What is Strength?

It's the end of May. The blossoms have disappeared and soon there will be a fresh crop of cherries on our tree. My garden is struggling to defend itself from earwigs and caterpillars, but inch by inch it grows and thrives. Queen Teen is back in school half days and this morning she rode the bus, happy to once again sit with her best friend in the front seat. And very slowly, I am regaining a little of my balance. That balance is delicate, but strengthening. Day by day, I feel my breath return to my body and the shaking in my hands has stopped. I'm not perched on the edge of my couch ready to leap into action at the first sign of trouble from Queen Teen. My teeth hurt from clenching my jaw too tightly for months and there are much bigger bags under my eyes, but overall, I am stronger.

When Queen Teen got sick in early March and her health quickly declined, it felt as if I'd been kicked in the gut and thrown to the ground. Frantic became the norm as I struggled to take care of her and deal with her new challenges, while also working in my first year as a teacher and coping with "IEP season." Forget writing, I didn't have the strength to do anything more cerebral than watch stand up comedy on Netflix. I knew I had to hold it together, and the funny thing is my depression improved with the immediate crisis. I didn't have time to be depressed, my daughter needed me.

Is that what strength is? Putting your own needs aside for the benefit of another? Perhaps, but when I began to have dizzy spells from lack of sleep and nutrition I realized being strong is much more complicated than having the ability to calm your child after she's thrown up again in the middle of the night. Knowing how much you can give, and what you need to do for yourself so you can continue to give, seems to be an important part of strength. What good is mental strength if your body is exhausted, or vice versa?

As Queen Teen's health worsened, I watched the people around me fall apart too. This made it even more imperative that I stay strong, because I honestly felt that others were unable to be there for her. Funny, I don't blame them. The first weeks of this crisis were terrifying, and some people just can't face the idea that a child might die. As others withdrew, I did too, deciding it was better to just focus on Queen Teen's needs and ignore my own.  But now that the weeks have turned into months, I understand how important it is to surround myself with people who will be there, no matter what. And many people have stepped up; friends who live far away have sent flowers and encouragement and little gifts to Queen Teen to keep her spirits up. My boss has been wonderful. I'm basically still on probation and have had to miss a lot of work to take care of Queen Teen, but my boss says, "Family comes first."

The second ingredient of strength: a support team. But before I can build a stronger team, I need to understand what my needs are beyond just taking care of Queen Teen; what do I need to thrive, be healthy, mentally strong, and balanced?  What are my boundaries? I've decided to surround myself with people who will stand by Queen Teen no matter what may come and dump the people who can't deal with her illness: that includes family. I will not feel guilty for setting boundaries. Guilt is a strength stealer.

Queen Teen has shown me the third major component of strength: laughter. Despite being sick, hospitalized, run through invasive tests and looked at by more doctors than she can comprehend, she continues to smile. She fights every day for her life, and will not give up easily. She is able to find joy everywhere and under circumstances that would cripple a Viking. She cracks jokes easily and when she laughs everyone around her has to smile. Where does that ability come from? She is able to stay right here, right now, and not worry about next month or next year. Yes, I know it's easier when you're not the person tracking down doctors, filling out forms, and planning for the long term, but she is the person who lives with the disability. I can escape it for a precious few hours or a weekend away. For her, there is no escape. Instead of letting that reality destroy her, she keeps fighting, and laughing.

A little bit of laughter and searching for the tiniest spark of joy in what seems to be a tragedy can create strength when I'm at my lowest. I work in my garden and watch the tiny plants turn dark green in the sunshine. Taking a deep breath, I smell the dirt as it tumbles through my bare fingers. The hummingbird who won my feeder through hard battle with at least four other hummingbirds zips over my head. Queen Teen yells, "Mom!" through the back door. "What are you doing?"

Gathering strength, I think.

Dancing my way through a mid-life crisis

The words "mid-life crisis" sound like such a joke, until you're in it. The joke isn't the crisis, the joke is what we do with it.

My mid-life crisis started when I turned 40 and realized I had no health insurance, no retirement, and no savings; I didn't even own a car. So I went to grad-school to fix those problems and when I graduated I got a job with the county of education as an Orientation and Mobility Teacher in the special education department. I now have health insurance, retirement, and the beginnings of a savings account. My family is more financially secure, so I should be happier, right?

Nope. Not happy at all.

