Wednesday, December 31, 2008

Much Happiness to You All in This New Year!

In the New Year, may your right hand always be stretched out in friendship, but never in want.

~Traditional Irish toast

Wednesday, December 24, 2008


(image from Tracking Down Santa)

Several weeks ago, I tried to discover how Queen Teen feels about Santa. Does she still believe? She's 13, but emotionally she's about two or three years younger. At what age do children let go of Santa?

I casually asked if she was interested in Santa. Did she want to write to him? See him when he came to town?

Queen Teen folded her arms and glared at me. "I'm not ready to give up Santa Clause!"

Okay then. I got my answer. It will be another Santa Clause Christmas. And I'm actually happy about it.

I love playing Santa; finding the perfect gifts from the North Pole and spending too much money on stocking stuffers. But the best part is early Christmas morning when she first climbs out of bed and her whole face glows with that "Santa came!" grin. My heart feels as big and warm as her smile.

We saw Santa Clause two weeks ago at the Chamber of Commerce. We were out for our usual Saturday morning, it stopped raining, walk when we strolled past the building and out walked Santa. She gripped the wheelchair breaks and said, "Look!" Santa greeted us, and then we went inside his temporary shop where he sat on a big, golden throne decorated with Christmas ribbon and bells. Queen Teen sat beside him in her chair and started giggling shyly. After I told Santa she has a hard time hearing, he spoke in a kind, loud voice. "What would you like for Christmas?"

Queen Teen giggled again and buried her chin against her chest. Then she looked at me.

"Can you tell Santa what you want?" I asked.

"I want a ......." she whispered.

"Hmmm? Can you tell me again, please?" Santa prodded.

"I want a....." she whispered.

"Should I tell Santa?" I asked.

"No! I can do it." She sat up taller, looked up at Santa and said, "I want a Princess wand." Then she collapsed back into giggling and turned bright red.

Santa said he'd see what he could do, gave her a hug, and wished us a Merry Christmas.

Luckily, Rick found a Princess Wand at Big Lots, so we're covered.

Now it's 1:00 pm on Christmas Eve and Queen Teen is beside herself waiting for Santa. Seeing her cousins and Nana tonight is great, but she can't WAIT for Santa. We even baked fresh cookies for him (another bonus for mom and dad!).

And I can't wait to see her face when she wakes up tomorrow morning and finds that Santa Clause came once again.

Merry Christmas, Happy Hanukkah, and Happy Solstice to you all.

Wednesday, December 17, 2008

It's beginning to look a lot like Christmas...

Queen Teen is a crafty girl. She loves scrapbooking and drawing, collage, photography, and anything else she can make with a pair of scissors and a bottle of glue. She is in heaven this time of year because Christmas is just an excuse to make decorations and dress up the house.

First, we set up her village.

Every year, Grandpa Bear (my dad) gives her something new for her village, one year a house, another year a figurine. Last year he gave her a figure of a sled and horse (you can see it in the picture). She also inhereted two porcelain houses from her Great-Grandmother.

Queen Teen sings Christmas carols while playing with and rearranging the little people who live inside her magic village.

Even though her grandpa gives her something new every year, her village isn't too big because the heads and arms of the villagers tend to come off from all the playing. Queen Teen needs to hold and touch each item, so this village is for exploring, not just for looks.

After setting up her village, we decorated the tree.

And then later in the week, Queen Teen made a new wreath for our door.

Can you tell she likes butterflies?

She decorated our Christmas stockings with new paper stickers and drew pictures for her dad and Laurie Berkner as gifts.

Her craft-fever has slowed and since we've run out of wall space and room on the tree, she's decided to take a break from making things and start making room in her bedroom for all the new toys she's getting for Christmas. I will go out and buy more tape and glue, because by next week, she'll be itching to make something again.

Wednesday, December 3, 2008

The Hearing Aids are BACK

Queen Teen's hearing aids were finally repaired and for the last two weeks her teachers have been encouraging her to wear them. So far I've been lucky; the hearing aids are only at school. From what I hear, Queen Teen has been VERY unhappy about wearing them and I dread the coming battle when her teachers finally send them home.

I get email messages from Queen Teen's teachers on her progress. First day there was a lot of crying, but after 45 minutes she was distracted enough by the computer to stop crying and keep them in for a few hours. The next day, more crying, but by the third day crying had been replaced by profound sighs and rolling of eyes. She was adjusting to them quickly and her teachers were pleased.

Then came Thanksgiving break. One full week without her hearing aids.

The teachers sent them home, but I chickened out. And besides, Queen Teen was spending several days with her dad for Thanksgiving and I didn't want to send the hearing aids when he doesn't know how to use them, and what if they got lost somewhere and it would be terrible if they were broken again... I thought of at least ten reasons not to make her wear them over the holiday. But really, I dreaded the fight. The last time I made her wear them at home she cried hysterically for over an hour. Although it was true she was going to be gone and sending the hearing aids to her dad's wasn't a good idea, she could've worn them for the few days she was home with me.

School started again this week and her teachers insisted she wear her hearing aids in class. I got a note from her teacher this morning saying Queen Teen has worn them all morning and everyone can see a huge improvement in Queen Teen's abilities. She can actually hear what's going on. However, Queen Teen hasn't given up complaining about them now and then.

She told me they "itch," "bug me," and "don't do any good." "It don't help me hear no better. It just makes everything sound weird." I believe her, but the fact that they appear to help means she has to keep wearing them. We'll all keep an eye on her ears for signs of irritation, and the teacher of the hearing impaired is bringing some kind of ointment to help them feel more comfortable.

For now, she'll continue to wear them only at school. But in a few weeks it will be Winter break. Two weeks when Queen Teen will be home with me, not at her dad's, and that means we'll have plenty of time to battle over the hearing aids.


Thursday, November 20, 2008

Ideas to Fatten Up an Underweight Child

Queen Teen is tiny compared to other 13 year old girls. At 4'10" and 77 pounds she is just below the small end of "normal" on the growth charts. Her height and weight are proportional though, so she doesn't look too skinny. She's not starving for calories.In fact, she's healthy and eats enough food to fuel a linebacker. The problem is she burns so much energy just trying to maintain her balance and see where she's going, every calorie disappears and nothing remains to be converted into fat. Just breathing puts her food intake at a deficit.

Being so tiny is only a problem when she gets sick and stops eating, so to ward off the starvation that comes from catching the flue, I took her to see a Dietitian.

Every Nutritionist and Dietitian I've ever talked to has been grumpy. I guess I'd be too if people came to see me to discuss their diet and then promptly ignored everything I told them about what they should eat. Happily, the Dietitian Queen Teen and I talked to was cheerful and great with kids. She took out plenty of plastic models of food and let Queen Teen explore and chat about what she liked to eat. The woman had Queen Teen laughing and sharing ideas in less than ten minutes, which is a record these days. Most doctor's appointments begin with a surly mood the second we enter the building and it only gets worse from there. I guess props help, especially a piece of rubber Swiss cheese with holes you can look through like a spy glass.

The Dietitian and I discussed ways to help Queen Teen bulk up, including adding butter to EVERYTHING. Basically her diet is good, with plenty of fruits and vegetables, protein, and not too much junk. The Dietitian encouraged me to let Queen Teen eat anything she wanted, including junk food and ice cream, especially since Queen Teen doesn't have a big sweet-tooth. This is a kid who can use all those empty calories.

