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.

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 3rd 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!

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.

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 "Gaston" from Disney's "Beauty and the Beast" - one of his favorite characters to portray.

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!

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 when 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 that 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 (who would be furious if he knew I called him that, now that he has “turned from a kid into a guy!” – his own insistent words) 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.

 

 

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? But still, 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,” (like I did when I was a little boy going out to get the mail in the mailbox that was only about 100 feet from the front door, but when I turned my back to whatever was out there in the dark behind me it seemed like a quarter mile that I had to scamper to get in the safe of the light of my home), 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 (and all that transpired because of that), 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. 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 got to 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 LightAs 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.”