Reflections

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Her Name is Gretchen

“You don’t tell your story so people will know you better. You tell your story so people will hear their story in your own.”

Robert Benson

“Any sorrow can be borne if a story can be told about it.”

Karen Blixen, quoted by Richard Lischer in The End of Words

Her name is Gretchen.

Is, not was.

I have wanted to tell this story thirty times. I have wanted to tell this story for thirty years.

When the long summer days grow shorter, and children start back to school, and the next break on the calendar is “Labor Day,” I know what is coming: back-to-back birthdays.  My daughter, Lindsay, has a birthday on September 5th, and her mother, Leann, has a birthday on September 6th, and in the midst of the joy and celebration of the bundling of these birthdays, comes the sorrow of a memorial that must be made in the midst of them: birthdays and deathdays. (FYI: As if we must hide from the stark reality of the latter, the spellchecker red-underlines “deathdays” as misspelled, but not “birthdays.”)

Life and death, birth and burial, always held in tension on this day. Highest joy in one hand, and deepest sorrow in the other. Prayers of simultaneous thanksgiving and remembrance, are offered. My fingers are fastened together as tightly as the memory of the good and the bad that I feel deep in my being.

Her name is Gretchen.

Since Leann was a little girl, she had chosen a name—actually made up the spelling—of her child, if she had a girl. Having “conditions” when one gets married is probably not the wisest of things, but I knew this was a condition, or a law, or an irrevocable beneficiary, if I was going to have this one as my wife. “Kerra” would be the name of our first girl. And it was. At least I got to put my own mark on that naming, by picking out the middle name: “Leann,” after her mother. I scored points on two counts that day: living up to the pre-marital child-naming condition, and honoring a mother with a namesake, all in one fell swoop. Meet “Kerra Leann.”

But I had my own childhood naming ideas.

They began to form when I was in junior high, and became interested in my surname, and its connections to Germany, and the little bit of family history that my father could tell me.  I thought if I ever had a little girl, it might suit her to have a German girl’s name: “Gretchen,” I thought. “That seems pretty ‘German.'”

As I grew older I honestly do not remember giving much more thought to naming my little girl “Gretchen,” and I certainly never considered  it important enough to be a deal breaker for selecting a life-mate. I do remember I had picked out a little girl’s name, but not a little boy’s name.

We found out we were expecting a second time in the spring of 1990.  Kerra was three years old, and the right age to be really excited about a new baby. The whole family was excited. As I recall, my mother had suggested not sharing a baby’s name before the baby was born, because then one would have to put up with explaining, and defending the choice right up until the day of the birth. I thought that was wise council. Until it wasn’t.

At about 22 weeks into the pregnancy, I accompanied Leann to an obstetrician visit. An ultrasound was scheduled, and she thought I might want to be there for the news that might arise from the examination.  When the doctor walked in the room, where the two of us were waiting, and he smiled and asked: “What’s he doing here?” we found out the ultrasound would be scheduled on this visit–not done.  But as the doctor felt and prodded and listened to a rounding stomach with his stethoscope, he announced: “Well…maybe we will be doing an ultrasound today.  I think I hear two heartbeats.”

With no history of twins on either side of our family, we were quite shocked and surprised by the news.  A few minutes later, on another floor of the doctor’s office building, we found out we were indeed expecting twins, and, at the same time, there were some concerns about a significant difference in the rate of growth of the two babies.  So we received a referral to yet another doctor’s office in the neighborhood, and the term “specialist” started being thrown around like it was a sign of being privileged.

There was long enough between the two ultrasounds to grab lunch, call our parents to let them know of the exciting news, and to ask for prayers, as we moved toward learning more about the possibilities of a very complicated pregnancy.

At the second-in-the-same-day ultrasound appointment, which included a (then) new technology, Doppler ultrasound, which measures the flow of blood, the specialist informed us that our identical twins—girls— had a rare (and rarely positive outcome) condition known as “twin transfusion.”  Being able to see the flow of blood confirmed that “Baby B” was receiving used and contaminated blood from “Baby A” through an umbilical cord that was not returning directly to the mother.  So Baby B was getting blood from the mother, and used blood from her twin sister.  Because the outcome for the babies, and sometimes for the mother, was so dire, the doctor recommended terminating the pregnancy.

We decided to just hang on to the very small percentage of hope, and see what would happen.

Although I have spent a fair amount of time and money on my formal theological education, this was the school at which I learned the most about prayer, and how God answers prayer (or doesn’t), and about God being in control (or not), and how God’s plan (as some would frame it) just couldn’t be God’s plan, if what eventually happened in “the plan” for Baby A and Baby B was actually written out on God’s own creative drawing board.

In the next calls we made to our parents, the previous nervous laughter and “what-if’s” about twins, was filled with sounds without words—mostly sobbing—on both ends of the line.

“We will pray….we will ask everyone we know to pray,” was the response that we got, as we rolled out our breaking news.  It happened. People really did pass the word, and people prayed. I know this, because I received many a note and letter from people I’d never met, who were third or fourth in succession of hearing this news that had been passed from somebody who knew us, to somebody who didn’t. It was astounding. But somehow, “Pray for Baby A and Baby B” just didn’t seem quite appropriate. They needed names.

