Am I twisted to be in love with a lap top?
Ode to my Mac Book Air
Oh lovely machine that you are,
returned to me from afar,
humming strong and gleaming bright,
too long kept beyond my sight.
Who can resist your metallic gleam,
you light as air, fast, thin machine?
I write my worst (as you can see)
but your long battery life sets me free.
Am I insane to love you so?
You are such a joy to know,
but you are just my writing tool
and adoring you makes me a fool.
I don't care! I love you, Mac Air.
No other lap top can compare.
I let the words come pouring out.
Although my Muse has begun to shout
STOP IT!
(yes, it's true. I am not a poet)
At last, my mac book was returned to me on Monday and I did a joyous dance in its honor. Then I sat down and wrote her this poem. Am I twisted to be in love with a lap top?
Ode to my Mac Book Air
Oh lovely machine that you are,
returned to me from afar,
humming strong and gleaming bright,
too long kept beyond my sight.
Who can resist your metallic gleam,
you light as air, fast, thin machine?
I write my worst (as you can see)
but your long battery life sets me free.
Am I insane to love you so?
You are such a joy to know,
but you are just my writing tool
and adoring you makes me a fool.
I don't care! I love you, Mac Air.
No other lap top can compare.
I let the words come pouring out.
Although my Muse has begun to shout
STOP IT!
(yes, it's true. I am not a poet)
Tuesday, November 17, 2009
Sometimes, whether you have a good day or not depends on how you look at it.
Yesterday, I drove Queen Teen back to Stanford Audiology in Palo Alto. Neither of us was pleased about this. What fun! Sit in the car for three hours, sit in a doctor's office for two, then sit in a car again for another three hours, if we're lucky, because if we hit traffic between Novato and Windsor that will add another hour to the commute. Can't frickin wait.
I woke up at 6 am and rushed around to get myself ready while guzzling enough decaf to shake the cobwebs out of my brain. (Yes, I know it's easier with caffeinated coffee but caffeine makes me more agro than I normally am.) Then I woke up Queen Teen and spent the next hour and a half dragging her from bed to kitchen table to bathroom to bedroom to car. She decided she didn't want to go, and didn't know what she wanted to wear, and didn't want just one pony-tale in her hair, she wanted two, and her socks felt funny and her sunglasses were dirty and she needed books to read in the car but she couldn't decided which books to bring and why did we have to go to Stanford anyway?
It was a very good thing I didn't have caffeine because it was 8:30 before we got on the road and I was so annoyed with being stuck in the car with grumpy teen I probably would have run over the first squirrel who decided it would be fun to play chicken with my car wheel. As I filled up the gas tank (another joy inducing venture), I took a deep breath. This has to stop, I thought. It's going to be a very long day with a lot of driving and if you're this unhappy before leaving town it will be an unbearable day. As I drove the van onto the freeway heading south, I took another deep breath and decided to make the best of it. We can have a good day or a bad day. It's really up to me.
I decided to have a good day.
After a few minutes I felt calmer, not exactly pleased to go to Stanford, but not dreading it as much. And Queen Teen seemed to pick up on my improving mood as well because she started to chatter about how sunny it was and weren't the trees "pretty." We listened to Laurie Berkner and sang along to our favorite songs, although Queen Teen decided that I needed more practice singing. We arrived in Palo Alto with enough time to have lunch at the Stanford mall and then take a stroll. The shops are starting to put up there decorations and there was already a Santa display with Santa Clause greeting children. Queen Teen decided not to say hello, but she grinned when she saw Santa.
The appointment was quick. The doctor checked her ear molds and cast new ones, then checked the settings on the hearing aids themselves. She also fixed the battery door which kept popping open, and worked on the FM system. A lot done in only an hour and half. Queen Teen was relieved there were no long, BORING hearing tests this time. We'll do that when we go back next month to pick up her new ear molds.
