Terena Scott's Blog, page 5

Holiday Tired

I am staring at the twinkling lights hanging from my ceiling. Iridescent stars reflect rainbows as they shimmy in the warmth of the heater. More stars drape the doors and windows. I love the effect and wonder how long they’ll stay up before dust makes them sag. The lights decorating people’s houses and fences are my favorite thing about the Winter Holidays. Even one strand of large, colorful bulbs with a few of them burned out looks beautiful.

This past Sunday I took my daughter Christmas shopping. She proudly used her own money, earned from shredding documents for me and our neighbors. She also created her own list this year. In the past I would help her remember all the people she wanted to buy something for, but this year she made her own decisions about who gets a gift. I wrapped those gifts for her last night and then sent some in the mail today.

If I focus on how much Rhia loves Christmas, I can combat the weariness I feel. I look at the picture I took of her when she talked to Santa three weeks ago and he gave her a soft, pink unicorn. She is glowing with happiness! I listen to her talk about seeing her grandmother and cousins every time she points to the date on her calendar when we fly to Louisiana. Just thinking about the trip makes me tired, but it’s worth it because Rhia is so happy.

Every parent I know, with and without a disabled child, is tired. The holiday season makes us all a little manic. We work to squeeze every drop of “holiday magic” into everything; the shopping, cooking, decorating, traveling, and socializing. We spend too much and do too much and smile too much. And then we eat too much, drink too much and fight with our relatives too much. All of this must accomplished with a smile in less than four weeks.

Add a disability to the mix and tired is increased by a factor of ten.

I just want to climb into bed, pull my blankets over my head, and sleep until December 30th. I suspect half of America feels the same way.

Rhia needs my help, so I manage to get it all done. And when I focus on her smile and the fun she’s having, I feel the tired release a little. I see more of the beauty and less of the chaos. Taking a deep breath, I address our holiday cards tonight.

But I refuse to listen to Christmas songs while doing it.

Traffic, Sunlight and Mud Puddles

Sitting in traffic, I glance to my left and see water being reflected onto three thick, concrete pillars that hold up the highway overpass. It rained yesterday, and flashes of sunlight bounce along the top of large mud puddles in the construction zone. I am sitting in a long line of stopped cars waiting for a dump truck to move out of the way. But as I sit in my car, I am awed by the beauty of a simple reflection. The light bouncing off the puddles dances against the concrete with shimmering rainbows. Yellow, blue, green and orange sparkle against the gray concrete pillars as if they are illuminated by a disco ball half buried in the mud. The light is so bright the rainbow colors flash against the concrete of the highway far above me.

The dump truck finally moves and the road crew waves traffic forward. I’m actually sad that I need to move away from the spectacular light show under the overpass.

These are the moments my daughter has taught me to look for. I could have glared at the dump truck blocking the road and complained about the constant road construction that makes navigating traffic even harder. Instead, a flash of sunlight in a large mud puddle caught my attention and for several minutes I was transfixed by its simple beauty.

I can fixate on her illness, or I can focus on the joy she exudes every day, despite her struggles.

Focusing on joy and beauty doesn’t ignore the reality of illness, or of muddy dump trucks. They are both frustrating. But they are not the only reality.

Next to a traffic jam due to road construction, there is a light show created by sunlight and mud puddles.

Pay attention, or you’ll miss it.

An anger bigger than the sky

My lungs burn from fighting the screams. My fingers pulse from the rush of blood through my arteries. Tears press my eyes as I fight for control. Fight the rage. Don’t let it consume me.

I walk. I pace. I clean my house. I clench my jaw until my teeth beg for mercy. I cannot let the rage out to play.

This anger is not just known to the parents of children with disabilities; every parent understands. Our children are in need and we are powerless. It doesn’t matter if your child can run across the playground or not.

The only difference is how often we feel the anger. How often we see the injustice. How often we must fight for our children’s basic needs. Constant fighting creates constant anger. Constant anger creates rage.

