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.”

I began going to church when I was seven years old. It was the late 1970s in Seoul, Korea, and my parents encouraged me and my sisters to grow up in Christian teaching. When I was a child, my mother gave me a small amount of money every Sunday morning, and I simply took it to church and put it in the offering basket. I knew the meaning of giving offerings to God, but I never had to work to be able to give. Even after I graduated college and came to the US to study, my parents supported me and I had no problem taking a part from the money they sent and giving it to God and to church.

After I got married in my mid-twenties, there was still not much challenge in giving to God. My husband Robin also grew up in Christian faith and had no objection for giving tithe. He got his first job and we were still living in a college town in Indiana where things were relatively inexpensive. We were not saving much, but still able to make the ends meet.

Things began to change when we moved to Boston in the late ‘90s. We found a wonderful Korean church in town and we were very happy to be a part of it, but over the next several years, we had to face challenges in our careers, finances, and family relationships. It was difficult times, but we learned great lessons. God was with us all those years, and I know and believe that God led us to find a place to live in West Concord and became members of this church two years ago.

I feel blessed when we share joys and concerns during the worship. I know that there is not a week that we have nothing to be thankful for, and there is not a week that we have no concerns or sorrows. I see that God allows us both happiness and sadness during our days on this earth, and it is, indeed, very comforting to me.

Regarding to our giving, we made our first pledge last year and we were so thankful that we could fulfill it. It was much smaller amount than tithe, but we were very grateful that we could start giving again after the several years that we could not. We have pledged again this year, but I confess that things have been more challenging and we are quite behind the schedule. I am praying and hoping that we could fulfill it, and we could give more generously in the future.

I give thanks to God for being with us always and leading us to where we are now. And I thank God for this community of faith that makes me to have fresh views on familiar things and broadens my eyes on our life and the world we live in.

I came to West Concord Union Church for the sake of my children.  That is what I thought in 1985:  For my children.  I wanted them to have what I had had at Lakewood Methodist Church—a place, other than school, to figure out how to be in the world; at least a rudimentary knowledge of Bible stories; exposure to and participation in great church music; and witness to good people performing good works in the community.  Though they got all that and more here, I am envious of the wonderful Sunday School and children’s choir that I observe now, richer than what I and other parent volunteers could offer in the old days of the 80’s.

But now that our children, aged 38 and 36, are launched, I have to ask myself why I am still here.  What keeps me coming back?  It can’t be just that I like our organ better than any other in Concord.  How has it come to pass that so many of my activities in retirement are church-related?  That was not necessarily how I had imagined things.  I was supposed to be cleaning my closets and getting my house in order!

Hannah used a phrase in her sermon a few weeks ago that resonated with me so much that I grabbed the little pencil from the pew in front of me and scribbled it in my bulletin.  She spoke of “the kingdom of God within and around us.”  That is what I sense here in the people and in the activities that I have been and continue to be involved in at West Concord Union Church.  I feel the kingdom of God in this church every time I enter the door, and I feel the kingdom of God within myself when I work on behalf of the church.  That kingdom comforts AND challenges me.  I give my time and money to the church to ensure that I continue to be comforted and challenged and that the church continues to offer that same comfort and challenge to others.

What did I do this past summer? I’m happy to report that a major focus this summer was rest.  I spent a lot of time in nature and in prayer. I began new exercise routines to improve my health.  I had more time for family, for sleep, for reflection.

I spent one week with the Young Clergy Women’s Project at a conference in Boston, learning from Susan Beaumont. Her presentation, “Leading with Presence,” focused on ways to integrate  traditional goal-driven leadership with the skills of contemplative leadership. This builds on her area of expertise, bringing business management tools and faith life together.

I spent another week in silent retreat at Marie Joseph Spiritual Center in Biddeford, ME.  Walking along the ocean, participating in worship services twice a day, and meeting with a spiritual director, I had the chance to dive deep into my prayer life. I hope to visit again next year and make this part of my continuing education time.

Two weeks were spent on family vacation, one in Buffalo, NY, and one in Lincoln, NH.

During the other weeks, I alternated between work and rest, preparing for the year of ministry to come. I got a head start on our Congregational Giving appeal and created a worship planning spreadsheet for the program year.  I developed a new strategies to  track my tasks and arrange my calendar, setting fresh intentions about how I want to use my time. I am hopeful that you will see the fruits of these efforts, directly or indirectly, in the months to come.

