Thursday, October 4, 2012

Medusa's Muse new Website

Want to see what else is keeping me too busy to write? Check out the new and improved website for my publishing company, Medusa's Muse Press ( )

My press is thriving, just like my daughter.

Friday, September 28, 2012

Fear Goggles

I've been writing sporadically these days, and I apologize to those who've been concerned about Queen Teen. I'm happy to report she's doing great. Still very tired, but back in school half days. The gagging has improved and she's eating well again. But most importantly, the sparkle in her eyes, the disdainful grin when her dad does something "silly" and the giggly laugh have returned.

It's been hard on all of us, but that girl is a wonder. While I've been racing around trying to keep life in some kind of order, she's quietly but steadily grown stronger. I've focused on stabilizing her health, getting all the supports in place, setting up more doctor appointments, researching Mito to try and understand her symptoms, while also starting another year of teaching. I've put all this energy into the crisis, unable to see the strength in her wobbly limbs. But I guess thats a mom's job sometimes; hurry and put out the fires before anyone can smell the smoke.

How do you not get lost in that battle? How do you keep perspective when the center of your life has collapsed and everything you hold dear is threatened?

Friends. Breathing. A garden filled with veggies you don't know how to cook. A glass of wine. Good dark chocolate. Meditation. Running. Self-compassion.

Writing used to be my anchor, but unfortunately I don't have much time to do that right now. It's frustrating, though. I'm filled with stories as usual but my daughter, my job, and my press require too much mental energy. I'm so tired at the end of the day by the time she's asleep, I'm crawling into bed too.  I thought about deleting this blog because I just don't have the time to keep it up,  but I've made some wonderful connections here with other special needs parents through their blogs, so I'll keep it going.

Fear is my enemy. It is large and dangerous and kicks me in the teeth at the most annoying moments, like when I'm driving the car to work and all of the sudden my heart constricts with grief. I think I'm fine and then: wham! It's exhausting trying to keep up my guard and stay focused on the positive so fear doesn't overtake every moment of my day.

I seem to be getting used to the fear, or at least making peace with it. I don't deny it, I just try not to feed it. Yesterday I realized that my whole world has been reduced to controlling the fear, so much so that I have become unable to see the good things in my daughter's life. I have "fear goggles." All I can see is what she's lost, not how much she's thrived.  In March she couldn't eat. In September, she eats hamburgers. In May she weighed 79 pounds. Today she weighs 88. This summer all she wanted to do was rest on the couch watching movies. Now, after a short rest, she wants to do something, usually go for a walk or shop or play a game. In August she was late to school every morning. It's almost October and she usually gets to school on time and will start riding the bus again.

I took off my "fear goggles," looked around, and saw my daughter.

We still don't have any answers and the future is enormous and scary. Her life will be short, but how short, we don't really know. Today she is in the 11th grade, loves neon colored clothes with lots of bling, is giving her new sitter a hard time, tries to manipulate me to do everything for her, fights with her dad a lot, is easily bored, and hates going to the doctor. She can run her iPad on her own and can't wait for our Disneyland trip in November. Her cousin is still her favorite person in the world.

Thank you everyone for your continued support and comments. It really helps.

Thursday, September 6, 2012

What I learned during Summer vacation

I don't know what it is about August, but it has always been hell month for me. It's not just the unending heat or the way my skin bristles every time the too bright sun touches it; life tends to triple its speed in August until I'm utterly worn out. By the time August ends, I am longing to hide in a cool bath in a dark room far, far away from telephones and to-do lists.

This August was no exception. Queen Teen had two trips to Stanford, plus a muscle biopsy (more on that later). Her recovery was good, but slow, and I got to battle with three different agencies for a shower bench (more on that to come later as well). I was frantically trying to finish the new website for Medusa's Muse before I went back to work (didn't make it). And then school started; I went back to teaching and she started the 11th grade. Rick and I juggled my return to work and QT's reduced school schedule (half days for now) with our usual strategy: take it day by day and stress out the entire time. Thankfully a good friend has helped out while I continued to look for regular child care

Now it is September and we are all starting to settle in to our new schedule. I harvested the basil this weekend and am making several pounds of pesto to enjoy this winter, and this year we enjoyed our first delicious crop of table grapes from our 8 year old vines. The summer was stressful because of the changes in Queen Teen's health. But it was also oddly peaceful. When I look back on the last few months, I see just how lovely our summer was (except for that dreaded August). And I learned some very important things.

What I learned during Summer vacation.
  • Tomatoes need consistent watering or their skins will crack and the fruit become misshapen. 
  • All those late nights and extra hours I spent teaching are totally worth it if I can have summer off. 
  • It is important to spend time doing nothing. If you fill your days with tasks and to-do's and constant business, you never have time to truly enjoy being alive. Sit in your yard every day with your shoes off and watch your garden grow while listening to the humming birds fight over the flowers. 
  • Doing the above is even nicer with a glass of good wine.
  • Creating a peaceful space in your home, a place where no work is allowed, is very important for mental health. This space is even more helpful if you create it in your bedroom.
  • Reading a book on a Kindle is fun. 
  • Going to the mall with a typically developing teenage girl is fascinating, especially when you turn that girl lose in Abercrombie and Fitch.
  • Having Queen Teen's best friend with her when Queen Teen had to get her biopsy made everything much better. We should always bring a friend (and not just one of my friends). 
  • In-laws who will paint your bedroom and clean your kitchen are the greatest gift there is.
  • Running feels good.
  • A slower pace to match Queen Teen's lower energy is kind of a gift. Stress was reduced because she wasn't begging to do things all the time, and when we did go out, she seemed to enjoy it more.
  • Sharing time with a person who is ill teaches you not to take things for granted. I know we've all heard that before, but when you're caring for your child who is struggling so much just to walk or eat, you realize how wonderful each moment of your life is. This child is precious and beautiful, and her time on this Earth is limited. We don't know how long, but I know I will out live her. So enjoy the days, the accomplishments, the set backs, the laughs. Enjoy and savor each breath. We all have limited time; don't waste your one beautiful life.
  • But remember, enjoying your life doesn't mean filling it up with accomplishments. The time you spend with your family is far more important than what you think you need to achieve. 
  • Working with your hands, rather than only with your brain, is extremely relaxing.
  • Curious George is hysterical.
  • Pumpkin plants need a lot of feedings if you want to make a pumpkin pie this fall. 
  • A car with air conditioning equals liberation.

Saturday, August 18, 2012

The Mito Muscle Biopsy

Does she have Mito, or doesn't she? According to the "Bernier Criteria," a scaling system based on evidence such as clinical and visible symptoms, Queen Teen does have Mitochondrial disease. In fact, the Bernier Criteria upgraded her from "probable" to "definite." But we still don't have a specific diagnosis of the type of Mitochondrial disease she has. In an effort to maximize possible treatments, we decided to have her undergo a muscle biopsy. The biopsy would show if her muscles have "ragged red fibers." If so, then she definitely has Mitochondrial disease. If not... well... she still has Mito, but we will be no closer to understanding the type of Mito she has.