It is a rage that could burn down an entire office building with one glance. We’d love to watch the bureaucracy that impedes our children’s well-being burn to the fucking ground.

But we can’t do that. Being angry doesn’t help us get what our children need. We’re called irrational parents and ignored if we express anger. So we swallow it and let it burn us to the ground. We become shells of ash and bone so that we can smile, sign another form, make another phone call, and manage the chaos that is the American healthcare system.

We clench our jaws and beg for help. For our children. For ourselves.

We need a break. A chance to breath. An opportunity to clear out the debris in our souls that block the sun’s warmth. We need someone else to hold this anger for a little while and let us rest.

It’s easier to call this anger “anxiety.” We’re anxious from the stress of caring for our special needs kids. Anxiety is acceptable. Anxiety can be managed. Medicated. But anger…?

If we could let anger go for a brief moment, perhaps we could learn to direct it in useful ways, rather than swallowing an anger bigger than the ocean. Bigger than the sky. Bigger than us.

I take another deep breath and let it absorb the chaos in my blood, my singing blood that is filled with fear, depression, and rage. I send my anger out into the night where it mixes with the anger of a million caregivers who are up too late watching over our loved ones: parents, spouses, children, friends.

We are tired. We are furious. And we are no longer silently being your martyrs.

Joy is a Tango

Happiness is a feeling. It’s the tingling warmth spreading from your heart throughout your body that makes you smile, perhaps even giggle. You feel it at your birthday party when your best friend gives you the perfect gift. Or when you find your favorite ice cream on sale and later take that first delicious, frozen bite. It’s what you feel when your lover holds you tightly. There is happiness in your tingling toes.

But joy is an action. A verb. Joy requires movement and engagement. Like learning a new dance, Joy takes practice.

If happiness is a waltz, Joy is a tango.

Joy reaches out to embrace you, first with one open palm against yours, followed by a strong hand on your back. You breath deeply together and then slowly shift your weight from one foot to the other until you and Joy are in perfect sync. Only then will Joy take a step and lead you where Joy wants to go. You feel calm and wide awake at the exact same time as long as you stay out of your head. Don’t anticipate where Joy is leading, just go.

Over time and with practice, the tiniest glimmer of beauty hidden inside the ordinary will reveal itself until everything around you is transformed. You’ll wake up in the morning and see the sunlight spreading across your ceiling, forming a prism of shadows and glare. You’ll hear a bird sing an opera when you walk out the front door. It will become easier to breath at work simply by feeling your own heartbeat in your fingertips.

You’ll stumble of course. Happiness and Joy will get mixed up in your mind and sometimes you’ll hunt for anything joyful and feel only emptiness. Keep practicing. There will be days when you’re gasping on the floor, weeping with a broken heart, and you’ll hear a child laugh somewhere outside. That laugh will reach you, enter your bones and fill you with light. Your heart will still be broken but you will carry it easier.

Joy doesn’t take away pain, it just helps carry the pain for you.

Joy doesn’t let you hide from life, it helps you fully embrace life.

Joy doesn’t ignore the misery in the world, it fills your spirit so you can face that misery and do something about it.

The only thing that joy requires is that you open your heart to it, which is the most terrifying thing in the world. Because if you open your heart that much, the secret self you keep locked up inside might come out to play. Then what would happen?

Take a deep breath. Joy will lead you safely. Just dance.

Blue Fingernails

Image description: chipped, blue nail polish on the fingernails, with those fingers curled against the palm of the hand.

“You must be reliving your Goth days,” she says with a grin.

I look at my chipped, dark-blue fingernails and shrug. “Not really,” I say. “It helps Rhia see my signs when I’m signing to her. It’s practical. And it’s my favorite color.”

Before the conversation gets too uncomfortable, I say, “But it is fun to embrace my inner Goth.”