Sure, I can pay the mortgage and go to the doctor now, but the deeper questions still remain, questions like, who am I other than Queen Teen's mom? Why can't I save her? Is there a god, and if so, why is she doing this to my daughter? Or is Queen Teen's disability caused by her karma? Is she atoning for past lives, or learning something important? Are the atheists right? Could it really be a random luck of the draw that caused her disability? What happens when things get worse? Will she die? If she does, will her soul live on or is there no soul? Will she just disappear? Do we all disappear?

I call myself a Buddhist, but I'm questioning my faith in that philosophy. Even my favorite teacher, Pima Chodron, the one Buddhist teacher who has been able to help me when faced with spiritual crisis, can't answer my questions. Which I suppose is part of the Buddhist philosophy on suffering: there is no answer.

But damn it sometimes I want a straight answer!

Questioning ones faith and place in the larger meaning of life is the heart of a mid-life crisis. Facing mortality and meaninglessness is what causes so many people to dump their spouses, buy a sports car and quit their jobs. Existential angst is painful, so who wouldn't jump at the chance to run from it? Much better to celebrate life, rather than worry about the other cliche: the meaning of life.

If we don't stop and face those questions and understand there aren't any answers, those questions will come up over and over and drive us to make one stupid mistake after another. In the middle of the night they'll haunt you, until you need sleeping pills or alcohol (or both) to get some peace. Am I being melodramatic? Probably, but a mid-life crisis is melodramatic. Life and death come crashing together on stage in flaming technicolor, and only the brave or slightly crazy can stand the noise.

Luckily I am both brave and a little crazy, so I'll be alright. The most important thing you can do when coping with these deep, psychological questions is treat yourself with the utmost compassion and patience. You will have horrible days when the pointlessness of everything will make you want to start drinking at 10 am. And you will have wonderful days when that pointlessness will actually look beautiful, because you'll feel free and open to all the possibilities of life.

Keep breathing, and don't jump the cute guy who gave you his phone number because you think he'll save you from getting old. No one can save you. The only one who has a chance of saving you is you, but that probably doesn't give you much comfort when you're hurting and confused.

Here's a song that brilliantly portrays the feelings of a mid-life crisis; I've danced to it several times, which helped a lot. Get out of your chair and start dancing. I think dancing might be the only way to survive a mid-life crisis.

There's just so much positive thinking a girl can do

It's all in your outlook. Think happy thoughts. Remember the positive. Count your blessings.

You know, there's only so much positive thinking and counting your blessings a girl can do before she just can't do no more!

To say I'm in a dark mood is an understatement: I've reached my limit on bullshit and stress. I cannot take one more ounce of worry or anger. Not one more. I'm serious, Universe, so knock it off! Let me say thank you to everyone who sends me positive energy and warm fuzzy thoughts, but unless you're showing up on my doorstep with a bottle of Sapphire Gin and a basket of limes, I don't want to hear it.

Yes, I know, it's all in the way you look at things and it really is important to stay focused on the good. There are many many many happy and wonderful things in my life and I am the master at redirecting the negative into something creative and life affirming. My every waking moment is a battle to keep "happy thoughts" at the front of my brain while watching my only child suffer. But I'm human, okay. I'm not a frickin Saint, although people seem to believe I am. "How do you do it, Terena?" they wonder while shaking their heads in amazement.

Anti-depressents, therapy and alcohol. How do you do it?

I hate feeling sorry for myself, in fact I go to great lengths avoiding that particular emotion. It's a waste of energy and time. Life's too short to be resentful and angry. Life is a gift, and we only get one (as far as we know for sure) so what's the point of worrying about what has happened or didn't happen? The problem with this theory is that we're also human, and humans are... human. We're frail and we break easily, especially our psyches.

Why so blue? I turned 45 on Feb. 4th and ever since that day life has taken a dramatic downward spiral. I've had to deal with my crazy mom (I'm speaking literally here), a shoulder injury (mine. try taking care of someone when it hurts to move), illness (again, my own. 2 weeks of feeling like hell while still taking care of everything), Queen Teen's new and sudden physical problems (gagging on her food, a throbbing knee and her right hand that's been tingly for weeks. this is the same one she injured two months ago.), and to top it all off, the almost collapse of her school program.

You want to know how strong I am? I can sit through a two hour meeting with teachers and therapists and discuss unforeseen problems with her educational program while keeping my growing anger in check and mediate for the others who are becoming frustrated, all with the goal of keeping the communication going, and even with the knowledge that I'm not able to fix a damn thing.  I did all of this with the flue! And I still need to keep my emotions in check if anything will change, especially because I'm walking that very thin line between "Mommy" and "Teacher." Lets see any so called Super Mom do the same.

