All grown up

The day I feared and hoped for came: Rhia graduated from school. When she turned 22 in May, she officially “aged-out” of her school based programs. She is now an adult.

Her school had a small ceremony for the three students who were also moving on to adult based services. But first, every student in the program got an award. One was for “Best Dancer.” Another was “Kindest.” A tall, shy boy was given an award for being the “Most Helpful.” And then it was Rhia’s turn. She stood up on her wobbly, colt legs and walked to the front of the room where she was given her Graduation Certificate and her award. Her’s said, “Most Likely to Speak Her Mind.” Everyone cheered.

They know my daughter well.

When Rhia was 5, she got in trouble for something (I don’t remember why). Instead of backing down, my tiny, elfin child put her hands on her hips and glared up at me with fierce eyes. “You can’t talk to me like that!” she declared. Fighting laughter, I sent her to her room. I was so proud of her and prayed that nothing would break that powerful spirit.

17 years later, nothing has… not multiple doctor’s appointments, losing her hearing, worsening eyesight, three hospital stays, deteriorating strength, ataxia, and anxiety. She will tell you exactly what she thinks and will fight hard if she thinks you’re wrong. Brutally honest, she is also extremely kind. She’ll tell you the truth, but be the first with a hug if she realizes she’s hurt you. She’s never intentionally cruel and fights for others as hard as she fights for herself. I wish I had been that strong when I was her age; instead I allowed others to walk all over me. I didn’t believe I mattered, but Rhia knows that she does.

I’m afraid. She’s not. But she doesn’t understand how complicated services for adults with disabilities can be. I see road blocks, paperwork, questions, and meetings. I’m afraid her world will get smaller now that she doesn’t have an ASL interpreter. Will we find one? Can anyone or anything replace the incredible support she’s gotten in school? How will I manage to piece together anything close to that?

Rhia is happy. Her greatest joy is she can now wear all the Disney t-shirts she wasn’t allowed to wear in school.

“I can wear anything I want!” she said, tossing school shirts on the floor. “I’m all grown up!”

“Yep,” I said, “You can wear Disney everyday.”

“Hooray!” More shirts flew into the air. I quietly scooped up the best ones to keep for the times she needs to wear something nicer than a Princess t-shirt. That will be another battle on a different day.

I need to have faith in my daughter. A deaf-blind young woman who wins an award because she always speaks her mind is no one to underestimate. And I’ve always got her back. We’ll find a way.

 

 

 

 

 

Trying to change the world is not a solo endeavor.

I believe that one person can make positive changes in the world. My heroes are Martin Luther King Jr, Dr. Hawa Abdi, Cesar Chavez, and Margaret Sanger. All four fought for the rights of others despite impossible odds and succeeded. And so, with their example in my mind, I tried to raise money to pay the bus fare for people with disabilities. Dial-A-Ride is expensive, especially if you live out of town, and in a rural area like Mendocino County, the bus is limited. How does a person with a disability get to town for shopping or a doctor’s appointment or to visit friends, if they can’t drive?

How hard could it be? It’s not like I’m trying to provide medical care in Somalia.

With the support of Burners Without Borders, a volunteer organization that helps people create change in their communities, I made a fundraising plan and called the Mendocino County Transit Authority (MTA). No one called back. I called again. I emailed. I waited. No response. Fine! I guess they don’t want money. Too bad, I’ll try a different tact. After making a list of local non-profits who help people with disabilities, I contacted each one. No one called back. Hmmm…. weird. What am I doing wrong? I called Burners Without Borders for help and they advised me to go ahead and fundraise and not worry about getting MTA support. Just show up with a check and they’ll take the money.

So I started planning a fundraising event and quickly had a panic attack.

If I don’t find a way to help people with disabilities get to the grocery store, who will? Would Margaret Sanger give up because no one returned her phone call? No! She was beaten and thrown in jail, but never gave up. She also had a group of people helping her.

Oh… right… even heroes need help. And I am not a hero. I’m just a woman in a rural town who sees a problem and wants to solve it.

Last year I tried to get the City of Ukiah to fix the Accessible Pedestrian Signals (APS) at intersections so people with vision impairments could cross the street safely. I met with a City Councilwoman and contacted the Department of Transportation. I also spoke with the City team working on the new traffic plan. They said they would add me to their contact list so I could attend their meetings. It never happened.

Again, I banged my head against a brick wall trying to solve a problem no one else seemed worried about.