Here is a recipe for a milk shake which will add 600 extra calories to Queen Teen's diet:
Base: 1/2 cup whole milk.
2 T powdered milk (get the whole milk kind, not non-fat)
1/2 cup ice cream
1/4 cream
The base has 400 calories and 12 grams of protein.

Then add any kind of flavoring you wish. The more you add, the more calories.

2 T chocolate syrup, butterscotch syrup or any fruit syrup = 90+ calories
1/2 C mashed banana + 1/2 tsp. vanilla = 64 calories
2 T jam or jelly = 120 calories
3 T malt powder = 115 calories
1/2 C fruit or 1/4 C fruit juice = 40 calories

A couple of favorite combos are:

2 T chocolate syrup + 2 T peanut butter = 265 calories
2 T peanut butter = 1 T honey + 1/4 tsp vanilla = 240 calories

If you need to add more protein, use 1/2 pkg of Instant Breakfast (65 calories and 4
grams of protein) or 1/4 C egg substitute (70 calories and 6 grams of protein).

If I make Queen Teen a shake using the base (400 calories and 12 grams of protein) and add in the Chocolate and Peanut Butter favorite combo (265 calories and 9 grams of protein) plus some egg substitute for a bit more protein (70 calories and 6 grams of protein) I've created a shake with 735 calories and 27 grams of protein!

That should help add on a few pounds.

Other helpful suggestions were:
-Add powdered milk to yogurt, gravies, mashed potatoes, hot cereal and baked
-Add grated cheese to rice, vegetables, pasta and eggs.
-Eat veggies with lots of butter. Butter is Queen Teen's weight gaining pal.
Put it on everything!
-Add a dip with her snack, like peanut butter for her apple slices, or
cream cheese with her graham crackers. All those extra sauces and dips help
add more calories.
-Having ice cream every day is a good thing for an underweight child.

I plan to make milkshakes with Queen Teen every day after school to see if that helps her gain five pounds before we see the dietitian again in January. Ten pounds would be better. I just have to be careful not to dip into her chocolate sauce too much or I'll be the one gaining the weight (and this time of year, I don't need any more temptation. mmmmmm.... chocolate milkshakes. yummmmmm!).

Friday, November 14, 2008

Queen Teen Vs. The Big Purple Ball

Queen Teen is trying to capture her greatest nemesis, namely one big purple plastic ball. The ball is light and slippery, a little smaller than a soccor ball, and it loves nothing more than to roll away out of her grasp. But Queen Teen is determined. One day, she will tame that rotten ball and when she does the ball will quake in fear and relent to her commands.

The ball had bounced off the edge of her closet door when she was trying to put it away and rolled out of her bedroom into the living room.

"Darn ball!" she yells.

The breaks of her walker go "snap-snap" when she unlocks them and it rattles loudly as she races out of her bedroom after the ball. Balancing herself with one hand on the walker, she leans over to retrieve the ball. It gently rolls at the touch of her fingertips.

"Argh!" She leans a little further and the ball rolls even more. Straightening up quickly, she pushes the walker closer to the ball where it is wedged against a chair and scoops it up in her hand. "Got it." She sets the ball on the flat seat of her walker, where it instantly rolls off, bounces against the walker's front brace, and disappears into the kitchen.

"Oh no! Darn ball!" She races after it, her walker rattling like an old bicycle on a bumpy road.

I'm watching from my seat on the couch and debating whether to get up and help her. No, I decide. I'm going to watch what happens. How long will she fight this ball before she either captures it or asks for help?

The ball stops against the edge of the wall and Queen Teen scoops it up triumphantly. "Got ya!" She once again sets it on the flat seat of her walker and once again it rolls off and bounces away.

"Argh!!!!" She's sounding more frustrated. I want to offer assistance, tell her there's no way a round ball will stay on a flat, moving surface like her walker, but I keep silent. This battle is between Queen Teen and the big purple ball.

Her eyes narrow as the ball rolls away. It bounces against the living room chair and back into the hallway toward her room. She slowly walks forward, the walker's rattle less dangerous sounding, until she spots the ball in the dim hall. "There you are!"

She carefully moves her walker as close as she can to the ball then leans over to grab it. It bounces out of her hand, but pops back when it repels off the wall. She captures it between the wheel of her walker and her hand. Very slowly she places the ball on her walker where it sits still. "There!" But as soon as she moves her walker, the ball rolls off and heads back into the living room.

I really want to step in and help, but I know she has to figure this problem out herself. She's missing the cause and effect part. My telling her the ball can't stay balanced on the flat surface of the walker's seat won't SHOW her how impossible it is. Plus, she won't believe me; she is thirteen after all.

Queen Teen studies the ball which taunts her from where it has rolled, exactly where it had been when she began chasing it. Her lips purse and her eyes narrow again, then she slowly walks forward, one rattling, stealthy step at a time. I wonder what she is thinking as she creeps up on the purple ball; what plan has she formulating?

Standing above the ball, she announces, "I'm going to get you," then she kicks the ball with her foot.

The ball rolls away from her, but this time Queen Teen grins. She dashes after it and gives it another kick in the direction of her bedroom. It takes several attempts with a few missed kicks and the ball ricocheting in the wrong direction twice before it finally rolls into her bedroom. She slams the door behind it and shouts, "Got you!"

"That ball sure was giving you trouble," I say, still watching from the couch.

She walks over and plops down beside me. "Whew. That was hard." She sighs heavily as she wipes sweat from her forehead.

"But you did it. I knew you could!" I hug her quickly.

She grins. "Yeah. I did." She looks back at the closed door of her bedroom as if thinking, "You can't escape now, big purple ball."

I imagine the ball responding, "This time. But next time, you'll never catch me."

Saturday, November 8, 2008

Gravity is Most Definitely Still Working

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

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

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

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

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

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

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

Wednesday, November 5, 2008

How can I Help?

I watched Obama's acceptance speech last night, stunned and weeping with joy. This is an incredible moment in history and I am so thankful I'm here to see it. Think about it. When I was a baby, Martin Luther King Jr was murdered. 40 years later, a black man has been elected to be our president.

His message, though, is important for us to grasp. We can't rest on our laurels and wait for him to "fix things." With two wars, a global economy on the brink of collapse, and anti-America sentiment vocally high, we all need to step up and ask, How can I help? Everyone must work for the change we desired when we voted for Obama. Even people who voted for McCain did so because they believed he was the best person to lead us out of this darkness. No one person, even one president, can get our country back on track and prosperous. It takes a village.

What can you do? Here's an example...

'Good Samaritan' saves crying woman's foreclosed home

Tracy Orr sat in the back of the room and prepared to watch her foreclosed home go up for auction this past Saturday. That's when a pesky stranger sat down beside her and struck up a conversation.

Tracy Orr faced losing her home to foreclosure when Marilyn Mock, a stranger, stepped in to buy it.

"Are you here to buy a house?" Marilyn Mock said.

Orr couldn't hold it in. The tears flowed. She pointed to the auction brochure at a home that didn't have a picture. "That's my house," she said.

Within moments, the four-bedroom, two-bath home in Pottsboro, Texas, went up for sale. People up front began casting their bids. The home that Orr purchased in September 2004 was slipping away.

She stood and moved toward the crowd. Behind her, Mock got into the action.

