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.

 

 

 

 

 

Trying to change the world is not a solo endeavor.

I believe that one person can make positive changes in the world. My heroes are Martin Luther King Jr, Dr. Hawa Abdi, Cesar Chavez, and Margaret Sanger. All four fought for the rights of others despite impossible odds and succeeded. And so, with their example in my mind, I tried to raise money to pay the bus fare for people with disabilities. Dial-A-Ride is expensive, especially if you live out of town, and in a rural area like Mendocino County, the bus is limited. How does a person with a disability get to town for shopping or a doctor’s appointment or to visit friends, if they can’t drive?

How hard could it be? It’s not like I’m trying to provide medical care in Somalia.

With the support of Burners Without Borders, a volunteer organization that helps people create change in their communities, I made a fundraising plan and called the Mendocino County Transit Authority (MTA). No one called back. I called again. I emailed. I waited. No response. Fine! I guess they don’t want money. Too bad, I’ll try a different tact. After making a list of local non-profits who help people with disabilities, I contacted each one. No one called back. Hmmm…. weird. What am I doing wrong? I called Burners Without Borders for help and they advised me to go ahead and fundraise and not worry about getting MTA support. Just show up with a check and they’ll take the money.

So I started planning a fundraising event and quickly had a panic attack.

If I don’t find a way to help people with disabilities get to the grocery store, who will? Would Margaret Sanger give up because no one returned her phone call? No! She was beaten and thrown in jail, but never gave up. She also had a group of people helping her.

Oh… right… even heroes need help. And I am not a hero. I’m just a woman in a rural town who sees a problem and wants to solve it.

Last year I tried to get the City of Ukiah to fix the Accessible Pedestrian Signals (APS) at intersections so people with vision impairments could cross the street safely. I met with a City Councilwoman and contacted the Department of Transportation. I also spoke with the City team working on the new traffic plan. They said they would add me to their contact list so I could attend their meetings. It never happened.

Again, I banged my head against a brick wall trying to solve a problem no one else seemed worried about.

If I had more time, I could attack all these problems effecting people with disabilities in my town: no transportation, broken pedestrian signals, crumbling sidewalks, lack of curb cuts, unsafe street crossings (near the hospital for goodness sake!). But I can’t do it alone; not even Martin Luther King Jr was alone. I have to accept the fact that just because I see a problem doesn’t mean it’s mine to solve. I really tried to make progress, but the brick walls I hit are stronger than one person can tear down. So I’m passing the baton to the next person.

You?

I hope someone carries it.

 

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!

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

img_4695

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.

img_4660

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.

img_4682We 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.

img_4677

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.

img_4694

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.

img_4696

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

womens-march

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.

Dear Trump supporters, I understand why you voted for him, but can you understand why I’m angry?

Dear Trump supporters,

I understand why you voted for Trump. I live in a rural area and work in one of the poorest counties in California, a county with no jobs, substandard housing and dirt roads. This is the kind of place Obama’s promises never reached. The people here are angry, and wanted to send a clear, loud message to Washington DC.

I understand, but can you try to understand why I’m angry?

My daughter has severe disabilities and is one of those people Trump mocked while campaigning. She is a woman who depends on government services for her survival. She lives with me and I depend on services to take care of her. Without the support of Social Security, MediCare and In Home Support Services, I would be forced to put my child in an institution. I thank my government every day for the help my family receives. Trump wants to take that help away.

My husband is a cancer survivor. “Obamacare” saved him and our family. Without subsidized health care and the changes in health care law, he probably would have died and I know our family would be bankrupt. So again, thank you government. I know it is not a perfect plan, but it saved my family. Trump wants to take that away too.

I am a rape survivor. Many women have accused Trump of sexual assault and rape. He brags about it, and now, a sexual predator will be president. What message does that send to women in our country? Our voices and our bodies don’t matter. Men can abuse us and we are powerless to stop it.

Trump is racist. He openly hates Mexicans and Muslims. He thinks black people should shut up about racist cops. And his win of the presidency sends a message to other racists that it’s okay to write swastikas on walls and beat up immigrants.

Many of the people I love are gay, lesbian and transgender. Will they now be denied legal protection to work and live peacefully? Will families be destroyed?

Again, I understand why you voted for Trump, and I know a lot of you aren’t racist or misogynist. But in voting for him, you told people who are racist and misogynist that it’s okay.

You can be the biggest bigot in town and  people will still respect you. Hell, they might even elect you president.