I guess if ours had been a typical one-baby, second-girl pregnancy, Leann and I may have had to arm wrestle over our baby’s name. “You named the first one. It’s my turn this time!”  Now we needed two names, and we really didn’t particularly have even one name that either of us were insistent on using.  So we both got to pick a name, and I got my wish: “Gretchen. I’ve always thought Gretchen would be a pretty name for a girl.”  Leann liked “Lindsay spelled with an ‘a.’”  So we both got our choices.  We took advantage of needing two names to honor two other important women in our lives: Leann’s mom, Marie, and my mom, Jane.  I’m not sure exactly how we decided “Baby A would be ‘Gretchen Marie,’ and Baby B would be ‘Lindsay Jane,’” but that is how it worked out. When I think back on it, I wonder if Leann was thinking: “Baby A has a better chance of making it. I got my ‘Kerra,’ and so Matt should have his ‘Gretchen?’”

Her name is Gretchen.

Is, not was.

Lindsay Jane lived. Gretchen Marie did not.

I’ve written a few words about that sad day, that one can find here.  But what I write in this space is not about the sadness of Gretchen’s death. It is about the thirty years of sadness of not hearing her name.

Every now and then, I write something that brings an unexpected gift to me. I never write with that intention, but it certainly happens more often than I expect, and certainly more than I deserve.  This writing has been no different. I believe paying attention and telling the truth are the two most important things a writer must do. I believe the same for plumbers as I do for poets, and the same for seamstresses as I do for songwriters. Pay attention. Tell the truth.

I have loved this passage from the Book of Isaiah for a long time. I have never really associated it with my memories of Lindsay’s birth and Gretchen’s death until this very writing.

I have prayerfully read these words from the prophet, Isaiah, to people who are about to have serious surgery, and I have read it to people who are going through a really hard place. I read it to my life-long, dearest friend, on her death bed, about three days before she died, and a Holy Presence wrapped me and her, and our other two dearest friends who were present for that special farewell, in an embrace as strong as the Universe, and as gentle as a whisper of love.

But now thus says the LORD,

he who created you, O Jacob,

he who formed you, O Israel:

Do not fear, for I have redeemed you;

I have called you by name, you are mine.

When you pass through the waters, I will be with you;

and through the rivers, they shall not overwhelm you;

when you walk through fire you shall not be burned,

and the flame shall not consume you.

For I am the LORD your God,

the Holy One of Israel, your Savior. (Isaiah 43:1-3a NRSV)

The Holy Presence wraps around me the very same on this day.

There is truth in every line of this Word from God, through the prophet Isaiah. There is truth for Gretchen, and truth for Lindsay, and truth for their dad. I would be safe in saying there is truth here for you too, dear reader, whether it is truth you need on this day, or truth you might need on a day to come.

God has called you by name, and you are God’s.

Gretchen, I have called you by name, and you are mine—will always be mine.

Your name partly lives on with your sister, Lindsay Jane-Marie, and, in some sense, because you are genetic copies of each other, so do you.

Gretchen is your name.

Love,

Dad

Who I Am

Who I Am

My Facebook friends might recognize this photo from a post from this summer. My daughter, Kerra, and her family were visiting when then four- year-old Emaline made her singing debut at Grandaddy’s church. “Amazing Grace”–and it was a sweet sound indeed!

Just a few weeks ago I came across the printed version of this image and when I held it in my hands I was struck by two things: I am a tactile person and holding the photograph to look and reflect on the moment it was taken gave me a whole different perspective than just looking at the same photograph on a screen; and wow, how this picture tells the story of who I am.

Certainly there is more to me than a man in ecclesial vestments, clutching a guitar and a precious grandchild. Indeed! But those three things, drawn together in one place, go as far as I can imagine to speak to the deepest, truest and best me.

There is that little girl.

She is my first grandchild and my first granddaughter. She was the first to award me with the title I coveted so–first owned by my own grandfather, who I knew and loved for thirty seven of his ninety two years. It took her two iterations: “Da-da-daddy,” and “Gran-daggly” before she finally got to “Grandaddy.” [I must admit, “Gran-daggly” sure made me smile!]

Emaline stands in this photo to represent the family that I love so. As long as I can remember, I have been loved and have loved lots and lots of people that I am related to by blood, or by being married into the messiness that is sometimes known as “family.” I would not trade all of your good family memories for all of my hard ones if it meant giving up my family. I love them warts and all.

There are those fancy robes.

The green chasuble was handmade by women of my congregation. The wooden pectoral cross was hand-carved by a dear man from my congregation from local cedar. Under the chasuble I wear a pastor’s stole that was given me when I was ordained. The vestments are all symbols of what I do on Sunday mornings. But they don’t begin to speak to the honor, the joy, and the privilege of wearing them.

When I was on Sabbatical in the summer of 2018 I came to the conclusion that the book I hoped to write would still have to wait. I would not beat myself up over that unfinished and important (to me) work. I remembered that I wrestle with words for a room full of people every week. It is obviously God’s Word first, and then I listen and pray and do my best to make a connection between that Holy word and the Holy happenings of everyday life, where sometimes we notice God showing up and sometimes–to be quite honest–we wonder where God might be hiding? At the end of my Sabbatical I came to this conclusion:

I see myself as the “writer in residence“ at Faith Lutheran Church (ELCA) in Lebanon Tennessee. The good people there call me “Pastor” and I get to do all sorts of amazing things with them in addition to writing. They let me lead worship on Sunday mornings and preside at the Holy Supper and baptize their babies into the death and resurrected life of Jesus Christ. They invite me into their thoughts and hearts and joys and sorrows, and ask me to say words to God at their bedside before surgeries, and during other important events of their lives and the lives of those they love. I even have the high and holy privilege of saying the last words for their loved ones before they are laid to their final rest. I get to invite them to the table to share a meal in a specific moment and place, which, through the mystery of faith, connects all of us in every time and every place.

