Terena Scott's Blog, page 10

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!

Shhhh… speakeasy and I’ll tell you a secret

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In the mood to time travel? I know a place, hidden away in a basement near China Town, where it’s always 1923. The stories are hot and the gin won’t make you go blind. But you have to know the password to go there.

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The Speakeasy is an immersive play where you can wander different environments (a saloon, a casino, a cabaret and three secret places) to watch several interweaving stories taking place amongst the staff of a 1920’s speakeasy. Pick a story and follow the characters from room to room, or stay in one environment and see all the characters wander through.

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I chose to mix it up, following a character for a while then exploring another room to pick up threads of different stories. I began with a mother and father hunting for the girl their son had loved; he had been killed during the Great War. Then I followed a man with a gambling problem into the casino and tried my own luck at craps. Turns out I’m pretty good. When a loud, obviously intoxicated woman dressed in  flapper attire yelled at the gambling man for abandoning his children, I followed her out the door and into the cabaret. Finding a seat near the stage, I watched the performances. They reminded me of something I’d seen in a 1930’s movie, complete with live music and dancers in red sequins tap dancing.

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A big man who was obviously the boss and dressed like a wealthy gangster asked me if I was having a good time. Deciding to follow him for a bit, I listened in on a “private” conversation about “supplies.” I ended my evening back in the cabaret where I watched a love story unfold between one of the Speakeasy’s guards and a dancer. I can’t tell you the ending of the show, but lets just say it was surprising yet appropriate for Prohibition.

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I have a passion for the 1920’s and 30’s. The Speakeasy surpassed my expectations with the costuming, acting, decorations, and stories. I really felt that I was in a different time surrounded by real people, not actors. Even if you’re not a Deco/Flapper/Gatsby fan, you need to experience this theatrical event; there’s nothing like it.

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However, there are rules you need to follow if you decide to go. Wear appropriate clothing. You don’t have to go in costume, but you do need to dress up as if you’re going to a fancy cocktail party. No technology! They didn’t have cell phones in 1923. And be quiet, or if you must speak, speak softly. There’s a reason it’s called a speakeasy.

Click the link to buy your ticket and learn the secret password. I promise, you won’t be disappointed.

(images from The Speakeasy)

 

 

I’m giving up fear for Lent

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image from Tin House

Hidden away in a large plastic bin are years of my writing; poems, plays, short stories, articles, essays… even a finished book-length manuscript. Why are they stored in a bin and buried in my bedroom?

Because I am terrified of rejection.

I used to send my work out, but after twenty-five rejection letters I quit. I couldn’t take the disappointment and depression any more. Every rejection felt like a rejection of me, not my writing. I was the loser who poured her soul into every word only to have all that work stomped on by a heartless editor. My writing was worthless, therefore I was worthless.

My ego became intertwined with my writing. How can it not? Writing comes from the heart; it makes you vulnerable. You have to open a vein into your inner core and let the creativity pour out. No wonder every rejection letter felt like a rejection of my soul. I was just another girl who thought she could write like the millions of others who think they can write. I’m not special. I don’t matter and neither does my writing.

Vulnerability turned to depression and depression became fear. Never wanting to feel that much misery again, I put my writing in a plastic bin and shoved it behind my bed.

The other day, someone asked me what I was giving up for Lent. Not being a Christian, I just shrugged and said, “candy.” But what actually is Lent? And why should you give something up to celebrate?

According to The Upper Room, Lent is the season of the Christian year when Christians focus on simple living, fasting and prayer to grow closer to God. For 40 days, the length of time Jesus wandered in the desert alone, Christians let go of material things and focus on their spirit. For this ritual to work you have to give up something you really love, or are really attached to.

I am absolutely attached to fear. Perhaps this is a blasphemous way of observing a holy tradition, but as I said, I’m not Christian. However, I do believe ritual and symbols are important and that reconnecting to our sense of spirit is vital. Making a commitment to something greater than ourselves makes us better humans. Some people find that in religion. I find it in creativity.

For the next forty days I will submit my writing. Every day, I will send one piece of my work out into the world and will not think about whether or not it is accepted. Acceptance isn’t the goal, getting over fear is. And I will do this in the spirit of Lent. I am letting go of ego and sharing my work with anyone who may find it beneficial. I am strengthening my creativity and weakening the inner critic who tells me I’m worthless. And if I get 40 rejections, so be it. I’ll decoupage them and make a gorgeous collage.

 

 

Bury My Heart at Standing Rock

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images from North Country Public Radio

When I heard the news, I cried.

After a year of peaceful protest, millions of supporters, veterans providing protection, celebrities raising awarenes, and Native Tribes from all over the world joining together to fight for clean water, the oil company won. The North Dakota Access Pipeline is being built as I write this and there isn’t a damn thing we can do about it.

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Image from Democracy Now

Does money always win?

When I saw the police rolling in on miliatary style troop carriers to surround the Oceti Sakowin camp, complete with riot gear and assault rifles, I cried. How many times in our history have Native People faced this exact situation?