On Thursday, we drove to Stanford again, this time with her Aunt Mimi and best friend/cousin, Mae-Mae. The four of us had a wonderful time exploring the Stanford mall, where Mae-Mae introduced Queen Teen to the joy that is Ambercrombie and Fitch. We stayed in a nice hotel near the hospital where we ate dinner by the pool (which wasn't very good, but it was a lovely setting and our room was just three floors away). Queen Teen was ecstatic to have her best friend so close. Occasionally she'd reach out to hold Mae-Mae's hand and Mae-Mae would hug her or help her with a drink or find a book. Aunt Mimi was an incredible support for me, reminding me of details the doctors had said and finding my purse when I couldn't see it 6 inches  from my ankle . Thursday evening I took a break and had a glass of wine by the turquoise pool, comforted by the fact that Aunt Mimi and Mae-Mae were there helping Queen Teen. 

Friday was the actual procedure. We all woke up at 5 AM, scooped up Queen Teen, and then drove one mile to the hospital where we rolled her in her wheelchair to the Surgery Center. Queen Teen was tearful and frightened, but every time Mae-Mae held her hand or smiled at her, Queen Teen smiled back. Unfortunately they wouldn't let Mae-Mae into the pre-op area because she's under 18. But Aunt Mimi came, helping me stay strong so I could help Queen Teen stay calm.

The last time we were at the Surgery Center, Queen Teen fought and cried so hard that one of the nurses had to leave the room in tears. Two years later, there was no screaming. We took it very slow; the nurse had me take the lead on showing Queen Teen what was happening. The Resident (who was cute!), interviewed me from the doorway and later had me put the numbing cream on Queen Teen so she wouldn't be frightened by a stranger doing it. Queen Teen took the medicine the Resident gave her and in about ten minutes was stoned enough to lie back and relax. The Resident and nurses took her to surgery without me having to hold her hand the whole time. There was no fighting.

She's really grown up; at 17 she can understand what is happening a little more and can calm herself down when she's panicking. The staff at Lucille Packard Stanford are wonderful supporting kids with Special Needs. I'm sure we upset their schedule, but they didn't rush us. Slowly, we got Queen Teen ready, and she went into surgery without tears.

I waited in the cafeteria with Aunt Mimi and Mae-Mae, drinking decent coffee and fighting the desire to find my child. I hate waiting like that. My child is in a room full of strangers, completely helpless, and I'm just trusting these people not to hurt her. I do trust them, though. Lucille Packard is an amazing hospital. Regardless, that hour was horrible and I am so thankful that I had the support of family with me. 

And then, a wonderful thing happened. Nurse Sarah who used to work with Queen Teen when she saw Doctor Sanger, walked into the room and gave me a big hug. She was so positive and happy to see me, my fear disappeared. We chatted about Queen Teen and the biopsy, how well she's doing despite her illness, and what Nurse Sarah is doing now that Dr. Sanger left Stanford. So many people have worked so hard to help Queen Teen, and Nurse Sarah is one of the best. We really miss her.

Finally the procedure was over and the surgeon came out to see us. She did great and was in recovery. Aunt Mimi and I went to post-op to be there when Queen Teen woke up. However, Queen Teen decided she wanted to stay asleep for another hour. I can't blame her; she was exhausted, overwhelmed, and after 15 hours of fasting, out of fuel. When I first took her hand she opened her eyes and then kissed me. After that, she went back to sleep. I tickled, stroked, kissed and massaged her, but she refused to wake up. The nurse just shrugged. "It happens. Her body really likes the medication." Eventually Queen Teen woke up enough to sit up and drink some juice. Once that happened, the nurses let her go, but Queen Teen slept almost the entire three hour ride home.

Rick was waiting for us when we got home. Aunt Mimi and Mae-Mae helped us unload the car and get Queen Teen settled, then they drove the hour to their own house. Again, I cannot express how thankful I am to that they were there. I told Mae-Mae that she's coming again next time Queen Teen has a procedure.

"I don't care if you have school. You're going."

She smiled and shrugged. "No problem."

Now we wait for results. The biopsy shouldn't take too long, but the skin cells will take longer. Hopefully, we hear something on Monday.

Tuesday, July 24, 2012

Meeting Llama Tsultrim

On a smokey, sunny morning, I drove and hour and a half north on Hwy 101 to Rangjung Yeshe Gomde, a Tibetan Buddhist meditation center in Leggett. I had an appointment with Llama Tsultrim Sangpo, a buddhist monk from Tibet who had agreed to talk to me about my daughter's illness.

I've read many books written by buddhist teachers and philosophers and spent several years following the teachings of Thick Nhat Hhan and Pima Chodron, but I have never spoken with a Monk or Nun, let alone a Tibetan Llama. What would he be like? How should I greet him? Was I appropriately dressed in my slacks and long sleeved blouse? I knew it was rude to flash your boobs at a Monk.

The retreat center is just off the highway, tucked into the hills that are thick with trees and wildlife. I was greeted by a man who seemed to be the caretaker and he directed me to the retreat's center, a large kitchen and dining hall where Ani Marsha was preparing lunch. Ani Marsha gave me directions to the cottage where Llama Tsultrim waited. Driving on the bumpy one lane road through the hot silence of late  morning, I smelled the dry grass as it crackled in the sun. At last I reached the cottage, a one room studio in the shade. The Eel river gurgled several feet below and two jay birds yelled at me as I parked.

The front door was opened by a man wearing rust and orange robes with a pair of glasses pushed up on his head and a cell phone in his hand.

"Hi, I'm Terena," I said.

He nodded and said, "Come in."

I remembered to take off my shoes before entering. He nodded toward a corner of the room and told me to sit down. Did he mean sit on a chair, at the table, or on the meditation cushion? I chose the cushion, but then thought maybe it was his cushion and that was rude. I was too embarrassed to get up and change to a chair.

He handed me a piece of paper where instructions on how to use the phone were written. "Do you know what this means?"

After helping him with the phone (which still wouldn't work right), he said he'd be back. He was trying to call the interpreter because although he understood English, he wanted to make sure I understood everything he was saying. He walked outside and left me alone for a few minutes. He definitely wasn't what I expected; instead of an elderly Tibetan monk welcoming me into his room filled with incense and bells, Llama Tsultrum was about my age.  He struggled with a cell phone just like any other person would and his room was as ordinary as any one room cottage could be.

He returned and the interpreter joined us.  The three of us sat on meditation pillows around his altar and then he asked how he could help.