I have imagined myself as a pastor since I was about seven years old. After almost fifty years I finally got to be one. I have not been disappointed.

And finally, there is that guitar.

There is no way I would say the guitar is more important than anything else in the picture. But the guitar is really what nudged me to say the truth of who I am.

As I was looking at the picture (the day I first held it in my hand) I was thinking of what I needed to say about the guitar. It started something like this: “The guitar is a 1969 Gibson J-50.” I imagined in my writer’s mind telling the true story of buying it from my friend, the late Pete Cummings, the end of the summer after we had both graduated from high school in 1973. I paid $200 for the guitar–mostly to impress the girl I was taking on a date for the second time, who I thought would never go on a first date with me in the first place. But about the time I started painting a narrative picture in my mind I realized 1969 was fifty years ago.

Fifty. Years.

The guitar has accompanied me through some of the most memorable events of my life. I have played it for people I loved more than life, and people I didn’t even know. I have played it at friends’ and strangers’ weddings, funerals, church camp, camp fires, on a beach at night and by a dear friend’s deathbed. I played twice a week for five years, for tiny tots at a Mother’s Day out program. I have played it for more hours than I can count just for me–and those were some of my most important performances. It has helped me tell my story in ways I could have never imagined to people I never dreamed would hear my story.

Live at the Bluebird Cafe in Nashville

Who am I? I am a grandaddy and a pastor. I have been a student, a warehouse worker, Gospel Music business executive, worked in the TV and film production industry, had a career in insurance sales and management, worked as a lay professional at a church, and now am an ordained Lutheran pastor. All along the way–across every single one of those jobs and vocations and even between them (when that happened a time or two along the way) I have been a guitar player. And I have been a singer. And I am so thankful that who I am is held together by the strong thread of music.

The girl I wanted to impress is long gone. The guitar is still here, and has brought me so much joy and so much life in the 46 years I have owned it. Sometime in this year of 2019 that beautiful instrument turned fifty years old. I wonder if I was playing it somewhere on its actual birthday?

“Happy Birthday” seems sort of strange for an inanimate object. But then, that guitar sure seems to come to life sometimes. And it has sure brought me to life many, many times.

Gordon Kennedy, (who co-wrote the Eric Clapton hit “Change the World”) played my guitar at a songwriting workshop. So did Beth Nielsen Chapman (who co-wrote the Faith Hill hit “This Kiss”) sitting to the right in this photograph. It played as well for them as it always does for me!
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What He Saw

My father’s backyard view.

This is the last picture I took of my dad in his home. June 3, 2016, my mom and I brought him home after a three-day stay in the hospital for a mild heart attack. He would go back to the hospital the next morning and would go to his eternal rest less than 24 hours after that.

I remember after he drove his power chair up the ramp of his home, instead of going straight through the sliding glass door that leads from the deck into the house, he pivoted to where he could see this magnificent view (that this photograph barely even captures). It made me grin to think this was the first thing he wanted to do after getting home from the hospital – take in this view that he had experienced for 60 years. So I tried to capture with a picture one of the things that he loved.

As I look back now, on this anniversary of my father’s death, I can’t help but reflect on all the things that he saw in his almost 91 years of life. This particular view of his beloved Old Hickory lake changed almost by the hour. The clouds one can see in this picture would eventually transform into the backdrop for a multi-hued sunset of gray and rose and blues and flecks of gold sparkling on the water. My mother reminds us that every day they woke up and looked outside, the lake provided them a new and different vista.

It seems that most every thing my father saw was filled with possibility and new potential. I can hardly remember a discouraging word coming from his mouth. About the only times I remember him raising his voice at me was was for parental guidance that was wholely deserved. However, I do remember him (surprisingly) fussing at his grandchildren on occasion. It was when he heard them say: “I can’t!” He would respond with a firm: “Don’t ever say ‘you can’t.'” And he would leave it at that. I think even as youngsters they got it – that this man who had walked with a brace from the time he was 7 years old, and whom they had witnessed not being slowed down a single step by that “handicap,” was gently reminding them that sometimes it is nothing but our attitude that gets in the way of our achievement.

My dad was amazing at seeing things the way they could be and should be, and then figuring out a way to get involved in moving his vision as close to reality as he could. He did that as a PTO dad, as a State Legislator, as a member of the city planning commission, as a leader in his church.

He was also amazing at seeing things that would never be and loving them just the same. When Leann and I were expecting our third child I had already decided if it was a boy I was going to name him John Mathias Steinhauer, IV. But I was not naming him after me. I was naming him after my dad. A few hours after Matt was born, and we discovered he had Down syndrome, I was really torn about what my father would think about having a retarded grandchild named after him. I never asked my dad what he thought about that. I didn’t have to. He was always as proud and involved with Matt as any of his seven grandchildren. What he saw was “one of his grandchildren.” He didn’t see the imperfections and obvious differences that the world would see in Matt.

If I see half the things my father saw – the way he saw them – I will be OK.

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Good Days in the Life of a Downs Dad

This essay was first published in the Op Ed section of The Tennessean newspaper in September of 2006. I wrote it in response to a news story reporting a decline of births of Down syndrome babies due to prenatal testing that led to terminated pregnancies. I wanted expecting parents to know what they might be missing.

I am not a medical ethicist or an activist for the disabled. I am a father of a son with Down syndrome. Since the birth of my son, and the September 3, 2006, article about the decline in birth rates of babies with Down syndrome, it has been 4249 days. It has been that many days since our family received the news and made the assumption that our third child and first son would bring us years of hardship and challenges because he came to us with that extra chromosome on what should have been the twenty-first pair. We probably cried that many tears upon hearing the news. But I have also learned at least that many lessons in life and love from my son in the almost 12 years he has graced our lives with his presence. Let me share just a few of them with you.

