Fear Goggles

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

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

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

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

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

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

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

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

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

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

The possible syndrome roller-coaster.

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

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


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

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

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

But now, we need to know.

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

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

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

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

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

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

The fear of falling.

It was a scary couple of weeks after Queen Teen's fall. Her hand remained swollen and bruised, and even though the first set of x-rays showed no fractures, we waited anxiously for the second set to confirm. Sometimes it can take several day or weeks for a fracture to become apparent in an x-ray. Queen Teen wore a big black wrist brace and couldn't use her walker. Instead, Rick or I helped her walk.

But the worst thing was the depression. She became more sullen and moody every day. School was out for Thanksgiving break (a whole frickin week!) so there was nothing to distract her. She was mighty sick of movies after day three, and the distraction of Thanksgiving day only helped a little. By day five she was lying on her bed weeping because she couldn't find the Evil Step-Mother figurine that goes with the Cinderella. Plus, it was raining, which always puts her in a bad mood. I felt so bad for her and tried everything to keep her distracted and entertained, but when you can't even look at a book because your hand hurts too much, there isn't anything that will cheer you up. Happily, the second set of x-rays confirmed no fractures.

We all survived Thanksgiving break (mostly) and she went back to her doctor the first day of school. The doctor pushed and pulled on her wrist and hand to double check for hidden fractures or cracks, but other than a sore thumb and a couple of small bruises, Queen Teen seemed fine. She returned to school with a big grin on her face and we announced to her teachers and classmates that she was fine. She decided to keep wearing the brace though because using her walker hurt her hand without it.

Queen Teen has fallen this hard before. Three years ago she fell in the bathroom, hit her face on the sink, and knocked out a front tooth. Usually she falls about once a day, landing on her butt. Her pale skin is typically mottled with bruises, especially on her legs and feet. We've all become somewhat immune to the fear when she falls. Queen Teen curses her ataxia and gets back up on her own. Sometimes she needs help, like the day she fell into her closet and couldn't find a handhold to pull herself out. When I hear her fall in the next room, I listen closely to see if she's okay, but continue with what I'm doing. If we all didn't adapt to the worry of falling, all three of us would be drinking Vodka before 9:00 am.

But this fall felt different, because this fall scared her. Yes, she was seriously injured, which will rattle anyone, but in the days following the accident, she seemed scared to move. Not just because it hurt her wrist, but because she seemed afraid she might fall again. And I was nervous. The terror I felt when we thought she may have broken her wrist was oppressive. I still can't shake off the fear, the thought that she didn't break anything... this time. What about next time? What if she breaks her leg? She and I clung to each other a lot more than usual, and not just because of the injury or the fact that she needed more help. Our confidence in her ability to always get back up when she fell was shattered.

Queen Teen recovered more quickly than I did. One morning I heard her try to walk to the bathroom on her own, heard her shout "Whoa!" as she began to fall. I jumped out of bed and ran to her side, scolding her to wait for me, to be careful, to not fall down. She let me help, and for a few days I heard her say to herself, "You have to wait for help. You can't do it by yourself."

Shit... have I just made it worse by telling her she can't?

Luckily, Queen Teen isn't a girl who sits and waits for long. She started moving around her room on her own again by holding on to the furniture, and once the second x-rays showed no fractures, I let her. I had to force myself to go back into the other room and let her walk alone. She had to prove to herself she could do it, that she was safe, that she was strong. I had to clamp down on my fear that she would fall again. I had to have faith in her ability to keep getting up.

Today when I took her to school, several of her classmates came out to the car to greet her. They wanted to help. So I brought the walker to her as she got out of the car and allowed two of her girlfriends to guide her into the class. Watching them closely, my heart pounded and I had to force myself not to hover. Queen Teen walked into the class and she was quickly surrounded by a large group of friends who said hi, patted her on the back, touched her hand, asked her if it still hurt, was she okay, could they help. Her aid then entered, looking a little frazzled that she hadn't been there to help Queen Teen inside. This was where QT feel, so the staff and teachers are very nervous about having her walk into the class on her own. I understand, but I have to let her do it. And with that many students surrounding her, supporting her, making her feel safe, I know they won't let her fall.

Queen Teen knows that too. 

Sanity?

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

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

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

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

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

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

Vaccinations, sunshine withdrawals, and Laurie Berkner

"Rain, rain, rain! Why is it always raining?" Queen Teen shouts. She has said this every morning and several times throughout the day for a week. I can't really blame her. I love the rain but even for me this weather is a bit excessive. 7.25" in only three days, and it's still pouring. Occasionally it hails and the wind blows so hard from the south there has been rain-water pushed under my front door, making the entry damp and slippery. Queen Teen is a sunshine girl;she needs sunlight to make her smile. When it's gray and cold for more than a couple of days her spirit matches the weather: she gets gloomy.

And then to make the week extra fun, she got vaccinated.