I told him about my daughter's illness and that she would eventually die. "And there's nothing I can do to help her or cure her. Watching her suffer is breaking my heart and I can't breath from the grief and anger I feel. I can't meditate because my mind runs around in terror and the only thing that helps is if I stay busy. I know what I'm feeling is natural and I'm not asking to escape suffering. I'm asking for help so I can bear the suffering and be strong to help my daughter through this."

The interpreter repeated my words in Tibetan and Llama Tsultrim nodded as he listened. Then he spoke. I've never heard Tibetan spoken and it is a beautiful, soothing language. It sounds Asian, but doesn't have the same high notes and short clips of Chinese or Japanese. I couldn't understand what he was saying, but I loved listening to the low melody of his voice and felt assured by his thoughtful responses.

He spoke about the love of a mother for her child and how powerful that is, how the bond between a child and mother is stronger than anything in the universe. He told me the depth of my grief is directly tied to that bond because I love her so much. But the time will come when I will have to let go so she can go move on to her next life. However, I can help her during the process of her death and eventual rebirth by staying devoted and loving her with all my being. A mother's prayers for her child are important in helping the child go on to a fortuitous birth that will bring her closer to enlightenment. But yes, the pain is great and I need to care for myself as much as possible.

I spent an hour with Llama Tsultrim, mostly listening to his words as spoken through the interpreter. As the time passed, I felt calmer and more centered. Here was a wise teacher who listened with his full attention, who cared deeply for me and my child (a child he's never met), and who offered practical advice on how to bear such terrible grief. When I asked for specific instruction to help me find strength, he taught me a new meditation technique. Llama Tsutlrim asked me if I had a relationship with a deity and I explained that I find strength and wonder in the natural world. He encouraged me to meditate in nature and continue working with plants. He also told me to think if an emotion or action is "useful." He didn't use terms like "good" and "bad" he asked, "Is this anger useful?" Just asking myself that question now and then helps ground me when my emotions become a whirlwind in my head. I still feel them, but is getting lost in them useful? Is getting drunk every night useful? Is wanting to yell at my husband because he isn't grieving the way I want him to useful?

The greatest thing I took away from this was the understanding that I could not get lost inside my own grief; my daughter needs me too much. It is natural to feel sadness and rage and I shouldn't suppress or ignore it. But I can't let the grief be the only thing in my life. She is the one going through decline and the one who will eventually die. I need to help her so she won't be afraid.

Even writing that makes my bones ache with sadness. The look in Llama Tsultrim's eyes told me that he knew how great my pain was and how impossibly hard this journey will be. There was so much kindness and compassion in one small man and just sitting with him in that little cottage by the Eel river made me feel more peaceful than I have in a very, very, very long time. The feeling lasted several days.

Monday, July 9, 2012

Recognizing Blessings

The trouble with depression and fear is that they bury anything remotely positive in a bog of thick gloom. The little glimmers of hope vanish as the darkness thickens. But occasionally, something beautiful will appear and remind you that life is still sweet.

Like your daughter finally getting into the swimming pool at school and having fun.

A plant you thought you'd killed struggling back to life and blooming with tiny pink blossoms for the first time.

Texts filled with hugs and love from friends who live far away.

The people who drive an hour just to take your daughter out for ice cream.

Your mom who offers to mop your floor and iron the pile of work shirts you've been ignoring.

Comments from people you've met via blogs; people you've never met, but who offer support anyway.

The social worker who keeps trying to find you more help despite the budget cuts.

The dog who demands a walk in the sunshine and won't let you just lie in bed all morning.

All the varieties of veggies and fruits at the farmer's market this time of year. The taste of fresh organic strawberries.

Your husband who shows you a thousand times that he really does understand and really is there, even though it's sometimes hard to see.

Hearing a new song on the radio that makes you want to cry and dance at the same time.

Godiva chocolate.

Tuesday, July 3, 2012

How would you feel if your worst fears are confirmed?

Whenever we go to Stanford for a medical appointment, we stop at the Disney Store so Queen Teen can indulge her obsession with all things Disney. Ice cream isn't enough any more, instead Queen Teen gets to buy a new doll or shirt or trinket, usually related to a Princess.

My Disney Store is called Godiva... as in Godiva chocolate. There is a Godiva store at the Stanford Mall so my treat after the long drive and worry is to blow thirty bucks on a box of delectable truffles. I would spend so much because we used to only go to Stanford three times a year. Now we'll be going more often, so I'd better cut back on my Godiva splurge before I gain 40 pounds and max out my credit card.

However, we won't be cutting back on Disney.

Queen Teen had a genetics appointment last week with Dr Enns, the leading expert on Mitochondrial Disease in the U.S. We've been working with him for 5 years and he's put her through every test he can think of to confirm whether or not she has Mito. All of the tests come back negative. The mitochondrial sequencing test showed an anomaly in 100% of her mitochondria, but this is more likely a familial trait, not the cause of her illness. This time, I was the one who had to get blood work (Queen Teen loved that) so they could determine if I too have the anomaly. This would confirm that it's just the way our mitochondria are made.

Dr. Enns was alarmed at how rapidly Queen Teen has lost ground, and it felt reassuring that the doctor is just as worried as we, her parents. Reassuring isn't the right word. You know that feeling when you go to the doctor convinced that something is terribly wrong with your child, only to have a condescending physician pat you on the head and tell you not to worry? It's infuriating. Then you go to a different doctor and that doctor takes your fears seriously and immediately gets to work trying to help your child. You feel calmer and reassured that the doctor cares about your child.

But how should I feel when the doctor confirms my worst fears about my daughter, tells me to trust my intuition without actually giving a prognosis, and talks about aggressive tests to find the right treatment to improve her quality of life? We're not discussing cures or longevity, we're discussing symptom care and slowing down progression.

Dr. Enns and her new neurologist want a muscle and skin biopsy, and we agree, even though this means anesthesia and minor surgery. While she's out, they will draw more blood and try to squeeze in an MRI. He has recommended a newer Mito-Cocktail and is recommending that she be part of a medication research trial.

I can't believe I'm going to put my kid on experimental medication.

It will take some time to get the appointments organized (she also needs to see a cardiologist and respiratory specialist, as well as the surgeon and several doctors on the medication committee) and I'm so thankful that Dr. Enns' assistant is dealing with that. Hopefully, we'll get this done before school starts August 20.

Queen Teen will be getting a lot of Disney swag this summer, and I'll probably be eating way too much chocolate. 

Sunday, June 10, 2012

I was drowning in paperwork, so my husband rescued me.