So if I want to feel sorry for myself and hate the world now and then, I think I've earned it. Forgive my dark, sarcastic ass. I don't want to think happy thoughts!

I'm a leaf on the wind...   Splat!

The next step in asking for help

After I wrote my blog post about needing more help, the response from friends was wonderful. I was particularly surprised by the offers of help from people I didn't think would respond. Not that they're insensitive, it's just they aren't particularly "kid people" and have very busy lives. I was also surprised by how many people I just KNEW would write back with offers of help who didn't. Again, I don't think it's because they're insensitive (well, a few might be), I think it has more to do with people not knowing what they can possibly do to make any difference.

When you ask for help, no matter how much you wish it would just fall into your lap, you need to have a few specific ideas for people to know how to help.

Ummmm...  I'm still not sure how to answer that question.

I mean, we need help with everything: money, sanity, housekeeping, childcare, cooking, car maintenance, yard work, pet care... everything. But telling your friend who just offered help that they could clean your bathtub for you isn't a great way to foster a good support network.

So I've been working on a list of ideas, and instead of worrying about how people will react or how unrealistic some of these may be, I'm just gonna spell it out and see what happens.

Terena's Help List

• Housework. No you don't have to clean my bathroom, but if you know any good tips, tricks, cleaning products or cleaning staff (inexpensive) who could lend a hand, let me know. 
• Yard Work. Some strong hands to help my hubby and I catch up on the mountain of yard work around here would be great, especially since Spring is already trying to arrive.
• Sanity. Send me an email just to say hello. Post a hug to my Facebook page. Call and invite me out for coffee or to a movie. Let me know when a party or event is happening. Rick and I have gotten very isolated up here in Mendo (really people, there is life above Santa Rosa!), so any little thing you can do to help us feel less lonely would be wonderful (btw, Rick could use some help just as much as me). 
• Childcare. This is a big one. I know people get really nervous about offering to watch Queen Teen because she seems to need so much care, but she's actually pretty easy. Her favorite thing is to go for a walk in her chair and get a snack. If you just want to take her out for ice cream some time for an hour so I can grab a nap, that would be great. We have respite for the longer hours and overnights, and I'm looking into another agency to provide more support. Plus, Queen Teen gets just as lonely as Rick and I do. More people inviting her out on a Saturday for a short time would make her very happy.
• On that note, the more people who learn American Sign Language the better. As her hearing has degenerated, so has her communication. Very few people in our lives know ASL, so very few people can chat with her. She doesn't know very many signs yet, but in time she will, and the more she can use her language skills, the faster she'll learn. Plus, her world will expand to include so many more people and friends. What a gift that would be.
• Cooking. Made too much Beef Stew? Send it my way. I know my food allergies make it tricky, but if you have something Gluten Free you'd like to share, we'll gobble it up. 
• Money. Well... if you win the lottery, you can pay off my house. 

Looks like I have more specifics then I realized. While I'm on a roll, I'll just throw out a few more ideas (which may be less reality based, but what the hell?)

• Could someone tell that Ty guy that I need a new house? Mine is way too small and with Queen Teen's equipment getting bigger, we're about to reach a space crisis.
• Or if not a new house, how about letting one of those designers on the Home and Garden Channel know that we need help making better use of the space we have. (ooh, I just saw that the dream house sweepstakes has begun.)
• My car is about to die (a 1995 Honda Odyssey with 220,000 miles on it). I need a new one, preferably in red.
• Rick and I still need a honeymoon. We've been married 11 years. It's about time.
• A massage, once a week, for the next six months to get grad school out of my muscles.
• A huge family with lots of cousins who live in California (rather than Louisiana or Texas, neither place I wish to move to. Sorry guys).
• Queen Teen would like another trip to Disneyland... oh wait, we're already planning that one. 
• Queen Teen would also like to fly, just like the little girl in the Tinker Bell movie "The Great Fairy Rescue." She believes that if she could fly it would change everything (I think she's right). 

Today, my orchid has even more blooms! The ones I thought were too small and would fall off have thickened until they've opened into gorgeous blossoms. I wake up every morning and look at this:

It gives me hope.

