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."

Making the Bed

My mom and I were drinking tea at my kitchen table when we heard Queen Teen yell, "Argh!"

My mom looked up at me, her eyebrows raised in concern. I kept sipping my tea.

"This is impossible!" Queen Teen yelled.

We heard what sounded like a heavy book being hurled against the wall, then another "Argh!" from Queen Teen.

My mom set her cup down and looked in the direction of Queen Teen's room.

I kept sipping my tea.

"How can I do this if my stupid ataxia won't go away?" Queen Teen shouted.

My mom looked back at me. "Is she okay?"

I nodded. "Yes. She's fine."

There was another loud bang, and then more shouting from Queen Teen. If she knew any swear words she'd be swearing like a sailor denied shore-leave.

"What is she doing?" my mom asked.

"Making her bed."

Queen Teen yelled, "The stupid blankets won't stay up!"

My mom raised her eyebrows. "Making her bed?"

"Yep." I kept sipping my tea.

"Sounds awfully loud. Does she need help?"

"Nope."

My mom looked back toward the bedroom where the sounds of Queen Teen struggling with her bed grew louder. "Are you sure?"

"Yep."

Queen Teen yelled, "Where did my pillow go?"

My mom glanced back at me then picked up her cup and quietly drank her tea, but her entire body stayed tense as she listened to the shouts and banging from Queen Teen.

After several more minutes of complaints, shouts and struggle, Queen Teen yelled, "Mom, I made my bed."

I took another sip of tea, set my cup down, and walked to her bedroom. My mom quickly followed.

Queen Teen stood beside her newly made bed. "See. I made my bed."

"Good job, honey," I said.

"Can you help me pull up the blanket. It's touching the floor."

"Sure." I reached under the comforter and pulled the blanket up flat on the bed, then smoothed it neatly. "Great job," I said as I gave Queen Teen a hug.

Queen Teen's face was flushed and she wiped her brow. "Whew. I need a drink."

As the three of us headed to the kitchen, my mom asked, "Is making the bed always so loud?"

"Yep," I said.

I'll Stand By You

For Queen Teen, and to all our children.

Gotcha!

On Saturday night, I was beaten up by a "gotcha," a particularly evil, knock your breath out, leave you weeping kind of "gotcha." Parents of Special Needs children know exactly what I'm talking about. A gotcha is when your emotions find a chink in your armor and you become incapable of defending yourself against the grief and rage that you normally keep locked up far away from your daily life.

I was eating a bowl of soup at my friend's house when their daughter came home with her group of friends, all 13-14 year old girls. They bounded up the stairs, giggling and joking, talking excitedly about Dickens Fair and other kids at school, texting one another while conversing (which I thought was particularly interesting since they were standing right next to each other), and appearing so happy it made me smile. When suddenly, I felt my heart constrict and my eyes fill with tears. They're the same age as Queen Teen.

Shit! I pushed the thought aside, focused on my soup and forced myself to keep eating, even though it was becoming impossible to swallow. When the girls took the dog out for a walk, my friend asked, "Are you alright?" That did it. I burst into a deep, wracking sob I couldn't control. She sat beside me and wrapped her arms around my shoulders. "Oh dear, what's wrong?"

Gasping for air, I said, "They're the same age as Queen Teen."

The girls were so happy with their friends, cell phones, and social life. They could sing and dance and perform at Dickens fair, were all healthy and beautiful, and I longed for that kind of joy for my daughter. She is so alone and cut-off from the simple pleasures of good friends and giggling conversation.

I managed to get myself together before the girls returned, but I was tearful the rest of the night. My friends were so kind and understanding and I am forever grateful to have them in my life. The next day I still felt wounded and although I had a lovely time at Dickens with my friends, the emotional bruises from that "gotcha" lingered. I wanted my daughter to share the fair with me, maybe even perform like I used to when she was an infant. She could be a part of that group of girls in a pretty costume, singing Christmas songs and joking about boys.

Three days later, I still catch myself fighting tears. It can take a while to recover after a "gotcha" attack. It seems that no matter how strong or capable I am, I have no immunity to those moments when I am reminded of all that my daughter, and we her parents, have lost.

The Dickens Fair

After school Saturday, I got to stay in San Francisco on Sunday to attend the Dickens Fair at the Cow Palace. I used to work at the Renaissance Faire and many of my friends from there now work at Dickens, so it was wonderful to see everyone. My dear friend Tama even made it that day so she and I spent several hours wandering the fair together after our other close friends had to go back to work as Can-Can dancers, barmaids, and the sister of Charles Dickens. Watching them perform made me wish I could stand beside them in a bright, Victorian dress and and join in the song, but life got too complicated and I live too far away to work at the faire anymore. Happily, I still have my friends who are as close to me as family. Whether I work faire or not, the bonds are strong.

Queen Teen came with me two years ago and enjoyed the beautiful costumes, but the noise was a bit much for her. This year I decided to go on my own and have a little mommy-break.