On Sunday, I spent five hours of a beautiful, sunny day locked up in my room surrounded by piles of SSI forms, pay-stubs, bank statement, savings statements, insurance statement, medical reports, old IEP's, current evaluations, CCS authorizations, Regional Center authorizations, receipts, artwork from my daughter, articles I wanted to read but never managed to, advocacy information, special education legal guides, a few Johnny Depp pictures, and paperwork filed under "miscellaneous." My entire room, from floor to desk to bed, was covered in white and beige paper.

I was preparing for our annual Social Security interrogation... I mean the "Representative Payee" interview. Every year I need to show Social Security that I am wisely using the money they give my daughter for her care, while also showing we need the help and that I'm not trying to screw the government out of benefits we don't need. I have to justify every expenditure and keep track of every penny, showing bank statements and pay-stubs for an entire year. I imagine it must feel a lot like preparing for a deposition.

Since I had to organize the paperwork for that, I decided I might as well tackle the whole mess. My filing system of throwing paper behind the bed was no longer working. Typically, I keep excellent records, but this last year has been a tad more hectic than normal, so in a rush I'd toss documents into a pile to put into the filing cabinet "later." Later had arrived, and I plowed into the pile with determined dread.

Two hours in, I was in full blown panic; my body was shaking and I couldn't make sense of the forms I was reading. Is this my bank statement, or Queen Teen's? What year is it? How far back do I need to go for pay stubs? Is this an original or a copy? How long do I have to keep this shit? The filing cabinet was packed with every important document since Queen Teen's birth and here was more needing to be filed. More and more and more and it just kept coming and I had to keep track of it all and if I lost anything it seemed to cause problems but how much more could I cram into the filing cabinet and OMG!

My husband entered the room. "Honey."

I jumped. "What?"

He looked at me and then the pile, asked a quick question, then left. Smart man.

After another thirty minutes I walked out of the room needing to escape the claustrophobia of paperwork. My husband handed me a glass of wine and said, "Come outside."

"I need to finish filing."

"Just a minute. I want to show you what I'm doing."

"You mean you want me to help you." I scowled at him.

He shook his head and said, "I just like the company."

I sighed and resigned myself to going outside to look at the fence he was repairing. We chatted about lattice and rotten wood and how many posts he had to replace. I looked at the flower pots he bought earlier that day and remembered the succulent still sitting on my kitchen window. It would look lovely in that pot. Soon, I was happily potting the little succulent and taking it to its new home in the back garden.

Oooh, my husband is good. All he had to do was get me outside near my plants to help me calm down. Just touching a little dirt and smelling the damp soil after I watered made the panic leave my body. The sun was warm but not too hot and the breeze smelled like jasmine and old wood. I smiled at my husband who was busy tearing out old boards from the rotting fence.

Smart man.

Wednesday, June 6, 2012

A Fascination with Terrariums

As I've mentioned in an earlier post, I've been having trouble writing lately. Instead, I've been drawn to the delicate beauty of terrariums. A tiny plant; some sand and rocks; a bit of stone and glass; a surprise of feather or bone. I arrange the various items to decide which plant will go with which shell and the shape of the bowl, then start arranging. It's like creating living sculpture. My husband likes to call them, Terenaiums (a mix of my name and the word. since I'm the one making it, why not?

Here was my first attempt:

A tall, square, glass vase filled with rock, moss, soil, and then two cuttings from the plant that was tangled in my kitchen window (which I can't remember the name of now).

I also added shards of sea glass
I'd collected at the beach for more sparkle.

I made this one using the glass bowl my sister-in-law had given me and an abalone shell Rick and I found at the beach.

With the addition of sand and smooth glass beads, it reminds me of water lapping on shore.

This one I made for my husband.

If you look closely, you'll see the glow in the dark UFO surrounded by bits of reflective debris.

Soon the plants will grow around the crash-site until all traces are hidden (unless Moulder and Scully get there first).

I am obsessed with terrariums now; I see little bits of plant life, wood, shells, coins, figurines, chicken bones, rocks, old forks, antique buttons and left over party favors and instantly wonder what kind of terrarium I could make. Looking at plants, I try to decide if it could live surrounded by black sand in a glass jar. I've always been into plants, but now I am making artwork with plants and random bits of interesting things I find lying on the ground when I walk.

I bought a great book called Terrarium Craft, by Amy Bryant Aiello and Kate Bryant, and it is fabulous. An inspiring book with great ideas and gorgeous photography. Includes step by step instructions on creating terrariums in which your plants will thrive. 

I'm hooked, so my husband built me new shelving in the kitchen to display my creations. And don't be surprised if everyone I know gets a terrarium someday. They'er just so fun to build. And a soothing break from working with words all the time. I'm still using good creative energy, but not in a focused cerebral way. A perfect break for my overloaded brain.

Feeling better? Good, that means we can smack you around more.

Usually, meetings with our Regional Center worker are helpful and positive. Our worker comes to the house and the two of us plan Queen Teen's year. What activities would she enjoy? What are her current challenges and what kinds of support does she need? What kinds of support do I need to continue caring for her? What do I dream for her future and how can the Regional Center support those dreams? What does she dream of doing when she's grown up and where would she like to live?

But this time, the meeting was far from positive. 

It began in the usual way; we discussed Queen Teen's current issues and her changing medical status and then talked about some of the challenges she's experienced at school. We went over her past I.F.S.P. (individualized family service plan. like an IEP, but broader.) and updated information. I signed permission forms for the Regional Center to be able to talk with Queen Teen's doctors and other service providers. And then, I told him that that Queen Teen was approved for Protective Supervision from In-Home Support Services.

"She was?" he said with raised eyebrows.

"Yes. I applied like you suggested and she was approved," I said.

"Oh. That might be a problem."


"Because there's a new ruling about Protective Supervision that I just found out about this morning. If you are getting Protective Supervision hours, you can't get respite."


"I'm sorry. I just found out about it. You can't have respite and Protective Supervision at the same time. The State considers it a type of respite. I'm sorry."

I felt the air leave my body as I slumped back into my chair. "How is Protective Supervision even remotely the same as respite? I'm working. I'm taking care of her around the clock. We needed more hours because her needs have increased. This isn't respite. Respite is the only time I get a break."

"I know, and I agree. But the State doesn't agree with us. The new ruling states if you have Protective Supervision then you can hire someone else to provide respite."

"Who am I going to hire? I haven't been able to find anyone to watch Queen Teen after school. Who is going to watch her other than our highly trained respite worker?"

"I'm sorry."

"So what the hell is the State of California going to do with all the parents and caregivers who end up having nervous breakdowns because they don't get breaks anymore?"

He said he was sorry again. Then he told me about more cuts to services (which are so annoying and stupid I won't bother going into) and informed me that Queen Teen can never live in a group home because she isn't ambulatory. Her choice is to live with me forever, or in a nursing home. 