I am profoundly grateful for the gift you have offered me in granting this time away. Thank you especially to Cindy Maybeck and all the lay leaders who helped sustain and strengthen our community during that time.  I am excited to rejoin you and continue our ministry together.

Peace,
Hannah

Emily shared these words with us on June 12th before receiving a blessing as she prepares to leave for college this summer.

For those of you who don’t know, I just recently graduated high school, and will be heading off to Wagner College next year. So this past fall I thought I’d sign up to do a testimony before I leave, thinking that by June I might have some more answers. I honestly don’t know what I was thinking. Some of you may remember my confirmation speech I gave in 8^th grade. I haven’t made much progress since then. But in my defense, my frontal lobe still has some major developing to do.

This year has proven particularly difficult in terms of finding God, as it has probably been my hardest year yet. I faced a large volume of rejection from colleges, missed a great deal of school to audition at said colleges, struggled to find time to balance my rigorous courses with my multitude of extracurriculars, and supported my mom through a second surgery. With all that happened this year, I found myself praying more, and questioning more when the things I prayed for didn’t happen. This year put a great strain on my spirituality, and as I emerge from this school year I now finally have time to reflect on what I believe and on what I may still have some lingering questions. The list of questions is significantly longer than the list of answers.

Rejection and surgery aside, most of my friends identify as atheists, which of course also leads me to question my faith. Whenever they question religion and those who worship, I find it can be hard to defend the church since I too wonder about such things. However, I also feel as if I should, seeing as I am the token friend who attends church. I found myself in such a situation recently, and amidst flying critiques from my friends I remembered the time when I spoke after confirmation in 8^th grade. Basically I said that I didn’t know what I believed, and after I had finished everyone cheered and applauded my honesty and maturity. When I told my friends that they all appeared shocked at the support this faith community gave me for being unsure. I still use that story to this day when my atheistic friends ask why I attend church.

As of right now, I have one all-encompassing, foundational belief about my faith and faith in general: faith is a journey. This testimony does not mark the end of my faith journey by any means. I see it as a checkpoint; a time in my life where I am forced to explore and ultimately articulate what I do and don’t believe. I use the word “forced” here not because Hannah cornered me and told me I HAD to do a testimonial, but because evaluating one’s faith, especially at such a transformational point in life, can be extremely difficult. And though I don’t expect to have all the answers by tomorrow, I hope that with the continuing love and support of this and the following faith communities I am a part of I will continue this journey with an open mind and heart, no matter how hard it gets.

This article was written by Polly Jenkins Man for the May 19th, 2016 Concord Journal column, Voices of Faith.

For in the first place, when you assemble as a church I hear that there are divisions among you. – I Cor. 11:18

Now there are varieties of gifts, but the same Spirit and there are varieties of service but the same Lord. – I Cor. 12:4-5

Since moving to Concord in 1970, I have lived in four different houses.  Yet there is one place that has been my home all this time; the West Concord Union Church which I joined soon after we moved to town.  For 45 years this has been my sacred space.  It is where my children attended Sunday school, my son was baptized, my daughter confirmed; where my husband and I met and were married.  We were both ordained here and I hope that, when I die, my life will be celebrated from this sacred space.

There have been six pastors since 1970 and five interim pastors. Friends have come and gone, children have grown up and moved away, babies have been born, members have died.  The building and the grounds have undergone major renovations and our rooms have been used for, among other things, a Montessori school, a math program, the prison ministry and now a music school.

This year we mark the 125^th anniversary of the founding of our congregation by the wardens of the Concord Reformatory, now MCI Concord, in 1891. To mark the occasion, WCUC has embarked on a capital campaign.

Next Sunday, during morning worship, we will dedicate our financial pledges to this campaign to update our building once again: to preserve and maintain our present structure; become environmentally responsible with more efficient energy and by making structural changes; and improve accessibility and flexibility to our spaces.

Not all of us have jumped on board with this plan.  I count myself among those that have disagreed with some aspects.  Sometimes I felt that my concerns were not taken seriously and my voice didn’t matter. Now, as I look back to those times, I see that those with whom I spoke must have felt the same way.

But then, after open and honest conversations with them, I began to see things differently.  I realized that this is what church is all about.  This is exactly how a community of believers behaves. As Paul said, there are varieties of gifts and each, though different and distinct, has its function.  “If the foot should say, ‘Because I am not a hand, I do not belong to the body’ that would not make it any less part of the body.”  All are necessary for the body to function well. By dealing with our differences and appreciating each other for our uniqueness, we become true community; by this we can claim to be one body; the arms and legs and minds of Christ in our world.

