Sermon: Embodiment of Motherhood

roots

On Mother’s Day, I did the sermon at my church, Northlake Unitarian Universalist in Kirkland, WA. The theme of the month was Embodiment – a tangible or visible expression of an idea, quality, or feeling. There is no more literal embodiment than pregnancy and the birth of a baby. I spoke about all the joys, challenges, and complexities embodied in parenthood and our relationships with our own parents.

Here is the >>audio recording.>>, and the companion Slides. And here’s my script:

“So, my husband Peter has a great voice and loves to sing. You may wonder why he isn’t in the choir. Well, it’s because music moves Peter… a little too much. When he’s singing hymns, he gets choked up… may even sob a bit… thanks for those of you who support him when he’s having one of his moments…

We often think of mothers as the sentimental ones… but Peter’s the emotional parent in our family. The one who cries through all the significant life events. Not me.

Ah… but there are a few songs that can do me in… One is that hymn we just sang, Spirit of Life. It’s something about the phrase (SLIDE)  “Roots hold me close, wings set me free” that gets me every time.

I am blessed with strong and deep roots. My parents have lived in Cheyenne Wyoming their whole lives. Mom belonged to the same church for 85 years. In town, I had siblings, aunts, uncles, cousins, and grandparents, and church family, and scout troops, and 4-H groups, and neighborhood buddies. Wherever I went, I heard “Oh, you’re Leila’s grand-daughter” or “Alan’s little sister” or “Erin’s friend.” The roots ran deep.

And yet, we were also all given wings. We traveled all over the U.S. and Canada. We read books and saw movies that taught us about the broad outside world. We had exchange students from many countries. And the wings that our parents gifted us with have carried us far. The only ones left in Cheyenne are my dad, three elderly aunts and one cousin. The other children and grandchildren have flown away to Colorado, Nebraska, Arizona, Washington, North Carolina, Alaska, South Korea, and American Samoa.

We’re all still close and loving and supportive. But, we are not part of each other’s daily lives.

Yes… my parents succeeded at giving us all roots and giving us wings. And we all flew away.

And now I’ve worked to give my children roots and wings… and watch as they fly away, and return, then fly away again…

Roots and wings is just one of the many bittersweet parts of parenting… As Barbara Kingsolver said SLIDE  “Kids don’t stay with you if you do it right. It’s the one job where, the better you are, the more surely you won’t be needed in the long run.”

Today is Mother’s Day. It’s a bittersweet holiday for many of us, for many reasons.

I know I can not speak for all of you. I can only speak from my own experience.  But I do acknowledge and honor that you all have your own stories about the complexities of motherhood… and of being mothered… or not being mothered… of being parents or not being parents and the joys and challenges of children.

I will talk today about three parts of parenthood – becoming a parent, parenting our children, and saying goodbye to our own parents.

First… On becoming a parent.

Our theme for May is Embodiment – Embodiment is “a tangible or visible expression of an idea, quality, or feeling”. There is no more literal embodiment than pregnancy and the birth of a baby.

When I was in college, and Peter and I began dating, I was hit out of the blue by the realization of “I want this man to be the father of my children.” That was a really startling thought! I mean, I’d always thought that I would someday have children, but that moment was the first visceral realization of what that future would look like.

Fast forward to five years after that… I was ready to start on that path. Peter wasn’t yet ready. He kept saying he needed to know more first. I would ask what he needed to know – he’d say that he didn’t even know what he didn’t know! At one point, we went to Barnes and Noble. We found some illustrated guide to birth and parenting. And bought it. And a few days later, Peter decided he was ready. Now, I don’t think he ever actually cracked open the book! Just somehow having it on the bookshelf made him feel like he had the resources he needed to make the leap.

In the end, I think that the decision to have a child is always a leap of faith into the unknown.

That first pregnancy and the birth of Martin – was the embodiment of the love Peter and I shared, of our commitment to a life together, and to becoming parents together. And three years later, with the pregnancy and birth of Izzi, we embodied our idea of a family.

For the next 13 years, if you had asked us if we planned more children, we would have said no. But then… when Martin was 16, and Izzi was 13, we decided we weren’t done being parents of little ones – we still had parenting energy to spare. So, we decided to start again. Slide Ben is the embodiment of Peter and I’s love of being parents, and of living in the everyday messiness of raising a small child.

Now, my pregnancies and my births were our embodiment of our ideas… But, from the moment of birth, each of our children begins their own embodiment. With each day, and each step taken, and each word spoken, they embody themselves, becoming a tangible expression of their own qualities and feelings, separate from our original visions.

Our joy in watching that unfolding in our older kids is a big part of the reason why Peter and I chose to have Ben. It is amazing to share a life journey with another soul as they embody themselves.

The decision to begin a pregnancy is a decision to leap into the unknown, and to be forever changed by the experience. As Elizabeth Stone said: slide “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.”

I am blessed in that Martin, Izzi, and Ben were each planned and wanted pregnancies that came at a time when Peter and I were both ready to welcome a new baby into our lives. That is obviously not the case with all pregnancies.

We know that about 20% of pregnancies end in abortion. We know that of pregnancies the person intends to carry, at least 20% end in miscarriage. My sister experienced many miscarriages. About 6% of women are not able to conceive, and 6% of men are infertile. I know that there are people in this room who have been affected by one or more of these losses, and that Mother’s Day and Father’s Day carry a heavy weight of unspoken memories for many of you.

I am a childbirth educator, and have trained many childbirth educators over the past fifteen years. I’ll share with you some information I share at that training, slide 

These statistics are based on a study of mothers in late pregnancy who plan to parent the child, and a separate survey of dads who are parenting young babies.

So, of that group, 42% of moms, and 46% of dads say this pregnancy came at the right time for them. Yeah… less than half.

15% of moms and 10% of dads say they wanted a baby sooner in their lives. Sometimes it took a while to find the right partner, or for both partners to feel ready. Sometimes it was fertility issues. Whatever the reason, these are long-awaited babies.

34% of moms and 19% of dads say this baby has come too soon. They had hoped to become parents someday, just not right now.

And then just look at these last two statistics. Remember that these are not women who will choose abortion or adoption – they will be parenting. And these are not men who will leave a child behind. These are the dads who stay. 8% of the women had never planned or hoped to be pregnant. 25% of the dads didn’t mean to have this pregnancy with this woman at this time.

Pretty heavy stuff, eh?

So, our children may be an embodiment of our deepest desires. Or, they may be an embodiment of the moment when we gave up our own dreams to care for an unexpected baby. Our complicated feelings about Mother’s Day often begin on the day we first learn we may be a mother…

In addition to being a childbirth educator, I am also a doula. A doula is a professional who “mothers the mother” during labor and birth – providing emotional and physical support, information and advice. I have been at many births. Some were welcoming long-awaited babies, others were adapting to an unexpected surprise.

I worked with one young man and woman, who had only had one date. They each came away thinking the other person was perfectly nice, but they just weren’t that into each other. They expected to never see each other again. But then she discovered she was pregnant. She contacted him. Their mutual plan was to give the baby up for adoption. That was the plan through her whole pregnancy – she met the adoptive family – they showed her the nursery they had prepared. Then three days before her due date, the adoptive family backed out.

After a few days of soul-searching, she decided to parent the child. She contacted the father to check in. Over the intervening months, he had realized that he is gay… he had struggled with that, because he’d always envisioned himself as a dad, and being gay means it’s harder to make this happen… But this offered the opportunity to become a dad in the “traditional way” of an unexpected and unplanned pregnancy. The two agreed to parent together.  When the baby was a few weeks old, they moved together into a three bedroom apartment, and set off on a parenting adventure. The mother shared with me a quote that resonated with her. Slide

“Motherhood is the biggest gamble in the world. It is the glorious life force. It’s huge and scary—it’s an act of infinite optimism.”

Another mother talked to me about this infinite optimism. She had a complex history: an abusive, alcoholic father, an enmeshed relationship with an emotionally fragile mother… her own history of sexual assault and drug addiction. When I met her, she had done a lot of work to become a pretty healthy, stable adult. But to be pregnant…. To choose to bring a new person into a world which had proven itself to be unsafe over and over… She reported that it was the scariest thing she’d ever done… But she took the leap of faith… she gave birth to an angelic little boy with a halo of blond curls. The pregnancy, birth, and caring for that child have been so powerful for her… and have transformed her over time, helping her to heal and grow in ways she hadn’t imagined possible.

