Some people say I have an unusually peaceful aura about me. I don’t know if that’s always true but I think I’ve always had a gift of courage. I believe I’ve had it so that I could deal with the challenges I’ve had to face in life.

Like my mother said earlier, I have Prader Willi Syndrome. Prader Willi is a genetic condition with a few different symptoms. But the main thing about Prader Willi is that you’re born without the signal that tells you when you’re full. So people with Prader Willi always feel hungry.

You might think Prader Willi is the biggest challenge I’ve faced in my life. But it’s not. Getting diagnosed with Prader Willi made my mom and me really happy! I wouldn’t say knowing made my life any simpler. But it explained a lot—like why I have small hands and feet and why I was always really good at puzzles. For the first time, there was a reason why aspects of my life seemed different. And it was a huge relief to know I wasn’t the only person who had gone through some of my issues. But Prader Willi has not been my biggest challenge in life. Growing up without my dad, moving a lot when I was a kid, and having a hard time in school were a lot tougher. That’s when I needed my courage.

I’ve always been drawn to people and places where the Love is big and easy to feel. The dance studio where I dance several times a week is like that. It’s a place where everyone is glad to see each other and where we’re free to be ourselves. It’s like there’s a Love in that place that’s bigger than all of us. But we are all a part of it if in our own ways. All I have to do is walk in the building and I feel it. West Concord Union Church and Sunday Fellowship are like that for me too. So are certain people. And so is Nature. They’re the places I know where I can always go to recharge my batteries and fill up on Love.

My best friend Madeleine was one of those people too. She drove a taxi service I used a lot and I would be with her most Sundays. Being with Madeleine always made me feel such love. But along the way, I found out she had ALS. It was very hard for me to admit she was going to die. But when I saw her getting the signs of ALS so rapidly, I had to face it. And that was a much bigger challenge than finding out I had Prader Willi.

My mom and my friends often say I’ve taught them a lot about how to “live in the now”. I guess that’s true because I don’t hold on to my problems. I know how to look for the people and the places where the Love is big and easy to feel. Thanks be to God.

Little did I know, the day Jane was born, that this tiny little girl would forever change me and challenge who I was day after day. She still challenges me even now. But on the day she was born, she demolished my girlish fantasies of who I would be as a mother and deliver dreams to our lives we didn’t know we had.

When she was born, Jane had no reflexes at all, including sucking. When the doctors sent us home, saying she was fine, she still could not suck. They told me I must get 3 ounces of formula into her every 4 hours whether she wanted it or not. If she fell asleep I was to wake her up by flicking the bottom of her feet. For many weeks it would take me at least 10 hours day to do this and sometimes 20– flicking the bottom of her feet – working her mouth- to get this formula she did not seem to want, into her. I would cry. I would weep. “I cannot do this,” I wailed. Or I would pray, “Help me help me! I promise I’ll be good.”

Sometime during those weeping weeks and childish praying—-something within me said, “Stop it. Get the job done!” And I did. I did it silently, quietly. I learned to listen to Jane. I watched her carefully and kept a diary – how long did she sleep, how long it took to feed her, what did she pay attention when awake. I let the doctors tell me she was fine. I stopped arguing with them and they stopped telling my husband–Jane’s father—I was neurotic. We were an Air Force family. My husband was a pilot and gone most of the time. He and I acted like everything was ok—though I knew my child was different from others. I kept working, reading and watching. Was Jane meeting the normal developmental benchmarks? No, she wasn’t. So I studied other children and asked myself, “How is she the same and how is she different?” I was developing the Benedictine practice of work as prayer.

Jane did develop, a little slower than other babies, but she was growing faster than I was. I was wound too tightly to grow feely. I was still concerned with being nice and polite, always having a smile on my face, not getting too emotional and never challenging anything or anyone. When Jane was three, we had another baby girl. Shortly thereafter, Alan was assigned to a Special Ops unit in SE Asia. He left when Jane was barely 4 and Ann not yet a year old. And then he was killed in action, in Laos, when Nixon said we were not in Laos. Alan was killed on his first flight in-country.