Me and Matt on the night of his graduation from Station Camp High School in May of 2014. Me and Matt on the night of his graduation from Station Camp High School in May of 2014.

“I’m sick of you, I’m sick of this trip, and I’m sick of Aunt Edna!” That quote from Chevy Chase’s “Vacation” movie was delivered by Matt while he was standing in our kitchen, having a particularly frustrating day. It brought peals of laughter from Mom, Dad and his teenage sister. It is one of many pieces of internalized movie dialogue Matt will deliver at the most appropriate time in either English or French (since he enjoys interchanging the language and subtitles on the DVD’s he watches).

He came home from school last week (he is a main-streamed fifth grader) “on strike” because he was skipping down the hall. I noticed one time that Matt also skipped down the sidewalk into school every morning after he got out of the car. I have wondered many times, while observing him, why none of the other children were skipping and how old one must be to be “too old” to skip? Can you imagine how much better place the world would be if the U.S. Congress was required to hold hands and skip around the Capitol each day before they began their sessions?

When he was about five years old he called me over to the kitchen table, where he was eating his Rice Krispies, and asked me to “listen.” I bent down and positioned my ear near the bowl and exclaimed, “Wow, Matt! What do you hear?” Expecting the reply of “Snap, Crackle, Pop,” I was humbled to hear his incredible insight: “It’s raining in my cereal.” Listen to a bowl of Rice Krispies some time and then listen to the rain beat against your windshield in the car in a rain storm. You will be amazed.

Within hours of his birth I wrote in my journal: “I am able to hide all of my imperfections behind the façade of my relatively normal brain and body. Matt’s imperfections just hang out there for the world to see. I wonder which of us is worse off?”

Yes, there are challenges, and questions about the future and our life is changed because we have a special needs child. If I could choose now to have Matt “normal” or with Down syndrome, I would choose to have him just the way he is. He may have “less” than typically developing children in some areas, but he has so many talents, so much sensitivity to the world around him, and brings more gifts to our life than some “brilliant” adults I know. This letter may not change the course of the trend in possible terminated pregnancies, but if just one expecting parent reads it and says “yes” to bringing another child like Matt into the world I will be 4249 times grateful – and so will they!

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Last Dance

My brother, Steven, rightly claims that he got the first dance with my first daughter, Kerra. As I recall, we were at a family wedding reception when he picked up my toddling daughter and grinned while informing me: “Looks like I’m getting the first dance with Kerra!” He reminds me of that just about anytime we are at a wedding and there is dancing involved.

I have recently been revisiting my journals that I have been keeping for almost 25 years, and was given a gift to relieve some of the sting of not having had that first dance with Kerra.  Whatever cards and notes and written memorabilia I collect during a particular season of journaling goes into a pocket of the cover of that journal, or simply tucked into the inside cover when my journal has no pocket.  I came across an undated “Thank You” from Kerra, and it referred to “that extremely sweet note” that I had written her.  In her note to me she shared: “The thought of you even chaperoning my dance in middle school made me want to kill you guys! Even though it was just dancing! But to let you come in and dance! (Ha ha) what a change.”  She continued: “I also was honored to have my last dance of the junior prom with my father.… I will remember this prom forever though. Thanks for the dance. XOXO I love you.”

It made me smile on many levels. Kerra has given us our first granddaughter, Emaline, and it is just fun and rewarding to think on her life transitions from middle-school-paranoia of the highest order – one’s father threatening to “hang out” at a middle school dance – to high school proms, to marriage, and finally to motherhood. The writing gods rewarded me with the details of what transpired to cause our writing each other. As I leafed through the volume of my journal where I found the note, I came upon an entry in April 2004. I wrote from Washington DC, where I was ironically chaperoning a middle school trip with my younger daughter, Lindsay.

From my journal: Kerra had told us about a week before prom (this past Friday night), parents of officers were expected to help with decorating. So Leann and I arranged to be present and help her do that. What we didn’t know until just 24 hours or so prior to the event was that we also had to help tear down at 11:45 PM!  I lovingly and jokingly told her, “Okay, but I get the last dance!” She laughed and said “Okay.” 

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

Friday night (we weren’t supposed to be there until 11:45) she called me about 11:15 to ask where we were, and to say she and her date we’re ready to go and that they already played the last dance and I missed it and she wanted to dance with me! So we hustled over to Vanderbilt Stadium Club and found Kerra. She got the DJ to play one more slow song and we got to dance! I was so happy and delighted and almost “lost it” as we stepped out on the dance floor – her looking radiant and beautiful in her aqua blue gown and her hair fixed so pretty. I made it through about half the dance before I had to turn it back over to her date to finish the dance so I could go back and collect my thoughts. I hope she knows how much I love her and appreciate her asking me to dance with her!

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There were a couple more things in the thank you note that I did not mention. One of them was Kerra’s admission of crying when she read my note to her. Because she was honest with me about that, I guess I should be honest with her – that when I dictated my journal entry into this blog post, I had to stop about three times. Would you like to guess why? There are many thoughts and ideas, much musing and pondering that I could share on this blog. It seems that I devote most of it to writing about my children. The truth is that I will never be able to share all that I have learned from them by being their father – there’s just not enough white space to write it all.  The other truth is I could write every day for the rest of my life and never express the joy and gratitude and thanksgiving that I have at being given my beautiful children: Kerra, Lindsay, and Matt.

