Tag: mitochondrial disease

Posted on in health, mitochondrial disease, special needs, vision impairment

The Newest Normal

It has been more than a year since Rhia began losing weight, and we still don’t know why. What triggered weight loss, increased ataxia, decreased stamina, and vision loss? It began so slowly that I didn’t notice how thin she was or that her ataxia had worsened. It was like watching my hair turn gray; one day I realized I had more gray in my hair than I thought. When did the gray strands outnumber the brown? When did Rhia become so thin? Blood tests and an MRI hunted for answers but as usual nothing was found. Rhia is still the same medical mystery as she has always been.

One year later, Rhia has stabilized. She’s still too thin, but she is staying above 90 pounds. Her ataxia is so bad she rips the pages of her books when she turns them and she often pokes herself in the eye with a crayon when she colors. The only thing keeping her walking is will power. But since the beginning of the Summer she hasn’t gotten any worse. Usually she declines a little for a few months and then we all breath a sigh of relief and figure out how to manage her new normal. This decline lasted longer than ever before. Is that the new normal? Instead of a sudden crash lasting a few months her physical decline will be like a long, slow glide into looming rocks?

Welcome to the newest normal. Rhia has finally stabilized and now we both figure out how to manage the newest symptoms. She needs Physical Therapy to rebuild muscle so she can keep walking. She needs Occupational Therapy to help her learn to turn a page in a book without tearing it. She needs Speech Therapy to help her clearly speak so others can understand what she’s saying and she needs to relearn to chew her food so she doesn’t choke. She needs knee surgery to stop her chronic pain.

I need her to wear safety glasses to stop her from scratching her own eyes with color crayons. I also need her to tolerate a gait belt so I can safely transfer her from sitting to standing as well as getting in and out of the car. No matter how much I beg, or command, she won’t do either of these.

Today, this is the newest normal. Rhia is cheerful, determined, funny, and more stubborn than I, which I know is hard to believe. Her entire body trembles from ataxia now, not just her legs. Her color and contrast vision are much worse; she can’t tell the difference between orange and yellow anymore. Today she weighs 92 pounds. She’s trying to figure out how to keep doing what she likes to do and I’m trying to figure out how to help her do that.

The one thing that hasn’t changed is her smile.

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 caregiving, disabilities, mitochondrial disease, parenting

Caregiver or Mom?

Caregiver or mom? The two are blended into one role when our children are small. As they grow, we let go of small bits of caregiving. They learn to drink from a cup, use a spoon, pull off their own shirt and shoes and brush their own teeth. They become potty trained. They go to school and learn to write their own name. They get their own snack and in time learn to feed themselves. Perhaps they cook dinner for the whole family once a week. If they have smart parents, they learn to wash their own clothes. Slowly our children grow and become independent and eventually are able to live on their own. They don’t need us to be a caregiver, but they will always need us to be a mom.

This is what I’ve seen happen in other families. It isn’t what I’ve experienced.

My daughter will be 23 tomorrow but has less skills than she did when she was 10. Rather than gaining independence, she has become more dependent. Her illness has slowly taken away her motor skills and her hearing and now her vision is declining. Her cognitive abilities are reduced and something as simple as choosing which shirt to wear becomes an enormous task. So I help. I help her dress. Help her brush her teeth. Help her eat and bathe and use the toilet. We seem to be living in reverse.

The tricky part is balancing her need for a caregiver with my need to be mom. Her need for constant support with her desire for independence. My need to keep her safe with my hunger for freedom. We’re both trying to figure this out. When am I the caregiver? When I am mom? When do I make decisions that support her life and when do I make decisions to support my own?

A caregiver can be more methodical; I set my heart aside and take care of her daily needs. It doesn’t matter how frightened I am or tired, it only matters that she get enough nutrition and stay hydrated. I can manage doctor appointments and therapies and other caregivers that come to relieve me. Caregivers don’t need much sleep. Moms do.