As Jon Kabat-Zinn said slide ““In giving birth to our babies, we may find that we give birth to new possibilities within ourselves.”

But embodiment is a messy process. It’s taking the tidiness of a vision and bringing it into our physical reality. You often see art and photographs that depict birth as this beautiful, transcendent, spiritual process. slide  And it is. But, as a labor support doula, I can also tell you it’s a really messy process.  As a mother and a father are embodied, and as a new human being is embodied, there is plenty of blood, sweat, tears, mucus, vomit, stool, and amniotic fluid. There’s pain, and despair, and ecstasy, and exhaustion. It’s quite a mix!

And great boot camp style preparation for life with babies and small children, which is also full of mucus, and vomit, and poop and all manner of bodily fluids!

The birthing process unfolds in its own way, impossible to predict. I have been at births where the baby came so fast, the midwife barely arrived in time. And I have supported women through labors that lasted 62 hours… 76 hours… 82… I have been at births that were smooth and easy and all the parents could have hoped for. And births that were nothing like what the parents had envisioned and they just had to roll with the punches.

In the midst of this unpredictability, you can do a lot to influence the process and create an environment which allows things to unfold as well as they possibly can. But in the end, the birth process is not fully in anyone’s control.

This is also great boot camp preparation for life with kids – you can do a lot to influence them and to create the best possible environment. But in the end, their process is not in your control.

Which brings us to Parenting, and all that Parenting embodies

Northlake subscribes to a resource called Soul Matters, where a network of Unitarian Universalist congregations work together on worship resources all tied into a monthly theme. Slide For May, the summary blurb includes this line: Embodiment is “about noticing that every moment and every context –- no matter how imperfect, messed up and incomplete – is trying to talk to us!”

What I love most about parenting is how it calls us to live in the moment. And noticing all of those imperfect, messed up and incomplete moments.

I’m very good at focusing on projects and getting tasks done. I’m not as good at living in the moment. Spending time with kids helps me get there.  Reading bedtime stories, wading in the ocean, morning snuggles, times when every movie you see is declared “the best movie ever!” Bowling a strike for the very first time, having an a-ha moment when something finally connects, playing with a new puppy, saying goodbye to an old pet, laughing at little sister jokes when they’ve almost figured out how jokes work, belting Broadway show tunes in the car, critiquing the exact details of the performance of one particular line in a favorite play, road trips to check out colleges, birthday piñatas, hide and seek game, log rolling down grassy hills, and times in lines at Disneyland. The Sunday dinners with family, sharing our highs and lows. All of this pulls me out of my task-driven brain, and into the moment. With children, even something as simple as blowing bubbles can be a moment of pure enlightened delight. Slide

And no, it’s not all happy days. There’s also the drudgery of nonstop diaper changes, potty training, nights spent washing sheets covered in vomit. The toddler tantrums to the teenage battles. The shared tears over disappointments. The things you wish had turned out differently.

It is not a cliché for me to say that parenting is truly the hardest thing I’ve ever done. But for me, it is also the most important thing – the most joyful thing. When we decided to start all over again with Ben, it was a testament to that balance.

Not only am I a parent, I’m a parent educator… I work for Bellevue College. All our classes are parent-child classes, which means I get to spend several hours of each week hanging out with toddlers, preschoolers, and kids as well as parents. And I get to know these families over months together. And many families return again and again to my classes, as their children get older. So, there are kindergarteners I’m working with now that I’ve known since they took their first. I love the opportunity to watch these little people unfold and embody themselves, and watch their parents learn and grow.

I tell the parents that there is no such thing as a perfect parent, and there is no one right way to parent. But there are so very many good ways to parent. And what good parenting looks like is a little bit different for every child.

As a parent educator, a supposed expert in the field, having your own children can be humbling. Even as I spend my days teaching other people all my wisdom about how to be the best possible parent, I’m also spending my days learning how to be a better parent to my own kids. Some days, in some moments, I nail it! I even impress myself. And other days… I suck as a parent. I say mean things, I make bad decisions, I miss important clues to what my kids need from me, I tune out just when they need me to tune in.

One of the messages I try to give to all the parents I work with (and that I tell myself on the hard days) is: have high expectations for yourself as a parent, but forgive yourself when you fall short of those expectations, and be gentle with yourself when life is harder than you thought it would be or should be.

I tell parents that my goal with my kids is simple… I’m hoping that when we look back on my parenting, we’ll see that there were good days and bad days, but in the end, hopefully there were more good days than bad. If I’ve accomplished that, that is enough.

Today, we have spoken about birth as embodiment, mothering as embodiment. I want to speak at the end about when we are ready to leave this embodied life behind.

As many of you know, my own mother died just a few weeks ago. But her process of leaving this life has been in process for a few years now. My mother had Alzheimers. Two years ago, she was no longer able to cook or to sew. A year and a half ago, slide she came here for Christmas –but it was a big struggle for my dad and her to travel, even with my sister’s support. By last Christmas, slide she was in a nursing home, no longer able to walk or to feed herself. By this April, slide she was bed-ridden and barely spoke and when she did speak, we could rarely understand. All of us kids had seen that Mom was leaving us for a few years. We had all said our goodbyes. We all knew it was time. Dad was having a harder time acknowledging that.

But as Mom was leaving her body behind, we were still surrounded by things that she had embodied… ideas made tangible. My mother was a maker. Slide  She knitted and embroidered and beaded and made rugs and quilted and took photographs and made teddy bears. Slide  When my older kids were little, each year they would tell her what they wanted to be for Halloween, and no matter what it was – she embodied it… made it tangible.

But her most important embodiment was her family. My mother became a mother in 1961 slide when she married my dad and began caring for my older brother and sister as her own children. slide Then Alan and I came along. slide And then 10 grand-children. slide And then nine great-grandchildren. For each of us, slide she helped to give us roots to hold us close, and wings to set us free. We are a tangible embodiment of her gifts.

As the hymn we are about to sing says: “Children ask the reasons why. In our lives the answers show, and by our love they learn and grow. Touch the earth, reach the sky! All are born and all shall die; life’s the time left in between, to follow a star, to build a dream.”

We all have different dreams that we are building – or embodying. For some of us that embodiment includes birthing and parenting children. Others embody themselves in the work they do, the love they share with family and friends, the ways they give to their community. May we all work to support, nurture and care for each other… because life’s the time left in between to follow your star, to build your dream.

 

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My Mother’s Life

My mother, Alice, passed away in April 2018, at the age of 85. Her memorial service was a lovely end to a life well lived in a community of family and friends. My sister Jamie delivered the eulogy. I’ll share her text below. I also made a video, compiling photos from throughout my mother’s life, which appears below.

The eulogy

A Life in Bits and Pieces

A teddy bear propped in the corner…
A quilt draped over a chair…
Bright colored yarn in skeins and knitted bits…
Hot air balloons and baskets hanging about…
Beaded jewelry and leatherwork, too!
Pictures on walls and in box after box,
Capturing memories
And holding them close.
Mom’s hands, always busy with the tasks before her
Multiple projects in various stages of completion—
Stuffing here and bits of bears there—
A Halloween costume cut for a far-away grandchild,
and an appliqué for a sweatshirt
that is the right color but far too plain;
And fabric—beautiful fabric!—everywhere
For something not quite yet imagined…

It is the movement of Mom’s hands that caught me so much the last time I saw her. She was always busy with her hands, even when she could no longer complete a task. She drove Dad crazy playing with her napkin waiting for lunch, and turning a card over and over in her lap when she could no longer read. Her head and her hands continued to search…and try to create, even if those of us watching could no longer understand the things she tried to create.

Capturing the life of an individual is a daunting task! How—in a few short words and minutes—can we possibly convey the essence of a life between the dates of birth and death? And, even what we put into words cannot contain the completeness of the soul of a person—we who only know the smallest of things about one another! Yet, here is my attempt to do so with Alice.