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3/21 Celebration of My Wise Son

Saturday, March 21, 2015, marks the 10th anniversary of “World Down Syndrome Day.” This day was chosen because of the symbolism of the numeric “month/day” as an accurate description of the genetic anomaly of “Trisomy 21” – the occurrence of three chromosomes on what should be the twenty first “pair” of chromosomes. So this extra biochemical matter is the cause of the 16 syndromes that identify Down syndrome.

There is a billboard along my regular commute to the church I serve – a paid advertisement for the local hospital -with a picture of a boy dressed in his superhero costume and it says: “If you try to fly and can’t, our Emergency Room is always open and waiting to help!”

What little boy do you know that on Halloween, dressed in the costume of their favorite superhero, doesn’t literally turn into that character in their own mind? Even though Matt, who was born with Down syndrome, is 20 years old, he still loves to dress up for Halloween (and especially when they have dress-up days in school!).

A couple years ago his costume was “Spiderman.” When we got him dressed in full regalia I exclaimed, “Matt! you

Matt as Matt as “Gaston” from Disney’s “Beauty and the Beast” – one of his favorite characters to portray.

are Spiderman!” 

“No dad. I’m just Matt. 

“You don’t want to be Spiderman?” 

“No, I’m Matt. I just want to be Matt!”

A few weeks ago I spent a fair amount of money, and three days of my life, to join 19 other “typically developing” adults in a songwriting and creativity workshop in Nashville. Beth Nielsen Chapman, a gifted singer, songwriter, and teacher, was joined by former All-American and All-Pro football player turned legendary songwriter, Mike Reid, to teach us the most important aspects of the creative arts. On the last day of the workshop we were joined by singer, songwriter, playwright Jonatha Brooke (who added her perspective of creativity), and legendary Americana Blues artist, Keb’ Mo’, who only came to sing, but he also took a few minutes to encourage us in the writing and creative process.

“Overwhelming” doesn’t begin to define the creative energy that gathered in a relatively small room that day.  If you watch the ABC TV hit, “Nashville,” you have seen the famous “Bluebird Cafe” and know it is a place where some amazingly gifted singer/songwriters show up in a small venue to share their songs and stories.  Our small group was treated to a concert by these four legends, any of whom could sell out the Bluebird just about any day of the year. 

L to R: Jonatha Brooke, Keb' Mo', Mike Reid, Beth Nielsen Chapman L to R: Jonatha Brooke, Keb’ Mo’, Mike Reid, Beth Nielsen Chapman

One of the most profound pieces of advice that was given by each of these four successful creative people was, “be yourself.” They may have each described it in a different way, but when it came right down to it, they were letting us in on this master craftsman’s trade secret: “You are the only person with your story. Tell that story.”

“I’m just Matt!”  Matt already grasped this secret of creative geniuses when he was just a boy. He has taught me many things that have been important and helpful for me to know in our relatively few years together.

I have living evidence that these beautiful people who are born with an extra chromosome have “extra” other things as well. They have an extra sense of the way things really are. They have an extra ability to speak the honest truth. They have extra vision to see things that “typically developing” people do not see. They have extra compassion and love and an extra willingness to share it.

On this 21st day of March, “3/21” — World Down Syndrome Day, I celebrate, and honor, and thank God for my son Matt.  Maybe instead of wasting our time figuring out how to stop Trisomy 21 from occurring, humanity would be better served to figure a way to genetically modify all humans’ 21st pair of chromosomes, and add a little “extra” – so that we might experience and share the extra stuff that comes so naturally to Matt and all the other beautiful Down syndrome people in the world.

“Just Matt” is what I want to be too.  Thank you my extra special son!

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From Grief to Joy: A Resurrection Story

How can one experience a “birth” and a “death” at the same time?

I have experienced that paradox up close and personal two times. The first was our twin pregnancy that ended on September 5, 1990, in the hospital delivery room, when our (now beautiful 24 year old daughter) Lindsay, was delivered with a sad and pitiful little cry, just minutes before her identical twin sister, Gretchen, was exhumed silent and still from her mother’s womb.  Gretchen had succumbed to the complications of the rare twin–to–twin transfusion, a condition that had us on pins and needles for the final 11 weeks of the pregnancy.  The doctor had said in the very beginning, after the diagnosis, there was only a remote possibility of having any babies.  After Lindsay’s delivery the collatoral effects of the condition kept her in a neonatal intensive care unit for 25 days before we would bring her home from the hospital.

Of an unfairly long list of personal tragedies and challenges, this was by far my deepest sorrow and my darkest day. Every birthday that Lindsay has celebrated since that day – and, in fact, every act of celebration of a life event: first steps, learning to ride a bicycle, going to prom, graduation, and most recently walking her down the aisle to get married – all have been sweet and bitter for me.  Not a single one of those milestones have I celebrated with Lindsay without wondering: “what if?” in remembering my sweet, tiny, and perfectly formed Gretchen.

It had not even been five years since that hard day when we were back at the hospital for the delivery of our third child. The pregnancy had gone fine this time and we were thankful that other than routine doctor visits Leann nor I worried about much, other than normal “expectant parent” concerns during our nine month wait.

In the late morning of January 12, 1995, after finding out we had a brand-new baby boy, I couldn’t imagine I was about to experience that ever so strange encounter with a birth and a death at the same time yet again.

Leann and I never knew the gender of our third child during the pregnancy. So as soon as I heard the doctor proclaim: “it’s a boy,” I let my mind run free with all the things any father has in mind when thinking about a relationship with his son.