If you live anywhere near the San Francisco Bay Area, give yourself a treat and go to the Dickens Fair. $22.00 buys you five stages of shows, street performers straight out of A Christmas Carol, Fezziwig's beautiful ballroom to try your hand at waltzing, delicious food, music and wares you won't find anywhere else. You'll leave filled with the Christmas spirit.

And if you see a Dollymop, or a Sailor, tell them Terena said hi.

Christmas still makes Queen Teen smile

Queen Teen has been depressed for months; 75% of the time, she frowns, sighs, complains and argues. She smiles only 25% of the time. Some of this is typical teen-aged angst, but some is due to the impact her disabilities have on her life. I've been so worried about her.

Last week, my husband pulled her Christmas village stuff from the attic while I cleared off the large, "plant window" (it usually holds two glass shelves packed with plants). I found new, temporary homes for all my plants, and then scrubbed the dirt and mold from the glass panes and shelves. Queen Teen watched, but didn't seem all that excited about setting up her village.

"You're taller now, so you can use both of the shelves," I said.

She stood beside the window and measured her height. "I can see the top shelf."

"Yep. And you have a lot more stuff for your village. You'll need the room."

Together we lay cotton batting down for snow and arranged the buildings. I inserted the lights into the buildings then opened the box of village people and handed them to Queen Teen one by one. She smiled when she looked at them and talked about how silly it is to "ride a bicycle in the snow," or "jump rope in the snow." It took about an hour to arrange everything, and then I hung the string of LED star lights above the village so it looks like the aurora borealis. Usually, Queen Teen breaks into a Christmas song once the village is set up, but this time, she just smiled and said, "Pretty."

Had she outgrown her village, too?

Over the next few days I noticed that Queen Teen spent more time looking at her little village people. She talked to herself about what they were doing and how fun playing in the snow must be. When I hung the wreath that we made last year on the door, she grinned and said, "That's pretty." Then the neighbors across the street set up their mega-Christmas lights display (they must use 500 strands of lights!) and that really made Queen Teen excited. Every night we peek through the front window to look at the neighbors sparkling lights and their illuminated snow men and deer.

Two nights ago, Queen Teen took my hand and led me to the village. "It's fun to play in the snow," she said, then threw a cotton batting snow ball at me. She giggled loudly and I laughed, then tossed the "snow ball" back at her. We chatted about what you can do in the snow, like build a snow man, ice skate, go sledding, make an angel, and even jump rope, but that idea made Queen Teen giggle more. Her eyes sparkled as she talked to me. There's my happy girl again.

Last night, Queen Teen sang "Santa Claus is coming to town" in the bathtub, the first Christmas song of the year, and my heart sang with her. It's been too long since she's sung so loudly and cheerfully. She now talks about presents and what she might like, as well as what she might buy for others. Her eyes twinkle when she thinks about Christmas.

I wish Christmas lasted all year.

Turned down by the bank

Well, I figured it was a long shot. After four months, the bank finally made their decision about modifying our mortgage. No. It appears that we, A) technically don't make enough money to pay our mortgage, therefor they won't lower our payments (please explain that one), and B) despite the fact we "don't earn enough" have managed to make the mortgage payment every month, which means we don't qualify for assistance because we're not behind on our payments.

So if we stopped paying our mortgage, would they modify our loan?

I keep hearing so-called industry experts saying things like "talk to your bank before you get in trouble with your mortgage." Yeah, did that. Now what? They aren't interested in talking to anyone, and the programs that exist only help people with jobs, not people who are unemployed, or people who have those crazy, ballooning mortgages who can't afford the current payment. We were smart enough to stay clear of those, instead buying a house we could afford and locking in a good mortgage rate. It's always been a tight budget, but if we were working, we could afford our house. And we can't sell. The prevailing rent around here is the same as our mortgage, so why lose our investment and sell the house?

A friend said we should try again because banks are probably like Social Security: they always turn you down for benefits the first time. I supposed there's no harm in trying, but I won't hold my breath.

I'm really happy that she can now blow a whistle, but OUCH.

Queen Teen has a new, three inch long, shiny gold whistle that she keeps in her craft basket near the kitchen table. Right before dinner, she blows it, filling the kitchen with an ear-piercing, echoing, high-pitched tone that the neighbors four blocks away can surely hear.

"See what I can do?" she says, blowing again.

I wince. "That's great, honey."

Just this past summer she couldn't blow that whistle at all. Now she takes a deep breath and blows six strong, shrill blasts before setting down the whistle and saying, "I'm getting dizzy." She takes a short break, then blows the whistle some more.

It's therapeutic I think. All that blowing is good for her. I remember back when she was three and her therapist showed her how to blow cotton balls across the table with a straw. It was hard for Queen Teen to do, but after a couple of years, she started to win the "cotton ball races." She also practiced blowing bubbles and noise makers. Then we moved on to musical instruments, like recorders and wooden whistles. She could make thin, gaspy tweets, but rarely a full, strong sound.

Until now. After several months of practice with her new whistle, during which time she tried blowing it at different angles and directions, she finally found that sweet spot that emits the loudest, piercing sound. She has no idea how loud she is because she's hard of hearing. To her, the volume probably sounds perfect.

My ears are so happy for her.