Proof I'm still a bit batty

I've been feeling a tad overwhelmed lately. Too much to do, all of it important, all of it needing to happen today. And the fatigue has come back with a vengeance. I wake up in the morning and actually feel pain when I force myself out of bed. I'm back on coffee just to get my body into some kind of shape before I tackle the day (but not so much caffeine that I turn into bitch-mom. It's a fine line).

"I feel like such a wimp," I whined one day to my husband. "Other people can do this, why can't I?"

He nodded sympathetically, but went on working on his computer.

"I know I'm doing a lot, but I'm so frickin tired all the time. Seriously, how do people raise kids and work?"

"You've got a little more on your plate than most people," my husband said, still working on his computer.

"Yeah, we do. But I know people who's kids are more disabled than ours and they can manage to hold down a job. I'm just a wimp."

He just kept working on his computer.

I waited for some kind of response, for him to say, "You're not a wimp, honey."

Nothing.

"Your silence makes me feel that you think I'm a wimp."

He glanced at me quickly, gave me a quick smile, then went back to working on his computer.

My mind went into panic mode. Oh my God, my husband thinks I'm a wimp! He's afraid to say anything because he doesn't want me to feel worse, but he's too honest to say he doesn't think I'm a wimp if he thinks I am one, so he's just pretending that I never said anything and then maybe I'll go away. I'm a wimp. I really am! Here's the proof! He won't even look at me...

I got up from the table and walked away, feeling like the bottom of my world had dropped 100 feet and the walls were too slippery to grab a hold of. The feeling stayed with me for two days, a crushing depression that grew as that evil voice in my head chanted loudly "You're a wimp. You're a wimp. You're a wimp..." It got meaner after a while. "You're a loser, a wimp, a weakling, a nothing. You can't do anything. You are the most worthless human being on the planet."

Do you know how much money I've spent on therapy in the last 20 years to get this voice to shut-up? I don't even know where it came from! No one ever said that to me. My parents never sat me down on the couch when I was 5 and declared, "You are nothing." So why do I have the meanest, cruelest, evil inner voice in the world?

After 36 hours, I'd had enough. "Shut up!" I told that voice. "I'm not listening." And I didn't. It took an enormous amount of energy to redirect my thoughts away from that cackling mantra of failure. I forced myself to think of what I had achieved (Grad school, motherhood and a publishing company... Hello!). When that inner voice got extra sadistic and shouted, "And your fat too," I told myself I am beautiful and stronger than I've ever been in my life (which is true. thanks to Kettle Bell, I can now lift my 90 pound daughter over rain puddles without hurting my back, something I couldn't do 2 years ago). Very slowly, that voice lost some of it's power and returned to that nagging whisper that is easier to ignore.

Therapy didn't get rid of that voice, it taught me how to manage it.

I still have a feeling that I am lacking, though. No matter what I do, that feeling just won't go away. I guess this is why I do so much. Time to stop.

Maybe with a little more practice, I'll be able to just live and not have to prove to myself that I deserve to live.

And maybe I'll learn not to try and talk to my husband about something important when he's working on a computer. He probably didn't even hear a word I said. 

Yep, I am still a tad batty. Maybe we all are.

Sanity?

I started my internship two weeks early. My master teacher contacted me and asked if I could observe an assessment of a new student that she thinks I may be working with once I start. "It would be good for you to see her from the beginning." Hell yeah! Not only was I eager to begin, but I'd just found out that due to the university not being able to use student TA's in their O and M classes anymore (thanks to some new accreditation regulations), I'd just lost 20 hours a month of intern hours and it will be a miracle if I finish my internship on time.

Rick rearranged his schedule to accommodate this change and I rushed off to Petaluma to meet my master teacher and my possible first student. I can't go into specifics, but I will say that despite my driving 150 miles in 108 degree temperature with a barely working AC, it was a great day. Finally seeing what I'd learned being used by a professional, experienced, O and M instructor was fascinating. It was so great, I volunteered to come back thursday, friday and the following monday.

But when thursday rolled around, reality set in. I am not prepared to start my internship at all. Rick was stressing, trying to support me by getting all his work done in time to meet Queen Teen's school bus, and I was trying to shove my giant to-do list into one day, something that proved impossible. I haven't even set up regular after school child care yet! What the hell was I thinking?

I observed my teacher again on thursday, then explained that I was wrong about starting so early. She understood completely and told me not to worry. When I explained how I'd lost so many intern hours and was worried about not graduating on time, she was shocked. But she agreed that I shouldn't put my family and myself through so much stress to try and make up hours before any of us are ready.