The conversation changes to Goth fashion and the different types of Goth that exist today. She calls me a “Whimsy-Goth”. I look it up on Pinterest and decide she’s right.

What is avoided is the deeper reason I’m wearing dark blue nail polish every day.

Rhia is losing her eyesight. She needs a higher contrast on my fingertips to understand my sign language. This is a reality that is too terrifying to consider for long, so I’d rather discuss fairy wings on Whimsy Goth girls.

I thought about wearing classic, red nail polish, but then I decided to try dark blue. It seems to help Rhia see my hands better. And deep, dark blue is my favorite color. It reminds me of the horizon when the sun has set and the stars have just become visible. I can look down at my fingertips and think of blue velvet. Dark blue glass. The cold blue of the Pacific Ocean.

Seeing my favorite color on my fingers is soothing, which balances the very real fear that one day Rhia won’t see my fingers at all. I paint my nails a color that makes me smile, reapplying almost every night to cover up the peeling and chipped polish. I think I’m ready to go to a nail salon and get gel polish that lasts longer. Blue nail polish is now an adaptation for my daughter’s disabilities.

I can simply mourn another loss in my child’s world, or I can mourn and adapt by painting my fingernails blue.

I painted my nails blue.

Shame

I don’t want to be my daughter’s caregiver anymore.

And with those words, my body flushes with hot shame.

How can I write that? My daughter still needs me and probably always will. She needs me to be her strength and protection. Her interpreter. Her best friend. She needs me to fight the three-headed dragon called health care in America with endless determination, never giving up and never backing down.

So I will.

But I don’t want to anymore.

I don’t want to spend another day locked in her Disney princess bedroom watching other people’s children grow up, go to college, make mistakes, fall in love, get jobs, get married, have their own children and eventually stand on their own two feet as fully grown humans. I don’t think she wants that either. Watching her stare out the window, I see how much she wants to be free too. She’s an adult now.

As she grows, she needs me more, not less.

As I grow, I resent that need more, not less.

Shame returns, catching in my throat. I’m supposed to be silent about the rage I feel when the walls of this house are too thick. I’m not supposed to tell anyone that I dream of running away every time I get in my car. Maybe I won’t go to work… maybe I’ll just keep going until I run out of gas money and then I’ll change my name and never look back.

I will always look back. I will never leave her.

Today while making my daughter a tuna fish sandwich I suddenly sat on the floor and wept for every single lost dream she and I have. The weight of fear, rage and grief pressed me so hard my knees ached against the linoleum floor. Then I heard her calling me. “Mom!”

I stood up, because she was hungry and needed that sandwich to fuel her damaged mitochondria. I pressed the tears back down where I keep them tightly hidden between my heart and diaphragm. My body still shook as I finished her meal but once I brought it to her the tears were gone.

Not the feelings, though.

I don’t want to be her caregiver anymore. I want to be her mom.

Shame keeps every caregiver silent. But I’m tired of carrying that silence as well as the chronic grief.

Today, I am writing this for every caregiver who loves their child, parent, partner or friend deeply, but is worn out from ignoring their own dreams. I’m ashamed, but I know I’m not alone.

Neither are you.

Creativity is an Addiction

I am writing a book that takes all of my creative energy and focus. That means I stopped blogging (a year ago!) so I could concentrate on writing a manuscript.

Tonight, I felt the familiar compulsion that grows from the center of my solar plexus and presses against my ribs and if I don’t write what I’m feeling I’ll pace and wander my house for days. My muse demands my attention. I sit at my untidy desk and press my fingers against this slightly sticky keyboard and wait for instructions. Write something. Write anything! I have spent several weeks editing my book and my muse is bored with the mechanics of language. My muse wants to create!