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Image from Voice of America

All the People wanted was clean water. That’s it. They didn’t want to annex the land back to the reservation or build a casino or anything more than a guarantee that they and their grandchildren would have clean water to drink. Clean water. One of the basic requirements of survival.

And now there’s no guarantee they’ll have clean water next year.

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Image from Native News Online

I feel powerless, angry and sad. I sent money to help the Water Protectors buy supplies for winter and then more money to hire lawyers. Thousands of people did the same. But none of us have enough power or wealth to fight oil companies and protect clean water.

Then I saw this: https://twitter.com/the_orangeidiot/status/834590610644402177  This the final message from Raymond Kingfisher, leader of the Cheyenne People and of Oceti Sacowin Camp. With tears in his eyes and a voice filled with emotion, he led the final prayers and thanked everyone for their support. He also promised that the fight wasn’t over.

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Image from WhiteWolfPack.com

This powerful video recorded on the last day of the protest shook me. If these people can walk away peacefully and proclaim the battle isn’t over, then so can I. If they can face that stark grief but still have hope, then so can I.

I will fight for people with disabilities, for equality, for compassion, for freedom of the press and of speech. I will fight for healthcare and education. And yes, for clean water.

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Image from CNN

I will fight for the welfare of future generations, just as the tribes at Standing Rock did.

Here is another powerful report from the last days of  Oceti Sacowin Camp from Intercept, by Jihan Hafiz: https://theintercept.com/2017/02/25/v...

And here is how you can help the battle:https://medium.com/@ShaunKing/please-support-these-5-standing-rock-legal-defense-funds-to-stop-the-dakota-access-pipeline-754be4674ec2#.b6nzwtxnh  (thank you Shaun King for putting this list together)

To my first love, Richard Hatch

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50

Today is my 50th birthday.

Last night I tried staying up past midnight to watch my 40’s disappear, as if being awake for the event would make it more believable.  But I fell asleep and when I awoke a whole new decade of my life had begun. 50. Half way, or maybe more than half. Do I really want to live to see 100?

My daughter has been sick with pneumonia and had to be hospitalized. Rather than getting  a massage and a manicure as I’d planned this past week, I spent several days by her hospital bed. Nothing mattered to me outside that room. On Tuesday I forced myself to go to work because I had a deadline, but I left early and rushed back to sit with her in that little room. When she was well enough to go home, I began round the clock home care, which included waking up at 3 AM to administer a dose of antibiotics. I didn’t care about sleep; I just wanted my daughter well again.

And then came my birthday.

I hadn’t wanted a party; going to the March on Washington was my party. But sleep was necessary. So on this first night of my 50’s, I am in a hotel room just a mile from my house (just in case…) so I can sleep and write and sleep some more. I used to be able to manage on 4 hours of sleep a night for months. Now, I can’t get through a day on less than 6. I must be 50.

My 40’s kicked my butt! I feel beat up and worn out and then left in the sun too long. I feel year after year of stress in my bones. Will my 50’s be more of the same?

The odd thing is I feel excited about a new decade. It feels like a new book in a series. The old book is done and now I start a new adventure. I’ve never been this age before. And I feel such freedom and relief, because I don’t care so much what other’s think. I’m not worried about making people happy or wondering if I’m doing something wrong. Other people’s opinions matter less than ever, which makes me feel strong. I know what is right for me. I still struggle and have a lot to learn to be myself, but at least I finally know who that person is.

Plus, it’s raining on my birthday. It hasn’t rained on my birthday in many years. When I was a child it rained every year and then sometime in my 20’s I realized my birthday wasn’t in Winter anymore. But today, it is cold and gray and damp, just the way I like it.

Rain is a good sign, and my daughter is getting stronger. Now to sleep and dream and regain some strength. It’s a whole new decade to explore.

Good night.

 

How it felt to be at The Women’s March on Washington

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I’ve been trying to write something profound about how it felt to be at the Women’s March on Washington on January 21st but the best I can come up with is…

Wow….

Seriously, if the word “wow” means mind blowing and life altering.

I met my friend Jennifer, another mom of a daughter with a serious medical condition, in New Jersey. She and I then travelled by charter bus sponsored by the Unitarian Church to Washington DC. The first time I said “wow” was at a rest stop in Delaware. There were hundreds of busses packed with thousands of excited women. We were all going to Washington DC that cold, foggy morning. The weather wouldn’t keep us home.

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In Washington, the bus crept into the stadium parking lot. After parking, we joined the long line of women, men and some children in pink pussy hats, carrying signs and talking excitedly. The security person shouted that the Metro was overwhelmed, but if we wanted to catch a ride, turn left and wait about an hour. “Or walk two miles that way.” Jennifer and I chose to walk. Thousands of us walked, filling the sidewalks and roads with cheerful protest songs. The march had begun and we weren’t at the event yet.

 

When we reached the Capitol building we stood on the steps and looked across the Capitol Mall, stunned by the hundreds of thousands of people we saw. It was a milling sea of pink capped people. Slowly we walked into the crowd, unsure of what we’d find. There were so many angry, frustrated, mobilized people, but instead of rioting or breaking windows, people were holding signs, singing songs, and talking to each other. A woman stood on the edge of the reflection pool, holding up a sign and described her sign as if she was Donald Trump. “My sign is soo huuuuuge.” “This the greatest sign of all time. I promise. It’s great.” “This sign will make America great again.” Everyone laughed and cheered.