We did hit rush hour traffic past Novato, but it wasn't as terrible as it could have been. I stopped at Borders Books in Santa Rosa for a break and so Queen Teen could pick out a few books to replace the ones she's thrown out. After another hour of driving, during which Queen Teen sang Christmas carols, we were home at 6:30, weary and hungry, but not miserable.
As I kissed Queen Teen goodnight, she said, "I had fun with you today. Except for the boring car ride. But it was okay."
"Me too, sweetie," I said.
I woke up at 6 am and rushed around to get myself ready while guzzling enough decaf to shake the cobwebs out of my brain. (Yes, I know it's easier with caffeinated coffee but caffeine makes me more agro than I normally am.) Then I woke up Queen Teen and spent the next hour and a half dragging her from bed to kitchen table to bathroom to bedroom to car. She decided she didn't want to go, and didn't know what she wanted to wear, and didn't want just one pony-tale in her hair, she wanted two, and her socks felt funny and her sunglasses were dirty and she needed books to read in the car but she couldn't decided which books to bring and why did we have to go to Stanford anyway?
It was a very good thing I didn't have caffeine because it was 8:30 before we got on the road and I was so annoyed with being stuck in the car with grumpy teen I probably would have run over the first squirrel who decided it would be fun to play chicken with my car wheel. As I filled up the gas tank (another joy inducing venture), I took a deep breath. This has to stop, I thought. It's going to be a very long day with a lot of driving and if you're this unhappy before leaving town it will be an unbearable day. As I drove the van onto the freeway heading south, I took another deep breath and decided to make the best of it. We can have a good day or a bad day. It's really up to me.
I decided to have a good day.
After a few minutes I felt calmer, not exactly pleased to go to Stanford, but not dreading it as much. And Queen Teen seemed to pick up on my improving mood as well because she started to chatter about how sunny it was and weren't the trees "pretty." We listened to Laurie Berkner and sang along to our favorite songs, although Queen Teen decided that I needed more practice singing. We arrived in Palo Alto with enough time to have lunch at the Stanford mall and then take a stroll. The shops are starting to put up there decorations and there was already a Santa display with Santa Clause greeting children. Queen Teen decided not to say hello, but she grinned when she saw Santa.
The appointment was quick. The doctor checked her ear molds and cast new ones, then checked the settings on the hearing aids themselves. She also fixed the battery door which kept popping open, and worked on the FM system. A lot done in only an hour and half. Queen Teen was relieved there were no long, BORING hearing tests this time. We'll do that when we go back next month to pick up her new ear molds.
We did hit rush hour traffic past Novato, but it wasn't as terrible as it could have been. I stopped at Borders Books in Santa Rosa for a break and so Queen Teen could pick out a few books to replace the ones she's thrown out. After another hour of driving, during which Queen Teen sang Christmas carols, we were home at 6:30, weary and hungry, but not miserable.
As I kissed Queen Teen goodnight, she said, "I had fun with you today. Except for the boring car ride. But it was okay."
"Me too, sweetie," I said.
Sunday, November 15, 2009
Do you know the way to teen-aged land?
I keep finding toys in the hallway: stuffed animals and baby doll clothes, Berenstain Bear books, Rugrats figurines, a Cinderella Barbie and Baby Cinderella in a matching blue dress, Matchbox cars, bouncy balls, a little plastic Fairy Godmother. Queen Teen tosses out three to four things every day, declaring the item as "boring," and throwing it into the hall. Yes, I try to tell her throwing things into the hallway is not okay, but it seems like this is her way of rebelling against childhood. I will not play with this toy anymore and I will throw them into the hall! So there!
I have several piles of old books and toys in my bedroom now which are in my way, but I'm making sure she's really done with them before I send them to Goodwill. Are you SURE you're tired of playing with the mini-van that goes to your doll house? Tired of reading all the Baby Honey books? Over the years she's declared herself "DONE" with a toy, only to have a melt-down when I told her I gave it away. "But I wanted that!" she'd cry. "You told me you didn't want it anymore." "No I didn't!" I've learned my lesson, so now I wait. But for how long?