Thanks to massive budget cuts, gone are the days of the friendly and supportive I.F.S.P. Instead, the Regional Center is cutting costs by forcing more of the care and support of their clients onto families and other agencies, which are also cutting care. Basically, Queen Teen and I are screwed. As she becomes more medically fragile her daily care and support will land primarily on me. 

What are kids without a mom like me going to do when all of their services are cut?

I was furious and I know our worker was embarrassed; he left as quickly as he could. After pouring myself a glass of Pinot, I went outside into the yard and cried in my vegetable garden. No respite? No support? No days off... ever? I am not lucky enough to have a large and supportive family to help out, nor are many of our friends able to step in and watch Queen Teen for a few hours. I am exhausted, terrified about the future, and overwhelmed by Queen Teen's increasing needs, and now I am totally fucking alone. 

That's how I felt for a few days. Then I did some research, and the more I researched the ruling (which I found on-line) and dug deeper into some of the other cuts our worker talked about, as well as the "never live in a group home" statement, I realized that the Regional Center is being reactionary. Yes, the cuts are bad, and I understand that they are operating on a budget that will barely pay their electrical bill, but walking into my home and telling me everything Queen Teen can't have or will never have is unacceptable. It's called an Individualized Family Service Plan for a reason: individualized. There is no way I'm giving up all the supports this family needs to help Queen Teen thrive without a fight. 

But damn, these last three months have left me bruised and emotionally limping. Do I really have to keep fighting like this for the rest of her life?

Friday, June 1, 2012

Say What?

One of the blogs I love to read is called "Say What?" The writer is a mom who's child has special needs, including deafness. Her writing, stories, and photos are great. Plus, she provides really good info, like this:

This is a link to a blog post about grants to help pay for hearing aids, and a video on putting in a kid's hearing aids. Just had to share it.

Tuesday, May 29, 2012

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.

Sunday, April 15, 2012

Second Easter in Hospital

Queen Teen has had two Easter baskets from Lucille Packard Children's Hospital, which is two baskets too many. The first Easter we spent there was after her feet surgery when she was 11. The second was this past Easter.

We finally heard from the neurologist who wanted her admitted to the hospital immediately for tests, so we dashed down to Stanford and spent three days there. Queen Teen was low on glucose and electrolytes, but a couple days of IV fluids brought the color back to her cheeks. Our new neurologist is excellent and I have a lot of faith that he'll be able to help us sort out the mystery of Queen Teen's disorder.

Disorder. Syndrome. Why can't I call it a disease?

We're home now, waiting for the results of all those tests, including an EEG to check for possible seizures. Her strength is poor and stamina worse, but she's slowly feeling better (I can tell she's feeling better because she's getting bossy again). Eating is still tricky and some days she has trouble swallowing juice. Other days she can eat Mac and Cheese with gusto. Just like everything about her neurology, her symptoms come and go. She's still not strong enough to go to school a full day, but maybe in another few weeks? Time will tell.

That's always the answer: time will tell. What will happen next? Time will tell. What does she have? Time will tell. What can we expect? Time will tell...

I found this great site that explains what Queen Teen has: What is Mitochondrial Disease? The United Mitochondrial Disease Foundations is an advocacy and resource organization which also raises funds for research. With a long list of possible Mito diseases, why is Queen Teen such a mystery? Why can't we discover her disease's label?

And why do I need to know so badly now?

I could lose my daughter; I know that now. Am I strong enough to go through this with her, to be there for her no matter what may come?

Monday, April 2, 2012

The possible syndrome roller-coaster.

Well, here it is: the possible syndrome roller-coaster. It's the exciting, heart-pounding, emotional ride in which you get to worry incessantly about your kid while doctors hunt for answers, and then after a fever pitch of panic, you get the 1000 foot drop straight down when all the tests come back "negative."

What's causing your child's illness? It could be this or that or this other really awful thing. But don't worry. We'll run all these tests which will give us answers. Just be patient.

Huh, that's odd. All the tests came back negative. Gee, I really thought it was going to be this really awful thing. She has all the signs, but the tests are negative. Hmmm... you know... it could be this other really awful thing. We should run some tests. 

We've been riding this coaster for fifteen years. We find some balance for a while, until either Queen Teen shows some new sign of a degenerative disorder, or a doctor says she "might" have this thing, and there's a new test he'd like to run. And so we climb back onto the roller-coaster, strap in, and hope for answers.

We still don't have any answers. After years of hunting, we had made peace with that. Not knowing meant the future was still wide open. She could plateau, learn skills, gain strength, and eventually have a life of her own. Maybe she could live with a friend in an apartment with support and find a job she enjoys. She could fall in love. Not knowing what would happen meant we could pretend that everything would be fine for a while longer.

But now, we need to know.

Three weeks ago Queen Teen started gagging on food. It got so bad she couldn't eat anything solid or textured. She's been living on Ensure and yogurt. I took her to Stanford for an emergency gastroenterology appointment where they ran a bunch of tests. The good news is they didn't find anything structurally wrong, which means she's safe swallowing and won't aspirate on her food. The bad news is it means it's probably neurologic. There isn't a cure for that, or an easy answer. So now we're waiting for an MRI and neurology appointment, hopefully this week. In the mean time, we wait. And worry.

We knew her condition was degenerative, but without a real diagnosis it's impossible to predict what degenerative would look like. I figured it meant she would eventually be unable to walk or her hand tremors would get worse. We could manage those. But not be able to eat? How do you deal with that?

It's hard not to think the worst. This is my child, and I feel fucking helpless just watching her suffer while waiting for the phone to ring. No matter how busy I try to stay, or how much I practice mindfulness and "stay in the moment," the fear crawls up my spine like a hungry tarantula. This roller-coaster is a bitch.

I don't know what will happen now. Maybe her eating problem will disappear on its own. She could wake up tomorrow hungry and eat a scrambled eggs without any problem. The MRI might not show anything at all. This could be just a weird thing that will go away in a few weeks. It's happened before; her hand tremors were terrible for a while and just as suddenly, the tremors improved. Why? They still don't know.

But whatever happens next, this is a reminder of just how fragile Queen Teen really is.

 Strap yourselves in kiddies, it could be a long, bumpy ride. 

Thursday, March 15, 2012

Born to be Silly

Queen Teen has a hard time signing the letter Y. Her pinky won't stick up as it should.

Yesterday, she told a friend that she can't make a Y. Instead, she held up her fist with just the thumb sticking out. "This is how I do it." Then she grinned and said, "I guess I was born to be silly. See." She moved her fist in front of her face with the thumb pointed at her nose, the sign for "silly." 

She laughed so hard she collapsed on her bed.

Later, she told me that she was born to be silly "...just like Rick." 

"What about me?" I asked.

"You're silly sometimes, but not all the time like me and Rick."

Dang! I gotta up my silliness to compete with those two. Guess I need to play "What's sillier?" more often.