This mom is frightened and angry and sad. This mom is sick and tired of the call in the night from a daughter who can’t get out of bed for a drink of water anymore. But this mom is also grateful that the call in the night still happens. My daughter, my beautiful, funny, kind-hearted daughter is turning 23 tomorrow after every doctor said she’d never see 20. We’re planning a party and celebrating the wonder that is Rhia. I am in awe of this child… this young woman… who disrupted my own life with her needs and curiosity. I am honored that of all the potential moms in the world, this spark of wonder chose me.

We still haven’t figured out the balance, and maybe we can’t. Balancing the heart with the mind and independence with dependence might be impossible. Sometimes Rhia is as sick of me as I am of the constant caregiving. She’d love to walk out the front door and find her own life with her own friends in another state! I’d love to help her pack.

But here we are, our lives entangled by Mitochondrial Disease. I’ll keep trying to learn when to be mom and when to step back and be the caregiver. A caregivers primary role is to support independence. Maybe that’s a mom’s role too?

Posted on in activism, disabilities, mitochondrial disease, opinion, politics

Lobbying for Healthcare in a bizarre world called Congress.

My plane landed in Washington DC at 5:30 AM. I’d never taken a “red eye” before and I was surprised I’d managed to get a little sleep on the flight from San Francisco. Grabbing my suitcase I found my shuttle and rode the 20 minutes to my hotel. In the lobby, the clerk said cheerfully, “Good morning. Checking in?”

I held up a finger. “Just a minute. Where’s the bathroom?” She pointed down the hall to my left.

Quickly I changed out of my yoga pants and tshirt and put on my professional looking dress, one I had chosen because it didn’t wrinkle. I brushed my teeth, put on earrings, slippped into heels, and added lipstick. After leaving my overstuffed suitcase with the front desk I joined the group of people heading to Congress to fight for health care for people with Mitochondrial Disease. It was 7 AM and I needed coffee bad. But I was ready.

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This was day one of the UMDF conference. I joined my assigned group, a doctor and a mom from California and a man who had LHON. We were to meet with 5 of our political representatives or their staff,  in the Senate and the House. At first we weren’t sure what to do, but once we got to Senator Feinstein’s office our group found its voice. The doctor in our group explained about Mitochondrial disease and the research efforts of the National Institute of Health. The mom talked about supplements and the need for insurance companies to provide them. The man with LHON talked about being affected with a disease. And I talked about the day-to-day-caring for my child and how important MediCare was for her life. The staffer took notes and asked numerous questions. We four felt like we’d made an impact.

The next staffer was either new or simply overwhelmed. He took a few notes, but mostly looked like he had no idea what was happening. We were all crammed into the reception room of Kamala Harris’s offices and people came and went and chatted over our heads as we tried to give our presentation. I couldn’t blame the poor guy; it was Thursday and all week people had been yelling about the GOP Healthcare Bill. Everyone was desperate to go home for the 4th of July break and I suspect at 10 am he’d already worked 5 hours.

From the Senate building we walked across the Capital grounds toward The House of Representatives Building We had to take the long way because the Capital building was blocked off by armed military police. Our local escort shrugged it off;  road closures and the military on alert was just an ordinary day in Washington DC.

At the Offices of the House of Representatives we gave the same presentation, this time directly to Judy Chu. She was extremely kind and appeared interested in what we had to say. Here was a real pro, someone who could listen to people talking health care during a week the words “health care” made people scream. At the end of our meeting, I thanked her.

“I really appreciate how hard you and other Democrats are fighting for people with disabilities like my daughter.”

She shook my hand and smiled. I wonder if politicians get many thank you’s?

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Then we met with a Republican staffer from New York who was obviously fed up with the words “health care” and gave us 4 minutes of his time. By then our group had split up. I met my Representative, Jared Huffman, on my own. Our meeting time had been changed but I didn’t know, so I sat with a staffer and talked about my daughter. By then it was 3:00 and my brain was so fried I couldn’t remember my part of the presentation, let alone how to explain Mitochondrial disease and the National Institute of Health. I’d walked up and down and around the halls so many times I lost track of which building I was in. But this staffer sat at the table with me, smiled warmly and asked questions. And then Jared Huffman himself stepped out of a meeting for 2 minutes to shake my hand. I wanted to hug him, but instead, I thanked him.