Queen Teen is trying very hard to grow up, which is exciting to watch, but also frustrating. Neither of us knows how to do this. She doesn't have any teen-age role models to emulate, and I have to say I'm actually happy she isn't copying the 8th graders at her school. She still thinks boys are "ucky," and cell phones are mysterious. She likes clothes and shopping, but there's only so much we can buy. She spends a lot of time looking at her bracelet collection and necklaces, trying them on, admiring herself in the mirror, taking them off, then yelling for me to help her untangle them. She hates makeup.
Her room is getting emptier and we still haven't found anything to replace all the items she's tossing. What will she do with her time when she no longer wants to play with toys?
Deaf-blind children do not learn incidentally. They need to be SHOWN what is going on around them. They need to be taught how to be social, what to wear, what to say, how to interact with people. She isn't picking up on the subtle clues that other kids do that show them what growing up is like. All she knows is that her old toys and books don't interest her any more, but she has no idea how to take the next step.
I need ideas, people. How do I show my 14 year old daughter how to be a teenager?
I have several piles of old books and toys in my bedroom now which are in my way, but I'm making sure she's really done with them before I send them to Goodwill. Are you SURE you're tired of playing with the mini-van that goes to your doll house? Tired of reading all the Baby Honey books? Over the years she's declared herself "DONE" with a toy, only to have a melt-down when I told her I gave it away. "But I wanted that!" she'd cry. "You told me you didn't want it anymore." "No I didn't!" I've learned my lesson, so now I wait. But for how long?
Queen Teen is trying very hard to grow up, which is exciting to watch, but also frustrating. Neither of us knows how to do this. She doesn't have any teen-age role models to emulate, and I have to say I'm actually happy she isn't copying the 8th graders at her school. She still thinks boys are "ucky," and cell phones are mysterious. She likes clothes and shopping, but there's only so much we can buy. She spends a lot of time looking at her bracelet collection and necklaces, trying them on, admiring herself in the mirror, taking them off, then yelling for me to help her untangle them. She hates makeup.
Her room is getting emptier and we still haven't found anything to replace all the items she's tossing. What will she do with her time when she no longer wants to play with toys?
Deaf-blind children do not learn incidentally. They need to be SHOWN what is going on around them. They need to be taught how to be social, what to wear, what to say, how to interact with people. She isn't picking up on the subtle clues that other kids do that show them what growing up is like. All she knows is that her old toys and books don't interest her any more, but she has no idea how to take the next step.
I need ideas, people. How do I show my 14 year old daughter how to be a teenager?
Thursday, November 12, 2009
Queen Teen reaches burn out. Now what?
A few days ago, Queen Teen walked into my room and announced, "I don't wear my glasses anymore."
I'm used to these types of proclamations, I mean, "Queen Teen" is more than just a nickname. It's a way of life.
"You don't?" I said.
"Nope. They don't help me so I don't know why I gotta wear them."
"Because your teacher asked you to. She says they seem to help when you're working on your computer."
"Well, they don't. So I'm not gonna wear them anymore." Before I could formulate a response that would, A-encourage her to wear them, and B- remind her that she needs to do what her teacher tells her, she moved on to a new topic. "And my hearing aids don't do nothing either, so I don't know why I gotta wear them."
Pick your battles, I thought. At this stage in the game, the hearing aids are more important. "You're hearing aids do help. You seem able to hear me better with them on."
"No they don't. They just bug me."
"I'm sorry about that, sweetie. We'll go to the audiologist again and she can fix them for you."
Queen Teen shrugged. "It don't matter. I don't need to wear them. And I don't know why no body can do nothing about my ataxia. I hate my ataxia, and nobody can fix me."
"I know. It's really frustrating."
"Yeah." She leaned forward and shouted, "I wish somebody could make my ataxia just go away!"
I gave her a big hug and said, "Me too, baby."
"It's what I wish for. But I guess some wishes are too big and can never come true."
