Tag: hope

Posted on in life

Mourning more than Ruth Bader Ginsburg

I am at a candlelight vigil for Ruth Bader Ginsburg. Holding my battery operated rainbow tea light in the palm of my hand, I think about RBG and how hard she fought against time and cancer. She was a small, elderly woman with the weight of democracy on her shoulders who kept fighting for us until her tiny body couldn’t support the burden one more day. She is gone and I am now very afraid for the future of many of the people I love.

More people are coming, which is both good and bad. I haven’t been in a crowd in over six months and even though we’re all outside and everyone is wearing a mask, I’m nervous. Perhaps I shouldn’t have come. I didn’t go to the Black Lives Matter marches for fear of exposing myself to COVID and then taking it home to my daughter. Across the street, two police cars are parked and the officers inside are staring at us. I look at the people around me and wonder what makes the police so watchful. This crowd is mostly white, middle aged, upper middle class women like me. The most radical thing here are the four women wearing pink pussy hats. Looking back at the police I feel sadder.

I came tonight because I need to take a moment from my fearful, pandemic driven life and grieve. I mourn the 200,000 Americans and the millions killed around the world by COVID. I mourn lost Black lives. I mourn the thousands who lost their homes to wildfire and those who died when they couldn’t escape. I mourn for the elderly trapped in nursing homes and the children kept away from their friends. I mourn for everyone who is terrified and lonely and has no idea how they’ll survive another day.

I wonder if Ruth felt that way? For all her notoriety, she was still a human being fighting cancer during a pandemic and trying to keep her job. Did she have doubts? Was she lonely? Did she cry when she listened to the news too?

Three young men approach me and one asks, “What’s going on? Why are all these people here?”

“This is a candlelight vigil for Ruth Bader Ginsburg,” I say. “She died yesterday. “

“Who’s that?” he says. The other two shrug. So I tell them about RGB and why everyone is so upset and what’s at stake with the Supreme Court. I explain what she fought for and how she protected Civil Rights. They’re impressed.

“Did she believe in Black Lives Matter?” another young man asks.

“Absolutely!”

One of them will turn 18 in two months, too late to vote in this election, which makes him mad. We talk more about voting and why it matters and then they wander away but stay close to the perimeter, talking and watching the vigil. RBG would be pleased.

More people are coming and it’s getting harder to keep my distance; time to leave. I look at my rainbow tea light change from red to purple and smile. A rainbow candle for RGB. I wish it was safe to stay and share the grief and fear with other people and I realize how much I miss this. I have been grieving all alone for too long, just like everyone at this vigil I suspect. I walk away from the crowd, get in my car, and drive back to isolation.

Posted on in disabilities, health, holidays, life, medical, mitochondrial disease, strength

Rhia almost left 8 years ago

Rhia drinking a hot chocolate at Starbucks, age 20

8 years ago, Rhia spent Easter in the hospital, hooked up to IV’s and undergoing too many tests, because she had almost died. Two weeks earlier she’d had the flu, but even when the virus ran its course and the fever vanished, her body didn’t recover. She slept all the time, could barely speak, and her eyes became blank and unseeing. Then she started choking on water. We rushed her to Stanford Children’s Hospital and they admitted her for Metabolic Distress.

It took a couple of days to stabilize her and a full week before she could go home. It was during that time we got an official diagnosis for the cause of her disabilities: Mitochondrial Disease. Her doctor’s had suspected it was “Mito” but until she was hospitalized they weren’t certain. They still weren’t; the tests came back negative but all the symptoms pointed to Mito. The possible causes of her ataxia and degenerative neurological symptoms had been narrowed to the spectrum of Mitochondrial Disease.

But what did that actually mean for Rhia and her health? Would she recover from her medical crisis?

They let her go home when she could swallow water and other liquids again. She still couldn’t eat food, so she was referred to a Speech Therapist to relearn how to swallow again. If she didn’t recover, she would need a feeding tube. Time would tell…

Later, we were told if she reached the age of 20 it would be a miracle. She was 16.

8 years have passed and Rhia is still here. She turns 24 next month, and thankfully she did learn to eat food again. And she’s still walking, although I swear she’s walking because of tenacity, not strength and coordination. She never fully recovered her energy and strength from 8 years ago, but she and I learned to manage her new “normal” and find ways to cope with her increased fatigue. Some days are great; she sings and laughs and loves exploring her new city. Other days she can hardly hold a crayon in her hand. She’ll sit and stare into space as if all her energy is needed to stay upright. It can switch back and forth every hour.

We roll with it because this is a part of Rhia. No matter what, she keeps smiling and I keep trying. Both of us get frustrated sometimes, but we both find a reason to laugh. It’s impossible to stay sad for long around Rhia.

Rhia smiling, wearing glasses, and drawing with a large marker.