Walking around those buildings, I passed office after office of congresspeople from every state. Climbing the stairs, I detected that the marble steps closest to the hand rail were slightly grooved; thousands of footsteps over hundreds of years had slowly worn down the lip of each step. Every conversation crashed into the next, echoing down the stone halls. There wasn’t a moment of quiet, not even inside the offices where we met people who at least appeared to want to help. Once, I used the wrong elevator, accidentally hopping on the one reserved for elected officials. An older gentlemen in a nice suit smiled but didn’t reprimand me. I wonder which state he represents?

By the end of the day, I was worn out, confused, and ready to finally check into my hotel room for a shower. But I was also exhilarated. Here I was, actually talking to people in Congress about healthcare the same week Congress was debating healthcare. I shook the hands of people fighting for my daughter. I don’t know how they do it, day in and day out.

And I have a better understanding of our democracy, at least the ideal of democracy. A thriving democracy is more than just voting every few years; it requires participation. It needs us to talk and listen and debate and argue. We need to interact with our Senators and Representatives and make sure they hear us. Otherwise the only people they’ll hear are the people with the checkbook.

I love Washington DC. This makes the second time I’ve been there since January and I have a feeling I’ll be back.

Posted on in disabilities, mitochondrial disease, teaching, vision impairment

When you’re teaching at a medical conference, listen to your audience!

After the UMDF conference last year, I thought about all the people I saw with a vision impairment. How could I help? I submitted a proposal for a workshop addressing the needs of people coping with vision loss and their loved ones. UMDF liked the idea and put me in touch with the head of the L.H.O.N. group.

L.H.O.N, which stands for Leibers Hereditary Optic Neuropathy, is a vision impairment caused by mitochondrial disease. Even though I’m an Orientation and Mobility Specialist with a Master’s Degree in Vision Impairments, I had never heard of this disorder (more about L.H.O.N. in a later post). Maria (Girl Gone Blind) and I talked on the phone and she helped me develop my presentation. I would give the talk twice, once for those affected by L.H.O.N, and again in the general assembly for anyone dealing with other forms of vision loss. I put together a Power Point presentation, wrote my bio, packed my suitcase, and flew to Washington DC (Alexandria, VA to be exact. Just across the Potomac river).

People asked me if I was nervous. Funny thing, I wasn’t. The idea of talking to a room full of interested strangers didn’t worry me at all. I have information, I love to teach, they want to learn… perfect. However, as I stepped in front of a crowd of people with a vision impairment and their loved ones, I suddenly felt afraid. What did I have to offer these experts? They were living with vision loss while I’m just a teacher who can show them how to travel with a white cane.

That’s how I began. I focused my talk on communication between the person with vision loss and their family and friends. The only way to be an effective partner is through respect and communication. I did an abbreviated demonstration of Human Guide technique and moved on to how to support a person with vision loss in crowded and unfamiliar areas. Basically, “don’t ditch your loved one at a party.” After my talk I heard mixed reviews. Some people gave me a big thumbs up and said it was “great.” Others felt I didn’t present anything new and was “preaching to the choir.” I realized that mostly the people who thought it was great were people without vision loss. The people with vision loss were mostly bored. Oh well… like I said, they’re the expert.

The next day I gave my talk to the general assembly. However, as I began talking about supporting your loved one with vision loss, a woman raised her hand and asked, “Is this just about blind people?” I was afraid that would happen. The conference program left out vision loss in the description. Standing in a room filled with people looking for information about wheelchairs, walkers, and coping with changing mobility, I realized I had no idea what to say. So I took a deep breath, threw my notes aside, and started talking about my own experience working with my daughter and her changing needs. I also talked about working with older adults and how they struggled as their needs increased. Thankfully my audience started talking and sharing stories. I stepped back and facilitated the conversation. Dropping my teacher role, I became the advocate, a role I’ve played for 20 years. Once again, I was not the expert in the room; the people sharing their stories about declining mobility and strength were the experts. My talk went in a completely unexpected and unplanned direction and I loved it!