Mom was born and raised in Cheyenne. Although she was the oldest child of McKenzie and Leila, she was born into a large family of other children. For a number of years, she was the youngest child of this family—and then her brother, Frank, was born. He was the new baby of the family and was well-loved.

Alice had a challenging time as a child because of her eyesight. She had a lazy eye that meant she had to wear an eye-patch; then as now, children are not always particularly kind and they teased her about it. Being different in this way bothered her, she told me once, and it made her very aware of what people said about—and to—one another. The awareness of appearances was something that was very important to her, and she worked hard to make sure that things looked good and appropriate at all times—which sometimes led to some pretty funny family stories, like the time Janelle’s prosthesis got left on the hood of the car—but that’s a longer story to ask Janelle about later…

Alice also had a difficult time with weight—not my problem of having too much of it—but of gaining enough weight. As a child, malt powder had to be added to her milk just to give her a few more calories. I was very aware of this as a teen, carefully watching whether or not someone ordered a malt…or a milkshake. Before I heard this story, I thought the choice was made because of the slight difference in taste rather than calories…that information became important when Janelle needed to gain weight in order to have her chemotherapy—and Mom knew just what to do. This story has come back to me over the last several months as we continued to look for ways to keep Mom from losing weight.

As a young adult, Alice went off to college, and her world expanded. She went to the University of Wyoming in Laramie, mostly riding back and forth on the train. Occasionally, however, she would ride with friends or acquaintances who were coming to Cheyenne. Sometimes those who gave her rides were invited into the house when she got home—and other times they were not because of their country of origin, or ??? Because of that reaction from her parents, Alice learned a sense of hospitality toward others, and the world was often invited to stay in our home when I was growing up. Alice worked hard and she graduated from UW with a BS in Home Economics and a certificate that named her a teacher. She graduated with a love for sewing, knitting, and working with all things having to do with fibers; what she did not graduate with was a great interest in cooking!

Following graduation, Alice taught Home Ec in Basin and Pine Bluffs and then at Johnson Jr. High in Cheyenne. She became a very active member of AAUW (American Association of University Women), and was an advocate for women’s education. She stayed involved with friends from college which soon led her to another great adventure—travel in Europe!

Some time in her late teens, Alice had become pen pals with a woman named Shirley. Shirley lived in England, and so when Alice’s teaching colleagues and friends began to talk of a trip abroad, England was added and Alice and Shirley got to meet. This was an important meeting because Shirley and Cliff became an important part of our family—ask Alan and Brenda for more about that part of the story! That trip was an important foundational part of Mom’s life, and after the service you are invited to look at the pictorial journal she made of that time.

A story—and a life—all take on the life of the storyteller, even as we stay true to what we know to be the facts—so some of you might tell Alice’s story differently, and we would come to know her in a way different than the one I share with you today. So, while I don’t know how intentionally our family began to have global leanings, in my memory and my telling, the truth is that the seeds of welcoming the world were sown from the beginning.

Mom’s early adult life had this momentous trip and the friendship of folks across the pond. And then there is Dad who traveled the world as long as I can remember—one of my earliest memories being a trip to Mexico before Dad and Mom married. After they married, the prelude to every one of Dad’s trips was to get out the world map, lay it on the floor and looking at the places where Dad would be stopping. We even had a map game that we played as a family.

While Dad was gone, Mom was in charge and had to do it all—it was an odd mix of single parent and a family with two parents. When Dad came home, bits of the world came with him in presents that were practical and beautiful. When Dad wasn’t out in the world, the world often stopped by as guests brought by the YMCA—people from Japan, India, Czechoslovakia, France, Germany, and ?. A couple of Exchange Students were hosted, and the Friendship Force became a part of Mom and Dad’s travels and hosting.

With this beginning in Mom’s life and Mom and Dad’s life together, it should be of little surprise that our family is a global family. Shirley and Cliff were our English family before Sharon joined us and added Northern Ireland: Peter joined us and adding in family from a new location in England and Argentina and a Spanish influence; John, as a second generation child of immigrants, added back in more of Scotland; grandchildren added in S. Korea, Tajikistan, Mexico, and American Samoa—and probably other places that I am forgetting. Great-grandchildren will surely continue to broaden the global basis of our family. Nowadays, in order to talk about our family, we bring out the global map and look for who is where and who is traveling.

Like her mother before her, Mom stepped into a ready-made family. It was not easy to do—and it was not without a number of challenges, bumps and bruises—which are stories for other times and places! Dad and Mom married on November 18, 1961. Even though it complicated things, they got married during the middle of the school year, so that by the time Christmas break came along, we would already “be a family” together. Roger and I helped make that very “real” for Mom by coming down with Chicken Pox for her to deal with on that first Christmas we were all together. Surprise!

Dad and Mom were married right here in First UMC. A few years ago when Mom and I were talking about this, she told me that she had insisted that the children—Roger and I—would be a part of the ceremony. In 1961 this was a pretty radical request, because divorce was not spoken of in polite company at the time. So Roger carried their rings and I carried flowers…Without knowing the history of this, but remembering its importance for me, this has set my policy for blended family weddings since I have been in the ministry.

For her wedding, Mom made her wedding dress and my flower girl dress; and as a surprise for me on Christmas morning, Mom gave me a life-size doll wearing a wedding dress like hers! Unfortunately, I was not a doll person and so did not fully appreciate the sweetness of the gift and its intentions to bring us close. Mom continued sewing clothes for all of us, often making them out of the same fabric so that we could easily be identified as a family—six of us dressed in matching shirts was an amazing sight! When I got married to my first husband, she made my wedding dress…and dresses for the attendants as well…and Janelle’s wedding dress…and so many other outfits throughout our lives…

Alan and Janelle were delightful—and begged for—additions to the family. Alan’s coming along meant that Mom had to stop teaching—teachers weren’t allowed to teach when pregnant, so as soon as she started to “show” she had to quit. After Alan was born, Mom worried. Alan could not keep food down and Mom had to fight with the doctor about whether Alan was “throwing up” as Mom described it, or “spitting up” as the doctor assured her Alan must be doing. The doctor finally listened when Alan threw up on the doctor during one of their visits! Finally concerned, the doctor looked a little more closely and Alan was whisked away to surgery where they repaired a flap in his stomach that would not stay closed after eating. Following surgery, Alan grew and flourished—becoming adventurous and risk-taking!

Janelle’s birth made for perfect bookends for the children in this family—a girl on either end and two boys in the middle! After Janelle was born, I made life a little difficult for Mom and Dad, because I told them they couldn’t bring her home with the name they intended—and I told them her name was to be Janelle Lynn. For whatever reason, I got my way, and Penny Sue became Janelle Lynn and my favorite sister!

We traveled…we camped…we saw the states and National Forests and museums—and one time found ourselves on the edges of a civil rights demonstration in New Jersey. We got lost looking for the ocean and we wandered around looking for things of interest to four rambunctious children. Mom was present through all of it—broken bones, injured limbs, surgeries and high fevers. And when Janelle began her journey with cancer, Mom was there to drive Janelle back and forth for chemo, doctors’ appointments and connecting with the school. Together, Janelle and Mom developed a teddy bear give-away program called “Tender Loving Bears” with Denver Children’s Hospital. The last known count of bears made and given away to people with cancer was 1,986 bears.

Alice gave herself away over and over again, serving as a leader for scouting programs and 4-H, UM youth group sponsor, Make It With Wool program, driver of carpools, UMW, and the hospital here in town. Groups that Dad and Mom were a part of often got her volunteer hands as she would organize and send out newsletters and take other positions of leadership, and everywhere she went she took pictures to help her tell the story of each trip when she and Dad would visit us kids in our far-flung lives—because they did visit all of us, making it a priority and using the motor home to full advantage. Through it all, her hands were always busy making something for someone…

All of that is part of why this last bit of Mom’s life was such a challenge.  Cancer—when she faced it for herself—did not seem to frighten her or hold her back, but these two forms of dementia were a completely different battle. They edged their way into her life and she begin to be lost in her own smaller and smaller world as she lost her voice…and her words…and her mobility. To watch someone who has been so productive and involved no longer be able to reach out beyond the boundaries of her mind is so difficult! And Dad was there through it all—willing Mom to get stronger and better; until the very end…and the family that she helped to form began to gather by phone and in person.