Biting my lip, I forced myself not to cry. What the hell can I say? Everything she's saying is true. Her glasses only help a little, her hearing aids barely help at all, and her ataxia is worse the older she gets. She used to be able to walk without using a walker but now she has to use the walker constantly, even in the house. She used to do her exercises religiously, but now has given up on the idea that strength training will make her better. I encourage and bribe her to keep going, but she gives it a half hearted attempt, lazily doing sit-ups and quitting before she's really taxed.
Queen Teen is burned out, worn out, frustrated and depressed. Nothing has made anything better, not the surgery, the knee braces, the exercises or the therapy. Not the glasses or the hearing aids, not the amino-acids or the walker. She's lost that stubborn gleam in her eye that embraced each new challenge with excitement. Of course I'll get stronger, she used to believe, as she did 20 sit ups. Now she doesn't care.
What can I do to help her? Even an adult would feel this despondent, so how is a 14 year old child supposed to cope? When you realize that all your efforts won't change anything, that things are exactly what they are and you must live with them, how do you keep moving forward? I hit that place a couple of years ago and spent months in a depression so deep I was afraid I might not drag myself out. Eventually I did, because Queen Teen needed me to. What will help Queen Teen learn to live with herself and bring that wonderful fire back into her eyes?
I'm used to these types of proclamations, I mean, "Queen Teen" is more than just a nickname. It's a way of life.
"You don't?" I said.
"Nope. They don't help me so I don't know why I gotta wear them."
"Because your teacher asked you to. She says they seem to help when you're working on your computer."
"Well, they don't. So I'm not gonna wear them anymore." Before I could formulate a response that would, A-encourage her to wear them, and B- remind her that she needs to do what her teacher tells her, she moved on to a new topic. "And my hearing aids don't do nothing either, so I don't know why I gotta wear them."
Pick your battles, I thought. At this stage in the game, the hearing aids are more important. "You're hearing aids do help. You seem able to hear me better with them on."
"No they don't. They just bug me."
"I'm sorry about that, sweetie. We'll go to the audiologist again and she can fix them for you."
Queen Teen shrugged. "It don't matter. I don't need to wear them. And I don't know why no body can do nothing about my ataxia. I hate my ataxia, and nobody can fix me."
"I know. It's really frustrating."
"Yeah." She leaned forward and shouted, "I wish somebody could make my ataxia just go away!"
I gave her a big hug and said, "Me too, baby."
"It's what I wish for. But I guess some wishes are too big and can never come true."
Biting my lip, I forced myself not to cry. What the hell can I say? Everything she's saying is true. Her glasses only help a little, her hearing aids barely help at all, and her ataxia is worse the older she gets. She used to be able to walk without using a walker but now she has to use the walker constantly, even in the house. She used to do her exercises religiously, but now has given up on the idea that strength training will make her better. I encourage and bribe her to keep going, but she gives it a half hearted attempt, lazily doing sit-ups and quitting before she's really taxed.
Queen Teen is burned out, worn out, frustrated and depressed. Nothing has made anything better, not the surgery, the knee braces, the exercises or the therapy. Not the glasses or the hearing aids, not the amino-acids or the walker. She's lost that stubborn gleam in her eye that embraced each new challenge with excitement. Of course I'll get stronger, she used to believe, as she did 20 sit ups. Now she doesn't care.
What can I do to help her? Even an adult would feel this despondent, so how is a 14 year old child supposed to cope? When you realize that all your efforts won't change anything, that things are exactly what they are and you must live with them, how do you keep moving forward? I hit that place a couple of years ago and spent months in a depression so deep I was afraid I might not drag myself out. Eventually I did, because Queen Teen needed me to. What will help Queen Teen learn to live with herself and bring that wonderful fire back into her eyes?
Tuesday, November 10, 2009
111 Posts!
I was cruising some of my favorite blogs and saw that Corrie over at "Just because my pickle talks" was celebrating her 100th post. Gee, I wonder how many posts I've written for Gravity Check? Must be almost 100.
Actually, I've written 111. This will make 112.
So today I'm celebrating my 112th post, since I spaced on the 100 mark. Thank you all for your encouragement to keep writing. I love blogging.