If I had more time, I could attack all these problems effecting people with disabilities in my town: no transportation, broken pedestrian signals, crumbling sidewalks, lack of curb cuts, unsafe street crossings (near the hospital for goodness sake!). But I can’t do it alone; not even Martin Luther King Jr was alone. I have to accept the fact that just because I see a problem doesn’t mean it’s mine to solve. I really tried to make progress, but the brick walls I hit are stronger than one person can tear down. So I’m passing the baton to the next person.

You?

I hope someone carries it.

 

5 years and counting

Rhia almost died five years ago on Easter. After a week in the hospital she recovered from what the doctors called metabolic distress. She left weak, but alive. And she had an actual diagnosis for the first time: mitochondrial disease. The doctor didn’t know which type of mito she had, but all the symptoms pointed to some kind of illness that starved her cells of fuel. Slowly, over many years, her cells would starve to death and she herself would die.

They gave her five more years.

That was five years ago.

I spent five years preparing myself for her inevitable death.  Five more Christmas. Five more trips to Disneyland. Five more visits to New Orleans to see family. And then one day she would stop breathing, and my lovely girl would be gone.

But she’s still here, happy and thriving and very much alive. Her ataxia is worse and so is her vision. She can barely walk, even with her walker. Managing her fatigue is top priority. And she’s lost ground cognitively. But despite all predictions, she is still here. She is a friendly, stubborn, kind-hearted, and curious young woman who deals every day with her disability. It frustrates her sometimes but she never gives up. Every time she walks into the doctor’s office on her wobbly legs, it is another victory.

I was ready to say goodbye. I wasn’t ready to take care of an adult with severe disabilities. Soon she will transition into an adult day program when she ages out of the school system at age 22. That is next month!

22. No one believed she would see age 22. Not even me.

On Tuesday we go back to Stanford for her annual check-up with the geneticist and neurologist, They measure her body and track her decline; there is always a decline. And they always smile when they see her. I see the unspoken “how are you still here?” Rhia is impressive, a mystery that has puzzled her geneticist for 10 years. First he couldn’t figure out what was causing her symptoms, now he can’t figure out how she’s still alive. But he seems thrilled to see she still is.

I know I will outlive my child, but no one can tell me by how long. She could collapse tomorrow, or next month. Every time she gets sick I feel the tight panic in my chest. Is this the illness that finally saps her strength? She recovers and my fear subsides. Until she falls. Will this injury be the one that stops her from walking? She gets back up. She keeps walking. She keeps smiling. There is nothing I can do but watch and enjoy every moment I have with her.

Not to say she’s always a joy to be with. She can be impossible! Stubborn and quick to frustrate, she can yell, hit, kick, and throw things. But she is just as quick to apologize and make amends. She’ll pick you a flower or draw you a picture. When you’re sad, she’s the first with a hug. She tells the most ridiculous, surreal jokes and laughs at her own wit. She sings in the car and the bathtub. And she always makes you feel like you are in the presence of a miracle.

I know we’ll say goodbye one day. But right now, I’m going to watch Snow White for the hundredth time with my fabulous daughter.

 

Wanted: The perfect program for a highly social, deaf-blind, medically fragile, young woman.

Last week, I attended my daughter’s very last IEP meeting. Rhia turns 22 in May, which means she will no longer qualify for school based services. Instead, she will be a full fledged, 100% adult, with all the challenges and opportunities that provides. I sat beside her at the the meeting, surrounded by people who have been a part of her life since elementary school. Her current teacher used to be her aid in the 4th grade. Now he led the meeting that would transition her into adulthood.

Fighting back tears, I stated my concerns. Who will be her Sign Language interpreter? How will she continue to learn ASL? Which program will provide the most flexibility while still providing social opportunity so she can make friends? How will we fight the isolation that comes when a person is deaf-blind and uses a wheelchair to travel?

No one knew the answers. Everyone was worried and everyone tried hard to come up with solutions. But what I really wanted was someone to take charge with their magic wand and create the perfect program for my daughter. Unfortunately, no one had a wand.

It’s not that I didn’t know this day would come; her IEP team and I have been discussing it since the 8th grade. Transition is a big deal so it takes years to plan. The problem is that my daughter is medically fragile and has serious communication challenges. We live in a tiny town with limited opportunities. We really need to move to Berkeley or Santa Rosa, but who can afford the rent? So here we are, Smallville California, hoping the perfect program for my Disney loving, shy, cheerful daughter will appear.