Is this a glimmer of sanity? Am I really learning to pace myself and make choices that support my mental health, rather than living my life like some kind of marathon with a finish line in sight?

I'm still worried about my internship hours and really angry about it. Losing 20 hours a month is going to be impossible to make up! Oh well...  just gotta keep breathing, stay sane, and keep moving forward.

The Challenge of 2010: Don't Freak Out

I am an expert at panicking. Give me a headline that reads "Schwarzenegger to call for deep spending cuts", and I feel my heart rate jump. Then I hyperventilate when I read the article: The governor will call for $8 billion in aid from Washington. If the funds don't come through, he will propose the wholesale elimination of CalWorks, the state's main welfare program, as well as a program that provides in-home care to the elderly and disabled.

Last year, the California budget crisis was so bad it seemed like every single program to protect people with disabilities was being decimated. There were demonstrations and lawsuits to fight for the services that keep the elderly and disabled safely in their own homes, and with adequate medical care. School budgets were cut so badly thousands of teachers were laid off across the State. All of the supports my child needs to grow and thrive were threatened. By the end of the fiscal year I lost dental care, but she still had hearing aids, so I didn't mind. As long as she's cared for, who needs teeth?

Here we are again. It's a new year and the shouts of "fiscal crisis" are echoing through the State capitol, making every person with a disability and every person who loves them start preparing for battle. The weakest are already being thrown to the wolves. And from what I've been reading, it appears that the budget cuts are going to be even worse than last year's.

But I will not freak out. Last year I spent five months panicking, waiting for the ax to fall and the State to take my child's medical care away. What good did it do? The cuts came, we survived, and all I got for my efforts was an ulcer. Does freaking out really help anything?

I'm not saying we should bury our heads under our covers and just hope for the best. Far from it. Write letters, protest, shout and scream, but do not panic. Keep your head on straight, plan for the worst, and fight for the best.

Right....

We already know how terrible I am at keeping my head on straight. Just look how I reacted thinking about school. I was on the edge of a mental breakdown before the news started reporting on the California budget crisis. Now it's all I can do not to burst into tears and run around the house yelling "fire!"

That's what I did last year. This year, I won't give in. I am determined to control my fear. I haven't quite figured it out yet, but it seems the age-old mantra of one day at a time is a good place to start. I've been practicing mindfulness for several years now, so I understand it conceptually, and have even had some (brief) success at staying in the moment, especially around my daughter's disability. Focusing on today helps me focus on my child, rather than on her problems. Now it's time to take it to the next level.

The budget crisis frightens me because it feels like my child is under attack. She is a "burden on California," a burden the State can't afford anymore. So they want to cut her, and the thousands of people like her, in the hope that maybe she'll just go away and stop draining money from the rest of us. It infuriates me how easily the "weak" are tossed aside to fend for themselves while the "strong" circle their wagons to protect their own needs.

I'm sure the situation isn't that simplistic, but as the parent of a child with disabilities who depends on all those services they want to do away with, that's exactly how it feels.

I will not freak out this year. I will stay clear headed and informed. I will not give in to fear which only weakens me. I will navigate this year of hard work and uncertainty with clear purpose and calm. I am that strong.

At the very least, I will get through each day without screaming at the radio every time they interview that mutha-f... I mean our governer.

Or maybe doing that will make me feel better?

Nothing like a little Battlestar Galactica to make me forget my cold

As soon as I take a break, I get sick. Does that happen to anyone else? I can go on full speed for weeks, and then the moment I've accomplished all that work and tell myself it's okay to slow down and put up my feet, I catch a cold. When I was an actress, I remember performing for weeks, and then two days after the show would close I'd be bedridden with the flu. And I wasn't the only one; most of the cast would also be coughing up a lung. No, we weren't all snogging back stage. It seemed that as long as we stayed busy, our immune systems stayed strong, putting germs in deep storage until the day we slowed down and rested. Then, all those germs locked away were set free, our immune systems saying, "Now you have time to get sick."

It has to be a short period of activity, though. Long term stress will make me really sick, but short term stress appears to be good for my immune system. Have you experienced the same thing?

So instead of continuing the great New Year's purge, I'm watching classic Battlestar Galactica on Hulu, the 1978 version, which was my favorite show when I was 11. I was crazy about Captain Apollo, and I gotta admit, I still am. When other girls in the the 7th grade were hanging pictures of Leif Garrett and Scott Baio, my locker was covered with pictures of Richard Hatch.

