I Knew This Day Would Come (for Matt’s 21st Birthday)

Matt’s 21st birthday is January 12.  I wrote the following in the summer of 2014 on a day of his own choosing – his own “coming of age.”  I posted it on Facebook then, but thought on this, his 21st birthday, would be an appropriate way to celebrate his very special day.  He has been talking about this birthday for about three months!

For as long as I can remember, I have put Matt to bed.  Leann would gladly do this I know.  It has just, for some reason, become a special time for me and Matt and so Matt protects it from outsiders (including MOM).

The ritual goes like this: Matt lays down in his bed, I brush his teeth and then cover him up and lay beside him and tell him a story: “Once upon a time there was a SWEEET little boy named Matt Steinhauer – He was the SWEEETEST Little boy! He had a Mom and a dad, and a sister named Kerra and a sister named Lindsay. EVERYBODY loved him! Mom loved him, Dad loved him, Kerra loved him, Lindsay loved him, EVERYBODY loved him.

“One day, Matt woke up – it was a Tuesday…..”

The story has always simply been a recap of what I know about what he did that day. On June 22nd 2014, I was waiting on Matt to get in his bed.  So I knew this day would come…when Matt would, in his self-awareness, “grow up.” With about an hour and a half left on the day of the Summer Solstice, Matt walked into his room at bedtime and said: “I’m not Little Matt anymore.”

Having spent the previous couple of hours looking at pictures of Lindsay across the years, as I constructed the video for her wedding reception that would happen in a few days, I was already what one might call “on the emotional edge.”

He said again, “I’m a guy, I’m not Little Matt.” I’m “tall Matt.” I confirmed that he was indeed getting tall, and that we really called him “Little Matt” to help people tell the two of us apart. But really it was that I am “Old Matt” and he is “Young Matt” – would that be okay?

matt and sisters

This is Matt with his sisters, Kerra and Lindsay. If you look closely you can see him standing on his tip-toes because he is “big!”

“Yes!” was his immediate reply. Holding my breath I asked him, “Now that you are “young Matt” and not “little Matt,” do you still want me to tell you a story?

“Yes!”

“All shall be well, and all shall be well, and all manner of things shall be well.” Julian of Norwich

 

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.”

89 Years Strong!  Happy Birthday to an Extraordinary Man…Who Happens to be My Father

89 Years Strong! Happy Birthday to an Extraordinary Man…Who Happens to be My Father

Dear Johnny Working Cover

John Mathias Steinhauer, Sr, and John Mathias Steinhauer, Jr., a photo from the Nashville Banner in the 1930’s in an article about President Roosevelt’s March of Dimes Campaign. My grandfather was a Nashville City Police officer and it was only through the generosity of many Nashville residents that knew him that he was able to send his son for care. He started “paying back” the community immediately and to this day my father has worked hard to continue that effort. This is a working copy of a book cover that I hope to publish within the year.

My father, John Steinhauer, was born on July 23, 1925. The seventh summer of his life was spent like most of the boys his age who lived in East Nashville: riding bikes through the neighborhood, playing sandlot baseball, swimming in the pool at Shelby Park.

Two weeks after his seventh birthday he went for a swim at the pool. The next day he walked out to the car to go to a family picnic and when they got there he wasn’t feeling well. His legs were hurting and he couldn’t walk. His father carried him inside. He would never walk again without crutches or a brace, or without a severe limp.

My dad had contracted what was then known as Infantile Paralysis, and what we now refer to as Polio. The disease affected many people in those days. For some it was fatal. He spent 19 days on his death bed – only able to keep down the occasional Coca-Cola (he has been a lifelong loyal customer). In his day-in-time they called him “crippled.”

My paternal grandfather died when my dad was still a young man. Fortunately he lived long enough to see that his “crippled” son would do fine in this world. He died not long after my mom and dad were married in June of 1952.

John Steinhauer and Ned Ray McWhorter

John Steinhauer, Jr., with future governor Ned Ray McWhorter. At the time of this photo he was serving as the Assistant Chief Bill Clerk in the Tennessee House of Representatives. He served four terms as a State Legislator and his legislative efforts included procuring a hospital for his growing community, a Community College, and reapportionment of the County Court (county legislative body) for equal representation of a growing county population – that had not been done in decades.

I was thinking one day about what a great life my dad has lived, and how I wished his dad could have seen the outcome of his involvement in a variety of places –home, church, serving in elected and appointed positions in state and local government, and at the age of 89 still an active member of The Sertoma Club of Nashville, a civic club he has been a member of for over 60 years.

There is a more in-depth story that I am working on, but on this, his 89th birthday, I wanted to tell him “Happy Birthday,” and “thank you” for living an exceptional life and modeling the essence of a “can do” attitude, and especially for leaving some long-lasting and important marks on the world (besides his exceptional children!).

Happy Birthday Daddy! You are a hero and example to many!

Love,

Matt (John M. Steinhauer, III – a name I wear proudly!)

DSCN3748

John Mathias Steinhauer, III, and John Mathias Steinhauer, IV – doing our best to carry on the Steinhauer tradition of serving our community!

“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.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

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.