"She didn't know I was doing it," Mock says. "I just kept asking her if [her home] was worth it, and she just kept crying. She probably thought I was crazy, 'Why does this woman keep asking me that?' "

Mock says she bought the home for about $30,000. That's when Mock did what most bidders at a foreclosure auction never do. Watch why a woman would buy back a stranger's home »

"She said, 'I did this for you. I'm doing this for you,' " Orr says. "When it was all done, I was just in shock."

"I thought maybe her and her husband do these types of things to buy them and turn them. She said, 'No, you just look like you needed a friend.' "

"All this happened within like 5 minutes. She never even asked me my name. She didn't ask me my financial situation. She had no idea what [the house] looked like. She just did it out of the graciousness of her heart, just a 'Good Samaritan,' " Orr says. "It's amazing."

Not many of us have the cash to buy someones home back, but there are things we can do every day to help our neighbors, even something as simple as dragging the garbage cans out to the curb for the little old lady with arthritis who lives across the street. Our own food cupboards hold less than last year, but if we each give just one thing to the food bank their shelves won't be empty. Actions small and large are what it will take to create the change Obama talked about.

Queen Teen is currently going through her clothes and toys to find the things she doesn't play with or wear anymore so that "another child can have something new." This is a person who doesn't have a clear understanding of who the president even is. All she knows is that she wants to help someone.

Regardless of who you voted for, lets keep the flame alive and help Obama bring about the change we all hunger for, one tiny step at a time.

Thursday, October 23, 2008

The Bill of Rights for Caregivers

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

A Caregiver's Bill of Rights

by Jo Horne

I have the right:

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, October 18, 2008

Depleted Mother Syndrome

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

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

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

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

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

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

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

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

Tuesday, October 7, 2008

Still Recovering from our Make A Wish Trip

"The Tightrope Walker" by Jean-Louis Forain

It's been two weeks since our Make A Wish adventure and Queen Teen is still smiling from the joy and excitement of meeting Laurie Berkner. She and I put the photos in the album Make A Wish gave her and we talked about the trip. She giggled as she looked at the pictures of Laurie, especially the one I took during the concert when Laurie had a "pig on her head."

I wasn't prepared for the emotional hurricane the trip created two days after our return, though. The exhaustion from traveling and caring for Queen Teen alone in a hotel for four days hit me hard, followed immediately by the blues so deep I couldn't stop crying. Make A Wish is a marvelous gift, but I suddenly realized I didn't want it.

For over ten years I've understood that Queen Teen's yet-to-be-named condition is degenerative, but I've avoided the idea that it could kill her. We focus on the here and now. The future is unknown because her condition is unknown. Some people say not knowing the outcome is harder, but for me, I like not knowing because that leaves the future open. Anything is possible, including Queen Teen's degeneration plateauing with no further damage to her cerebellum. Her neurologist explained that could happen and he's admitted that he really doesn't know what the degeneration will mean in the long run. Fine, then lets just deal with today and live with joy and determination. I refuse to mourn my child while she's standing right next to me.

Qualifying for Make A Wish shattered my healthy denial, especially when I saw the look on people's faces when I told them Queen Teen's wish was being granted. Everyone looked at me with a frozen, startled smile as I explained her Make A Wish dream. They wanted to be happy for us, but at the same time I could see the questions in their eyes. Is Queen Teen dying? I had no idea! Why didn't you tell me?

Now I'm having to tell myself the same thing I wanted to tell them. No, Queen Teen isn't dying, but she is at risk. We don't know what will happen. So please, can we just focus on the FUN part of this trip?

I wonder how many other parents have the same reaction I did about Make A Wish? The gift is incredible and life-affirming, while at the same time frightening. Perhaps Make A Wish should include that in the info packets they give to the families before the trip. Now don't be surprised if you feel overwhelming grief at the same time you are excited for your child.

I'm feeling more centered and calmer now, but it took several days and a call to my therapist. I see him whenever I feel like I've lost my balance on this tightrope called raising a special needs child. Sometimes we all need someone to steady us so we can move forward, one cautious step at a time.

Thursday, September 25, 2008

Our Make A Wish Adventure

Anyone who has ever walked the streets of New York City can attest to this. New York City, at least Manhattan's South Central Park District (5th Ave, Columbus Circle, Ave of the Americas, Broadway...) where my daughter and I stayed during her Make A Wish Adventure IS an example of Chaos Theory in action. The streets are throbbing with constant movement, noise, and activity, flowing with concentrated propulsion. Somehow, this sea of people manages to function, even move from place to place without crashing into one another. It may look like pandemonium, but there actually is a logical pattern. There's a current, and when you're walking the streets you need to plunge in and ride it. If you hesitate, you'll get hit by a cab.

My daughter and I spent two days and three nights in Manhattan to see Laurie Berkner in concert at the Lincoln Center for the Performing Arts. The concert was amazing! Laurie Berkner gave a show even a grown up would enjoy. And the toddlers were screaming like she was Paul McCartney. "Laurie! Laurie! I love you, Laurie!" They were bashing in the aisles, moshing to the groove of "Laurie's got a pig on her head" and singing along at the top of their little baby lungs. My daughter laughed and grinned through the whole concert. I have truly never seen her so happy, not even when she got Barbie's Dream House for Christmas three years ago.

After the concert we went back stage to meet Laurie and the band. She is wonderful! She got really close to Queen Teen as if intuitively knowing Queen Teen needed that connection to understand what Laurie was saying. And then Queen Teen surprised me. She was wearing a bracelet that she had insisted on bringing to the concert. I thought it was a fashion thing, but it turned out she wanted to give it to Laurie. Her whole body shook as she took it off her wrist and thrust it at Laurie. "This is for you." Laurie took it gently and put it on. "Thank you. It matches my dress. I love it." Then she hugged Queen Teen. Queen Teen hugged her back, her entire being glowing with joy. I wiped tears from my eyes and tried not to completely lose it.

Laurie spent several minutes with us before she had to join the reception in the main room, but she invited us to the party. We stayed a few minutes, eating chocolate covered strawberries, but it was packed with people and Queen Teen was exhausted, so we hopped back in the limo (yes, we got to ride in a limo to the concert. We rode in five limos during the trip to be exact).

The next day was our free day when we travelled the streets of Manhattan. Surprisingly, the stream of people stepped aside to let us pass when they saw us coming. The whole current adapted to our presence, and once when we got stuck on the edge of curb a man in a business suit stopped and helped us, then quickly jumped back into the flow and was gone. Queen Teen has a problem with loud noises, and the streets of Manhattan are nothing but one giant noise, but she hung in there, really hungry to explore. We hopped from store to store for breaks from the chaos, and I made sure to navigate back to our hotel so she could get her bearings again. I was really proud of her.

We flew home on Tuesday and met our limo driver, Duke, who drove us all the way back home. As I sat in the back of the limo with Queen Teen asleep beside me, watching the tiny LCD lights in the ceiling of the car as we sped through the blackness of the night, I felt perfectly calm and safe. I knew Duke would get us home safely. I fell asleep.

Queen Teen went back to school today, weary, but excited and still grinning after her trip. She can't believe she actually MET Laurie Berkner.

Today, I'm playing catch up. A thousand emails and phone calls to make. Stacks of bills and dirty laundry. I don't mind. My daughter is happy, and I'm still tingling from Manhattan and the joy on my child's face.