How long will she stay here with us? No one knows. Her doctors are amazed and thrilled to see her thriving as well as she is. Who is this remarkable person who keeps surpassing everyone’s expectations? She is my daughter and I am so proud of her.

Thank you for these extra 8 years. I treasure them all. And I will treasure all the years we still have together.

Posted on in ASL, caregiving, deaf, disabilities, Disney, life, parenting, special needs, strength

The Day Rhia Declared She Can’t be a Princess Anymore.

I found Rhia crying in her room.

“Sweetie,” I said, taking her in my arms. “What’s wrong?”

“I can’t be a princess anymore,” she said.

“Of course you’re a princess. Why do you think you’re not?”

“Because I can’t walk anymore and princesses don’t have ataxia! Have you ever seen a princess with ataxia? No!” She buried her face in my chest and cried harder.

I wanted to cry, too. Damnit, why does this have to be so hard for her? Why does she have to keep losing ground a little bit every day? If she has to be blind and deaf, why does she have to notice how all her friends are grown up and living there own lives while she gets weaker and has to stay home? What the hell do I say to her?

Rhia is passionate about Disney, especially the princesses. Cinderella is a personal friend and Rapunzel was at her recent birthday party. She wrote them all a letter and they wrote back. When we go to Disneyland, all she wants to do is talk to the princesses.

“They remember me!” she declares. And a few do. Over the years, we’ve met the same actresses who surprisingly remember Rhia out of the thousands of kids they see each day. There’s just something magical about Rhia, something that draws people to her. Plus, she has a gorgeous wheelchair with flower-print wheel rims. Rhia plays with her princess dolls every day and talks to them as if they are alive; her imaginary friends are her closest friends.

But on this day, those imaginary friends failed her.

“Listen to me,” I said, urging her to look up at me; she has to look at me to see me sign. “You are a princess now and always. Cinderella herself said you are a real princess and you have the certificate to prove it!”

“But that was before…”

“No. Once a princess, always a princess.”

“But I can’t walk any more.”

“So what? Cinderella didn’t say you were a princess because you can walk. She said you’re a princess because you’re kind and smart and funny. You care about people and are a good friend. You are helpful and creative. And you love to sing.”

Rhia had stopped crying and was listening, but still didn’t look convinced. “But I’ve never seen a princess with ataxia.”

“I know baby, and I’m sorry about that. I’m so sorry everything is really hard for you now. You are a princess because you are strong and try hard. All princesses are strong. You are a princess forever!” I hugged her tighter.

She sighed, turned away from me, and picked up her Ariel doll. I kissed her head and left her to think about what I had said. I overheard her ask her doll, “Do you think I’m a princess?”

I prayed somehow that doll said yes.

Posted on in disabilities, mitochondrial disease, special needs, strength

Looking for Hope at the UMDF Conference

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(image from UMDF.org)

The United Mitochondrial Disease Foundation conference was in Alexandria VA., next door to Washington DC. Last year it was in Seattle and I brought Rhia to meet other people with “Mito”. This year, I went on my own. I was scheduled to give two talks about vision loss and spend a day advocating for health care in Washington DC. There was no way I could be Rhia’s caregiver and interpreter and teach and advocate. And last time I missed most of the talks about mitochondrial disease because I was busy helping Rhia meet other people. This time I was going for me.

I wanted to learn and meet other family members. Rhia has been declining both physically and mentally this year and I wanted to see if there was any new information to help her.

There wasn’t.

Without a specific diagnosis of a specific mitochondrial disease, there is very little anyone can do.

A lot of people with Mitochondrial disease know exactly what type they have, down to the specific genes affected. Leigh’s disease, PDCD/PDH, MELAS, Luft Disease, and 40 other types of Mitochondrial disease have been identified. There isn’t a cure, but there are treatments to help with symptoms and a frame work for what to expect. People at the conference tend to get together into “mito” groups, bonding over their diagnosis and outcomes, comparing doctors and treatments, and sharing ideas about coping.

But without a diagnosis, who do you bond with? You spend time with other people who are just as lost as you and who also have no idea what to expect or who to turn to. We are a mystery. We gather with other mysteries and quickly run out of things to discuss. We hear the latest study on possible treatments for a identified mitochondrial diseases and wonder how many years it will take for the experts to figure out what we have. Which gene, or multiple genes, are affected? How long do we have to live? I met parents just as scared and hopeful as I, but when they asked how my daughter was doing I was honest.

“She’s in a decline.”

They looked at me with sympathy, but quickly moved away. They didn’t come there to hear sad stories, they came to the conference looking for hope. So did I, but unfortunately I didn’t find it.

Instead I focused on the two talks I was giving at the conference, one to people with vision loss and the other to the larger assembly of attendees. If I couldn’t find hope for myself or my daughter, maybe I could help others find it for their own loved ones.

I’ll post about my experience as a speaker next time.

 

Posted on in events, holidays, life

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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