A teddy bear propped in the corner…
A quilt draped over a chair…
Bright colored yarn…
Hot air balloons…
Pictures and memories…
Hands always busy…
projects—bits of bears—
A costume…an appliqué…
And fabric, everywhere fabric…
For something not yet imagined…

As we come and celebrate her life, we are the last quilt, the last weaving that she never fully imagined. And I am grateful. Thank you all for being a part of her life—of our lives; together we are beautiful!

The video tribute

The Guests at the Memorial Service

My parents both spent almost all their years in the same city, with 56 years living in one house, Mom was a member of the same church for 85 years, and very involved in many ways in the broader community. The people who attended her memorial service came from all the different groups she had participated in. Just some of the people who came to the service to honor her and support us:

  • Someone who has known Mom since they were toddlers in the early 1930’s – they’d been to school together, been neighbors, and been in community groups together.
  • A group of folks from the hot air balloon club, and more from the motorhome club.
  • Someone who I babysat when I was 12 and he was 6.
  • Two of my brother’s best friends and the mother of one of my best neighbor friends from our childhood in the 60’s and 70’s.
  • Someone who volunteered with my mother for all of the 80’s and 90’s in a group that offered peer support for parents of kids with cancer.
  • Guys my Dad worked with at the Guard – he retired from there almost 30 years ago.
  • Lots of people from Mom’s high school class of ’51.
  • Two members of my sister’s new church (she’s a minister) who drove 4 hours to support her.
  • Folks from their retirement community who have just known Dad for a few months since they moved in, but have seen how he went to see Mom every day for the past many months she spent in the nursing home.
  • The owner of the funeral home, who was in church youth group with us.
  • My siblings, their spouses, my aunts, my cousins, my half-sibling’s mother…
  • The coffee was served by the same women who I knew as the “church ladies” when I was a kid.

It was a lovely day, re-connecting with all these folks who have touched my family’s life, many of whom I had not seen in 30 or more years. It was beautiful to see all the people who had made long-term connections to my mother and to my family.

Why Amputees Should Skip Universal Orlando Resort

UniversalStudiosHollywood

Note: I wrote this post in February of 2018. As of November 2018, Universal Orlando is just as bad as described below. However, Universal Studio Hollywood has changed their policies, and according to the newest guides (linked below), a single AK amputee like me is now able to ride all the rides there EXCEPT Harry Potter and the Forbidden Journey and Revenge of the Mummy. So, amputees, take your tourism money (and your family and friends) to California, not Florida!

I have had one leg for 35 of my 50 years. I’m an above the knee amputee. I don’t wear a prosthesis – I use crutches. Our family loves theme parks, and I have ridden on countless rides in countless theme parks over the past few decades, including several fun trips to Universal Studios Orlando and Universal Studios Hollywood. Each time, I rode all the rides there with no problems at all. Then we visited US Hollywood in February of 2015, and I discovered that suddenly I was banned from most of the rides there.

No one told me this when I arrived at the park. After waiting in a 60 minute line for a Harry Potter ride, I was told I could not ride. (No one told me when I got into the line.) I asked if there were any other rides that had the same restriction. They said they didn’t know, but thought maybe the mummy ride might. Then, I ended up spending much of the day being told many times that I could not ride a ride, but no one could tell me which were OK and which weren’t.

While my family was on one ride without me, I used the magic of the internet to discover that Universal has full guides listing all the restrictions on rides for people with various disabilities. (I’m not sure why none of the employees knew this.) You can find the “RIDER’S GUIDE For Rider Safety and Guests with Disabilities” for Universal Orlando Resort here: www.universalorlando.com/web/en/us/files/Documents/universal-orlando-riders-guide.pdf, and the “Rider’s Guide for Rider Safety and Guests with Disabilities”for Universal Hollywood is here: http://info.universalstudioshollywood.com/site-content/uploads/2018/09/Riders-Guide-Sept-2018.pdf

After perusing the guide, I got very familiar with the phrase “When seated, both legs (natural or prosthetic) must extend to edge of seat or terminate below the knee.” It appeared MANY times in the guide. By reading the guide, I discovered there were very few rides I was actually allowed on. I couldn’t even go on some of the kiddie rides!

While my family was on another ride without me, I researched why the policy had changed so drastically. It turns out that in 2011, a double amputee fell from a roller coaster and was killed. This man had no limb on one side, and a short stump on the other, and rode a roller coaster with a lap bar and seat belt belt for restraints.

“once it was rolling, Luffred said, he realized the belt and lap bar in the coaster might not hold his uncle, who had no lap. The coaster quickly climbs to an incredible height, sending cars on a 70-mph plunge. It then torpedoes through two circular loops and crests another hill — where, his nephew said, Hackemer was ejected. “The last time I saw him was when he was flying out,” he said. “He didn’t have anything holding him down.”

Certainly that was a tragedy, and I get that it made sense for every theme park to evaluate their safety mechanisms to prevent future tragedies. It makes sense for ride designers to take these situations into account so they can make the rides safer for amputees and everyone else in the future.

But, I think Universal has gone too far. Their restrictions affect too many of their attractions. I personally would not ride on a looping roller coaster with only lap restraints. With “half a lap”, I don’t feel this would be safe for me. But many of the rides I’m barred from at Universal are nowhere near this degree of risk. Not only do I THINK they would be safe, I know they are, because I have ridden them in the past!

Here’s the list of what I can’t do at Universal Studios Hollywood – you can see the red circles on the map at the top of this post, which shows all the things I can’t ride. The short answer is – I’m banned from pretty much all the rides.

  • Despicable Me Minion Mayhem
  • Flight of the Hippogriff
  • Harry Potter Forbidden Journey (Ben)
  • Jurassic Park the Ride
  • Revenge of the Mummy (Ben)
  • Simpsons
  • Transformers the Ride

In Orlando, here’s what I’m banned from:

  • Cat in the Hat
  • High in the Sky Trolley
  • Pteranadon Flyers
  • Jurassic Park River Adventure
  • Harry Potter Forbidden Journey
  • Bilge Rat Barges
  • Incredible Hulk coaster
  • Storm Force Accelatron
  • Dr. Doom’s Fearfall
  • Hollywood Rip Ride Rockit – US
  • Revenge of the Mummy – US
  • HP Escape from Gringotts – US

Ripsaw Falls and Caro-seuss-el I MIGHT be able to ride on. It’s unclear in advance.

These rides luckily only require one leg, so I can actually ride all of them: Flight of the Hippogriff, Amazing Adventures of Spiderman, Despicable Me Minion Mayhem, Transformers, Race through New York, Reign of Kong, Men in Black Alien Attack, Twirl and Hurl, Simpsons Ride, ET Adventure, Woody Woodpecker’s Coaster.  (Note that some of those rides – in bold type – share names with some I’m banned from in California. It’s possible the design differs between parks, but it seems that if they’ve figured out how to make them do-able for people with one leg in one park, they should be able to transfer that design to the other park.)

So, here’s what my day in Orlando would look like… the red circles show things I’m banned from. If it has a pink circle, I’m allowed on it, but I’d likely need to have the guide in hand to show to ride operators to convince them that it was OK for me to ride.

Islands

USFlorida

My family has loved going to Islands of Adventure for years. And we’re huge Harry Potter fans, so we would love to spend more time at the Wizarding World. But I’m questioning whether I want to return to a Universal Studios Park when it would mean a day spent mostly sitting around by myself while my family waited in lines and rode rides without me. They would skip the rides for my sake and just do the shows, but I’d feel worse about that than I would feel about sitting alone.

In most of my life, I don’t really feel handicapped. There are very few things that my amputation has prevented me from doing. Due to these policies, I feel more disabled at Universal Studios than anywhere else I’ve ever been in the past 35 years.

At Disney, I can do every single thing in the park! It is possible to make theme parks accessible. I wish Universal Studios was doing a better job of it.

