For the UnMothered Children

  Mother’s Day. Bah! Humbug!

Mother’s Day raises old ghosts.  Those childhood ghosts crash into my bedroom and make me feel like I’m eight years old again and all alone in the dark. It doesn’t matter I am actually 49 and able to take care of myself. The specter of abandonment wanders out of my closet and won’t leave me alone.

There’s no need to explain or share details about my childhood. Those who experienced something similar know how it feels to grow up lost. My childhood doesn’t come close to what other’s coped with, but it left me scarred regardless. It left me with a deep hunger nothing can satisfy. I long for safety, security, and the knowledge my mom will be there no matter what. I accept it wasn’t her fault, but that can’t change the feeling. I’m a mom now, and my daughter has grownup knowing she is completely, unconditionally loved. But my sadness won’t go away.

The sadness gets stronger every Mother’s Day. But This year will be different. Instead of mourning what I never had, I will celebrate what I did. 

I mothered myself.

I grew up troubled but still believed in myself. I was afraid, but kept trying. I learned and grew stronger and trusted despite how many times I was shown I shouldn’t. I taught myself that I matter. I found ways to feel more secure. I made a million mistakes but learned from every one. I never gave up on myself.

Which is what we want from our moms, right?

So this is for all the motherless children. For all who mothered themselves and fell down and kept trying and never gave up. For the ones who think no one will love them. The ones who became parents and figured out how to raise those children. 

Buy yourself some flowers. You are wonderful.

 Happy Mother’s Day to us all. 

The Mito Walk in the Rain

  
100 people gathered in a parking lot at Bishop Ranch 8, San Ramon, California, to walk in support of people with Mitochondrial Disease. For the first time in the five years the walk had occurred, it rained. We stood together under shelters and awnings and waited. Every team had raised money, so we had to honor those pledges and walk. But it was cold and all the teams were missing members.

My daughter Rhia, the person on our team with Mitochondrial disease, sat in her wheelchair under her polka dot umbrella and cried. She wanted to walk, but hated the rain. Her hands were cold even in the pockets of her puffy, blue coat. Her dad finally loaded her in the car and drove her away to find hot chocolate and a movie. So there I stood, the sole member of Team Rhia after the rest of my team had cancelled the day before. 

The announcer called Team Rhia to start walking. I stood beside her. She kept calling. I said, “Team Rhia right here,” and laughed. Then I stuck up my umbrella and walked the one mile route.

Other teams in matching t-shirts gathered and cheered each other. Maybe I should have been sad no one cheered for me, but walking alone was oddly peaceful. 2 wild geese watched me and honked as I passed the half way mark. “Welcome back,” I said and one goose flapped his enormous wings as if showing how far he’d travelled. Because it was just me I made good time and finished the 1 mile route in 15 minutes. Nice not to have to manage a team of wayward walkers. 

Standing in the parking lot again under the shelter at the registration table, I watched as the teams slowly returned. That’s when I felt sad. Why were we doing this? Why were parents who had lost children showing up every year to walk around a business complex? Was this going to make any difference? I saw the parents who’s daughter had died last year at age 14. No cure soon enough for her. Would there be a cure for my daughter? For anyone’s loved one? Would the meager $400 dollars my tiny team had raised do any good? 

What else can we do? We’re not doctors, or God. We are powerless to change what our children endure. Maybe walking alone in the rain looks pointless, but it gives us something to do and we support each other. We are all gathered together in a parking lot in San Ramon because for a few hours each year we are not alone. We have hope.

I opened my umbrella and made another lap. 

Why I won’t run to Canada

My daughter cannot move to Canada; she has multiple disabilities so is considered a drain on resources. No country anywhere will accept her. She is a disabled woman trapped in the United States, a country that doesn’t want her.

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(photo by Diane Davis https://www.facebook.com/dianedavisphotography/info/?tab=page_info)

So when you talk about moving to Canada if Trump wins, think about what that means. Think about the people who don’t have that option. They are the people who need you to fight for them.

The ability to leave a bad situation is often based on ones resources. Do you have the money to go somewhere else? Do you have people who will help and protect you? You might wonder why a  person living in a bad neighborhood doesn’t move to a better one. Many times, they can’t. If you can, you are blessed. Don’t assume others have the same chance.

My daughter is one of those “losers” Donald Trump talks about. She can’t work and she is dependent on other people to care for her. I am one of those losers because I need social service supports and welfare to help me take care of her. Call me a welfare mom and I’ll agree proudly. We are not “winners,”as Trump would say, and there are a lot of people in this country who are the same.

But that doesn’t make us bad people. That doesn’t make my daughter worthless.