My book is now a complete, 230 page manuscript with a clear beginning, middle and end. It has theme, structure and focus. But the language needs help. There are too many passive words and awkward sentences. I’ve circled “was” “were” “would” and any other word that separates the reader from the scene. It’s slow going… there are a lot of dull words. And the entire book is lacking sensory detail. I’m going through each scene to mark the places I can add a scent, a texture, a sound… anything to make the place and the people come alive. Right now, they are thin ghosts from my own memory.

All of this word by word contemplation has utterly stopped my writing. No, that’s not right. I am writing. Editing and revision are a part of writing. Questioning every scene and sentence is what helps create a good book. But it also means I haven’t had time to just relax with my pen or my laptop and write words that flow creatively from that deep part of my soul.

I am a caregiver and a teacher as well as a writer, so I have to manage my time carefully. Right now my time must be spent on editing and revising the book I am writing because I want it to be good. I want people to fall in love with the characters and feel the story. That means work. Lots and lots of work.

But there are some nights, like tonight, when I need to release the creativity from my bones and let my muse have fun. My muse is patient. She knows eventually I’ll give in to the hunger.

Creativity is an addiction.

I doubt I’m the only artist who feels this.

Happy Gratitude Day

“I just don’t know what to celebrate on Thanksgiving,” said my friend. “I want to spend the day with my family eating Turkey, but I hate what the day represents to so many of my friends.”

I understand completely. How can we celebrate a day that marks the beginning of the end of the Native Peoples who lived here before my ancestors came and murdered them? And yet the tradition of gathering with friends and family to celebrate what we’re thankful for has a strong place in our culture. I’ve celebrated this day since childhood. How do we make peace with it?

Take out the Pilgrims and Plymouth Rock and all that BS about the friendly Native Americans. Focus on what is real: Gratitude. What are you thankful for? Really look at it. Because that’s what we’re really celebrating on this day. Look at everything you have and say “Thank You.”

Thank you for my health. Thank you for the food on my table and the friends in my life. Thank you for indoor plumbing and clean water and the roof over my head. Thank you for the generosity of strangers who help me every day. Thank you for all the little things I take for granted and the big things I call gifts. Thank you for my life.

I acknowledge the crimes of my ancestors and I am grateful that I can make amends by learning and doing better. That’s what our country is struggling with right now, and we need to struggle with it. Glossing over the atrocities by celebrating a myth perpetuates those atrocities. The reality is that our country is young and volatile and full of bloodshed. It is also beautiful and hopeful. We can celebrate our history and mourn those who died from that history. Eat that turkey and pumpkin pie, celebrate your family, but leave Plymouth Rock out of it.

Today is Gratitude Day. Be grateful for all that is good in your life.

Traveling Outside My Comfort Zone

photo of a large steel sculpture of a fish with a red heart near its tail. white snow is on the ground and there is more light snow falling.

I’ve recently returned from the first vacation I’ve had in four years. And it wasn’t just any vacation… it was a bucket list vacation. I traveled to Chena Hot Springs outside Fairbanks, Alaska with one of my closest friends to see the Northern Lights.

The first time I went to Alaska was in the summer of 1988. My boyfriend and I drove the “AlCan” from Santa Rosa California to Fairbanks Alaska in a dark brown Econoline van. There was a bed in the back and bug netting on the windows to keep from getting eaten alive by Alaska’s famous mosquitos. It was an exhausting, beautiful adventure I will never forgot, even though my boyfriend and I split up the following year. I swore I’d go back to Alaska one day and finally I did, this time in the Fall.

Fall in the Alaskan interior is icy but not yet frigid. The snow is new and it sparkles like it is covered in silver glitter. The sky looks dark blue against all that crisp white. I had no idea how much I would love the sound of snow under my feet; it really does crunch! I’m a California girl who doesn’t ski so couldn’t imagine how cold 12 degrees really is. But once I figured out how to wrap a scarf properly to keep the cold off the back of my neck, I fell in love with the touch and scent of that shivering, dry air.