How often is it recounted (by someone who has a brush with death and escapes): “I saw my life pass before my eyes?” I have never thought about the truth of that in all these years until this very writing. That is exactly what happened to me.  I saw my life with my son played out in living color in the hour or so between hearing: “It’s a boy,” and hearing: “Well, we can’t really confirm without genetic testing…but he does appear to have traits that are characteristic of Down syndrome.”  As quickly as I had painted those pictures in my mind of days that we might spend together sharing a love of sailing, throwing a ball, flying airplanes, looking for beauty in the world, singing songs and making music, there was an ugly crashing sound as those dreams were all pronounced “dead at the scene” by the nurse who was the only one brave enough to tell us the truth as we began to realize all really wasn’t right with the world anymore.

It is the day after Epiphany as I write this. Epiphany is the name given to the day on the calendar of the church when we celebrate the star that led the Magi to the proof of God’s love for all creation: a child whose name was Jesus. Epiphany means “appearance” or “manifestation.”

I have been led to a deep and beautiful truth myself as I have contemplated Matt’s birthday on January 12. I am sure I have felt this way for some time. I am also sure I have never had the words to articulate my feelings like I have been given now, as I remember this important 20th birthday that we will celebrate with our special son, Matt.

What has “appeared” or been made manifest to me, is whatever sadness, sorrow, mourning, or grief I experienced at the birth of my son and the death of my dreams, has ever so surely and completely been replaced by the undeserved abundance of love and laughter and joy that Matt has given us over the 20 years we have been blessed to have him in our lives.

When Matt was born, and I found out he had Down syndrome, all I could think in my silent (because it seemed so blasphemous) prayer was: “God… Are you kidding me? After what we went through the last time? This is what you would give us to deal with? Are you kidding me?”

I love God. Honestly, I do. Sometimes I have to remember that Jesus’ commandment to “love God,” uses the same Greek word for love that we pastors explain to brides and grooms: “this love (agape) means you choose to love even when the object of love doesn’t seem very lovable.” So sometimes (especially September 5, 1990, and January 12, 1995) I have simply chosen to love God even when I really didn’t want to.A beautiful boy

Now my silent (because I’m embarrassed to admit aloud how wrong I was) prayer is: “Oh… I get it God. You really did know what I would need. You knew there would always be a hole in my heart that unspent love would just steadily pour out of when I lost my Gretchen. You knew there was no way I would ever plug that hole. So you gave me Matt.”

You see, what I would discover along the path of what I thought would be a dreadful journey, was the surprise that Matt poured overflowing love into my life, and like someone using a funnel discovering it can only empty out at the same rate something is poured into the top, I soon realized this sweet boy started filling my wounded heart so fast and so full with love and joy, that what went out of the hole would always be overcome and overfilled by his special love.

I get it now. Thank you. Thank you! Amen.

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A Soft Dissent

For the past couple years I have participated in the observation of the traditional “Twelve Days of Christmas.”

It is impossible to ignore the blare of the commercial Christmas (that has become the “new tradition” over the span of my life) that begins with some radio station playing 24 hour Christmas music on Black Friday (the day after Thanksgiving) and that ends abruptly on Christmas night at midnight – and so I don’t.  I don’t attempt to block out all that is going on around me, or try to rain on anyone’s parade who likes to start celebrating Christmas when the leaves are just turning to autumn colors.

Last year I found myself scurrying around in the few days that led up to Christmas Eve, wondering how I would get everything done by the “deadlines” that had been set to the tune of marketing campaigns that were designed to squeeze every ounce of consumerism out of every living human within ear-shot or eye-shot of their promotion and advertising efforts. It seemed highly unfair that the days between Christmas and New Years were some of the most easy-going days of my year, and if I could just shift some of that busyness into that time slot my life would be so much better.

It dawned on me that if I simply observed, more whole-heartedly, the tradition of Christmas (as it was practiced before spending lots of money and outdoing everyone else who might have better decorations and Christmas parties became the norm), I might actually be able to shift some of my Christmas observance and celebration to that time period formerly known as “The Twelve Days of Christmas” and actually enjoy the experience and season of Christmas. And so I did.

Admittedly, one has to work at continuing in the Christmas spirit from December 26 through January 5, because all the rest of the world has moved on to thinking about summer wear (with slight speed bumps at Super Bowl Sunday and Valentines Day). From December 26 through January 5, I play my “Christmas mix” on my iPhone through my ear-buds, I address my Christmas cards and drop them in the mail during the days between Christmas and New Years so the recipients will hopefully receive them before the “Twelfth Night.”

I don’t reckon most people even know I am protesting. It is not like I am waving signs or singing protest songs. It is a soft dissent. Soft and quiet and gentle.

One of the new joys for me is some of the reflection I get to do by remembering Christmas on all these extra days.

Today I was thinking that “this is the 7th Day of Christmas.” It is also December 31, 2014, the very last day of the year. One of the worship planning and preaching resources I frequent, Sundays and Seasons (Published by Augsburg Fortress) suggested that it was a particularly interesting convergence of biblical symbolism of the number “7” and this important calendar observance of New Year’s Eve. In the Bible, the number “7” is the number of completion and wholeness. Creation was finished on the seventh day (there are many other important 7’s in the Bible – you can Google them yourself!).  Here on the very last day of the year – the day the year itself is “completed” – we are celebrating “The Seventh Day of Christmas!”