Tuesday, September 16, 2008

"Make A Wish" and Laurie Berkner

This Saturday, Queen Teen and I are flying to New York City to see Queen Teen's favorite singer, Laurie Berkner, in concert at Lincoln Center for the Arts, all thanks to the Make A Wish Foundation. Queen Teen was referred to the program four months ago by one of the social workers we work with. At the time Queen Teen had no idea what she wanted, but the two volunteers who came to interview her discovered that she LOVES Laurie Berkner. When they asked her if she'd like to meet Laurie Berkner, Queen Teen giggled and smiled so big her pony-tales practically pointed straight up. That settled it! We would meet Laurie Berkner.

The team warned us that celebrity wishes can take a year or longer to arrange, but Laurie Berkner is not your average celebrity. She has been more than accommodating and seems really eager to help make Queen Teen's dream come true TODAY. We've been invited back stage to meet Laurie after the concert and she asked what Queen Teen's favorite song is so that they can sing it together.

While Queen Teen was recovering from surgery last year, I contacted Laurie Berkner and requested a note from her to help cheer Queen Teen while she lounged around in two big casts. Laurie sent a postcard and a hand written note within the week.

Queen Teen says that listening to Laurie cheers her up. Even though Queen Teen is a teenager now, she still loves listening to the silly, children's songs of Laurie. I think partially it's because Queen Teen is losing her hearing, but since she knows every one of Laurie's songs by heart, she can still enjoy the music no matter how muffled it may become.

Make A Wish is sending a car to our home and driving us to the airport, paying for all the travel and accommodations, helping us navigate Manhattan, and providing meals and "incidentals." They want us to have fun without stress or worry about how much something costs. For that, I am deeply grateful. And I am grateful to the hundreds of volunteers and people who donate to the program who help make these dreams come true for kids who really have a rough road to travel.

When we found out her wish was granted, Queen Teen asked, "Why are they sending me to New York to meet Laurie?" She watched me very carefully and I knew I had to say something that would help her understand what the program is about without making her think people were feeling sorry for her. I was really stumped for a bit. I mean, what do I say? Um gee... because you have a degenerative disorder and who knows what the future will bring?

After a moment, I said, "They're giving you this chance to meet Laurie because the people know how hard things can be for you sometimes and they want you to have something that will make you super happy. You've been through a lot and have worked really hard and this is a present so you can just do something fun and not have to worry about anything."

She nodded while she thought about what I said. "Okay." Then she smiled and we started planning for the trip. I think I said the right thing because now all she talks about is WHAT we're going to do and not WHY we're doing it.

"Make A Wish" isn't about pity, it's about joy; a way to try and balance out some of the anger and frustration, pain and discomfort, of coping with a chronic illness. It's about giving a family time together doing something fun and care free.

To tell the truth, I'm really excited to meet Laurie Berkner too! It's Laurie Berkner!!!! She's awesome! Really! Check out her website and play some of her songs. Not just silly preschool stuff, grown ups can enjoy them too.

"I've got a song in my tummy and it wants to come out, I've got a song in my tummy..."

So okay, maybe that one's silly, but what's wrong with a little silly?

"I've got a song in my tummy and it wants to come out. And when it does, I'm gonna sing and shout... La La, La La, La La..."

Thursday, September 11, 2008

How it Feels to be a Traveler

Monday was my first day of class in the Orientation and Mobility Program at San Francisco State University and my first opportunity to try walking the hall as a "traveler;" wearing a blind fold while being led by a "guide."

Before I was a traveler, I was a guide, something very natural to me. My class partner put on her own blindfold and then gripped my arm as I led her up and down the hallway. I think I may have talked too much, though.

"Here we go... we're passing a garbage can on our right... here comes a large group of people, oh good they're stepping aside to let us pass... we're now passing a chair propping open a door... another group is coming, this time we'll move aside for them... okay they're gone, lets move on... we're turning left to walk up another hallway..."

The banter felt so natural because this is what I do with Queen Teen as we travel together. Even if she's in her wheelchair, I talk about the trees and point out the squirrels and ask if she sees the flowers, and take a look at this leaf... filling in the gaps in her vision. Since she isn't completely blind, she'll often point things out to me as well. My classmate said she felt very comfortable walking with me, but I'll hear back from our instructor if I was talking too much.

Then it was my turn to be blindfolded. At first I felt dizzy and had to force myself to breath through it and fight panic. After about a minute the dizziness went away, except every time we turned I would get momentarily dizzy again. With the blind fold on, I didn't talk. My guide was also quiet, only giving me verbal cues when we were making a turn or avoiding and obstacle. I tried to hear what was going on around me but the echos in the hallway from the voices of other students were so loud I couldn't navigate by sound. I was truly blind, visually and auditorally, and had to completely trust my partner to keep me safe.

I have classes every Monday night, and since I get out so late I'm staying with friends, which means I get one full night of sleep a week. An extra bonus! Queen Teen helped Rick by doing an excellent job getting ready for school without me. Rather than whining that I was gone and punishing both Rick and I for my absence, she got her own school things organized and cheerfully greeted me when I met the bus on Tuesday. This is a big change from even this summer, when any time I left for any reason I was given the "grumpy-teen-I-hate-the-world-how-dare-you-leave-me" treatment. Queen Teen is definitely growing up.

Thursday, September 4, 2008

At 8:30 all the Moms come out to Walk

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

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

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

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

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

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

Tuesday, September 2, 2008

Root and Sprout

Last week, I posted about the odd mix of guilt and joy I feel every time the first day of school arrives. While pondering that fact, I stumbled upon Root and Sprout, an on-line parenting magazine and saw that their deadline for the September issue was the end of the week. So I decided to go for it. I frantically wrote a 500 word essay, sent it in the following day, and it was accepted! Called "It's Back to School Time. Why am I so Happy?" it is about the glee and guilt we parents feel when we toss our children out of the car on their butts in the school parking lot lovingly send our little darlings to school. Look for it in the Grow Through Laughter section of the zine.

You'll also find articles about marriage (Dating Your Spouse: How to Reclaim Your Marriage, by Teresa Hirst), volunteering at your child's school (No Time to Volunteer? by John Boynton) and being a special needs student (Dear Mom and Dad: What It’s Like to Be A Child with Special Needs, by Kirk Martin).

Saturday, August 30, 2008

A Gift from My Teen

Yesterday was my writing group and with my hubby out of town I wasn't sure I could go. Then I decided to take Queen Teen with me, loading up coloring books and crayons and telling her "it will be fun."

She scowled at me but got her shoes on and then said, "Maybe it will be fun."

Maybe is as good as a yes in Queen Teen talk.

We met the other's at the restaurant where Queen Teen smiled and responded to questions about school, then colored in her new Mermaid book until the food came. I talked to my friends and discussed writing and books for two hours while helping Queen Teen find a color, turn a page, hold her lemonade, and eat her meal. Rather than declaring she was bored after twenty minutes as I expected, Queen Teen remained cheerful and friendly. "This is fun," she said while twirling the little paper umbrellas that came with her lemonade.

Simply by sitting beside me in a restaurant with my writing-friends and coloring, she gave me a present: time to be creative. Her actions showed me she understands how much writing means to me. Often when I pick her up from school my lap top will be in the car and she'll see it and say, "You must have been working." Working equals writing.

It's funny... sometimes Queen Teen can be obstinate and moody, making me want to kick the wall in frustration. Just as often though, she can be compassionate and kind. We have fun together, laughing at jokes we make up or discussing why our dog Bourre snores. Her sense of humor is quick, and so is her temper.