At my husband’s funeral, with full military honors, a 21-gun salute, honor guard and planes flying in formation overhead, I fearfully wondered to myself, “What am I going to do?” And once again something inside me said, “You are going to give your daughters the life you and Alan promised you would give them. Get to work.” And I did. In the 4 years since Jane had been born, I had quietly and carefully developed my intuition. I began to let myself feel. I learned that I was a small, suppressed and broken person who simply was not up to the job life had given me. But I took it on anyway. I went back to college. I got a BA, an MA and PhD. I went to therapy and took apart the emotional box I was in.

I was finally growing, first into the mother Jane needed, the kind who didn’t tolerate doctors or teachers who focused on what she couldn’t do. I looked for warriors. I interviewed doctors, teachers, speech therapists, physical therapists, orthodontists, nannies, neighbors. Even my own friends were scrutinized. I researched towns, communities, neighborhoods where Jane would not only be safe but also supported and included. I, like all parents, wanted people who were committed to who my daughter could become. I could see this was also going to cost a lot of money so I better get a good job. And I did. The University of New Hampshire offered me a faculty position and that’s how we got to the east coast.

The broken woman I had been, was becoming more open, less encumbered by the restraints and limits I had learned in the past. I was opened past many of the attitudes of the day. Did you know that Reagan signed a law in 1980 that made it illegal to neglect a compromised baby? But until the 1980’s it was legal to let a baby die!

Jane kept growing differently than others. She didn’t speak until she was almost 6 years old. Two weeks later, we discovered she had taught herself to read. She was also becoming very interested in food. She was a collector of it. It was an adventure cleaning her room: “What snack would be in the sock drawer? How old was the pizza in the underwear drawer? Where did she get the jelly beans in her boots?” She made it through the many hazards of grade school and high school and into her adult life still a mystery to all of us around her

Jane was 38 years old when she was finally diagnosed with Prader-Willi Syndrome. Prader-Willi is a non-inherited genetic error which displays hundreds of physical and neurological characteristics. But the single most challenging and disruptive symptom to daily life is the ever-present desire for more food. Jane’s body, every neurological mechanism, every cell, tells her every moment of her life that she must have more food – much like a starving person. Their early deaths are often the result of this never-ending demand for food from a body that will gain weight on 800 to 900 calories a day (which is comparable to the 800 calories diet of prisoners in Nazi concentration camps during WWII).

There is no cure for Prader-Willi, only a protocol, for managing the lethal choices the person is compelled to make. The protocol is 100% supervision and 100% control of available food. Just to let you know, we do not maintain this protocol of complete supervision and control. By the time, Jane was diagnosed she was a very independent person and she was not about to let that be taken from her. Somehow, somewhere, she has learned to stop eating when her body is saying more but is always in a dangerous conflict with her body’s desires. Jane is one of the few people with PWS that has survived into her 50’s. (I should note that this community has an abundance of Prader-Willi People. You have two, Jane and Dennis. This is a great number for such a rare syndrome). Now we can find doctors who have at least heard of Prader-Willi but very few have met such a person.

As for me, I’m still growing and battling my way toward a life that is both broken and open. At times, I still fight with that superficial girl who is concerned with superficial things. Jane and I were once in a battle over something, I don’t remember what, when Jane said to me, “You are interested in looking good and I am the child that doesn’t look good.” She was right! It was true in that moment. I was angry that she didn’t look good and it might tarnish me. Since then I promise myself repeatedly and regularly to let go of such mundane, shallow concerns. And I still don’t like being the food sheriff.

I have also learned that our story is not unlike the story of this church-maybe a few more challenges or pitfalls. Maybe our story is on steroids – you know what I’m talking about. But I know it wasn’t always easy for this church to include people of all abilities. And yet, you found a way and it has broken you open in some wonderful ways. I thank you for this, for your openness, for your insistence on inviting everyone to this church. I am grateful Jane is here in your company.