Queen Teen- What's sillier, a banana or a watermelon? 

Mom - A banana of course.

QT - Yes. That was an easy one. What's sillier, a shoe or a hat? 

Mom - Ummm.... a hat?

QT - No, a shoe. 

This is a game Rick and Queen Teen have been playing since she was 3 years old. They are now the masters of silliness. I tend to over-think the questions, which is also why I tend to fail the DMV written test on the first try. 

QT - What's sillier, an egg or cheese? 

Mom - An egg.

QT - No. Cheese is sillier. Gee Mama, you just don't get this game. 

There are subtleties to this game that baffle me. I'll watch Rick and Queen Teen play and have no idea why they're laughing. 

Rick - What's sillier, a gold fish or a frying pan?

QT - A frying pan.

Rick - Yes! (insert hysterical laughter from both)

Mom - Why is a frying pan sillier than a goldfish?

QT - It just is.

Rick - How many people have been hit by a gold fish?

Mom - So the game is based on whether or not people get hit by something?

Rick - No.

QT - It would be funny if a person got hit by a goldfish. 

Rick - Yeah. Maybe a goldfish is funnier?

QT - Yeah! (insert more hysterical laughter)

Mom - Okay, what's funnier? A pie or a cake?

QT - Pie.

Mom - Not cake?

QT - No.

Mom - Why?

Rick - Because there are lots of pies.

Mom - But getting hit with a cake is messier, so wouldn't it be sillier?

Rick - No. The thing itself has to be sillier.

QT - Pies are silly.Cake is not.

Mom - That doesn't make sense.

QT - (sighing sadly) Mama just doesn't get it.

Thursday, March 8, 2012

The Captain and Terena

Rick and I were asked to perform at a friend's wedding. The theme: 1920's circus. And what a circus it was! Beautiful costumes, talented dancers and singers, and the grand-finale: the wedding vows performed as if the bride and groom were in a 1920's silent film.

Also performing was... The Captain and Terena (pun intended)!

My hubby was an acrobat in a San Francisco circus when he was in his 20's, and is still a talented juggler and performer. So when our friends asked us to perform, he dusted off a classic knife throwing act he'd done back then and asked me to assist. Of course I said yes. Who wouldn't want their husband to throw knives at them?

We were asked in the fall, so we had plenty of time to practice for a March wedding. We should have had enough time, but Rick picked up two big work projects that lasted through January. And there were the holidays, a couple of illnesses ran through the house and my shoulder started acting up again, making physical activity painful. Suddenly it was the end of February and we'd just finished the script.

It's never a good idea to do a knife throwing act without practicing a lot, so I called a good friend to help. Isn't it great we have the kind of friends who will agree to assist with a knife throwing act? We ran the act with him and discovered the hand cuffs were too small, the rubber glove wouldn't pop unless blown up fully, and some of our jokes fell flat. But we also discovered new jokes and problem solved the technical issues. With the wedding only two days away, we were ready.

On the day of the wedding, we got a call from the bride. The theater they had rented for the event wouldn't allow us to throw knives. How the hell do you do a knife throwing act without throwing knives? I met with the theater manager and explained how the routine worked, but they were still insistent that we couldn't throw the knives. OK, no problem.

Seriously, it wasn't that big of deal because our knife throwing act is a gag; no actual knives are thrown at a person. I don't want to give it all away, but lets just say we give the victim... I mean volunteer from the audience... a major fear-factor. There's a little risk because we were using real knives, so practice is imperative. No one could be killed,  just nicked if we missed the balloon. Luckily for our volunteer, we didn't miss.

Our performance was a smash! We picked a random name from a list of people the bride thought would be good for the act, and he was perfect. He was nervous as hell, but funny and willing to do what we asked, even being handcuffed to a wooden target, blindfolded, and then asked to hold onto balloons Rick would pop with his knives. The audience was in on the gag and laughed loudly. At the end of the act, Rick and I traded places, so I got to "throw" the last knife at the rubber glove the volunteer held between his legs. Rick handed me his hat and jacket and then stripped off the rest of his suit, revealing a red sparkly dress and hose. He was adorable.

I loved performing with him, but I admit it was a little stressful too. Any time you perform with someone, you have to navigate each other's fears and insecurities: try doing that with your spouse. But standing on stage next to my husband while the audience laughed and cheered our performance was exhilarating.

Plus, it felt mighty fine wearing a slinky red dress and jacket and still be able to turn a few heads at age 45.  It helped that my mini-cleavage was smashed together by the dress. Hiding the wireless mic was a challenge, though.

Alas, I don't have any photos from the act yet, but when I get some from the bride, I'll share them here. You've got to see my hubby in his dress. 

Wednesday, March 7, 2012

Neil DeGrasse Tyson - The most astounding fact.

Neil DeGrasse Tyson is one of my muses; his intelligence and ideas are inspiring. This explains better than anything my intuitive feeling about the meaning of life and our connection to everything. Beautiful.

Monday, March 5, 2012

My definition of faith

All right, that's enough feeling sorry for myself.

I have to put a time limit on having the blues, because I can really let myself sink way down deep into the darkness. It's too comfortable in there, all safe and alone inside my depression. Eventually, I've got to drag myself back out into the brightness of the world, whether I want to or not. Besides, I've got a lot to take care of right now.

For starters, I obviously need to go back to my doctor and discuss upping my meds again. I may no longer be suicidal, but being bitter and nihilistic doesn't mean my depression is cured.

There are bills needing to be mailed, groceries to be bought, a play to write, and my book publishing company to be focused on. There is more ASL to learn and a girl named Queen Teen needing my attention. No more hiding in my room listening to Nine Inch Nails and Soundgarden. It's Spring in Mendo. The birds wake me up at 6:00 am when the first glimpse of sunlight brightens the eastern horizon. The yard is shaking off the winter frost and stretching back to life. Weeds are popping up thicker than the perennials. The worm bin is overflowing and my lettuce starts need room to grow. It's time to get my hands dirty outside.

I had an epiphany yesterday while washing the dishes in my cluttered kitchen. All of the sudden, the concept of faith popped into my head. From my earlier posts you've probably gathered that I'm not religious. I used to be "spiritual" but even that has vanished, leaving me feeling uninspired by much of anything (depression again?). So it seemed odd that I'd be pondering the meaning of faith like that. But in that time, I created my own definition of the word.

Faith: the belief that life is fine just as it is. 

I may not feel it right now, but I have faith that the people and things in my life are good. Life is fine.

This is different from blind faith, which is pretending that everything is fine even though you haven't changed the things that need changing.

Real faith in your life comes from the understanding that you've done everything you can to solve what needed solving and what remains is life. I can not change Queen Teen, but I have done everything possible to help her. Therefore, I must have faith that she is okay just the way she is.