Actually, I've written 111. This will make 112.
So today I'm celebrating my 112th post, since I spaced on the 100 mark. Thank you all for your encouragement to keep writing. I love blogging.
Monday, November 9, 2009
First outside lesson in O and M class
(thank you, Jim, for the photos)
Not only did I go out with my hubby on Halloween, I also traveled outside under blindfold for the first time in O and M class. The class met in the St Francis Woods neighborhood in San Francisco at 9 am with our lawn chairs and winter coats to learn how to walk down a sidewalk safely without sight, using our cane.
To celebrate the holiday, our teacher dressed up like a witch, complete with pointy hat and star-etched black tunic. Rather than dress up in costume, we students decided to decorate our canes. I made a large black spider out of pipe cleaners and attached it to the crook of my cane. Here's a picture, taken at the end of the day when my poor spider was looking worn out and squashed:
Another student decorated her cane like a mummy, wrapping it completely in toilet paper. There was a cane dressed in Christmas wrap, a cane made to look like an umbrella, and a "pun" cane with an image of Micheal Cane on the top and Tipper Gore on the bottom (or tip of the cane).
After we showed off our canes and listened to our instructor explain safe cane travel on a sidewalk, it was time to give it a go. I taught my partner first, supporting her with words and occasional contact on her shoulder as she traveled the block I had chosen for her. Overall she did very well. My partner is also in the guide-dog mobility program so has already spent a lot of time traveling under blindfold.
Then it was my turn. I put on my blindfold and began moving down the sidewalk using the touch technique and touch and drag for trailing the edge of the sidewalk. My line of travel was good, but I felt completely overwhelmed by the sensory input, all the smells, sounds, changing textures of the ground, the breeze on my face and the jab of my cane as it found someone's lawn or a crack in the sidewalk. My brain wanted to know what it was. Where is that sound coming from? What is that bumpy, damp feel of the ground that my cane is sweeping over? Where does that cement path just off the sidewalk lead? What type of bush is my cane tangled in?
I am a hyper-vigilant person, one of those people who always knows what time it is and where the bathroom is located. I can quickly sense what a person is feeling and needing and within one minute of entering a party I know who is sleeping with who, who's bored, who's drunk, and who's the person with the best stories. I can diffuse a fight before it starts and find a child when they've wandered off. My empathy and awareness is a gift that helped me survive a tumultuous childhood and makes me a good writer today.
This hyper-vigilance is a liability when traveling under blindfold, though. Trying to figure out what and where everything is makes traveling down a sidewalk without vision extremely difficult. My partner kept encouraging me to focus on my line of travel, but I couldn't seem to stop myself from being flooded with sensory input and questions. The moment my cane touched an odd bump in the sidewalk or brushed against the edge of a flower bed, my body reacted by slowing down and searching for the cause of the change in texture. I wasn't even aware I was doing it until my partner told me I was. She finally said in a firm voice, "I'll reward you by telling you what it is AFTER you get around it."
The reminder to let it go and keep moving helped. After I traveled two sides of the block, I began to tell myself, "It doesn't matter. Where are you going?" Slowly my need to UNDERSTAND my environment subsided, but didn't completely go away. This is going to be a challenge for me because it is completely opposite to my personality. Okay, I admit it, I'm a control nut. I need to know what's happening at all times. I may not be able to control everything around me, but if I'm aware of everything then I can anticipate and react to changes in the environment, especially in the people.
I'm not sure if I'll ever be able to let go of that need for control, but in time I hope it subsides enough to let me travel a straight line down the sidewalk.
Friday, November 6, 2009
The Flu
On Tuesday I started to feel my head thicken with snot and my throat get sore. Bollocks! I chugged juice, loaded up on Vit C and saw my accupuncturist who gave me herbs and a needle treatment supposed to help boost my immune system so I wouldn't get sick.