I like the new Galactica (especially since Richard Hatch is in it), but the old, campy, late 70's version is still my favorite.

No more caffeine for Mommy!

We ran out of decaf, and even though I knew I should stay away from caffeine, the smell of a freshly brewed pot of coffee at 5:30 a.m. was too strong to resist.

"You know that's caffeine," my husband asked.

I nodded and poured myself a cup. "A little won't hurt me." I gulped it down with a shot of peppermint-chocolate soy milk, feeling my taste-buds shout to my brain, Wake up! Then I began the task of getting Queen Teen ready for school.

Can someone please explain to me why her Jr High thinks it's a good idea to start school at 7:20 am, which means the bus comes at 7:00, which means we have to get up at 5:30 am?

The morning was uneventful. Queen Teen was her usual sleepy self, eating her breakfast with half closed eyes, brushing her teeth, getting dressed with some assistance from me. I was zooming around getting her school snack ready, cleaning her glasses and hearing aids, finding her shoes, all while noshing on a piece of toast. Then I poured more coffee into my tepid cup.

At 7:00, everything went wrong. The battery door of her left hearing aid fell off completely (it's been broken for a while and only stayed on through careful balancing of the hinge). I had to tape it shut to keep the battery in place. Then I shoved Queen Teen's gloves on while the bus pulled up to the curve.

"Mommy, we have to put my coat on first," Queen Teen said.

"No we don't. Hold still. The bus is here." Yanking the sleeve of her rain coat, I fought to pull her gloved hand through.

Queen Teen jerked away. "It won't work."

"Hold still!" I snapped. Then I jerked the jacket off, pulled off her gloves, shoved the jacket back on, and started yelling at her gloves as I tried to force her fingers into them. "Why does this have to be so frickin hard?"

Queen Teen just stared at me with wide eyes, her lips pressed tightly together.

Finally I got her gloves on and then I yelled, "Come on! The bus is waiting!"

I grabbed her arm and pulled the walker toward her, then practically dragged her and the walker out the door. "Move! We're late." The dog met us at the door, blocking our way, eager to dash outside and say hello to the bus driver.

"Get out of the way!" I shouted. The dog just froze. As soon as Queen Teen had a hold of the door frame I jerked the walker away and swung it toward the dog. "I said get the hell out of the way!" The dog ducked.

Whoa... what am I doing? I took a deep breath, carried the walker down the steps, then turned to help Queen Teen out of the house and to the bus. After buckling her in I kissed her forehead and said, "Have a good day."

She just looked at me with big eyes.

The dog stayed out of my way as I walked into the house and shut the door. Damn! I lost it. Again. "Come here, Boo," I said, leaning down and stroking the dog's head. "Good girl."

What happened? Why did I lose it over a broken battery door and a tangled glove? Usually this kind of thing is so normal I just go on auto-pilot. There's always something to slow us down as Queen Teen gets ready for school.

Then I remembered 1-and-a-half-cups of real, caffeinated coffee on an empty stomach first thing in the morning, something I know makes me jittery and anxious, even after lunch. That's why I switched to decaf.

No more caffeine. Some people suffer a personality change on alcohol; I obviously become psycho-agro mom on a cup of jo.

When Queen Teen came home from school I said, "I'm sorry I got so grumpy this morning. I was mad at the hearing aids and got frustrated. I shouldn't have yelled at you. It wasn't your fault."

She smiled and hugged me. "That's okay, Mommy. I get frustrated too sometimes."

Respite

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.

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.

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?

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.

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 am terrible at relaxing

I had minor surgery on Tuesday and have been lying on the couch watching old movies and drinking tea for four days. You'd think I'd be in heaven. What mom wouldn't love to spend four days lounging on the couch while other people do the laundry, the dishes, the housework, the childcare, the shopping and the bills? Unfortunately, I suck at relaxing.

I can't do it. Lying here, I think about the thousands of things that need to be done, like homework and editing and refilling the hummingbird feeder. I worry that Queen Teen is feeling stressed out by my incapacity and I feel guilty because my husband is having to do everything. He races from room to room, helping Queen Teen, doing the housework, answering the phone, running to the pharmacy, while trying to work on computers. My mom came one day to help, my friend Jane came the next. My sister-in-law stopped by with a Starbucks latte and some scrap booking magazines. All of these people came to help and support me while I recover.