[image error]We We pushed on, trying to reach the main stage where the speakers were, determined to catch a glimpse of Angela Davis. As we got closer to 3rd and Independence, people stopped moving and we were surrounded, shoulder to shoulder, pressed forward and then back by the waves of the crowd. No more room at the stage area. The larger than expected crowd of women had maxed designated space and spilled out into the surrounding roads.

Managing to turn around, we struggled like eels fighting up stream and made it to the line for the porta-potties. Might as well stand in line for 30 minutes; by the time it’s our turn to pee we’ll need to go. People chatted and laughed at signs or discussed politics. Occasionally a cheer would rise from the stage area and then spread outward to our line, passing by in a wave of sound. A famous person would walk through a cordoned off security passage. We caught a glimpse of Drew Kerry’s neck. More cheers passed through and onward and we wondered who was speaking.

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After using the porta-potties, Jennifer and I decided to try and work around the edge of the crowd to where the march was to officially start. Only problem: there was no edge to the crowd! We thought we found it but instead of widening, the pathway narrowed and we were squeezed with a thousand others onto a sidewalk between cement barriers. The crowd stopped. No where to go. We had to wait for the crowd to move as one before we could escape. But rather than feeling anxious, I was calm. The crowd stayed calm. People were impatient, but not enough people became agitated to cause any problems. One woman and her friends forced their way through the crowd with a force so strong she spun me, which then spun Jennifer and then the woman behind us, as if we were all attached to cogs!  Instead of getting mad, we three laughed. I glanced to the other side and realized I was pressed against a movie star. She and I chatted, but I didn’t  break her cover. On this day, we were all just women.

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At last the crowd was allowed to move and the march began! Jennifer and I unfolded our banner, a pink blanket with “Respect Young Women with Disabilities” embossed on it, as well as the names of young women we were representing. My daughter’s name was next to Jennifer’s daughter’s name, and next to those names were the names of daughters of friends. So many young women who are under threat by the Trump presidency. We walked in the street and chanted with others. We stood beside a teacher in front of the Department of Education Building and held up a sign that said, “Protect Our Schools.” Three teachers fighting for education. I’m sure there were thousands of teachers there that day.

The march lasted two blocks. As the marchers rounded a corner we crashed into another crowd of people being pushed back from the stage area. Jennifer and I realized we had to get back to the other side of the crowd so we could catch our shuttle bus on time, but how? We dove in and wiggled up stream again, but were tossed back over and over by the force of people. Finally we found a way through by squeezing behind food trucks and stepping over boxes. It took 45 minutes to travel one block. We were exhausted and still had to walk two miles to the bus parking lot.

Sitting on a curb to rest, we watched four young women take turns snapping pictures of each other. Jennifer got up and asked if they wanted a group photo. The women smiled and said thank you, then posed with their signs pronouncing, “Black Lives Matter.” I wasn’t tired any more. Their excitement and energy filled me with joy. These young women were probably in their early twenties and were thrilled to be a part of history. They believed down to their bones change could happen. My 50 year old jaded self wanted to cry, because in that moment, I knew how they felt.

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We rested again in Lincoln park after walking a mile and watched thousands of protestors walk by, heading back to their shuttle bus just as we were. Everyone was so happy. Tired, but inspired! The police were still smiling at the end of a long day and I realized they had been kind and respectful all day. I never felt threatened. The locals watched us walk by their homes and waved and cheered, as thrilled by our protest as we were.

On the bus, everyone slept, worn out from such an epic day. I now know what that word means too. Epic. A part of history. Something that has changed me. Reframed my way of looking at the world. And all I can say is…

Wow.

Why I March

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I am packing for my trip to Washington DC.  I have warm clothes, a good coat, comfortable boots, and a sign that says “Respect Young Women with Disabilities.” I’m meeting another mom of a special needs child and together we will join The Women’s March on Washington on January 21st.

Why am I marching?

Because our daughters, and thousands of other children and adults with disabilities, need health care.

Because all daughters deserve respect, especially from our elected officials, and no one has the right to grab or molest them.

Because Betsy DeVos, the nominee for Education Secretary, doesn’t know what IDEA is or why it is important.

Because Jeff Sessions is a known racist but will be the Attorney General.

Because we are all immigrants and the children of immigrants. Immigrants and slaves built this country and immigrants sustain it. The only people who aren’t immigrants are Native Americans.

Because religious intolerance is anti-American.

Because people I love are Gay, Lesbian and Transgender.

Because climate change is real and if something isn’t done to stop the damage to our planet our grandchildren will suffer.

Because I am a rape survivor.

Because Mr. Trump has repeatedly shown his disdain of women and people with disabilities.

I walk for those who can’t, or who are unable to travel to Washington DC. It is my duty as a patriot to stand against injustice and fight for those unable to fight for themselves.

I am marching against hate.

How to be Kind.

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

 

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.