We were finally able to get Queen Teen the H1N1 shot. She's been on the waiting list at the pediatrician's office for two months, and although there have been open clinics via the health department in our area, there was no way Queen Teen was going to stand in line for two hours waiting for a shot. Going to the doctor to get one and waiting 35 minutes was bad enough. She screamed and cried and hit. Luckily her dad came with us to help hold her down while I shoved up her sleeve, held her arm out to the frightened nurse, and said, "Now!"

I hate doing this but it's the only way to get her vaccinated, or her blood drawn. But I know every time we do this it just adds to her trauma and PTSD. I'm surprised she doesn't break into hives just at the word "doctor." By the time she's grown-up and able to make her own medical decisions, she's going to need daily therapy just to walk into a doctor's office for a check-up. That's why I only force this on her when it's really, really, really, really, really, really, really important. The H1N1 virus made this year's flu shot extra important.

Queen Teen was so upset she didn't even want to go to Starbucks. She wanted home: now! Then she hid in her room and rubbed her arm where she was injected. I keep trying to tell her that if she relaxes it won't hurt so much, but in the throes of panic she can't hear me. I gave her tylenol and juice and left her alone to sulk.

After a few minutes she came to find me. I supposed I was forgiven. She came into my room where I was surfing the internet and I suddenly had a brilliant idea.

"Come here, doll." I pulled her toward me and sat her on my lap, then clicked on Laurie Berkner's website. Together, Queen Teen and I watched a few of Laurie's webcasts. It was like the sun had broken through the rain clouds. Queen Teen was laughing and singing along to the songs. She grinned and then hugged me tight, and then we sang, "The Goodnight Song."

"I'm a little frog and my daddy loves me.
I'm a little frog and my mommy loves me.
And when they tuck me in to sleep at night,
they say Ribbet Ribbet Ribbet, good night.

Goodnight. Goodnight. Goodnight little froggy goodnight..."

No matter how bad things might get in Queen Teen's world, Laurie Berkner always makes her feel better.

The Challenge of 2010: Don't Freak Out

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

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

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

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

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

Right....

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

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

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

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

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

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

Or maybe doing that will make me feel better?

The New Year

Every New Year's Eve, I stare out the window feeling exhausted by the past year and dreading the new one. It's been this way for so many years I've lost count. When I wake up in the morning on new year's eve I feel so depressed I can barely get out of bed. Every year is a battle to keep myself going, keep a roof over our head and food on the table, keep the car running, myself running, my family thriving. Every year I fight to get my daughter what she needs: specialists, therapists, equipment, support, an education and medical care. 2009 was a particularly impossible year, so this year's New Year's Eve depression was worse than usual. It's just too much, sometimes. And next year is looking even more difficult.

How did I think I could go to grad school and raise my daughter at the same time? Last year was an exhaustive juggling act, one which has pretty much destroyed my publishing company (Medusa's Muse) and halted my own writing. Pure stubbornness has kept me going and kept my press alive long enough to finish our last book (for a while. I refuse to shut my press down completely! As I said, I'm stubborn).

And now I've been told that these last semesters are the easy ones.

You have got to be kidding!

On New Year's Eve 2009 over my morning cup of decaf, I made the mistake of looking at everything that's coming in 2010 and suddenly felt my heart pound like it would bruise my ribs. The class load for Spring 2010 is intense, followed by a Summer crammed with as many classes as SF State will provide (which due to the State budget cuts may not be that much), and then I do two, ten week, full time internships in the Fall of 2010. All of this on top of taking care of my depressed, fourteen-year-old daughter who's struggling with her disabilities and who needs more care now than she did when she was five. Plus, both my hubby and I are unemployed, but it will be a year before I can get a job. How the hell are we going to keep our house?

Breath, Terena. Breath.

But then on New Year's day, I woke up feeling strong and eager. It was a brand new year and the eternal optimist in me kicked off the panic stricken hangover from 2009 and took a deep breath. I have no idea how I'll manage school this year, or how I'll find a way to help my daughter, but I know I will. And I don't know if we'll keep the house or pay our bills, but my husband and I are a great team and we've always found a way. Again, I don't have a clue how we'll do it, but I know in my bones that we will.

One month at a time. Don't worry about anything else. Just get through 2010 one month at a time.

I feel like I'm on the Titanic and I've just realized there aren't enough life boats

The economy of California is a lot like the Titanic; it was big and beautiful and ahead of its time. Everybody wanted a ride and you felt very lucky to be one of her passengers, until the ship hit the iceberg.

California hit it 12 months ago, and we've been very slowly sinking into the depths of the black and icy sea. Those with resources get the life boats. Those without, the disabled and elderly, the poor and the people who depend on services, get a deck chair where they can listen to the band as they drown.

Am I taking this metaphor too far? I told you I feel like I'm on the Titanic. The worst part is that Queen Teen is on this damn ship too, and there's no way I'm going to let them steal all the life boats from her.

I don't know how to stop them, though.

State Could Run Out of Cash

How Golden State sank into budget morass

Governor's Last Stand: His Way, or IOU's

Califoria's budget cuts: deep to the bone

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.