There was a time not so long ago when she would've fought me about leaving the house for dinner at a restaurant because she didn't like having her routine disturbed. Now she's eager to try new things and see new places. Her world is opening up, little by little, and she's starting to understand she actually isn't the center of it.

Thank you Queen Teen for letting me be your Mommy AND a writer.

Thursday, August 28, 2008

Day Number Four of Jr. High

Today is Thursday, day number four of Jr. High, and so far, so... interesting.

First, WHY does school start at 7:30 am! Come on! Hasn't anyone read the study that showed Teenagers are sleep deprived and any classes before 10:00 am are a complete waste of time? Plus, I am NOT a morning person, so dragging myself out of bed before 6:00 am and slapping a pleasant smile on my face while getting my daughter ready for school is against my religion!

Second, Queen Teen loves her new teacher, Gayle, but isn't too pleased that she's supposed to go from class to class for different subjects with different teachers. To her, it is a stupid idea and a waste of her time. She wants her equipment (Intellikeys, CCTV, and computer) in ONE room, all set up at HER station, the way she WANTS, without all this moving around. I have to say I kind of agree with her, especially since I believe the way Jr High is run in the USA is diametrically opposed to the way children should be educated (don't get me started!). However, this is the way Jr High IS and we want Queen Teen to learn how to live in the world and cope with change. Therefore, she is required to spend three periods in other classrooms with the remaining four in the Resource room with her beloved Gayle. In time I believe Queen Teen will get the hang of it. If not, we'll adjust as needed.

Third, Queen Teen has decided there's no way in hell she's wearing her hearing aids, she don't care how much they're supposed to help her or what kind of bribes we offer, forget it, we ain't getting those things in her ears EVER AGAIN. This could be a problem.

Fourth, lucky for her, the hearing aids broke and are now on their way back to the audiologist for repair.

Fifth, at the last minute her school found a full-time aid for her, thank goodness! I really didn't want to have to start that battle.

Sixth, Queen Teen has to use her wheelchair more than she would like because the ground of her new school is so bumpy and uneven it isn't safe for her to use her walker much. This makes her very angry.

Seventh, she has a huge smile on her face when I pick her up from school and she tells me she loves it. Whew!

Monday, August 25, 2008

First Day of Jr. High

This morning I drove my daughter to Jr. High for her very first day, and although there was a part of me that felt sad and nervous, I also had to restrain myself from peeling out of the parking lot while laughing hysterically, shouting "See ya!" Yahoo, another summer licked! And yes I know how precious the time I spend with Queen Teen is and how every summer down is just one more bit of childhood gone, but by the end of August she and I are both so tired of each other we can hardly hide it anymore. Not one more game of Uno, please! Time for other people to entertain the Queen.

For the first time in her life, this transition didn't seem to frighten her. I was expecting tears and sleepless nights, but instead she talked about school like it was the greatest place on Earth and she couldn't wait to go. We picked out her clothes the night before and she washed her walker, wheels to handles, chatting happily about what school will be like. She had a good sleep, got up on time, ate a good breakfast, got dressed and cheerfully got into the van for me to drive her to school.

Once there she walked to class using her walker and I followed with her wheelchair. She knew exactly where to go, thanks to Laura. Laura met us at the classroom and we all went in together to greet her new teacher, whom Queen Teen had met before. Queen Teen had a grin on her face the whole time, so I gave her a quick hug and left, feeling a tiny tug on my heart as I walked away. I looked around at the other students as they sleepily sauntered to their first class, seeing how grown up and tall they are. My daughter looks so tiny in comparison, but she's just as grown up and ready for school as they.

The next few weeks will be bumpy, I'm sure. Queen Teen has to learn how to navigate quickly from one class to the next in different buildings across uneven ground on the campus. Half of her classes are in the Resource room where she will work on Science, Math, Sign Language and other skills, with Language Arts, PE, and Social Studies in other classrooms. It's a good balance of inclusion and support, I think, and we can adjust her schedule as need be.

As for me, I have the next two weeks to get organized and catch up on Medusa's Muse work before I start Graduate School. This is going to a very busy Fall!

Wednesday, August 20, 2008

When Hearing-Aids hurt

In preparation for school beginning next week, I cleaned up my daughter's hearing-aids, checked to make sure the batteries were strong, then brought them to where my daughter was sitting with her dad eating a Popsicle.

"Time to wear your hearing-aids." I said. "You need to get used to them again for school."

She'd had most of the summer off from wearing her hearing-aids because she'd outgrown her ear-molds and then it took time to get new ones made and a follow up appointment to have the hearing-aids adjusted. We'd switched to Stanford Audiology for her hearing needs, which has an excellent pediatric program. The audiologist is very skilled at working with children and picking up on their subtle clues to determine what the child can and cannot hear. Queen Teen warmed up to her immediately on the first visit. We picked up Queen Teen's new aids on the third visit. The doctor adjusted the volume after discovering Queen Teen could tolerate a higher threshold of sound than anyone thought. The moment the doctor put the new aids into Queen Teen's ears, before even turning them on, Queen Teen burst into tears.

"I don't understand what I even have to wear them! It doesn't make any sense."

The tears kept falling while the doctor worked to set the aids properly, visibly shaken by Queen Teen's tears. I kept wiping Queen Teen's nose and eyes while holding her close and encouraged the doctor to just keep going. I know my daughter; she won't stop crying until the hearing aids are out.

Back home, I put the aids away, thinking I would give her a bit of a break to get used to the idea again. But every time we talked about it, she'd just start crying again.

And then my husband had surgery, and the dog got mauled, and then Queen Teen had dental surgery, all within one week of each other, so the hearing aids were ignored as I dealt with the immediate crisis my family was in.

One week before school, I put the hearing aids into Queen Teen's ears, telling her she would wear them for an hour to "get used to them again." She wrapped her arms around herself and burst into tears. I decided to ignore the tears, believing if I was tough she'd stop being hysterical and put up with the aids for one hour. Thirty minutes later, she was still weeping. I tried consoling her, talking to her, joking with her. I tried putting in a movie to distract her, but that only seemed to make things worse.

"They don't sound right," she said between sobs. The she started crying so hard she couldn't breath.

I took out her hearing-aids. She kept crying. She said the aids didn't help her and she didn't understand why she had to wear them. Nothing I said, not reasoning, begging, pleading, or logic helped her understand WHY she had to wear her hearing aids. I explained she wasn't the only child in the world who wore hearing aids but she said she didn't believe me.

When she calmed down after I left the room, I overheard her talking to herself. "I don't know why. I just don't know why. They don't help me. So why do I have to wear them."

This was more than being stubborn about wearing her hearing-aids. She cried like her heart was broken, like she was the ONLY person in the ENTIRE WORLD who had ataxia and couldn't see very well and had to wear hearing aids. She kept repeating over and over that she didn't understand and I realized it wasn't just about the hearing-aids, it was about everything. Thirteen is hard enough without trying to cope with multiple disabilities.

After talking with her elementary school teacher, I decided to let school work on the hearing aids issue. Since she wears them at school, perhaps it will make more sense to her to wear them then. Home is her retreat, her respit from braille and sign language and PT. Plus, children always cry harder when their mom's are in the room, as if they're saying, "See, Mom. My heart broke. Can you fix it?"

No, my darling girl, I can't. But maybe your teacher can.

