Thursday, October 4, 2012

Medusa's Muse new Website

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

My press is thriving, just like my daughter.

Friday, September 28, 2012

Fear Goggles

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

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

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

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

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

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

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

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

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

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

Thursday, September 6, 2012

What I learned during Summer vacation

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

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

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

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

Saturday, August 18, 2012

The Mito Muscle Biopsy

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

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

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

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

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

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

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

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

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

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

She smiled and shrugged. "No problem."

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

Tuesday, July 24, 2012

Meeting Llama Tsultrim

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

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

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

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

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

He nodded and said, "Come in."

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

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

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

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

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

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

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

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

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

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

Monday, July 9, 2012

Recognizing Blessings

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

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

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

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

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

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

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

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

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

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

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

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

Godiva chocolate.

Tuesday, July 3, 2012

How would you feel if your worst fears are confirmed?

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

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

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

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

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

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

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

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

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

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

Sunday, June 10, 2012

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

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

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

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

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

My husband entered the room. "Honey."

I jumped. "What?"

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

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

"I need to finish filing."

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

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

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

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

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

Smart man.

Wednesday, June 6, 2012

A Fascination with Terrariums

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

Here was my first attempt:

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

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

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

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

This one I made for my husband.

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

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

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

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

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

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

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

But this time, the meeting was far from positive. 

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

"She was?" he said with raised eyebrows.

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

"Oh. That might be a problem."


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


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

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

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

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

"I'm sorry."

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

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

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

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

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

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

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