And we saw the Northern Lights! It was a cloudy night so we assumed we’d miss them, but at 1:30 in the morning, the clouds thinned and a section of the Western sky opened. There was a bright white glow, tinted yellow, with absinth green streaks radiating from the top and spreading across the sky over our head, softly visible through the thicker clouds. It was quiet and still in the night and the cold pressed against my snow boots and two pairs of socks but I was transfixed. I didn’t care that we only saw one tiny piece of the Aurora Borealis; I saw the Aurora! A child hood dream at the top of my bucket list had come true.

photo of a woman in a red coat leaning against a large steel sculpture of a dragon. There is snow on the ground and on the sculpture.

This trip was more than a bucket list adventure, it was also to test my ability to let go of control and leave Rhia at home for several days. I have left her with one of her dads for weekend now and then, but this trip was different. Rhia’s needs are more complex and her health more tenuous. I flew a thousand miles away to the wilderness with limited cell service, trusting that my father, her dad and both of her caregivers could take proper care of her and handle any emergencies that might happen. I was nervous and felt guilty, but I went.

And Rhia was fine. She missed me, but instead of punishing me with angry outbursts and demands as usual, she asked, “Did you have fun with your friend?” My dad said she only yelled at him twice when he forgot to do something. Nothing bad happened when I left. She didn’t fall or get sick or stop breathing or any of the hundreds of terrors I imagined before I forced myself to pick up my suitcase and go to the airport.

Rhia has matured and I’m learning to let go of being in control of her well being. Perhaps I can go on another trip next year, maybe a longer trip, even farther away.

Where in the world should I go?

photo of four yellow sunflowers encased in a rectangular block of ice.

An Open Letter to my Stalker

Congratulations. You win. I’m scared. You swear that’s not what you want but after I’ve repeatedly asked you to leave me alone, what else can I believe from your actions? I think you enjoy messing with my head. And because of you, I almost stopped writing. I almost deleted my blog and considered changing my name when my book is published. But even though I know you read every word, which makes me cringe, I won’t be silent. Not ever again.

I tried responding to your messages on Facebook, but for some weird reason I couldn’t write back to you. I could only read the messages you sent. It looks like when I blocked you, Facebook decided that meant you could keep writing me but I couldn’t write back. Perhaps that’s for the best; there are thousands of people experiencing this same situation, both as the person being stalked and as the person who is obsessed. Maybe this letter will help others, too.

I was sorry to read that you are in so much pain and I truly hope in time you find some peace. However, you are writing to me as if I’m still that scared 19 year old girl you locked in the bathroom and threatened to kill. I assure you, I am not. That was 35 years ago. The little girl is gone and in her place is a 55 year old woman with gray hair who is fully capable of taking care of herself. The only person still in that bathroom or experiencing the harm you caused is you.

You keep asking for my forgiveness. I can forgive you as a human being because I know you were struggling with substance abuse, but I cannot forgive your actions. The only person who can forgive you is you. You also say you are in a program and want to make amends to me. You’ve done that, several times. Stop trying to make amends. They are causing pain. Go back to a meeting and focus on Step 9:

Made direct Amends to such people wherever possible, except when to do so would harm them or others.

The best way you can make amends to me is to stop trying.

You’ve mentioned my daughter recently, writing how beautiful she is and how much she reminds you of me. I need you to take a moment and think about what you are doing. Now, imagine you are in a forest and you see an adorable bear cub. You don’t mean any harm, you’re just looking. Suddenly, Mama Bear appears from nowhere to defend her cub. You have zero intention of harming the cub but Mama Bear doesn’t know that. What is the most dangerous creature in the world? A mother defending her offspring.

I am that Mama Bear. Let that image replace the image you hold so tightly of me at age 19. I am not writing this to embarrass or threaten you, I am simply telling you or the fiftieth time in 20 years, in this open letter that I know you are reading right now, to stop contacting me.

Forgive yourself. Move on with your life.

I have.