As I was writing in my journal early this morning, reflecting on 2014, I got to thinking it was about as complete a year as a man could want. My wife and I celebrated our 30th wedding anniversary. My sweet son, Matt, graduated from High School. My daughter, Lindsay, got married. My daughter, Kerra, gave birth to our first grandchild. I could add a whole other listing of celebrations and high points of my year.

There are some years that I have stopped and thought about my year and wondered how I made it through the difficult circumstances I had faced during the year. I won’t name those here, but you know what I am talking about – because I believe if any of us live long enough we will face challenges and hardship and sorrow and pain that we wonder how we ever made it through.

The wonderful Christmas carol, “Good Christian Friends, Rejoice” suggests:

“…now ye hear of endless bliss,

Jesus Christ was born for this,

He has opened heaven’s door,

and we are blest for evermore,

Christ was born for this,

Christ was born for this,”

 The amazing thing is that even in those years – the years I would just as soon bury the memories as wave a banner of celebration – I have felt “complete” and “whole” when I looked back on those times. What I have come to believe is that just as “Christ was born” for our blessing and bliss, Christ was born for our sorrow and sadness, and is as present, if not more so, in those times.

It’s as if God’s own “soft dissent” is offered to us in our challenges and struggles. “Watch this!” I can almost hear God say. “I will be there with you – to march with you, to stand by your side, to “have your back,” when you are going through all things – the good and the bad.  Try to remember that when the way seems dark and lonely!”

A Prayer for the New Year

O God of gentle presence, who has walked every step with me I have ever taken, help me to be still, and quiet, and open eyed enough to recognize that you are always there. Thank you for being present in the celebrations of this year past, and thank you for being present in whatever a new year will bring. Amen

A Little Light for The Darkest Day of the Year

“I believe that men are generally still a little afraid of the dark, though the witches are all hung, and Christianity and candles have been introduced.”

Henry David Thoreau, Walden

If Henry were still alive, I would tell him that I couldn’t agree more. Wouldn’t he be amazed to see, in fact, just how “not dark” our world is with the advent of electricity? Even with all that light, men (and even some women that I know) are “still a little afraid of the dark.”

The longer I live the better I understand that what many of us fear is not the literal darkness of the absence of a light to light our way.

If Thoreau were pointing at “superstition” when he brought up the “witches,” I sometimes wish that I could fear the darkness of things that might not actually exist– things about which many folk are “superstitious”—instead of being afraid of the dark…the real dark…that seems to be inhering my world right now.

I was going to preach about “light” and “dark” today, on this Winter Solstice, the shortest daylight day of the year.

I was already surprised at how much national and global “darkness” I could remind us had occurred in the past four weeks of Advent: two grand jury decisions to not indict police officers implicated in the deaths of unarmed black men  (and all that transpired because of those decisions), the fears of retaliation by terrorist organizations for the revelation of interrogation practices in the post 9/11 climate in which we live, the threat by North Korea to bomb movie theaters (on Christmas day no less), and 141 children in Pakistan being killed. It just seemed to be “enough” darkness already. And then I awoke and read the news that yesterday afternoon two New York City police officers were murdered in their patrol car – most likely as vengeance for the non-indictment of the aforementioned grand jury decisions.

Will we ever end the violence and retribution and retaliation?

When I arrived at my church early this morning, I walked into the sanctuary to be sure everything was in place for worship. There was a small shaft of sunlight coming through an eastern window and striking a small evergreen tree placed behind our altar as a decoration. It was decorated with blue and silver ribbons and glass balls (in keeping with the liturgical color of “blue” for the season of Advent). I did a double take when I saw little points of light on the wall behind our altar. At first I thought I was seeing stars that someone might have painted on the wall, but then realized it was light reflected off the small mirror ball glass decorations on the tree.

Advent Light

As I pondered the darkness of the news and the world that I am living in, it was as if God said: “Pastor….be alert! Keep awake! Look for the light,” and I couldn’t help but think of the words from the Gospel of John that I will say in the darkness of the Christmas Eve candlelight service, three days from now, to people who have gathered for worship and to celebrate the coming of the Christ as a newborn baby into the darkness of our world. I will only see in their faces what the glow of the candle they are holding in front of them reveals as I read:

In the beginning was the Word, and the Word was with God, and the Word was God. He was in the beginning with God. All things came into being through him, and without him not one thing came into being. What has come into being in him was life, and the life was the light of all people. The light shines in the darkness, and the darkness did not overcome it. And the Word became flesh and lived among us, and we have seen his glory, the glory as of a father’s only son, full of grace and truth. (John 1:1-5, 14 NRSV)

On this darkest day of the year, and six months from now – on the brightest day of the year – we can always know that the Light has come. Not just to the good people, or the people who deserve it, or the people who come to church on other days besides Christmas and Easter. It is the Light of all people.

The Light is for you and me and even the people who cause the darkness that we live in.

That’s what makes it “grace.”

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“The Roof is Leaking” and Other Observations Living Life With A Down Syndrome Child

The twenty fir1071687_10151986131078467_411256590_ost day of March is “World Down Syndrome Day.”  I wasn’t even aware of this annual observance until I saw many posts on Facebook on that day one year ago.  I was surprised…but then again I wasn’t, because there are so many aspects of raising a child with  Down syndrome that are surprising.  This year I am preparing for the celebration and observance by writing this reflection to share with the people whose lives have been so thoroughly enriched by knowing my son, Matt – as well as writing it for those by whom this will be the only way to know such a special and wonderful human being. March 21, or “3/21” is chosen as the date for this event for its numeric symbolism with the genetic mutation that causes Down syndrome (clinically known as “Trisomy Twenty One”) – a third (extra) chromosome on what should be the 21st pair of 23 pairs of chromosomes in every human cell.  There is so much to be thankful for, and so many “blessings” that our family has received as the result of having a special-needs child. I have shared, and will continue to share, some of those warm and wonderful stories. But the hard truth is that there are some true challenges too, so I trust you will allow me to speak (every once in a while) these truths even when they are hard.