It’s funny that I was more nervous with my planned talk in front of an audience of mostly visually impaired people than I was winging it without notes. All those years I spent doing improv paid off. I used my theater background, advocacy and mediation training, and what I’ve learned being the parent of a child with a disability, and just followed my gut. But if the people in the room hadn’t starting talking, I would have been screwed. Once again, thank you experts!

I hope to give more talks in the future. I love teaching and interacting with people. My next topic will be on advocacy and independence. Need a speaker?

My next blog post will be about the day I spent lobbying for health care on Capitol Hill. This just happened to be the week the vote on repealing The Affordable Care Act was being debated by the GOP.  Interesting adventure.

 

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 aging, disabilities, family, happiness, life, mitochondrial disease, parenting, special needs, strength

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.

 

 

 

 

 

Posted on in caregiving, disabilities, life, mitochondrial disease, parenting, special needs

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.

 

Posted on in caregiving, disabilities, events, health, mitochondrial disease, parenting

Not the only Mito Kid in the world

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My daughter Rhia and I spent the last four days in Seattle at the Mitochondrial Disease Medical Conference. Hundreds of people with mitochondrial disease, their family, parents, doctors and researchers gathered at the SeaTac Hilton Double Tree Hotel to discuss potential treatments, research breakthrough’s and symptom management. The conference travels from the East to the West coast. This year it was only a two hour flight from our home, so my daughter and I decided to go.

The main goal for us was to meet other young people and kids with the disease. Rhia was convinced she was the only person in the world with Mitochondrial disease. There is no one else like her who uses a wheelchair because her legs are “too lazy” to walk (her words). No one else is deaf-blind and no one else has hands that shake.

Rhia quickly learned she isn’t the only girl on the planet. At the conference, she met a girl who uses a wheelchair because she too gets too tired to walk far and tends to shake when fatigued. We met a young man who has the same doctor as Rhia and has dealt with all the same tests and procedures. We met a young woman with thick glasses who struggles with seizures while trying to go to college. A young man who used to play sports but now spends more time in bed than on the field. We met teenagers and young adults from all over the US who battle mitochondrial disease every day just to have some kind of self-actualized life.

No one else is deaf-blind, though. I spent most of my time interpreting sign language so Rhia could understand what people were saying. It was a challenge to help Rhia become included in the group. They could all talk about their frustrations and joys, and they shared their experiences freely, supporting each other as best they could. As a deaf-bind person, Rhia is a rarity within a rare group. But everyone worked hard to include Rhia in the group. Whether she could understand their spoken words or not, she was still one of them. In time, Rhia warmed up and made two connections which could develop into friendships. Unfortunately they  live in different states, but if they can figure out how to stay in touch, the three could really help each other not feel so isolated.

Unfortunately I wasn’t able to attend many of the workshops on mitochondrial disease treatment and management, so I missed a lot of the information. But Rhia and I achieved our goal: connecting to other people with “mito” and understanding Rhia is not all alone. At times it was hard for me to step back from being mom and just facilitate communication. The stories people shared about their anger and grief coping with mitochondrial disease were heart wrenching. These kids should be enjoying high school and planning for college, not managing symptoms of a degenerative disease. Rhia said she hated her “lazy legs” and wished she could walk. She was tired of hurting herself all the time. The others nodded, understanding her anger. Reminding myself that I was here to support Rhia’s communication needs, I kept my tears in check.

At the end of the conference we were both exhausted and ready to be home. Two days later I’m still trying to regain my energy. The trip was challenging physically and emotionally, but worth it. We’ll definitely go again.

Thank you UMDF for providing this community and helping us cope with Mito. It’s not easy, but together, we can do it.

Posted on in disabilities, mitochondrial disease

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.