I hate it.

I am the one who takes care of people. The one who waits on people. Not the other way around. So getting all of this attention is disturbing. Which forces me to ask: do I really think I don't deserve the help?

Why can't I allow myself to relax, say thank you when help is offered, let go of any guilt at watching the Thin Man in the middle of the afternoon, and stop worrying that Queen Teen will be damaged by my four days on the couch? Are all moms like this, or just me?

My family is struggling, but managing. Queen Teen has done a good job taking care of herself and my husband has dealt with all the extra responsibility without entirely losing his mind (mostly). They aren't the happiest people in the world though, and I see clearly how my energy keeps this family and our home running smoothly. But no one has died from my incapacity, not even the fish.

Perhaps I just need more practice letting go and relaxing. Although next time, I'll go on vacation and skip surgery.

Gravity is Most Definitely Still Working

On Thursday I was hurrying to the BART station to catch a train in time to make Fremont for my 9:00 am class. The sun was very bright as I walked directly east and the sidewalk was shaded by parked cars. I was thinking about all the homework I still had to do and the O and M skills test coming on Monday and the fact I have yet to update the Medusa's Muse website and.... BAM! I was sprawled out on the sidewalk. I had fallen into one of those large, square holes where there used to be a tree. The tree was gone, leaving a gaping trap for anyone blinded by sunshine and not watching where they were going to fall into.

I got up slowly and realized my foot hurt, but didn't seem too bad. My left knee throbbed, the palms of my hands were scraped, but I hadn't hit my head and wasn't limping. However, by the time I got off the BART train over an hour later, I was limping horribly with stabbing pain in my right foot. I made it to class, found an icepack, and spent the rest of the day long workshop (we were learning how to do vision assessments) with my foot propped up. Luckily one of my fellow students gave me a ride back to San Francisco where my car was parked at a friend's house. But I still had to drive the 2 hours back home that night, my foot and knee throbbing like crazy. Thank goodness for cruise control.

The next day, I felt every area that had made contact with the cement, namely the entire front of my body. I was bruised and aching and no amount of Tylenol could fix it. I spent the day working on my assessment report while watching Barabara Stanwyck movies, trying not to move.

If I'd been paying attention to where I was walking, I doubt I would've fallen. The hole was enormous, so regardless of the sun shining directly into my eyes, I probably would've seen it in time and avoided it. Instead, I plowed right through and ended up front down on the sidewalk.

It took falling to make me realize I am too much in my head these days. Not surprising; there's just too much to do and I feel that I'm constantly playing catch up, scrambling up a rocky hill that is collapsing under my feet. The amount of work is impossible and all needs to be done now. I made my list, distinguishing "Important" from "Unimportant," but everything is so dang IMPORTANT right now, not the least being a mom to my daughter. Because it all needs to be done, I'm not doing any of it very well. For a type A perfectionist like me, half-assed work is unacceptable.

Because I am such a perfectionist, it takes an injury to get me to slow down. I wish I'd learn to stop and breath BEFORE I fall into a gigantic hole in the sidewalk that anyone who'd been watching where they were going would've noticed. Now I'm stuck on the couch with my foot propped up, forced to sit still and pay attention to right now.

Right now I will make a pumpkin pie with my daughter, help her work on her scrap book, and practice Orientation and Mobility skills for the practicum on Monday (I wonder if I can guide someone while limping?). The rest of my homework and the edits due on my book will just have to wait. I promised my daughter we'd spend time together this weekend and I won't go back on my word. School and work will just have to be the half assed portion of the evening. My daughter comes first.

The Bill of Rights for Caregivers

The following is a list of rights caregivers must have to remain strong and take care of themselves. All too often, caregivers forget that they need support just as much as the people they care for. This includes me.

A Caregiver's Bill of Rights

by Jo Horne

I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Recently, I forgot about this list, which is why I'm now completely exhausted. I forgot to ask for help, take breaks, and give my body the food and rest she needs. It's not surprising; parents of children with disabilities tend to devote their entire lives to caring for their children, even at the expense of their own health and well being. After 13 years and hundreds of hours of caregiver training, I know better, and yet I do it all the time. I get busy and focused on Queen Teen and slowly forget to take care of myself, only remembering that my body requires a certain amount of calories every day when I get the shakes and feel dizzy. Oh yeah, food. When did I last eat, I mean, some kind of food other than just a protein shake and a bottle of water?