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The congregation in which I serve as pastor recently hosted the Ascension Ringers from Augustana College in Rock Island, Illinois.  They put on an amazing bell choir concert for no more than a “free will” offering.  In return, as is the custom when a congregation hosts one of these traveling college groups, our family was responsible for overnight housing of some of the college students – in our case, three young men.

After the concert I loaded the boys and their luggage in my car and drove them to my home, where my sweet and hospitable wife, Leann, had prepared some late night snacks.  We were standing around the island in our kitchen, engaging in conversation about their hometowns, why they decided to join the bell choir – the normal type of conversation one might expect to have with three young men we had just met and would probably never see again.

Matt, who usually stays put in his “man cave” (in the bonus room up the stairs) where he sits on the floor surrounded by his four cowboy hats (a white one for Brad Paisley, brown for Blake Shelton, black and a summer “straw” version for Kenny Chesney) and a couple dozen pictures of his favorite stars, with his headphones on and iPod playing music (listening to Blake, Brad or Kenny), was honoring our guests with his presence in the kitchen.

But I know he was mostly there because among the snacks was a pizza set out on the kitchen island and he had high hopes that “the boys” might include him in sharing one of his favorite foods – and they did.

In the middle of our conversation, Matt broke in and nonchalantly informed us: “The roof is leaking.” My initial thought was, “It would be just my luck for us to have a house full of overnight guests, and even though there was no rain or snow falling right now, I am about to look up and I am going to see something dripping where there are no water pipes, or even a flat enough space for water to collect – it is a vaulted ceiling.”

Matt had gotten our attention: “The roof is leaking.”

I looked up – we ALL looked up – nothing.

“What?” Leann and I both asked Matt at the same time.  “The roof is leaking – everything is going to get wet,” he replied in his dry, matter-of-fact way.  This time Leann and I, as well as our three young guests, surveyed the ceiling carefully and all concluded there was no leak. Everything about the ceiling and the roof looked pretty close to “normal.”

A few minutes later, when we decided it might be time to head to bed, I noticed a very large puddle of water on the floor where there should be no water…and then realized there was another puddle on the counter under the coffeemaker I had just setup to go off the next morning.  I had not firmly plugged the coffee water reservoir into place, so the water that should have drained into the coffee maker the next morning all went on the floor – drip by drip – over the edge of the counter in a silent and out-of-the-line-of-sight manner, until it had collected in a large puddle on our kitchen floor.  There really was something going on here that was going to need our attention.  We just didn’t see it until we were right beside it.

If you know somebody with a Down syndrome child, this might be sort of like their life.

Our initial “the roof is leaking” call-to-attention came when we got the news that our child had Down syndrome.  Some Down syndrome children have significant health and medical issues from the get-go, with heart defects and other situations that require surgeries – and sometimes several surgeries – to start their lives. Matt’s start was pretty much like any other newborn.  He didn’t have the additional medical issues to compound the already “big surprise.”  We started looking for the “problem” the doctor had told us we had, and we just didn’t see it.  Our baby looked a little different and was slower than his older sisters in the “firsts” that parents count with their children: first time to roll over, first time to sit up, first time to crawl, first words, first steps, but for the most part he was just a baby – a sweet, good-natured, very easy to love little boy.

Maybe the “warning” should be heard as a prophecy instead of a pronouncement. The roof may not be leaking, but if there is water on the floor that is not supposed to be there one is eventually going to have to deal with it.  Just when we thought we were going to bed and get a good night’s sleep we had to start dealing with a situation that we had been warned of, but really didn’t quite comprehend.

For Leann and I living into some of the challenges of parenting a special needs child has been long coming, and this is one of the challenges for every parent of a special needs child. Those babies…then children…then adolescents…then teenagers…grow into adults.  They will graduate from high school like typically developing children, only they will not go on to college, and then get a job, and then move out on their own. Matt will graduate from high school…and then he will be a full grown adult, dependent on us for as long as we feel like that living arrangement is appropriate.  As a brief “aside” I need to offer this word of advice to parents of “typically developing” children who seem to have this particular trait of Down syndrome children (graduating from high school/college and seeming to become an adult dependent).  Please don’t have your child genetically tested for Down Syndrome.  Some of the best and brightest young adults wind up as “adult dependents” for a season.  You will be wasting your money and it might come across as disrespectful to your child  if you suggest to them that they have this “syndrome” in common with Downs children and that you think they need to be tested!).

Our first two children are grown and gone.  One-by-one our friends become “empty nesters” and gain the flexibility to come and go on a whim — do whatever they want to do with their time.  We turn toward our “retirement” and there greeting us is this puddle of water that we just didn’t see, or didn’t see growing from a steady drip into a puddle, or maybe we were so busy with all the other aspects of raising a special needs child we hadn’t come up for air long enough to even wonder this far ahead.

The challenges of raising a special-needs child are often life-long.  Remember that among all the cuddly and cute stories and pictures and anecdotes that we parents share about our children, we also face heart-breaking realities.  Most of us, given the chance to “do it all over again,” would indeed “do it all over again” – without even thinking about it. But that is only because the gifts that we receive and the lessons we learn from our special children far outweigh the challenges and hardships.  But the challenges and hardships exist nonetheless.