On Wednesday I was feeling worse, but I thought it was just a cold. On Thursday I was on the couch watching old movies and drinking gallons of tea, realizing that this was a FLU, and probably THE flu, because that's the only one going around right now. I had to cancel my trip to the California Orientation and Mobility Specialists Conference in Monterey this weekend and instead will be taking the "tea and movies cure" for the next several days.
So far, Queen Teen doesn't show any signs of catching the flu, but I'm really nervous that I've exposed her to something that could make her extremely sick. Curses to college! I probably got this bug on campus because universities are thick with exotic germs and people from all over the world sneezing on each other while sharing drinks and swapping spit. It was just a matter of time before some 20 year old girl with a sick boyfriend living in the dorms coughed in my general direction.
I went to the CDC website to see what the latest guidelines are for dealing with the H1N1 virus and found the page about caring for a sick person at home. Who the hell made up these rules? They are completely unrealistic for a family, especially a mom. Keep the person isolated. Have them use a separate bathroom from others. Wear gloves and a face mask when caring for the sick person. Right.
First of all, I'm the primary caregiver of a person with a disability. My daughter needs assistance with daily living tasks, like eating and dressing, so "avoiding close contact" is impossible. And secondly, a face mask is impossible because my daughter has a hearing problem and is a lip reader. If I could evacuate her somewhere away from me I would, but we don't have any family near by. All I can do is try not to breath on her and wash my hands a lot (which I'm doing so much my skin is cracking).
And if it was reversed, if Queen Teen was the sick person instead of me, the rules still wouldn't work for us. I must be in close contact, I still couldn't wear a mask, and we only have one bathroom. Like most guidelines created by agencies, the rules were created as a "best-practice" with zero thought into reality. Parents must care for their children, period, regardless of their own health or whether or not they wear a face mask. A sick child needs hugs as well as medicine. And sick moms need rest.
Thankfully today I feel better than yesterday, so I hope I'm on the mend. I'll make some more tea, watch a few more movies, and try to take a nap before Queen Teen gets home from school. I need to be strong for when Queen Teen comes down with the flu, because eventually she will. I'm guessing by Sunday, Monday at the latest.
I really, really hope I'm wrong.
On Wednesday I was feeling worse, but I thought it was just a cold. On Thursday I was on the couch watching old movies and drinking gallons of tea, realizing that this was a FLU, and probably THE flu, because that's the only one going around right now. I had to cancel my trip to the California Orientation and Mobility Specialists Conference in Monterey this weekend and instead will be taking the "tea and movies cure" for the next several days.
So far, Queen Teen doesn't show any signs of catching the flu, but I'm really nervous that I've exposed her to something that could make her extremely sick. Curses to college! I probably got this bug on campus because universities are thick with exotic germs and people from all over the world sneezing on each other while sharing drinks and swapping spit. It was just a matter of time before some 20 year old girl with a sick boyfriend living in the dorms coughed in my general direction.
I went to the CDC website to see what the latest guidelines are for dealing with the H1N1 virus and found the page about caring for a sick person at home. Who the hell made up these rules? They are completely unrealistic for a family, especially a mom. Keep the person isolated. Have them use a separate bathroom from others. Wear gloves and a face mask when caring for the sick person. Right.
First of all, I'm the primary caregiver of a person with a disability. My daughter needs assistance with daily living tasks, like eating and dressing, so "avoiding close contact" is impossible. And secondly, a face mask is impossible because my daughter has a hearing problem and is a lip reader. If I could evacuate her somewhere away from me I would, but we don't have any family near by. All I can do is try not to breath on her and wash my hands a lot (which I'm doing so much my skin is cracking).
And if it was reversed, if Queen Teen was the sick person instead of me, the rules still wouldn't work for us. I must be in close contact, I still couldn't wear a mask, and we only have one bathroom. Like most guidelines created by agencies, the rules were created as a "best-practice" with zero thought into reality. Parents must care for their children, period, regardless of their own health or whether or not they wear a face mask. A sick child needs hugs as well as medicine. And sick moms need rest.