In my experience, Broken and Open are like sisters who squabble in a shared room, brothers who compete at everything or parents, who feel the responsibility the and sorrow of bringing their children into this flawed world. Jane’s birth did not break me. Jane’s birth and life revealed that I was already broken. What I know now is that love can overcome any amount of brokenness. Maybe you too you have loved someone whose spirit insisted that you open yourself to something you didn’t think you could. Jane’s spirit insisted, still insists that I open myself to the mystery of her and of her life. Someplace in this journey Jane and I have been on, I have found a deep and abiding gratitude for our whole demanding glorious life. Today, the prayer I repeat over and over quietly is still simple – it is “Thank you.”

Melissa Tustin shared this message as part of our all-ages worship on February 5th. The sermon begins with the preacher sprinkling rock salt on a large block of ice!

January is by far the best month to have a birthday. I’m a little biased since my brother, my aunt, my father and I were all born in January. But I bet you would agree that some truly “salt of the earth” people came into the world in January. After all, one of this country’s most courageous and transformative leaders, Rev. Dr. Martin Luther King Jr. was born on January 16th! But did you also know that Edward Verne Roberts, the Father of the Independent Living Movement, was born on January 23rd?

Since 2010, the state of California has officially observed January 23rd as Ed Roberts Day. There is a picture of Ed Roberts on our bulletin today and the quote from him. As you can tell, Ed was one of the most outspoken warriors for the disability rights movement. Let me tell you more about this truly “salt of the earth” human being:

“…And that’s the greatest example, that we, who are considered the weakest, the most helpless people in our society, are the strongest, and will not tolerate segregation, will not tolerate a society which sees us as less than whole people. But that we will together, with our friends, will reshape the image that this society has of us.”

“[Ed’s] career as an advocate began when a high school administrator threatened to deny his diploma because he had not completed driver’s education or physical education! He also had to fight for the support he needed to attend college because his rehabilitation counselor thought he was too severely disabled to ever get a job…His admission to UC Berkley broke the ice for other students with severe disabilities who joined him over the next few years at what evolved into the Cowell Residence Program. The group developed a sense of identity and elan and began to formulate a political analysis of disability. They began calling themselves the Rolling Quads to the surprise of some non-disabled observers who had never before heard a positive expression of disability identity. In 1968, when a rehabilitation counselor threatened two of the Rolling Quads with eviction from the Cowell Residence, they organized a successful ‘revolt’ that led to the counselor’s transfer. Their success on campus inspired the group to begin advocating for curb cuts, opening access to the wider community and to create the Physically Disabled Student’s Program, the first student-led disability services in the country. In 1976 Governor Jerry Brown appointed Ed Roberts Director of the California Department of Rehabilitation—the same agency that had once labeled him too severely disabled to work.”

Ed Roberts is directly responsible for the installation of the first curb-cut in the United States. I daresay every single person here has benefited from his legacy. The more I learn about Ed Roberts and the many, many other saints of the disability rights movement, the more surprised I am that this history is rarely taught in schools. I was fifteen years old when the ADA, the Americans with Disabilities Act, was passed but I don’t recall learning anything about the events that pushed it through. The ADA had been stalled in Congress for months when there was this incredible demonstration known as the “Capitol Crawl” that pushed it through. On March 12, 1990, sixty disability rights activists left their wheelchairs and crutches behind and crawled up the steps of the Capitol Building. I can’t imagine a more effective way to shine a light on the injustice of having inaccessible public buildings.

But that’s not all. By far, the most iconic image from that day and some say the reason Congress HAD to pass the ADA is Jennifer Keelan, just 8 years old, crawling up those steps. In all the pictures, she has this determined expression on her face, as only an eight year old girl can make, with a flag bandana wrapped around her head. What strength she had, what courage and that was not even Jennifer’s first demonstration! She got involved in the fight for disability rights when she was six years old and was arrested for the first time when she was just seven! Jennifer and her mother, Cyndi actually helped draft the original ADA law! Talk about salt of the earth! The irony is that despite having been involved in the drafting of the ADA, Jennifer and her mother have experienced significant discrimination and even homelessness in their home state, Colorado. But they have never given up. Jennifer currently lives in AZ and is pursuing her goal to become a pediatric occupational therapist.

