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

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

But this time, the meeting was far from positive. 

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

"She was?" he said with raised eyebrows.

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

"Oh. That might be a problem."

"Why?"

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

"What?"

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

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

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

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

"I'm sorry."

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

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

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

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

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

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

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

Say What?

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

http://saywhatmunchkins.blogspot.com/2012/06/writing-frenzy-hearing-aid-grants.html

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

What is Strength?

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

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

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

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

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

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

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

Gathering strength, I think.

Second Easter in Hospital

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

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

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

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

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

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

And why do I need to know so badly now?

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

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. 

Born to be Silly

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

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

She laughed so hard she collapsed on her bed.

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

"What about me?" I asked.

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

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

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

Mom - A banana of course.

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

Mom - Ummm.... a hat?

QT - No, a shoe. 

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

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

Mom - An egg.

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

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

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

QT - A frying pan.

Rick - Yes! (insert hysterical laughter from both)

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

QT - It just is.

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

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

Rick - No.

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

Rick - Yeah. Maybe a goldfish is funnier?

QT - Yeah! (insert more hysterical laughter)

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

QT - Pie.

Mom - Not cake?

QT - No.

Mom - Why?

Rick - Because there are lots of pies.

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

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

QT - Pies are silly.Cake is not.

Mom - That doesn't make sense.

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

The Captain and Terena

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

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

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

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

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

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

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

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

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

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

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

Neil DeGrasse Tyson - The most astounding fact.

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

My definition of faith

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

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

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

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

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

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

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

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

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

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

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

Dancing my way through a mid-life crisis

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

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

Nope. Not happy at all.

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

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

But damn it sometimes I want a straight answer!

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

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

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

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

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