My definition isn't all that original; it's a cross between Buddhist mindfulness and The 12 Steps of AA. But it helps me. Taking a deep breath and focusing on faith is a very hard thing for this Type A, depressed control nut with deep abandonment issues. It's going to take me a while to really absorb my newly discovered faith in life.

And probably a little more help from my shrink too. But it's a start.

Thursday, March 1, 2012

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.

Monday, February 27, 2012

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!

Sunday, February 26, 2012

Vote for Schats for America's best bakery.

Queen Teen loves chocolate muffins, and happily our local bakery makes the most scrumptious chocolate muffins of all time. The bakery is called Schats, and it is a contender in America's Best Bakery contest.

Here's a short video interviewing the owner, Zach Schats, in which he talks about managing his business. You can see how beautiful his baked goods are, especially the fresh bread. The delicious smell makes it  torturous for me sometimes when I go in there because he doesn't make Gluten Free goodies. He told me he doesn't because he can't guarantee there wouldn't be cross-contamination in his very busy kitchen. You have to respect a baker who really thought about how to bake gluten-free and then realized he couldn't,  rather than a baker who thinks baking a dish without wheat-flour automatically makes it gluten free.

Oh well, I can enjoy his baked goods by watching my daughter scarf her chocolate muffin, or fresh croissant, or a slice of cheese pizza.

So vote for this small, family owned (fifth generation, I believe) local business that makes Queen Teen so happy.

Friday, February 24, 2012

Dead Presidents

Queen Teen has been learning about presidents in school. This is what she told me.

"A long time ago, black kids and white kids couldn't go to the same school. They had to go to different schools. But George Washington made them go to the same school, and then they were friends."

She also told me she likes how there are faces of presidents on money.

Um, okay...

So here's the question: does she know what a president is? I think she gets the idea that a president is a leader, but does she understand that all those dead presidents she's been studying were actual living people who ruled our country a long time ago? Does she have a clue who our president is now, or where he lives, or what he does?

Her intervener at school has been struggling this whole school year with concepts around presidents, and I know she's as frustrated as I. Every time Queen Teen brings me her homework I groan.

Write one fact about President Harrison. 

Who? (okay, I admit I'm a little rusty on presidential history.)

I believe it's important for students to learn about our presidents and the decisions they made through history which impacted our country. History is important, and I wish Queen Teen could grasp that concept. But history to Queen Teen is what happened when she was little, or what happened when I was little. The past is amorphous and the long ago past meaningless. If that's the case, why spend so much time teaching her the name of a dead president?

Queen Teen can be as mysterious as history; you think you "get it", then you'll discover another gap in understanding. She'll rattle off random info about birds, or show you San Francisco on a map, but be unable to tell you anything about recycling, even though she's part of the recycling program at school. She won't remember what she did last week, but tell you in detail what happened the day she got the doll she named "Sara" ten years ago (when she was 6). Queen Teen is very smart, but getting information through the maze of deafness and blindness and mobility problems can make her seem dense. You can try pounding a subject into her brain for months, trying different techniques to help her understand, until you're both frustrated and finally give up. Then two months later, she'll spontaneously tell you all about what you were trying to teach her but swore she couldn't understand.

What should you teach her? And how?

What is the ultimate goal?

Everyone,  her teachers, therapists, aids and myself, struggle with those questions. And those questions have to be addressed within the framework of an educational program in high school with State standards that must be met. It can feel like an impossible task.

But as frustrated as we all get, it's only a third of how Queen Teen must feel. People keep shoving information at her and she's supposed to learn it, whether she "gets it" or not.

She hands me another sheet about another mysterious dead president. "I just don't get the point!" she yells.

"I know, Honey. Me either. But let's figure it out together."

Tuesday, February 21, 2012

And then she got sick, which wasn't so bad

Zooming from one task to another and another... So many things to remember all at once. I've taken multi-tasking to an art-form.

Remember the job, the kid, the house, the dog... Remember the groceries, bills, laundry, SSI forms and IHSS forms. Remember it's spring and it hasn't rained and the yard needs a drink and the worms have outgrown their bin and the weeds are choking the berries. Remember the kid on the coast has an IEP and the one up north needs a new walker and the one in town has an important meeting and the other one wants to do an art project and the littlest one likes to pull your hair. Remember Queen Teen has homework and she learned new signs and you need to learn them too. Remember she'll have more blood work soon so remember to plan how that will happen. Remember to eat.


Oh right, eat...

Remember to take vitamins and get rest. Remember all of this, or else.

Or else?

And then I got sick. Big surprise.

Last week I woke up nauseous and chilled with a low grade fever and body aches. I'm finally feeling better, but the fatigue won't go away. I drag myself through each day like I'm dragging a 2 ton stone by chains wrapped around my shoulders. I spent the majority of our four-day holiday weekend on the couch watching old movies.

Queen Teen was wonderful. Being out of school on a weekend is bad enough, but being out of school for four whole days with nothing to do and a sick mom is intolerable. The boredom was epic. But she mustered her strength and tried hard to entertain herself, and also take care of me a little. She asked if I was warm enough and then straightened out my blanket. When I asked if she'd like to watch a movie she said she'd watch whatever I wanted; we settled on a Tinker Bell marathon. She even tried cleaning the kitchen counters for me. The whining about boredom only started monday late morning, which is a new world record for her. It shows how much she's growing up; she's starting to think about other people and what she can do for them, instead of always focusing on her own needs. I'm proud of her.

We did manage to get out every day, driving to Starbucks for hot chocolate, going to the Farmer's Market,  and buying new clothes for a friend's baby. We also bought 2 new blueberry bushes for the birds (they'll probably eat them before we get a chance). Overall, not a bad weekend, just not exactly what either of us had planned.

Now here I sit, thinking about the last few weeks because I realize I haven't been posting very much. I'm amazed at how fast the time roars past before I have a moment to catch my breath, let alone stop and write. Teaching is stressful I've discovered. Added to my already stressful world it's a bit overwhelming. I've only been a teacher for 6 months, so I think in time I'll get the hang of it. Or not. There are teachers I work with who've been there 20 years and still feel overwhelmed by the needs of their students sometimes. Maybe this constant race of deadlines and lesson plans and assessments is just part of the game. Perhaps the key is to run it like a marathon, pacing yourself and taking care of your body and not worrying so much about how many miles you still have to go.

All I know is my body is screaming for a rest, so right now I can milk this illness for a few more hours on the couch with an old movie blaring Big Band music. Tomorrow I have to go back to work, but tonight, I can fall asleep on this big comfy couch to the flicker of a black and white "talky".

Sometimes being sick isn't so bad.