Friday, August 15, 2008

"She's 13"

Yesterday I took Queen Teen to Mervyn's for a little back-to-school shopping. At first she was cheerful and silly, giggling at the stuffed puppies and feeling proud of herself every time she navigated around an obstacle in the aisles. And then, without warning or provocation, her face set in a determined frown and her eyes focused downward. Nothing I did or said made any difference.

"Look at this cute shirt! It's even red, your favorite. Do you like it?"

"I don't know," Queen Teen responded without looking at the shirt.

I held it under her nose. "It feels soft. Would you like to wear it to school?"

"I don't know."

"Maybe I should just buy you uniforms again. You looked cute in your school uniform."

"I don't know."

"Really? You don't know. Then I SHOULD buy a uniform because then you won't have to decide what to wear at all. Yep, I think a blue uniform would be good."

She scowled at me. Well, at least she made eye contact for a moment.

We managed to buy a pair of pants and two shirts, then went to the register to pay. Queen Teen barely cracked a smile when one of her friends from elementary school stopped to say hi. They're both going to the same Jr High this year and she was shopping for school clothes with her mom too.

"Did you have fun this summer?" Queen Teen's friend asked.

Queen Teen looked at her for a moment then stared at her feet again. She shrugged.

I said, "She's just getting over a cold, so she may be feeling tired."

"I had a cold too. No fun," her friend replied. Then she dashed off to catch up with her mom. My daughter didn't notice she was gone.

Great! She has maybe two real friends and she ignores them when they say hello. Wonderful! She'll be sitting by herself every lunch for sure!

The woman at the register asked me, "Is she feeling okay?"

I shrugged. "Who knows. She's 13."

"Ah.... I see." The woman gave me a knowing smiled and nodded. "I know all about 13."

Every time I tell someone that I get the same response; that completely understanding, 13 is rough you poor thing hang in there it will get better in a few years I'm so glad it's not me, smile. Even people who don't have children give me that look because we ALL know what 13 is like: morose, temperamental, and bitter. Saying "she's 13" is like saying "she has a head ache," or "she has a tummy ache." Of course, we all say, nodding with a sympathetic smile. She'll get over it in maybe... three or five years. Poor dear.

When I told my hubby what happened he asked, "What set her off?"

"She's just 13."

He sighed. "How long does that go on?"

Thursday, August 7, 2008

Summertime is Not for Wimps

Ah yes... it's that wonderful time of year again. Summer. When all the little children are home with their parents spending quality time with each other while trying not to drive one another crazy. Or maybe the children ARE trying to drive their parents nuts? I know mine is. Being 13, bored, and stuck in the house because you can't stand the heat means you feel entitled to WHINE non-stop all day long. "I'm bored." "There's nothing to do." "I don't like that movie!" "I don't know what to do." "I hate that game!" On and on it goes while I try hard to focus on the positive (we're spending more time together. That must be good, right?) and think of new, creative tasks to keep her busy.

To be fair, this summer has been especially difficult. Not as bad as last year when she had surgery, but definitely hard.

First, her step-dad had bariatric surgery and is now home recovering. Things are going well and he's getting stronger by the minute, but it meant he and I were away for several days while she stayed home with her grandparents. She was happy to see her grandparents, who she adores, but not so happy with both parents disappearing to San Francisco for four days. Then, when we got home, her dad went to bed and I rushed around trying to get everything set up for him. Queen Teen and I took a long walk to our local cafe the following day, which helped. However, I've been so busy taking care of Rick she's had to play by herself a lot. She tries, but when you're 13 and don't know if you still like your doll house or not, playing by yourself becomes a challenge.

At the same time, I've been taking care of the family dog who was attacked at the kennel by another dog. One of those weird, completely unprovoked accidents. Our dog, Bourre, was seriously injured and had to be rushed to the vet for surgery on both front legs and paws. She then spent four days recovering there. I brought Bourre home on tuesday and happily she's doing great. What a relief. Queen Teen was very worried about both the dog and her dad. She kept a thoughtful distance from both, waiting to see if they were alright. Now that Rick can get up and is moving around more, she smiles and hugs him and they joke and tease each other in the morning again. As for Bourre, Queen Teen talks to her with a gentle voice and tries very hard not to bump the dog with her walker.

Then yesterday Queen Teen had dental surgery. Finally! She broke her front tooth back in February and it took this long to get into the surgeon. Plus, her adult teeth were coming in around her baby teeth rather than pushing the baby teeth out, so seven baby teeth had to be pulled. The dental surgery center is in Windsor and is FANTASTIC. These people are truly dedicated to helping children and providing dental care, despite Medi-Cal cuts and other insurance problems. If I ever win the lottery, I'm writing them a big, fat check.

The surgery went well and she recovered quickly, but woke up this morning with a bad cold. Sigh. Luckily she isn't in pain, so today she's lounging in bed watching movies while blowing her nose every ten minutes.

Two-and-a-half more weeks of summer, and then she and I start school on the same day; she Jr. High and me San Francisco State Graduate School. Anyone have any good ideas to keep a teen-ager busy?

Sunday, July 27, 2008


We finally got the authorization from CCS to begin Physical Therapy, although only six visits, which means PT will be more of a weekly consultation than real, in depth therapy. I get the feeling CCS believes PT is a waste of time. Fine. I'll take what they'll give us. Besides, Queen Teen needs daily exercise to make any difference and she's doing that on her own.

Her therapist is the same person who worked with her after her surgery last year and he's very knowledgeable. Queen Teen remembered him and eagerly showed him what she can do. "See," she said with a grin on her face and her arms held out wide, "I can stand up without holding on to anything."

"Very good," he replied while staring at her knees. He took some measurements of the curve of her each: 18 degrees in one and 5 degrees in the other. Queen Teen sighed. She hates being examined. With as many appointments as she's had over the years I don't blame her.

I told him about the exercises she and I have been doing and he said they were good, then he added rising up on her toes. He also encouraged swimming. "The key is to make it fun, or she'll stop doing it." He smiled. "But if she's already doing them on her own, I don't think you'll have to worry about that."

The PT agreed with the recommendation of the PT at the clinic that exercise could save her knees and that we shouldn't put her back in braces. The curve probably won't go away but if she keeps building her muscles and stretching the ligaments, it shouldn't get any worse. The last of my fears vanished. We have to give this a try.

Today she cautiously walked across the kitchen, swaying from side to side, arms flung wide for balance. I fought the urge to grab her to protect her from falling. Instead I gripped the counter and said, "Yay! That's so great!"

She reached the kitchen table and turned to look at me, beaming with pride. "See. I can do it. I can be stronger! I didn't fall down." Then she carefully cruised back to her walker by the kitchen door, her bare feet loudly slapping the linoleum.

Success! She felt the pride of hard work and how she can grow stronger, something that will stay with her as she tackles new challenges in her life. Everything is so hard for her, everything must feel so out of reach, but in that little walk from kitchen door to table, a distance of ten feet, she experienced the sensation of triumph.

If we try so hard to protect our children from pain and misfortune, they never learn how to pick themselves up from the floor and never understand that they can heal. If I put braces back on Queen Teen's legs, she will never know how it feels to take control of her own body and her own life. Without success, we diminish. Why bother? Nothing will work. No matter what I do, I'll never get any better.

Queen Teen is beginning to understand just how capable and strong she actually is.

Wednesday, July 23, 2008

A Visit to the Den of Chaos

My daughter,Queen Teen, used to be afraid to leave the house. Every trip to the grocery store left her trembling and sometimes nauseous. As she got older,however, her fear diminished until we could go for long walks without panic. She began to hate sitting around the house and wanted to go on trips. We took it slow, first with day trips only a couple of hours from home, then overnight. So now we're up to spending a few days away from home visiting friends. Our first stop: The Den of Chaos.

