On December 3rd, Sunday Fellowship gathered to welcome Advent and reflect on the question “How does a weary world rejoice? (a line from O Holy Night).” We sang, prayed and created glow-in-the-dark “moon prayers” to express our weariness and deepest longings to God. The gathering concluded with a festive hot chocolate bar. Please enjoy the photos.

In 2019, with the support of the Dennis Lin Fund, I attended the Institute of Theology and Disability for the first time. I went with high hopes that learning from world-class scholars in the theology of disability and meeting my fellow practitioners of inclusive ministry would transform my thinking and my ministry. My expectations were more than met and I have spent the past three years integrating the knowledge, relationships, resources into my work. All of this is to say that the bar was set pretty high when I had the opportunity to attend the 2022 Institute in early June.

My experience this time was quite different but equally transformative. There were fewer people attending on-site but the speakers and worship leaders were more diverse this year. One of my favorite lectures was “Not Your Ritual Object: A Disabled Perspective in Inclusive Liturgy, Ritual and Spiritual Arts”, a talk by Rabbi Ruti Regan on the challenges of creating successful inclusive rituals. By describing common pitfalls like modifying received religious rituals so much that they lose their emotional impact for the community and become something to merely tolerate, Rabbi Ruti showed how some attempts at inclusive ritual can actually subvert the goal of integration and inclusion of people with disabilities. She underscored the importance creating liturgy that does not define people with disabilities solely by their needs or use disability as a spiritual metaphor but recognizes the experiences of people with disabilities as meaningful in and of themselves. Rabbi Ruti encouraged us to look carefully at the stories and practices that already exist within our religious traditions to find the places that lend themselves to inclusion such as the Jewish practice of repeated prayer bows and readings or the emphasis on divine embodiment during Advent in the Christian tradition. I could go on about the many insightful points made by Rabbi Ruti but I won’t for now.

Another thought-provoking lecture was “COVID-19 is Not Like the Measles: The Hidden Impacts of the Pandemic on the Lives of People with Disabilities” by John Swinton. His described the scarcity mindset many people and governments fell victim to during the pandemic, including those of us whose worldview is supposedly shaped by faith in a God who breaks down barriers and encourages love of neighbor. He pointed to hoarding behavior, the unequal distribution of vaccinations and the inflammation of xenophobic prejudice. At the same time, he also pointed to a heightened awareness of the human need for companionship and community and the increased access online platforms have provided for people with disabilities. He charged communities of faith to lead the way in prophetically reimagining the world helping communities to develop practices that encourage greater relational consciousness and remembering the marginalized.

That’s probably enough detail for now! If you’re interested other incredibly meaningful lectures and talks I attended were:

Beyond Saints and Superheroes: A Phenomenological Study of Spiritual Care Needs of Parents Raising Children with Disabilities by Laura MacGregor, Allen Jorgenson, Kayko Dreidger Hesslein and Roz Vincent Haven

Disability Ethics and Theology: A Symposium by Rosemaries Garland-Thompson, Brian Brock, Devan Stahl and Bill Gaventa

Grief, Loss and End of Life Issues with People with Intellectual and Developmental Disabilities by Bill Gaventa

LGBTQ Inclusion in Disability Work: A Conversation for Community and Allies by Allison Connelly Vetter and Rebekah Dyer

Rejoicing Through a Communion of Vulnerabilities by Adanna James

The Intersections of Black Liberation Theology and Disability Justice by Rev. Harold “Russell” Ewell II

Two Steps Forward, One Step Back: Continued Faith Engagement of People with I/DD After COVID-19 by Jasmine Duckworth and Chantal Hardwick

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.”

“Beautiful things don’t ask for attention.“  That’s a line from the recent film The Secret Life of Walter Mitty but it could also be a description of Sunday Fellowship.

Sunday Fellowship has been a ministry of this church to developmentally delayed adults for over thirty years.  We sing, we pray for one another, we worship and we have snack.  It’s pretty simple.  But it’s also transformative.   As anyone who comes to Sunday Fellowship will tell you, its’ a community where God’s grace and love is palpable.

I’ve witnessed many large and small moments of grace at Sunday Fellowship.  My favorite of late is when we were singing and half the room got up and started dancing.   Before I knew what was happening someone grabbed me by the hand and was twirling me around.  That’s when I realized that I am not the one in charge.  It may be my job to choose the songs and scriptures, but the Spirit blows where it will.  My job is just to hang on for the ride.

That’s pretty much what Jesus says to Nicodemus in John 3.  If we want to enter the kingdom of God we have to become more like water and wind which flow in whatever direction the current takes them.  This can be difficult for people like Nicodemus and I who are so used to being in charge that our ability to trust has become paralyzed.  We need help learning how to let go and trust.  But Sunday Fellowshippers are experts at this and offer their wisdom to anyone with the ears to hear it.

I wish more churches had the vision to offer a ministry like Sunday Fellowship.  The potential for mutual transformation is boundless.

If you haven’t yet had the opportunity to experience one of our gatherings firsthand, I hope you will consider coming one day.  Because the most beautiful things don’t ask for attention, you just have to experience them for yourself.

~Melissa

More wonderful pictures from our Christmas Pageant…