Hymns in Singing the Journey

This is the Song Index for Singing the Journey a Unitarian Universalist hymnal to supplement Singing the Living Tradition.
Both hymnals available from the UU bookstore: www.uua.org

I was not able to find an index anywhere online, so I compiled one. This is a work in progress. For some, I’ve put links to recordings of these hymns where you can hear the music. If you have notes to add, or links to recordings, please suggest those in the comments. Other UU Hymn resources at the bottom of the list.

Transcending Mystery and Wonder

# Hymn Title
1000 Morning Has Come
1001 Breaths. Based on this poem.
1002 Comfort Me. Video.
1003 Where Do We Come From
1004 Busca el Amor
1005 Praise in Springtime
1006 In My Quiet Sorrow
1007 There’s a River Flowin’ In My Soul
1008 When Our Heart is In a Holy Place
1009 Meditation on Breathing
1010 We Give Thanks
1011 Return Again
1012 When I Am Frightened
1013 Open My Heart

Words and Deeds of Prophetic Men and Women

1014 Standing on the Side of Love; The composer has requested that the words be altered to “Answering the Call of Love”
1015 I Know I Can
1016 Profetiza, Pueblo Mio
1017 Building a New Way. Video
1018 Come and Go With Me
1019 Everything Possible
1020 Woyaya
1021 Lean On Me
1022 Open the Window
1023 Building Bridges. Mp3. In Rise Up Singing
1024 When the Spirit Says Do
1025 When will the fighting cease
1026 If Every Woman in the World
1027 Cuandro el Pobre
1028 The Fire of Commitment
1029 Love Knocks and Waits for Us to Hear

Wisdom from the World’s Religions

1030 Siyahamba
1031 Filled with Loving Kindness
1032 Daoona Nayeesh
1033 Bwana Awabariki. Mp3.
1034 De Noche
1035 Freedom is Coming. Mp3
1036 Calypso Alleluia. Video

Jewish and Christian Teachings

1037 We Begin Again in Love
1038 The 23rd Psalm
1039 Be Thou With Us
1040 Hush
1041 Santo
1042 Rivers of Babylon
1043 Szekely Aldas
1044 Eli, Eli
1045 There is a Balm in Gilead
1046 Shall We Gather at the River. Mp3
1047 Nada Te Turbe
1048 Ubi Caritas
1049 Vieni Spirito Creatore
1050 Jazz Alleluia

Humanist Teachings

1051 We Are…
1052 The Oneness of Everything
1053 How Could Anyone
1054 Let This Be a House of Peace
1055 How Sweet the Darkness
1056 Thula Klizeo
1057 Go Lifted Up
1058 Be Ours a Religion
1059 May Your Life be as a Song
1060 As We Sing of Hope and Joy
1061 For So The Children Come
1062 All Around the Child

Earth-Centered Traditions

1063 Winter Solstice Chant
1064 Blue Boat Home. Video
1065 Alabanza
1066 O Brother Sun
1067 Mother Earth, Beloved Garden
1068 Rising Green
1069 Ancient Mother. Mp3
1070 Mother I Feel You
1071 On the Dusty Earth Drum
1072 Evening Breeze
1073 The Earth is Our Mother
1074 Turn the World Around

More sources of info for UU Hymns

https://sites.google.com/a/uucrt.org/main/board-and-committees/arts/hymns-in-singing-the-living-tradition  has a list of all the hymns in Living Tradition hymnal, with notes on how “singable” they are, and links to videos, recordings and words for some hymns.

Notes from the Far Fringe, http://farfringe.com/hymn-by-hymn-introduction/, has blog posts with her reflections on every single hymn. She includes lyrics for many hymns, which is hugely helpful, if like us, you project them on the wall for services. Being able to copy and paste what she typed up will save us a lot of effort in transcribing. (Copyright reminder: you should only project lyrics if you also own the hymnal. Learn more.)

A list of “folk-ish” tunes that appear in the two hymnals is at www.danielharper.org/blog/?page_id=1311, with notes on which hymns also appear in Rise Up Singing. (Rise Up Singing songbook includes guitar chords).

www.mluuc.org/mluuc2/hymnal/hymns1.php – another index of hymns in Living Tradition, includes links to words and videos for many

Links to more videos and mp3’s of hymns in Living Tradition can be found at https://westforkuu.org/members/worship-resources/songs/   This puts them in order based on how “singable” they are.

On the UUA’s website about Singing the Journey, there are notes about some songs: http://www.uua.org/worship/music/hymnals/journey/songinformation.

Everything Possible – A Mama-logue

 

everything

This is my new monologue from this year’s Mama-logues, a comedy cabaret about mothers, children, and parenting….

Back in 1993, when my oldest was a baby, I was a clueless and exhausted first-time mom. In the middle of the night, as my child was crying, I often sang a song called Everything Possible by Fred Small. “You can be anybody you want to be, you can love whomever you will, and know I will love you still….”

Beautiful sentiment right? But I confess one of the main reasons I sang it was it was one of the longest songs I had memorized, and I could just press play in my head and sing it through while I was half asleep…

But… it did have a message we wanted to share with our kids… a message we gave over and over… “we will love you no matter what… really…. no matter what…” I joke with my kids sometimes saying: “I mean, if you become a serial killer, we’re going to have to have some really serious talks, but I will still love you…”

That song included the line “some women love women, some men love men…”

I told my kids that it was totally OK with me if they turned out to be gay. But I also admitted that I hoped they would be straight. Because that’s an easier road to walk in our society today. And because I’m their mother, I’d really love for their lives to be as easy as possible.

Well, sure enough, over the years, they both came out to me. In their teen years, they both came out as bisexual. And you know what? It was OK. Really it was. And it was made easier by the fact that societal attitudes toward homosexuality have made such massive shifts over the past few decades. Who could have guessed back in 1993 that gay marriage would be legal nationwide in 2015!!

Their identities have evolved over the years.

My middle child now identifies as bi-romantic or lesbian but asexual. I, of course, support her and love her. (And, if I must be totally honest, it’s really kind of a relief when your college age child tells you they’re not interested in having sex…. Lifts a whole lot of worries right off your shoulders!)

Now, my oldest child… the one we knew as my daughter Amelia? Well…. Two and a half years ago, that child came to us and said…

“Mom and Dad, I need you to know… I’m a man. I am your son. And my name is Martin.”

We’d had hints this might be coming… but only for a year or so.

Most of their life, this child presented as not just a girl, but very much a girl. In grade school, distancing themselves from the boys, talking about how boys are jerks and hanging out with the girls.  In middle school, as the curves came in, embracing and showing off that curvy body. Embracing the image of “gamer girl” while playing dungeons & dragons and watching anime.

So… unlike the families of transgender kids who say “well, I guess I’ve always known”, I did NOT have that experience!

I accepted his word that this is who he is. I did. I did! But yet… I had such a hard time grasping it…. I said “but… but… you always acted like a girl… you always embraced being a girl… right??” He said “Yeah, I did. And I meant it at the time. Maybe that was defense against a truth I wasn’t ready to acknowledge.”

I accepted this new identity. I did! But yet…. I said “do you remember how I said I kind of hoped you were straight, because that’s an easier road to walk? Now you’re telling me that you’re going to be walking on a really, really hard road. We’ve made so much progress on gay rights that that doesn’t scare me that much any more. But transgender rights or even awareness?? Oh honey, that’s not there yet! Are you SURE this is the path you need to walk?? Isn’t there another way?”

Now, I know the answer to that. An old friend came out as transgender about ten years ago. She told us that she tried to deny her gender for years, and it hit the point where every single day of living as a man she had to talk herself out of committing suicide. She finally had to say to her wife: “I am a woman. I know you thought you married a man, and you didn’t choose this… but if I’m going to stay alive to parent our children, I need to do that as a woman.” Ten years later, they’re still together, and they and their children are doing well…

I am so glad that my beautiful, wonderful child does not have that level of dysphoria that my friend had. Amongst the cisgender population – folks like me who have a gender identity that matches their biological sex – the chance they’ll attempt suicide is less than 5%. Amongst transgender people it’s 41%. I am so glad my child does not feel this degree of self-hate. But he does have dysphoria… when people refer to him as “she” or “her” he does have that sense of wrongness… When people say “he” or “him”, he feels like he is being SEEN.