A group of handicapped people led by 8-year-old Jennifer Keelan, left, crawl up the steps of the U.S. Capitol in Washington, March 12, 1990, to draw support for a key bill now pending in the House that would extend civil rights to disabled persons. The group of about 1,000 people or rode in wheelchairs down Pennsylvania Avenue from the White House to the Capitol. (AP Photo/Jeff Markowitz)

Clearly, there is more work to be done, in the fight for equal rights for people of all abilities and in so many areas. It has been a difficult month. Laws and leadership are changing in this country and to many it feels like the world is becoming a colder, more dangerous place, especially for immigrants, Muslims and those living in poverty. But history has shown and our faith teaches that in every age and time, God has sent her prophets to shine a light on injustice and to salt the earth with courageous words and actions. We can draw strength from the ones who came before us like Dr. King and Ed Roberts and Jennifer Keelan. We too can shine a bright light on the injustices of our time just as they did. We too can use our voices to melt the fear and cold-heartedness that is so often behind discriminatory laws.

When I started this sermon you watched me sprinkle salt on this big block of ice. The whole time I’ve been preaching, that salt has been melting the ice. I want to invite the children to come up and use some liquid watercolor to reveal the holes and cracks the salt has already made in the ice while I’ve been talking. These colors represent the inroads God has already been making through the leaders and the activists who came before us as well as the places where Jesus is calling us to be the salt and light in our time. As the children come forward, we need to acknowledge that the struggle for justice is not easy. As Theodore Parker once preached and Dr. King often repeated, “The arc of the moral universe is long but it bends toward justice.” I’ve been hearing that many of us are finding we need new habits and practices to help us stay energized while facing problems we know will take time to solve. So while the children are up here revealing the colors of God, I invite the rest of you to name the practices that are energizing you these days. They don’t need to be explicitly religious to be helpful. For example, reading the comics is one of the ways I remind myself to find joy in each day no matter what’s on the front page of the newspaper! Salty language is another helpful practice for me in the right circumstances. What about you?

Answers: Taking walks, listening to music in the car instead of the news, coming to church every week, praying, etc.

Thank you for sharing your energizing practices and thank you kids for revealing God’s colors. I can see that God’s prophets are just getting warmed up! And what’s more, the one we call Light of the World, goes before us! For that, in every age and time, we are blessed. Amen.

Sources:

1. https://en.wikipedia.org/wiki/Ed_Roberts_(activist)

If you like these images from WCUC’s 2016 Epiphany Pageant, follow the youtube link below for a slideshow of images set to “Silent Night” by Maeve (see http://maevemusic.com for more Maeve music).

https://youtu.be/VXcTO9zfD8Y

John Sharon, Founder of Disabilities Understood, preached at WCUC on September 27

Thriving churches have become an endangered species. Studies show more people than ever consider themselves religiously unaffiliated. And all of the mainline denominations are busier closing churches than planting new ones.

I’ve spent a lot of time in churches—at least nine spanning three denominations. I also have friends in many areas of the country who spend most of their time thinking, reading and talking about churches. So I don’t say it lightly when I describe WCUC to colleagues and friends as a thriving church. I’ve often asked myself the question: “Why is WCUC growing when so many other churches are struggling?”

Sunday Fellowship recently invited John Sharon, founder of Disabilities Understood, to preach at WCUC. In his sermon, “The Broken Body”, John described the flourishing church as a place “where everyone’s gifts are cultivated and embraced,” where differences are connecting, rather than disconnecting and where “everyone can find common ground for their brokenness.” As John told us, “when all belong, that’s when the church looks more like Jesus–broken, compassionate, and alive.” Maybe that’s one of the explanations for WCUC’s health and growth in recent years. Could it be that the members of Sunday Fellowship are some of WCUC’s most gifted teachers of the gospel? -Melissa