Rhia keeps asking me what will happen when school ends. I tell her she’ll go into a different program for grown-ups. She’ll make new friends and maybe take classes at college again. She scrunches up her brows and looks at me sideways, not sure if I’m telling the truth. But I am; I’m telling her what I hope will happen. When I ask her what she wants she says she doesn’t know, but she’d like to move to “LA” so we can go to Disneyland everyday. Darling, if I could, I would, but I can only afford to live in a tiny town in NorCal where the adult programs are geared toward work and very few people know ASL.

I really need Godmother’s wand!

To my first love, Richard Hatch

RICHARD HATCH

Richard Hatch died yesterday of pancreatic cancer. He was 71. Reading the news, I felt as if I’d lost my first, dearest love. In a way I had. I have loved Richard Hatch since I first saw him on Battlestar Galactica when I was 11 years old in 1978. From the moment I saw his smile and those hazel-green eyes I was madly in love, and I stayed in love for the rest of my life. I’m not sure why, but there was something about his voice and those cheekbones that made my heart beat wilder than anyone else on the planet, even Johnny Depp.

While other girls decorated their lockers in Middle School with pictures of Scott Baio and Leif Garrison, I plastered mine with a collage of Richard Hatch. Richard in his Battlestar costume. Richard playing the guitar. Richard looking serious with his dark hair in a center part. Richard in a scene from The Streets of San Francisco. I collected everything I could find about him and kept all the clippings in a secret scrap book. My infatuation didn’t end; even after I graduated high school and went to college, I worshipped Richard Hatch. When I was 20, a jealous boyfriend found my scrap book and burned it. That relationship died, but my love for Richard remained steadfast.

b-and-w-richard

One day when I was living in San Francisco in 1991, I saw an add for an acting workshop taught by non-other than Richard Hatch. I stole the flyer and called the number to sign up, spending the last of my grocery money that month to be in the same room with my first true love. Then I spent the next two weeks trying to decide what to wear.

At last the day came. Wearing a green sweater, a jean mini-skirt, black tights and my Doc Martin boots, I entered the room and instantly hated my outfit. There he was, Richard Hatch. He wore faded blue jeans and a light blue, button-down shirt with the cuffs rolled up, revealing his beautiful forearms. Oh god, don’t stare at his forearms! He smiled and nodded as I walked in and I quietly found a seat on one of the folding chairs at the front of the room. Why am I the first person in the room? Thankfully more people entered, but I wished I’d actually said something rather than just staring at my feet.

richard

There were about 20 students and the class began with a short introduction. Richard explained the class was about finding your own, inner strength and talent to make you a better actor. We all introduced ourselves and when it was my turn I thankfully remembered my own name and said I was studying drama at San Francisco State. After introductions we formed a circle for warm ups and spontaneity exercises. There were more getting-to-know-you exercises, including one that required us to say the first thing that came to mind about the person directly across from us.

Paralyzed, I mumbled responses, growing more frightened as time went by. I can’t move in front of Richard Hatch!  I might faint in front of Richard Hatch! Does he know? Does he understand how badly I want to have his children? Oh my god I want to touch him! No, don’t touch him! That would be creepy. Don’t be creepy. Don’t look at him. Oh no, he wants me to look at him. He’s asking me a question. 

richard-and-cat

“Sorry?” I asked.

“This seems like a challenging exercise for you, Terena.”

Oh my god he said my name! Richard Hatch knows my name! “I’m just a little nervous.”

“It’s okay. Everyone feels nervous sometimes. So this is what I want you to do.” He moved into the center of the circle and gestured for me to join him. Slowly I moved and stood beside him. Putting his hands on my shoulders, he said “Close your eyes.”

Richard Hatch is touching me! I closed my eyes and he gently spun me three times. Then he let go and said, “Put out your arm and point. Keep your eyes closed.”I did what he said. I would have jumped out the window if he said to. After a moment he said, “Now, spin once on your own, stop, open your eyes and say the first thing that comes to mind about the person you’re pointing at. Don’t second guess yourself, just do it.”

Taking a deep breath, I spun around and then opened my eyes. I was pointing directly at him. Dropping my arm, I just stared at him in horror. A few people laughed and one person said, “Come on. You can do it.”

Richard smiled kindly. “What do you want to say?”