Tuesday, February 7, 2012

Spirit of Uganda

Queen Teen's class went to see "The Spirit of Uganda," at the Wells Fargo Center for the Arts in Santa Rosa last week, and I got to go with her. The Spirit of Uganda is a performance group made up of Ugandan children and young adults who have all lost parents to AIDS and war. They travel the globe representing the organization Empower Africa's Children. From their website:

Empower African Children is a non-profit organization inspired by success stories from more than 15 years of work with Africa's vulnerable children. Launched in 2006 by child advocate Alexis Hefley - whose work with Ugandan children has earned her international acclaim - Empower African Children's programs provide a fresh new approach that unlocks the potential of this generation through an innovative education. Its holistic approach to education provides tools for success in life, creating confident, skillful, visionary leaders.

Uganda has the highest number of orphans of any country in the world. The funds raised during the tour go to the orphanage and education program supported by Empower Africa's Children. The performance also shares the beauty and excitement of Ugandan music and dance, which I admit I knew almost nothing about.

The only things I knew about Uganda were Idi Amin,  AIDS, and the persecution of homosexuals. I didn't even know where exactly the country was located in Africa. Watching the performance made me curious, so I went on line and explored the history and culture of Uganda. With Lake Victoria as its southern border, Uganda is a part of the Nile river delta, rich with fish, game and plants. But it is a poor country, with more than 50% of the population under the age of 15 and the average lifespan for women age 52 (47 for men). These are the facts you'll get from reading Wikipedia, which could paint a mighty bleak image of Uganda, or any African country for that matter. What the Spirit of Uganda shows us is the heart and soul of the nation, not the hardship. The country is rich with resources and people. The humans who live there struggle, but also create beauty. Seeing the children dance while listening to the drums and songs helped me understand the strength of the people of Uganda, and made me want to visit there. Maybe I will someday.

As Queen Teen's Mobility teacher, it was my job to drive her and a friend to the theatre, and then arrange for them to go back stage to meet some of the performers. It's very hard for Queen Teen to see and understand what's happening on stage, even from the front row, so seeing a performer up close is really helpful.

We were guided back stage by the center's Education Program Director, who has been incredibly helpful every time Queen Teen has gone to see a show there. The performers, ages 11 through 20, were fabulous. Several dancers came out to meet Queen Teen and show her their costumes. They got really close so she could see what they were wearing, including the feathered belts around their waists and the bells on their ankles. And they talked directly to her, waited for her response, allowed her to touch their clothing and shake their hands. No one seemed nervous around a deaf-blind young woman in a wheel chair; they treated her like any other student wanting to meet performers before a show. The generosity of the young performers and the kindness they showed Queen Teen, without any hint of pity, impressed me greatly. (Here's a link from the Wells Fargo Center blog, and if you scroll to the bottom of that page, you'll see a picture of Queen Teen in her pink coat meeting the performers.)

And the show impressed everyone, including Queen Teen. She loved the drums and the dances, but got a little lost with the story telling (hard to understand when you can't hear the guy talking and both you and the person interpreting don't know enough ASL to help). Toward the end of the show, the storyteller invited us all to stand and dance with the performers. I jumped up and held out my hands to Queen Teen, who surprised me by standing, gripping my hands tightly, and dancing with the rest of the audience. She was grinning like a little kid and dancing as wild as her body would let her without falling. I kept a tight grip on her so she could lift her legs and flap her arms. When the dance was over, she said, "You thought I couldn't dance!" She was still grinning when the show ended, and she clapped as hard as her little hands could. 

If The Spirit of Uganda comes to your town, go see it.  You will be inspired and thoroughly entertained. Tell them Queen Teen sent you.

Tuesday, January 31, 2012

Welcome to the Middle Class

My job gave me another day to teach, so I picked up three new students and actual office hours. The extra hours also qualified me for health insurance. Yes! This is why I went to Grad School and gave up three years of my life (and my family's life). All I wanted was health insurance, a little retirement and a steady paycheck. I wanted to be middle class.

When that first paycheck arrived back in September, I was ecstatic. At last, I am officially middle class. My husband and I together earn enough to pay ALL our bills and have a little left over for savings. We can even afford to go out to dinner at a nice restaurant on occasion, the kind of restaurant with cloth napkins and a wine list as long as the menu. We can go to the movies now and not have to sneak in our own drinks. And we can afford a tank of gas and groceries on the same day.

It seems that all of my middle class dreams have come true.

For the majority of my life, I've lived on some kind of government assistance. I grew up on government cheese and dental care from the free clinic. My parents worked, but they didn't earn enough to support two kids and not need Food Stamps. When I left home, I became a starving student, working my way through college with the help of Student Aid and two jobs. Then I became a mom, and when my daughter was diagnosed with disabilities, she received the support of Social Security, MediCal, and California Children's Services. We received In Home Support Services for her daily care, and I myself qualified for MediCal. Even when I married Rick, who has always worked two or three jobs, we didn't earn enough for health insurance. We did buy a house in an expensive area, but we needed to live in that expensive area so Queen Teen could go to the excellent schools there. Just making the mortgage every month was a financial juggling act.

I started my life as a kid on welfare, eventually worked my way up to "working class," and after more hard work, have reached "middle class."

I have no idea what middle class means.

On the day I calculated my yearly salary and then started leaping around the living room, yelling, "Oh my god, I'm rich," my husband sat me down and explained that after taxes and paying the bills, I would be broke again.

"But it's more money than I've ever made in my life," I argued.

"I know. But we're no where near rich."

A few days later, I bought a Motley Fool book determined to learn what "middle class" meant. I wanted to know why the middle class people I knew complained about being broke? Please! I'll bet not one of them has had to chose between groceries or medicine. Not one has had their power turned off. Oh boo-hooh, they can't afford cable. Whatever! Try not being able to afford gasoline.

I'm still reading the book, and I realize I don't have a clue how to be middle class. What is a 401(k)? Retirement? Do people still believe they'll actually be able to stop working someday? How the hell do you buy stock, and why would anyone in their right mind want to? Wait, you mean budgeting is more than just tallying your expenses at the end of the month while deciding which bill you can skip? Who knew?

I now realize that every social class has its own set of problems. Sure, many of the middle class have no concept of what real poverty is. However, they don't get much help sending their kids to college or paying their electric bill when money is tight. There are no programs to help middle class families pay medical bills that insurance doesn't cover (but I still want to kick a person if they bitch about the price of portabella mushrooms ).

I picked up the health insurance forms from work yesterday and I'm trying to figure them out. I'm also asking myself if I can actually afford health insurance. At 45, can I afford not to? But it's a big chunk of change out of my check every month. There goes any hope of buying a newer car  next year.

Hah! There I go. Sounding like a middle class person.

Oh boo-hoo, you can't afford to buy a newer car? Well at least you have a car! A car that runs! That doesn't break down all the time. And at least you can afford to take it to the shop to keep it running.

Getting used to being middle class will take time.