On the day of the Pentecost celebration, it’s recorded in the Book of Acts that about 3000 people were gathered together; people from all over the ancient Roman world.  Suddenly, they all began to speak at once, each in their own language, Yet everyone heard the words as if it were their own.  Now that doesn’t make a lot of sense at first, unless we believe that it was not the words themselves but the mutual experience of the Christ Spirit that had come to them; As Henri Nouwen observed, when once no words could express his feelings for an old friend, “It is the Christ in you that recognizes the Christ in me.”

Pentecost is the church’s birthday; it’s the beginning of a community where people from all backgrounds, each with our own ways of communicating, are united by one Spirit; where disagreements can be expressed and discussed then ultimately subsumed to the common belief that we are more than the sum of our parts; we are one body; the body of Christ.

That’s what we will celebrate on our birthday: 125 years of changes to our building, multiple pastors, hundreds of baptisms, weddings, funerals and, yes, arguments, hurt feelings and betrayals along with love, respect and reconciliation.  This is what makes us a church; a community of fallible human beings who are doing the best we can to be the Body of Christ.

WCUC member Polly Jenkins Man is one of the writers for the Concord Journal’s Voices of Faith column. Here is her most recent column.

The earth is the Lord’s and all that is in it, the world, and all who live in it; for he has founded it on the seas, and established it on the rivers.  – Psalm 24

When we try to pick out anything by itself, we find it hitched to everything else in the universe.  -John Muir

When I was in seminary, confident of my new theological wisdom, I realized it was high time to ask my father something we had never discussed before: what he believed about God. We happened to be on a trail in the Adirondack Mountains at the time, standing next to a rock pool above a waterfall. Dad didn’t answer; instead he beckoned me closer to the pool. “Look in there, Pol,” he said. “You want to know what I believe about God? Everything that anyone needs to know is right here.” So I looked, and saw small wiggling things, bits of green and brown matter, microcosmic creatures with legs, ripples caused by constant motion, all caught in the sparkle of sunlight. I remembered this long ago conversation when I read part of Pope Francis’ June Encyclical Laudato Si, On Care for Our Common Home. These are his words:

Our insistence that each human being is an image of God should not make us overlook the fact that each creature has its own purpose. None is superfluous. The entire material universe speaks of God’s love, his boundless affection for us. Soil, water, mountains, everything is, as it were, a caress of God. (Ch. 2, IV. 84) God has written a precious book, the Pope writes, quoting Pope John Paul II, “whose letters are the multitude of created things present in the universe.”

Last month I stood on the Washington Mall, “America’s Front Yard,” when the Pope was speaking to Congress. I had joined the organization Mobile Action on Climate to watch and listen to his words on two jumbotrons. I am a veteran of events like this, in Washington, Boston and New York; attending rallies, complete with singing, speeches and marching for just causes. Never, though, did I dream that a speech by a Pope to a bunch of Protestants, Jews, Muslims, agnostics, atheists and who knows what else, would attract a crowd like those had. We were like a bunch of groupies at a rock concert. Afterwards, when Pope Francis appeared on the Capitol balcony and acknowledged the crowd, the cries of “Il Papa” were thunderous, hands clapping and waving wildly. You’d have thought the Beatles had come back to town! As my friend, Rabbi Shoshana said, “As a Jew I never thought I would say how much I love and respect the head of the Catholic church.”

Pope Francis, in his encyclical and by his presence and popularity across the globe, is rallying all people of faith to act to prevent the damage to our God-given earth from getting any worse than it is. In the Pope’s address to the United Nations following his visit to Washington, he spoke about the urgency for all nations who will meet in France at the end of the year for the United Nations Framework Convention on Climate to sign a new international agreement on the climate. This will be a significant; no, a critical moment for the nations to come together and commit themselves to preservation of the world as we know it. It’s also an opportunity for everyone to have a voice in this effort. To that end, I invite all who read this to raise yours by going to the website www.parispledge.com where you may add your name to the list of thousands who urge the delegates in to Paris sign an agreement which, if accomplished, will halt global warming. We are all in this together.

Acting now to save our planet is imperative for future generations to have a safe, clean world; it is crucial so that inhabitants of the poorest nations will have a home; it is our obligation to all life forms, in the grasslands and the watersheds and the great northern forests; to the great blue whale swimming deep in the ocean and to the smallest water bug in a mountain rock pool.