Thankfully today I feel better than yesterday, so I hope I'm on the mend. I'll make some more tea, watch a few more movies, and try to take a nap before Queen Teen gets home from school. I need to be strong for when Queen Teen comes down with the flu, because eventually she will. I'm guessing by Sunday, Monday at the latest.
I really, really hope I'm wrong.
Sunday, November 1, 2009
Emily the Strange at 42
This Halloween I had class, so my husband Rick decided to join me in San Fran while Queen Teen's bio dad stayed with her at home. They went trick-or-treating and had a nice, long visit, which was good because she doesn't get to see him often. Rick rode the motorcycle down to The City which meant we could tool around on Halloween on the bike, rather than fighting for parking with the mini-van.
After class on Halloween (which I'll write more about next time), Rick and I went out to dinner then returned to our friend's apartment so I could put on my costume. I decided to be Emily the Strange, one of my favorite characters. When I was 12 I was just as dark and sullen, so I have a soft spot for that nihilistic child. With a long black wig, darkened eyebrows I shaped downwards to give me that angry-child look, and black lipstick, I embraced my inner goth-girl. Unfortunately all that black made me look as haggard and sleep-deprived as I feel. Whatever. I pulled on my Doc Martins and my "seeing is disbelieving" t-shirt and declared I'm Emily the Strange at middle age.
We sped across town on the motorcycle under a moon just on the edge of full. A mist poured in from the ocean and I shivered a little in my black leather jacket. The sidewalks were filled with people dressed up in silly and seductive costumes, and the closer we got to Market street, the drunker the people seemed. I felt a rush of euphoria, a tingle of freedom. I was on the back of a motorcycle holding on to the man I loved in the city I loved and for one night I was free. No child to tend, no phone calls to make, no dishes to wash. I am Emily the Strange and the night is my friend.
A friend of ours is in a Sisters of Mercy tribute band called The Reptile House and that night they were playing at a bar called Annie's on Folsom street. We parked the bike and went to the door to pay the cover. $7.00, or $5.00 in costume. Cool. I handed him my $5.00 just as he said, "Seven."
"I thought it was five in costume."
"Yeah."
"I'm in costume."
He looked me over closely, then recognized I was wearing a wig. "Okay, five."
When I walked into the bar I realized dressing up like an iconic goth chick wasn't exactly a great costume to wear to a punk bar on goth night. As I looked around I saw many people dressed in black with long black hair and black lipstick, only they weren't in costume. This was what they wear out, what I used to wear out before I was old enough to get into bars legally (but I managed to). I laughed. Rick said, "I told you."
Whatever. He bought me a saki (I LOVE Annie's because they serve saki) and we found our friend who was about to play drums in the first band, a tribute to Souxie and the Banshees. The lead singer had a bad cold so sounded terrible but had good energy, and the musicians were great. Dancing in the front row, I sipped my little bottle of saki and fell into the music. I have never outgrown my love for goth music and I felt that euphoric rush of freedom again.
That feeling was quickly followed by the stupefying realization that I'm getting old. This was the first time I'd been to a tribute show for a band I listened to when I was young and the understanding that I was that goth girl 20 years ago was stunning. It's all going too fast; I'm not ready to be middle aged. I just figured out who I am and what is important to me and it's too late to go back and start again. Can I please have a little more time?
More friends arrived, both parents who'd also managed to take the night off from kid duty. We drank and chatted and listened to the music and slowly my blues faded (I'd been channeling Emily the Strange a bit too much, I think). When The Reptile House started, I stood in the front row and danced every vestige of sadness away. The euphoria returned as I sang along to the songs I knew and felt my inner goth girl stir in remembrance. I may be older now, but that girl I used to be is still a part of me. She just needs to come out and play now and then.
My husband and I managed to stay almost to last call, then we hopped back on the bike and sped away through the nighttime streets of San Francisco. I held on tight and let him drive, not worrying about where we were or what we should be doing. Rarely do I have a moment where I'm not in control of something, so those moments on the back of his motorcycle were liberating. He's a good driver and I trusted him to get us home. I relaxed and watched the city zip by.
Subscribe to:
Posts (Atom)