So, we began a new journey, me and my oldest son…

We’ve stumbled along the way.

There was a period early on where he instituted a pronoun tax… if I accidentally mis-gendered him, then I owed him a quarter. And believe me, the jar filled up fast.

Now I’m really good at his gender… but now sometimes I accidentally switch to the wrong pronoun for one of my other children! Or for the dog…

Learning the new name was tricky: you know how when you’re talking to your spouse about one of your co-workers… You start a story and say “I was talking to Laurie… you know – from work?” I was saying to my spouse “I was talking to Martin… you know – our son?”

There are some odd moments of having a transgender son on testosterone. Recently, I confronted him and said “are you the one who used up all my maxi pads?” and he said “no, Mom. No, the only reason I’ve been in your bathroom lately is to use Dad’s razor.”

The person who had the easiest time adapting was our youngest child. Ben was 3½ when Martin came out. Ben accepted the change without blinking.

A short while later, we saw a close family friend, and Ben said “I used to have two sisters, but now I have a brother and a sister.” Our friend laughed and started to correct Ben, and we’re like “Well… actually…. There’s something we need to tell you…”

A few months later, Ben learned about a character in the Mario Brothers games named Yoshi…. the green turtle-y dragon thing? Ben asked if we would call him Yoshi. We said sure, thinking it was just for that day. After that, Ben insisted on being called Yoshi. For the next 11 months. Everyone at preschool believed that to be his real name.

He has now returned to being Ben… turns out that it was “just a phase.” But Martin… is still my son Martin. It’s not a phase, it’s who he is.

Like all mothers, I want my child to be healthy, and happy, and whole. So, when he introduced himself as my son, Martin Emilio… and later introduced me to his boyfriend Xander, what else could I say other than “you can be anybody you want to be, you can love whomever you will… and know I will love you still.”

———————————–

Resources:

PFLAG’s Guide to Being a Trans Ally: covers all the basics, including defining terminology like cisgender, transgender, gender expression vs. gender identity vs. sexual orientation.

GLAAD’s Tips for Allies of Transgender People: actions you can take to “help change the culture, making society a better, safer place for transgender people…”

The National Center for Transgender Equality’s Supporting the Transgender People in Your Life. Tips on interacting with transgender people, being an outspoken ally, changing businesses and schools, and changing the world.

How Do You Do It? … On being a one legged mama

Each year in Seattle, there’s a show called “Mama-logues,” a comedy cabaret about motherhood, for people who are mothers, have mothers, or know mothers. This is a piece I performed in 2013 and again in 2017, on being a mom with a “disability.”

I know about a developmental milestone that you won’t find in any book. At exactly three and a half year old, all children notice that I only have one leg. Really. Universally, if a child points me out in Starbucks (“mommy, look, that lady only has one leg”) they are guaranteed to be three and a half.

Past the age of four and a half or so, they’ve learned not to say anything out loud. But you all have a 3 year old in your brain, that couldn’t help but comment when I came out on stage…. “hey, that lady only has one leg.”

When some people see me, especially on the stage at Mama-logues, they may wonder… does she actually have kids?

Why yes, I’ve got three of them – a 23 year old, a 20 year old and a 6 year old.

People ask me “How do you do it? What is it like to take care of a baby when you only have one leg?” I’m like “I don’t know…. What is it like to take care of a baby if you have two legs?”

But really, having one leg has rarely seemed like an issue to me.

I had two legs for the first fifteen years of my life, then I had bone cancer and an amputation, and now I’ve been an amputee for over 35 years… This is my body, and this is just how I go through life.

And as for parenting and caring for my kids, I figure things out as I go along, just like you all figure out parenting as you go along.

It started 23 years ago, I was pregnant with my first.

Sure, there was a little trepidation going in… what would pregnancy be like? How would I carry a baby? A toddler?

It actually turned out that the whole pregnancy thing was easy for me. I remember going to my childbirth classes, and getting down on the floor for relaxation exercises and breathing practice [hoo-ha, hoo-ha]. When we finished, I’d stand back up – no big deal. Then I’d look around and see all these other two-legged mamas struggling to their feet, needing their partner’s assistance to get up off the ground. Oops… should I make it look harder for me next time?

When I’m carrying my babies and toddlers, sometimes well-meaning strangers approach me to see if I need help. I appreciate their gesture, and I hope they also make those offers to parents who do need help.

But, I have to also laugh sometimes. Like when I am getting my toddler out of the car at the community center, and this lovely older couple offers to carry him inside for me… I say thanks, but I’m good… the couple says “Oh, can you carry him by yourself??” I’m thinking – “y’know, if I couldn’t carry him inside by myself, why would I have brought him here by myself??”

I’m tempted to tell them: “you know, not only can I carry a baby by myself, I can walk upstairs while carrying one. And not only that, I’ve walked upstairs on my crutches while holding and breastfeeding a baby… how many people on the planet do you think can do that?”

Do I do some things differently than I would if I had two legs? Almost certainly. But I don’t feel like there are many things I CAN’T do – I just have to adapt and be creative sometimes.

Once when our older kids were little, we took them ice skating at Christmas time. The plan was for Peter to help the 3 year old skate – but it turned out the 7 year old needed help too. So, I was helping Izzi. Can I walk around an ice rink on crutches while holding up an ice skating pre-schooler? Sure, you bet.

But then, the staff at the rink came up and told me no one was allowed on the ice without ice skates. I pointed out our situation, but they insisted. I said “Seriously?? You really think it would be safer for everyone if I were to put on an ice skate??” They said that was the policy and they couldn’t let me on the ice with Izzi unless I had skates. The 7 year old was worried, my 3 year old was sad. So, I just said to my kids: “No problem, I can do this.” And I went and put on one ice skate, made my crutches three inches taller, and back we went to the ice rink.

And it was fine. A few years later my kids wanted the family to go roller blading. We tried it. The kids and my husband both fell LOTS of times when they were learning… Me? Piece of cake. It’s actually easier to roller-blade on crutches.

Do my kids need to adapt to the fact that I have one leg? Nope, it’s all they’ve ever known. By the time my son was 11 months old if he wanted me to go somewhere with him, he’d go get my crutches and drag them over to me.

There are some things we do differently… My kids know we don’t play the chase game – the run away from mommy in the parking lot game – Because I couldn’t catch them if they ran from me. They know when I say stop, they stop, or we go home. Period.

My son’s kindergarten math problems are more complicated to figure out in our household than they might  be in yours…. “If four people want to go ice skating, how many skates will they need?”

My kids are experts at answering all the questions that kids in the playground ask about “how come your mom only has one leg? Did she break it… right off??”

Are there perks to this life with a one-legged mom? Yep – has your child ever dropped his Thomas the Tank Engine in a parking lot, and had it roll away so it’s way way out of reach under a monster SUV? Ever had to figure out how to get it out before the toddler melts down? You know, it’s really easy if you carry a four foot long pole with you everywhere you go!

Works for knocking frisbees down out of trees too. Or pushing a kid on a trike.

Plus I bet your kids would rather go to Disneyland with me than you! At the airport, we get skipped right past those long lines at security…. We board the plane early… we get to park our car really close to the park entrance, and yep, we get to skip all the lines… wanna do Space Mountain again, kids?

People ask me all the time “how do you do it?”

I do it because I have to for my kids.

I know that out in the audience, there’s a parent of twins, or a parent of two kids under two, or a parent of a child with autism or ADHD, or folks who face plenty of other challenges. And people say to you all the time “I just don’t know how you do it.” Right?

Here’s the thing: we do it because we’re parents. We do it because our kids need us to do it. And every day we figure out how to do something new, because our kids need something new. It’s just what parents do, whether they’ve one leg or two.

Identity: Living Life on One Leg

This is the text for a sermon I gave on March 12, 2017 at Northlake Unitarian Universalist Church in Kirkland, WA.

Identity

Our worship theme for March is identity. Many things shape our identity. Some of those influences are beyond our control – such as our race, our sex, the circumstances of our birth.  But other parts of our identity are in our control… they’re based on the choices we make and the actions we take. Thus, we are shaped both by the circumstances which thrust themselves into our lives, and by how we choose to respond to those circumstances.