Maybe one of these days I'll realize I'm falling into the old mother-of-a-child-with-special-needs, sacrificial trap before I get caught. For now, I can only give myself a good stern lecture, forgive myself for becoming a martyr, and find something really good and healthy to eat. Then tomorrow I can try to balance my own needs with the needs of my daughter and hope I figure this out a little better one day.

Or not. Has anyone managed to keep this all in balance?

Depleted Mother Syndrome

Yes, it's real, and I'm pretty sure I have it.

Depleted Mother Syndrome is a serious problem that affects mothers of young children, especially toddlers. It's not postpartum depression or PMS, it's a condition created by the nonstop, 24/7 care of small children who require ALL of our time and attention. According to Rick Hanson, PHD, who coined the phrase Depleted Mother Syndrome in his book, "Mother Nurture," the causes of DMS are:

"... lack of sleep and exercise, poor diet, hormonal imbalances, nutrient loss, neurotransmitter deficiencies, guilt, anxiety, conflicting role expectations, marital conflict, and a breakdown of social supports. Its symptoms include chronic fatigue, susceptibility to illness, connective tissue problems including back pain and headaches, emotional numbing, depression, mood swings, irritability, hopelessness, confusion, running battles with husbands, and a turning inward away from friends and family."

Think about it. You've just given birth, a process that robs your body of vital nutrients to create another human being, and then you spend the next 4-5 years compulsively nurturing that child while getting little sleep and probably having another child during that same time.

Yes, I know my daughter is a teenager, and the syndrome is considered a condition of mothers with young children, but I think mothers of children with disabilities also suffer from depletion. We are still giving the same amount of energy and care to our children that we did when they were 2 and 3 years old. After several years of this, our bodies will begin to suffer. There is only so much a human being can do, and ultimately, mothers are still human.

I've been seeing my doctor to try and find some kind of medication to help get my anxiety level under control, but nothing is working. Every pill I take just makes me more agitated. And really, I don't feel depressed, not in an emotional way. I feel worn out, like my body is honestly running on empty and I'm coasting on what little is left in my bones. The problem is I have to keep going; I'm a mom and my daughter needs me. What can a mother do to care for herself when the demands of her child require super hero powers?

Time to change my plan of attack. Instead of looking at my exhaustion as something I need to medicate away, I need to look at what I give to myself and what is lacking. I had a physical so I know I'm not anemic or have anything like hypothyroidism, so what I really need is rest and good nutrition. Are there times in my day when I could put my feet up for a few minutes? Am I eating nutritious food, or just grabbing anything to stave off hunger? This is an opportunity to learn to nurture myself while also nurturing my child.

What kinds of things do you do to care for yourself? And do you think mothers of children with disabilities are just as depleted as new mothers, or do you have another theory? Send me your comments. I'd love to hear from you.

At 8:30 all the Moms come out to Walk

I love to walk. When I lived in San Francisco I didn't own a car and rarely took the bus. Instead, I walked several miles a day, loving the feel of the pavement under my feet and the flow of the city all around me. Today, I go out walking in the mornings as soon as I drop Queen Teen at school. I plug in my IPod and leave the sad dog at home (I take her later, but she can't keep up with me when I power walk), letting my arms swing as my body gets into the zone. The stress dissolves from my shoulders and my heart rate keeps time. I love it!

Yesterday while walking, I passed two women my own age who were walking together and chatting. I nodded, zipping past as the music of Pearl Jam pushed me faster. A block later, I passed another small group of women, also my own age, and then in the next block four more women. Around the corner I had to slow down for a group of women who looked like they were on a break from work because they wore dresses with tennie's while they strolled. When I finally passed them up I looked around and realized the neighborhood was FULL of walking women, mostly my age and mostly in shorts or lose pants and t-shirts.

I suspected they were all like me, moms who'd just dropped their kids at school and were now pacing the neighborhood. It was 8:30 am. The first bell of every school had rung and every child in town was in class. We moms were free!

Then I realized that not only was I walking with every mom in town, I was COMPETING with them. I couldn't just comfortably walk; for some bizarre reason I had to out pace every group of women I came to.

I laughed at myself, cranked up the tunes, and tried to relax again. Come on, Terena, this isn't a race. Just listen to the music and get your flow back.

If you go out walking at 8:30 am, look for the moms. We'll all be out there in our baggy t-shirts and tennies, walking before the day gets away from us.