“I’ve been in love with you since I was eleven years old!” I said loudly.

There was a pause, then the entire room cheered.

Richard blushed and grinned. “Now that took guts,” he said. We both laughed and he gestured that I should rejoin the circle. The ice had broken. Finally relaxed, I enjoyed the rest of the class and learned quite a lot about improvisation and trusting my acting instincts.

However, after class I gave him one of the awful, passionate poems I wrote in high school about him. I wish I hadn’t. He probably thought I was the weirdest stalker he’d ever met. Oh well, at least he knew my name.

Goodbye Richard. You will always have my heart.

richard_hatch-older

How to be Kind.

dchitwood_noactofkindness

(image from http://madison.citymomsblog.com/kindness/)

 

Someone said, “You’re a better person than I am,” when I told him about my 100 days of kindness challenge. He said he couldn’t imagine just ignoring all the hatred going around. But that’s not what the challenge is about. Staying silent when you see injustice is not being kind. Speak up. Speak out. Protest. Fight. But do it in a way that shows your strength and integrity.The challenge is to not feed the anger and hatred.

How?

No name calling. If someone says something you disagree with, or you find offensive, tell them. But don’t stoop to calling them stupid or idiot or something worse. If they say something bad about you, tell them to stop. If they don’t, ignore them. People who have no better argument than calling you a “libtard” aren’t worth your energy.

Practice empathy. Take two minutes while you’re waiting in line to imagine what it must feel like to be the girl bagging up your groceries. Or how hard it must be for the person using a wheel chair to get all her shopping done. Instead of zoning out on your phone, look at the people around you. Everyone is struggling, not just you.

Hold the door for someone who’s hands are full.

Give up your seat on the bus if someone needs it.

Buy a cup of coffee for a homeless person on a cold morning.

When someone cuts you off in traffic or shoves past you in line, take a deep breath and count to ten before reacting. Take that pause to deescalate the anger and keep a clear head. Then decide how to react. Will you let it go, or confront the person? Either way you’ll be in better control of yourself.

Being kind is simple. Just remember all the lessons we were taught in elementary school about respect and bullying and follow them as an adult. It’s no mystery. Stand up for what is right. Refuse to spread hate. Be polite. Be considerate. But take no shit.

 

 

 

2016 – Where is the happiness?

It feels as if 2016 kicked everyone in the gut. Every person I know has faced hardship and strife. Too many people died, from the famous like David Bowie and Prince, to the not so famous but dearly loved, like my friend Randen. Tragedy hit hard and across the world war has escalated. I don’t know anyone who feels safe. And now with President Trump looming, most of my friends feel like they are one step away from disaster. I work in a town devastated by a wildfire. I see how many more homeless people there are crowding the park because there’s no where else to go. It’s so easy to get pulled in to the fear and darkness.

By focusing so much on the news and the dark stories I hear from others, I almost forgot there were many blessings for my family this year. I am teaching again. My husband’s cancer is gone. Our daughter is happy and has many friends. My new book is about half way written. Our garden is thriving. We are financially stable, at least in the short run. The roof doesn’t leak. Both cars run. We have enough to eat.

2011 through 2015 were filled with one health crisis after another. First my daughter almost died, then I was injured and lost my job, then my husband got cancer. We almost lost our home when his small-business ended. I have no idea how we got through those years.

But 2016 in contrast was a wonderful year for my hubby and kid. No one was sick. No one injured. The bills were paid. Seems sad to compare 2016 to those prior four years, as if I’m saying it was a good year because we didn’t die. But sometimes it feels that way…

The future scares the hell out of me. My daughter’s health is declining and I’m afraid of the budget cuts a Republican government will force. How will that affect her and the support she needs to survive?

We are all worn out, fearful and tired. 2016 kicked everyone in the gut. But what I learned from so much fear and loss is that the only way to get back up is to remember the small miracles hidden in the fear.

My daughter’s smile.

Those moments with my special needs students when they suddenly understand something we’ve been working on for weeks.

Every time my beat-up 2003 Honda Odyssey starts on a frozen morning.

The amazing Chinese food my husband cooks from scratch.

Paying all the bills and still having money in the bank.

The tiny plants in my green house waiting for Spring.

Singing with friends on a bright Christmas afternoon.

There is still good in the world. Some years you have to look a little harder to find it, but it’s never gone. It’s worth fighting for. I heard that in a movie somewhere…

Happy New Year. Don’t give up.

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