Identity is multi-layered. We have

  • our internal identities – how we perceive ourselves.
  • our broadcast identities – what we intentionally present to others – which may vary depending on who we are presenting to
  • our external identities – how others perceive us, which is colored by their own life experiences and learned biases.

When human beings meet someone for the first time, we very quickly make assumptions about their identity. One study showed participants a photograph and asked for participants to describe that person. Let’s all try it… take a really quick look at a picture…

Now ask yourself – do you believe that person is trustworthy? Or not? Likeable? Or not? In the study, viewers formed remarkably consistent impressions after seeing an image for only 1/10th of a second.

Another study revealed that even if people were later given additional information that contradicted their first impression, it was difficult for them to over-ride their initial thoughts.

modelmayhem.com/scardicchio

First impressions are snap judgments. When you meet someone for the first time, you do a quick tally of all the ways that person is either like you or not like you, is like the people you know and trust or is different from the people you know and trust. You take into account their race, gender presentation, clothing, hairstyle, weight, voice, accent and more. You create a story in your head, making a variety of unconscious assumptions based on what you see and hear, interpreted through your own lens.

When someone sees me for the first time, what most people notice is not my race, my gender, the fact that I wear glasses, the color of my shirt… the first thing they notice, even from a distance, is that I only have one leg.

And they begin constructing stories about me based on that singular fact. And yes, it’s an important fact, and the story has certainly helped to shape my identity. But my disability does not define me. There are many other things that form my full identity and that make me all that I am.

Today, I’m going to follow the approach of Ira Glass on This American Life, and I’m going to tell you a story in three acts. Act one: So, what happened to my leg? Act two: What is my identity? Act three: how does this relate to the broader questions of identity and privilege?

Act One – Why I have one leg

Let’s jump back to my ninth grade year. I was 15 years old. I’d had an easy uneventful childhood and early adolescence. I’d lived in the same house my whole life, and had a calm family life, with dinner on the table every night at 5:30 pm. My older siblings and my parents were always around if I needed them, but I’d been raised to be very independent. I was pretty athletic. I was happy socially, with plenty of friends. I was one of the top students in school. Overall, a pretty together, yet pretty typical kid.

Then… on New Year’s Eve, I found a lump on my right leg, just above the knee. I started freaking out, convinced it was cancer. In a panic, I went to my brother. He took a quick look, and declared with all the confidence of a 17 year old sage, “Eh, it’s just a swollen muscle. Wrap it with an Ace bandage and it’ll get better.”

So, that’s exactly what I did, for the next month.

Didn’t mention anything to my parents or anyone else, because it was just a swelled muscle… no biggie.

On a Sunday at the end of January, I went ice skating with my church youth group. By Monday night, I couldn’t walk without limping. When I showed my mom the lump, she scheduled a doctor appointment for Tuesday morning. I went to my doctor, who took one look, sent me for x-rays and sent me to meet with an orthopedist that afternoon. That doctor took one look at the x-ray, and told us he was sending us to Denver Children’s Hospital that night. The next two days were a whirlwind of tests, and a biopsy, and a diagnosis. Osteogenic sarcoma. Bone cancer. The lump I could see that was the size of my fist was half of a tumor which went more than halfway through my femur.

So, by the end of the week, there were decisions to be made. The best option was one month of chemo, then an amputation, then 8 more months of chemo. With that aggressive treatment, they estimated that my five year survival odds – the chance that I would reach 20 years old – was about 20%.

You would think that would have been terribly frightening. And it may have been for my family and friends. Though if it was, they hid that fear from me.

But, I didn’t hear the odds as an 80% chance I wouldn’t survive. I heard that I just had to be in the top 20% of people in this situation. And remember, I was kind of a cocky kid, confident in my own abilities. I’d never gotten less than a 90% on a test in my life… I was always in the top 10% of everything. So this was a piece of cake. If I just went through the required steps, it would all turn out fine. I never doubted that. (Gotta love an adolescent’s belief in her own immortality, eh?)

Thus began nine difficult months of chemotherapy, amputation, more chemo, physical therapy, more chemo, getting an artificial leg, more chemo… I was sick as a dog. I’d get my treatment, then spend 3 or 4 days vomiting… then I’d have ten days to recover, then start again. I was the same height I am now – 5’4” – and after a few months, I weighed 55 pounds. But I was back at school by partway through March, and finished 9th grade with my class. With an A- average.

I’d lost all my hair, and that was a big deal to me. I NEVER let anyone see me without my wig – even on my sick days at home. The idea of being bald was much more upsetting to me than having one leg. This ended up being a great coping mechanism in the long run – my hair would grow back and my leg never would…

A year after this process started, I was back in school full time, back to a reasonable weight, my hair was growing in, I’d gotten pretty good on my artificial leg, and I was learning to ski.

Five years later, not only had I hit that 5 year survival mark healthy and cancer free, I was in college in Boston and doing fine. I’d started as pre-med but moved into sociology. I’d decided I was more interested in supporting people through the social and emotional challenges of illness than through their medical care. I wasn’t skiing much, because the mountains of New England are disappointing when you’re used to the Colorado Rockies. But I’d started a new hobby of renaissance dance.

Ten years later, I was living in Redmond, married, working as a social worker at Children’s Hospital with kids with cancer and I was pregnant with my first child….

Now, it’s 35 years later. Today, March 12, happens to be the 35th anniversary of my amputation. Not only have I been cancer free all that time, I’m generally in overall better health than most of my peers.

So, that year I spent on chemo was, to be honest, a really crappy year. And, yes, my treatment resulted in me losing my leg. But, in retrospect, it’s not so bad when it buys you 35+ years of good health. It also bought me a whole lot of perspective. Having that close brush with death ingrained in me a few attitudes like “life’s too short to hate your job” and “anger and hate only waste precious life energy.”

When I was diagnosed with cancer, I was a 15 year old on the cusp of defining my identity and figuring out who I would be as an independent adult. So, losing my leg at that developmental point obviously had a big impact on shaping my identity. And yet… the fact that I’m a cancer survivor and an amputee is old news for me. There’s so many other things that matter to me at least as much. So, let’s move on to:

Act Two – What is my identity?

When we look at the question of identity, many times we’re asked to simplify things down to one label, like checking boxes on a form. The problem is those labels are defined through the lens of our dominant culture which makes a whole lot of assumptions in what options they offer. Choosing which box to mark isn’t always as straightforward as it seems.

The question “What is your gender” is almost always followed by two boxes.

The answer is not that simple, as my transgender son can tell you.

Race is not simple… a Chinese American man shared on an NPR story how picking just one box meant choosing one race over another – denying part of his ancestry. And choosing “other” wasn’t very satisfying.

And how about religion? There’s several of you I see here at church every Sunday… but I’m guessing many of you are stymied when asked whether you believe in a supreme being. I imagine most Unitarians want to write in “it’s complicated.”

So, when I see a form asking if I’m disabled, I have an internal debate about my answer. First, it’s the word… Although most advocates recommend using the word disability, I personally don’t like the word disabled, because it implies that I am not able to do things.  I can do almost everything… I can ski, or ice skate, or roller blade… I can carry a kid. I can move furniture. So… I can’t run. And I can’t do ballroom dance or tap dance with complicated footwork like “step-ball-change”. But I don’t feel “disabled.”

I generally describe myself by saying “I have one leg” or “I use crutches.” If I had to choose a label, I like handicapped – because in sports, you give a “handicap” to the really talented person so other folks have a chance of keeping up.

But, beyond language choice, when deciding whether to mark a box, I end up asking “why are they asking the question?” (My husband and my kids are “Hispanic” and they ask themselves these same questions…)

  • If it’s a demographic survey to assess needs (like “do we need to offer services for the disabled?”) then I always add my check mark to the tally to increase the chance that people who need services will receive them.
  • If it’s something asking specifically if I need services, like a tour asking whether I would “need special accommodations”, I say no, because I don’t.
  • If I think saying yes will benefit me at the detriment of someone else, I say no. For example, I was offered a scholarship for grad school that was earmarked for a person with a disability. I asked them to offer it to someone else. I could afford the tuition, and many could not.