My daughter can’t fight for herself, but I can fight for her. And I will stand by her and fight with all my strength to protect her from the rise of hate and intolerance permeating the United States. Racists and fascists will not touch her.

Will you help? Or will you hide?

Rare Disease Day 2016 


What is it like to live with a rare disease? This is what my daughter says:

“Doctors try to help but no one does.”

“I don’t know why I have ataxia and I don’t know why I can’t hear no more. No body does.”

“I have to go to the doctor a lot. That’s boring.”

“Everybody wants to poke me and give me a blood shot (blood draw)!”

“I used to be able to walk and not have to use a walker all the time but now I can’t and nobody know’s why.”

“Why is there no medicine to make me feel better?”

As her mom, I struggle to answer her questions. But what can I say? She is now 20 and has lived with an undiagnosed mystery disease her entire life. The closest label her illness has is Mitochondrial Disease. But which one? What type? How degenerative is it? How long does she have?

We don’t know.

In my own world, writing

Blogging? What’s that. Right now I am immersed in my own, silent writing. I’m hidden away in a world I’ve created through language and ink. It takes focus and dedication to create this world, so I don’t want to wander away for even a brief moment. If I do, I might lose my way. After months of false starts and ideas, I’ve found the path through my own little forest of creativity. Writing it down is like following a candle’s flame in the distance; keep the light in sight and you won’t get lost.

Occasionally I need to trust I’ll find my way again and leave my own world. The real world with all its problems and joys grabs my attention. It’s a tricky balance: imagination and practicality. I need to stay grounded and aware of life, while at the same time protect solitude so I can write. I don’t want to tune out reality so much that I lose touch with time. But I also don’t want to get bogged down in bills and politics so much my imagination suffers. My awareness is juggling intuition. I write, therefore I am.

Because time to write is such a struggle, I tend to hang on to that state of mind with all my might. Nooooooo… I don’t want to pick up my daughter from school or return a phone call or wash another towel. I want to lock myself in my room and write. I’m a mother and a wife and a dog owner and I have a garden. I love my family, but just like all moms, I tend to give them all too much. So I cling to writing as if it’s the only thing that’s really mine.

When I’m engrossed in writing my book, I don’t blog. I know we’re “supposed” to; gotta keep building that audience and platform, the experts say. But when writing time is fleeting, it’s hard to care. I just want to write; let my readers find me on their own.

My own writing world is calling. Time to chase that candle flame again.

A third into my book I have to ask: what am I writing about?

Writing, writing, writing… wait. What am I writing? What is the point? Who am I writing this for? Why am I writing this book?

Ak!

I was doing really well for several weeks, writing every moment I had in bursts of focused energy. The first section of my book finished, six lovely chapters focused on the first few years of my daughter’s life. And then…

The focus vanished. The doubts set in.

One complaint about “special needs memoirs” is how parents take over their children’s stories and make it all about them. The child is lost under the parent’s struggle. I don’t want to fall into that trap. My daughter is the one who struggles daily with her disabilities. This is her life and I am telling her story in the hope it will help others. But am I actually including her in the storytelling, or just rehashing my own fears and triumphs?

I don’t know.

So now here I am, staring at my screen and the 100 pages I’ve already written, unsure whether or not to continue. Do I stop? Start over? Keep going? Chuck the whole book and go back to writing plays? Am I able to write the book I envision? Perhaps I don’t have the skill. But I have to try.

I’ll follow my own advice and go back to that basic question: who am I writing this for?

Answer: Parents of children with disabilities.

Why am I writing it?

Answer: Because I want to help them find joy raising their children and not be overwhelmed with grief and fear.

How will I do that?

Answer: I don’t know.

Any ideas?

 

 

Goodbye David Bowie. I will always love your music.

Christine and I were best friends our freshman year in high school, and one day she played a David Bowie record for me. Of course I knew who David Bowie was, who hadn’t heard his music in 1982? But I had never actually listened to his music until that day when I was 15, lying on the floor of my friend’s bedroom. Her room was decorated with Bowie posters and she explained why she loved him so much. After then, I did too.

Here is one song I fell in love with. His voice is brilliant.

Before then, I knew David Bowie as Ziggy Stardust, a bewitching gender-bending artist I listened to as a kid in the 1970’s.

David Bowie’s artistry, voice, creativity and innovation earned my respect. He stood by his work and continued to push the boundaries of art, gender, and music. Never one to just settle on his laurels and make cash, as some musicians do when they reach a certain level of “legend,” David Bowie continued to create art. He was one of the greatest artists of the 20th and early 21st Centuries.

Thank you Mr. Bowie for sharing your genius. And thank you Christine for sharing his music with me.

I wish you had more time, David Bowie. Imagine what you could have created.

I hate cancer.