Maybe taking Queen Teen to a house affectionately known as the Den of Chaos sounds cruel, and I admit I was a bit nervous. Four children live there, aged ten and under, all rambunctious, loud, and playful. How was my mostly blind-deaf, wobbly, moody teen-aged daughter going to handle that much confusion and NOISE?

The first day everyone was a little shy, so the children mostly watched Sponge Bob while staring at each other. Boo-bug warmed up quickest and brought Queen Teen several treasures, including a stuffed bear and a Cinderella dress. Four year old Captain Adventure was fascinated with Queen Teen's walker and had to be reminded several times to leave it alone. Queen Teen and Eldest had met before but it took them a while to figure out how to play. Danger Mouse quietly watched Queen Teen and figured out that she needed to stand very close to Queen Teen to be heard. By day two, all the children were playing and coloring and chatting while exploring the house and showing off for each other. Queen Teen even conquered her fear and climbed the steep stairs to see their bedrooms and play. Dinners were hectic, bedtimes chaotic, the noise unending, and the laughter constant. Queen Teen took it all in with a regal smile. By day three when we had to leave, Queen Teen felt like a regular Denizen and declared, "This place is fun!" Eldest said that Queen Teen was "cool."

After a visit to the Den of Chaos, I think she's ready for an amusement park.

Wednesday, July 16, 2008

Time to Do My Exercises

My daughter has accepted the challenge to save her knees and in her usual single-minded and optimistic way has begun exercising her legs on her own. She found the red elastic strap we used when she was strengthening her legs after her surgery and started working out. I went into her bedroom two weeks ago and found her on the floor with the strap wrapped around her leg. She was trying to pull it herself to create resistance, but instead she kept pulling herself off balance and falling over.

"What are you doing?" I asked.

"Getting strong," she replied as she adjusted the strap around her ankle.

"Can I help?"

"Yes." She unwrapped the strap and handed it up to me. "I have to make my knees stronger so I can walk better."

"Let's do it, then."

She grinned and lay on her tummy. I put her foot through the strap and held the back of her knee securely to keep it from flopping sideways. "Ready?"

"Ready," she said, then pulled her foot toward her while I held the other end of the strap, keeping it tense. She did twenty repetitions on each leg, then she sat on the edge of her bed and we did the same thing, only this time she lifted her foot upwards. I could feel her muscles and tendons working under my hands as she held her foot out, the tension creating a strain and forcing them to engage. She grinned.

This is why I can't just put braces on her legs. Yes, we may be taking a risk that no amount of exercise will improve things and her knees will deteriorate to the point where they won't be able to support her body weight. But this is obviously a risk my daughter is willing to take. I support her strength and determination. She isn't giving up, so why should I.

Every afternoon she finds the red strap and calls to me. "Time to do my exercises."

Friday, July 11, 2008

No matter how well you're coping, you still have bad days.

Today is one of those bad days. I go along for weeks, feeling competent, hopeful, cheerful and organized. I can juggle all 12 balls with an eye on the horizon and not skip a beat. Then, suddenly, a weird feeling of exhaustion will creep up from my toes until my hands go numb and I drop every single ball on the floor where they bounce around crazily until rolling out of sight. I'm stunned, overwhelmed with emotion and angst. To make it worse, I burst into tears. It feels just like when I first learned something was "wrong" with my daughter. That moment presses in on me until my heart feels too full to beat. I thought I was coping so well, I wail. What the hell is wrong with me?

Relax. Nothings wrong. You're just having a Blue Day. They happen now and then, even to the most capable and intelligent parents alive. Anything can trigger it; new shoes already being worn down at the toes, running out of hearing aid batteries, a form you forgot, a phone call from the Regional Center Case Manager. Even something simple, like more weeds in the garden, bring on the tears.

All parents have bad days, but the parents of special needs children get an extra helping of the blues. The trick is to be kind to yourself. Don't suppress your fears or grief, but don't fixate on them either. Take a deep breath, tell yourself you're okay, then do something nice for yourself. In time, you'll find all those balls you dropped and will begin to juggle again, adding one ball at a time. It might take an hour, or a week, but you will be okay.

Today is my bad day. I heard the words "trying not to give up" and wammo, I was on the floor gasping for breath (not really. Metaphorically). I used to freak out when I had a bad day and wonder if I needed more therapy or maybe medication, but over time I understood that having a bad is a normal part of being the mother of a child with disabilities. You can't be perfect and together at all times of day and night, no matter how much you'd like to. I've learned to let myself play The Sims, eat chocolate if I wish, watch a Johnny Depp dvd, take myself for a walk, or dance in the living room while listening to Fat Boy Slim. If the blues get really bad, I call a friend. That was an important step for me. I was attached to the idea that I must be strong ALL THE TIME because if I didn't keep a smile on my face everyone else would fall apart. Um... no, Terena. You may as well insist you learn to fly without an airplane as keep a smile on your face 100% of the time. Besides, you'll creep everyone out (doesn't she ever stop smiling?)

So, that being said, I'm off to crank up the music really loud and "dance away the heart-ache" as the song says. Tomorrow will more than likely be less blue.

Tuesday, July 8, 2008

How do you know what choice to make?

My daughter's CCS (California Children's Services) bi-yearly review was a couple of weeks ago and since then I've been trying to figure out the best choice to make for my daughter, while at the same time realizing I don't have a clue what that choice should be.

At the clinic, the doctor who examined her looked at her knees, which bend the wrong way, and became alarmed. I tried to laugh it off. "Yeah, I know. I try not to look."

"I want you to look," he said without smiling. He then cautioned me that my daughter's knees are in bad shape and she should be wearing braces to support them. "If they continue to bow back, which they will as she gets heavier, she will reach the point where she won't be able to walk at all because they won't support her weight."

I said, "We took the braces off after her surgery because she was complaining of knee pain and the surgeon suggested giving her legs a chance to strengthen. Since we took the braces off, she hasn't complained of pain at all. If her knees are so bad, why isn't she in pain?"

"I don't know," he said. "But in time, she will be."

I looked around the room where seven people, therapists and consultants, sat listening. One of the physical therapists asked about just a knee brace, but the brace expert said that wouldn't help. She needs full, foot to hip, braces on both legs to support her knees. I looked at him, but he wouldn't make eye contact, and then I realized he was angry with me. He used to be friendly and has worked with my daughter since she was three. Now the frustration in his voice told me he thought I had made a bad decision removing the braces.

By the end of the meeting, the room was divided; physical therapists supporting my decision to not use braces right now, and the doctor and CCS staff urging me to consider braces again. The doctor said, "If you want to try therapy for a while, go ahead, but we need to talk about this again in six months." Great. We've got six months to save my daughter's knees.

This isn't the first time I've had to make a choice when the "experts" disagreed. Several years ago she was checked for sleep apnea, which she has. The sleep expert recommended we remove her tonsils to open up the air passage. The Eye, Ear and Nose specialist said her tonsils weren't the problem. Her neurologist agreed, saying it had more to do with her neurological issues. Then another neurologist said it WAS her tonsils. In the end, I decided not to put her through surgery when I wasn't sure it would help. The sleep expert angrily told me I was making a terrible mistake.