So on paper or online, I can make choices about whether to reveal my disability. In person, in how I present myself to the world, I also make choices.

I could wear an artificial leg. I did most of the time back in high school and college. It made people more comfortable. Even if they knew it was an artificial leg, it was somehow easier for them to pretend that I was “normal.” But my artificial leg was uncomfortable to wear. It slowed me down. So, I stopped wearing it. It is more important to me to be able to move easily than it is to worry about how I look to others.

Yes, modern artificial legs are better. Maybe someday I’ll wear one. But for now, I don’t want one. It’s partially about mobility and convenience. But it’s also about identity. Wearing a prosthesis feels like trying to hide who I am.

Having one leg makes it hard for me to be invisible. People remember me. I often have strangers say things like “Hey, your kid just started school at my daughter’s school.” There were 100 other new kindergarteners this year, but I’m guessing other parents are less likely to be recognized at PCC, just two days into the school year.

Because my handicap is so visible, whenever I move through the world, I am representing “disabled people.” Many minorities experience this when interacting with a majority culture… the one woman in a tech company… the one person of color in an otherwise all-white workplace.

I am often asked to answer questions, or speak, or write on how to better serve people with disabilities. And I do, but I’m always very careful to say that I can only speak to my own experience, and other people with disabilities could have very different perspectives, based on their disability, how long they’ve had to adjust to it, their emotional reaction to that disability, and other parts of their identity – race, orientation, and so on.

My nature is to be extremely independent, and not ask anyone for help. Remember, I was raised in Wyoming, by a military family – we’re tough stock.

So I have to figure out when to ask for help, and also when to accept help.

Whenever anyone offers to open a door for me or gives me a seat on the bus, I say yes and thank you. I don’t need this, but I want them to have a positive experience, because the next time they see a person with a disability, I want them to offer their assistance. When I was pregnant and one-legged, on the rare occasion someone didn’t offer me a seat, I would give just a little look of surprise. Just enough to imply… “huh, I’m surprised you didn’t offer your seat. Good people look out for others, and it seemed like you were a good person…” They would then often look a little startled, realize that I was right, and give me their seat. In this case, I was using a little of my privilege as a white disabled woman to remind them that when any person comes on a bus that needs the seat more than they do, they should stand up.

When I pull my car into a parking lot, I decide whether to use the handicap spaces. Years ago, I avoided them, because I don’t need them. I can walk for miles. But disability rights advocates encouraged me to rethink that. If every time people pull into a parking lot they see lots of empty handicapped spaces, they are tempted to use them. If instead, they see me getting out of my car on one leg and crutches, they think “wow, it’s a good thing no one took that space.” So, I never take the last handicap space, because I am certain someone will come along who needs it more than me. But if there are several spaces, I always take one.

So, even after 35 years as an amputee, I’m still sorting through identity questions about whether I view myself as disabled.

But really, most of the time, when I think about my identity, I don’t focus on just one label because so many others apply. There are so many things that make me me.

In the video we watched at the start of the service (see below), all the participants were put into a box based on one identity. All they could see was what made them different from other boxes. But then, as the host listed other identities, people began stepping forward, and seeing all the things they have in common.

What makes me different from you is that I only have one leg – that’s the first box people put me into. But there are many other things that define me.

I may have some of these in common with many of you – think about when you would step out of your box and join me…. I am a cancer survivor. I am a heterosexual, cisgender woman. I’m married and have been married to one man for more than half my life. I am a pacifist and a bleeding heart far left liberal. I’m a skier, a swimmer, and a dancer, and I love long walks. I am a movie buff, a musical theatre fan who sings Broadway show tunes in the shower and an avid reader. I grew up Methodist, and now I’m UU. I am a social worker, a doula, a health educator, a parent educator, a kids’ science teacher, and an author. I live in Kirkland, and am a Pacific Northwest person. I start every day with a cup of tea and enjoy a glass of wine with dinner. And probably the most important identity to me is that I am a mom. Parenting my three kids is the most important thing I do and the one that I try the hardest to get right.

And that identity has led me to my current career. I work as a parent educator for Bellevue College. I teach parents about everything related to parenting, from potty training to early literacy to emotional development.

Why do I think it is so important to get parenting right in those early years?

Last week, in his sermon, Mike Lisagor shared a snippet from his childhood: “We moved several times. My dad was always losing his job or losing his temper. My oldest sister was always running away from home.” Mike talked about how fear and despair shaped much of his early life, and how hard a path it was for him to find his way back to hope.

I had the opposite experience. I had a childhood that taught me that the world was a safe place filled with good people. I grew up trusting that things would always turn out OK in the end. So cancer at 15 didn’t scare me, because I had the privilege of a happy childhood.

The author of the book, Secrets of Happy Families, Mike Feiler says “When faced with a challenge, happy families, like happy people, just add a new chapter to their life story that shows them overcoming the hardship.” That was certainly my experience. My goal with the families I work with is to help them build that same resilience. I want children to hear messages like we heard in our Time for All Ages story, when Molly Lou Melon heard from her grandma: “Believe in yourself and the world will believe in you too.”

Feiler also recommends that we tell our children about our challenges and how we’ve overcome them. He says “if you want a happier family, create, refine and retell the story of your family’s … ability to bounce back from the difficult ones. That act alone may increase the odds that your family will thrive for many generations to come.”

It’s time for…

Act Three – How does my experience relate to the broader questions of identity, privilege and intersectionality?

As I said at the beginning, many things shape our identity. Some are based on the choices we make and the actions we take. But some influences are beyond our control. Yes, for me that included a childhood cancer, but for all of us, that includes our race, our biological sex, etc…. And that’s why we need to talk about privilege and intersectionality. Let’s quickly define terms:

So, what is privilege? If we acknowledge, as we must, that on average, African Americans as a group experience more discrimination or oppression than Caucasian Americans, that also says that white people have privilege compared to black people. Privilege is the opposite of oppression. So, let’s look at a few categories: This is how most people would fill in this chart of what groups in America are more likely to experience privilege.

What is intersectionality? We all have multiple identities, and are all members of more than one community at the same time. When we add these all together, they compound. For example, a black lesbian experiences racism and sexism and homophobia.

She has fewer opportunities and faces more challenges than a white lesbian or a straight black man or a gay white man.

  

I can honestly say that my disability has not been a big obstacle for me. But I have to acknowledge that much of that is due to privilege…. When most of the other cards in the deck are stacked in my favor, it’s easier to ignore the disability card.

For example, 40% of people with disabilities report experiencing discrimination in the workplace. My disability has never limited my ability to get, do, or keep a job. It helps that I’m well educated – I have the privilege of an educated family that helped me do well in school so I went to college on a full ride scholarship, and then I went on to grad school because my husband’s income could support our family. But part of my job success is also because I am white, straight and cisgender. And I’ve chosen female dominated fields, so my gender has never been an issue.

I have been, overall, blessed to live an easy life. I mean, sure, I had cancer when I was 15 and lost my leg… but on balance, my life is pretty darn good… And I do consciously think about the ways I can use my privilege to speak out and support those who do not have the same privileges, and to raise awareness of these issues.

So, I have shared today my story of living life on one leg. But another amputee’s story – their identity – might be very different.

For all of us, our identities – the unique lights we let shine – are products of all our history, our group identities, accidental encounters, beliefs, choices and actions. We reach our fullest potential when we can embrace all the parts of our identities, and not limit ourselves to someone else’s story about who we are. Our closing words are from Spirit Daily:

People label us. They put a tag on us. And too often, it sticks. We start to believe the way we’re perceived …[which is] based on assumptions, false first impressions or old information…. Joy comes with greatness – the greatness of motherhood, the greatness of being a great janitor, the greatness of a life lived for others. It is labels – and our accepting those labels – that prevent us from achieving bigger spiritual things. Go for the greatest “you.” Go for the best you can be – no matter what others around you think.

When we sing about “this little light of mine”, remember that all light is made up of many colors of light shining together. So let your own unique light shine… sharing all the contradictions that make you you. Let it shine, let it shine, let it shine.