Last year, she had surgery on her feet because the bones in them had collapsed and she was walking on her novicular bone. She could hardly walk, even with her walker. One doctor was against the surgery because she might never regain muscle mass after sitting for so long because of her hypotonia. Another doctor thought if we didn't do anything at all, she wouldn't walk regardless. Her feet couldn't' support her weight. She was complaining of pain. That time I chose surgery, risking that she wouldn't recover fully because she was already losing mobility. The risk seemed worth it, and happily, she recovered very well. Except for her knees.

How do you know what choice to make? Who do you ask when the doctors disagree? How long is too long to "wait and see?" Am I hurting my daughter by not putting leg braces back on? Or will I hurt her more if I do? How do I tell my thirteen year old daughter who just recovered from surgery so she could walk, sorry, you're going to have to wear braces again?

Tuesday, July 1, 2008

Beginning to Let Go

The smoke in the Ukiah Valley reached "hazardous" levels, so I took my daughter to stay with her dad for a while. He lives in Davis, and yes, it was smokey there too, but nothing like Ukiah. You can see across the street clearly in Davis while in Ukiah, the view of my neighbors is dimmed by beige, fog-like smoke.

Anytime she leaves to visit her dad or anyone else for a few days, I worry. I know it's ridiculous, but I honestly believe that no one can care for her as well as I do. No one knows her, understands her, or supports her like me. When she's trying to express an idea and can't form the right words, I know intuitively what she means and can tell other's what she's saying. It used to be a great thing when she was younger, but now, I'm beginning to think this telepathy we share is no longer good for either of us. I mean, she wants to be more independent and my stepping in to help her communicate or make decisions might be hampering that. However, she does legitimately need help much of the time, and I see part of my role as her intervener. I help bring the world into focus for her, filling in the gaps of her vision and hearing by explaining what is going on around her. But how much intervention is too much?

I think I am beginning to let go, because this time when she visited her dad, I felt calm. Well, calmer than in the past. I didn't feel the need to grab the phone to "check on her." Didn't wonder every hour what they were all doing. Was she eating? Brushing her teeth? Did her dad remember her medication? Was she able to tell him what she wants? It helped that I was competing in the 24 hour play festival this past weekend so was too busy much of the time to worry about her. But when the competition was done, I didn't call her dad to see how things were going.

She is growing up, pushing me away, trying out her own words and ideas, without me in the middle, and I think I'm finally beginning to let her. Beginning. It will be a while before I completely let go. But really, does any parent?

Tuesday, June 24, 2008

Mendocino County is On Fire

On friday, we had an incredible lightning storm. I was out that night with my writing group and as we left the cafe and walked across the overpass, we watched the flashes of lightning strike through the treacherous black clouds which were smothering the hills. Fascinating and beautiful. And then I thought, Uh Oh. I bet there's a fire burning now.

Not only is there a fire burning, there are over 130 fires burning in Mendocino County, one just ten miles from the city of Ukiah where I live. Every fire is burning out of control because there just isn't enough man power to deal with so many fires at once, especially when you realize that all of Northern California is threatened by fire. Cal Fire is on overload, so Mendo Fire Crews are battling the blazes mostly on their own. There are a lot of Community Volunteer fire crews, inmates from the County Jail, and homeowners out there, battling thousand acre blazes with garden hoses and shovels.

The smoke burns your throat and eyes. I'm watching my daughter closely for signs the smoke may be damaging her lungs. So far she seems fine, although she did have a cough last night. I don't want to interrupt her daily routine too much, though, so I let her go to school as usual (they are keeping the children indoors during recess). The forecast is 30 days before the smoke clears. It's going to be another one of those decisions where I have to balance her happiness with her health. For now, we'll stay where we are.

In Ukiah, we are mostly safe, but of course, not completely. Besides the heavy smoke dimming the sun and reducing visibility to less than 1 mile, a fire could reach this town. When I was in the seventh grade I lived in Lakeport in Lake County. That summer, Cow Mountain caught on fire and the fire blazed almost unstoppable toward the town. My family and I stood on a hill in town one night and watched the flames crest the hill and race toward the freeway. We were all praying the flames wouldn't leap the four lanes of asphalt, but the fire was burning so hot and the air was so dry, the town was on high alert. No one slept much that night. We had suitcases packed, waiting for the evacuation order. Somehow, CDF and local fire crews managed to keep the fire from reaching the freeway, saving the little town of Lakeport. A few days later, the fire was out.

I have a list of things to take, just in case. Documents, medications, some clothing, food and water, dog food, both computer towers, my lap top, and Paul's letters. If there's time I'll grab the photos. Both vehicles have full tanks of gas and we have friends in the Bay Area we can go to if need be. Odds are, Ukiah will remain untouched by anything more than dense smoke, but just in case, I'm ready.
This is California. We all need to be ready. If it's not catching fire it's falling down in an earthquake. I've lived here my entire life, so droughts, wildfires and earthquakes are nothing new to me, but the loss of life and property is tragic. You can't take anything for granted, not even in California where the weather is gorgeous 80% of the time and the views rival the French Riviera. Enjoy the beauty, but watch for smoke.

Saturday, June 21, 2008

Learning to Walk Takes a lot of Falling Down

My daughter was born with a physical impairment which makes moving around tricky, so you can imagine how hard it was for her to learn to walk. But she did, slowly, painfully, and with hope and determination, she found a way to make her wobbly legs and ataxic body stand up. Pulling up to stand took over a year. Cruising around from chair to book case to table took several more months. And then, at age three, she took that first step out into the living room, away from the protective stability of the couch, where she weaved as if trying to walk on a ship in the middle of a storm before falling smack on her butt.

She cried and screamed with frustration, then crawled back to the couch, pulled herself to standing, and tried walking again. One, two, three, four steps... then WHAM, back on the floor. It took six months before she could walk across the living room, still weaving back and forth like a sailor, but eventually finding her own sense of balance. Triumphantly she stood on the other side of the room as she looked back to see how far she'd travelled.

Despite her best efforts, she still fell down. ALOT. That's when we started calling it a "Gravity Check."

"Gravity Check! It's still working," I said while I helped her stand back up and regain her balance. She'd laugh, and try to walk again.

Eventually she started to say it to herself when she fell on the floor. "Gabbidy Chick." This would make her giggle which helped with the frustration and encouraged her to try again.

Every transition in a child's life is a Gravity Check for parents. We see our tiny babies grow into toddlers, then children, lose their first baby tooth, go to Kindergarten, graduate from elementary school and become teens. When your child has a disability, those Gravity Checks are a little stronger. The natural fear all parents deal with is amplified and it's a struggle to tame that panic every time we let our children out of our sight. Who will keep her safe? Who will help her stand back up when she falls? Will she be happy?

My daughter is now thirteen and about to enter Jr. High. This Gravity Check is a rough one. She may be ready to grow up and be a teenager, but I'm not. I'm scared, tired, frustrated, and proud all at once. I'm happy to see how strong and beautiful she has become, how funny and intelligent, but I'm nervous about the perils of 7th grade and the social problems she may have to cope with. Can we do this?

Then I remember how she fought to learn to walk, despite how many times we were told by "experts" that she never would. Oh yeah? Just watch me, doc, she says as she races away with her walker. Sure she stumbles around like a drunken sailor, but she's the most beautiful drunken sailor you've ever seen.

I started this blog to connect with other parents who are raising a child with a disability, especially teenagers, and I'd love to hear your comments.