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!

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.

 

 

“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.

Don’t Forget “Brother’s Day!”

A few years ago, after watching his mom receive several Mother’s Day cards (one of which he made himself), and what seemed like an extraordinary amount of attention and love being directed toward her, my son, Matt, asked: “When is ‘Brother’s Day?'” Of course his two sisters, and mother, and I all looked at each other and giggled, and wondered why we had never thought of that?

1620435_10152186416018467_2051343113_nEvery now and then, when Matt is hoping to receive a new CD, or T-Shirt with one of his favorite singers or actors’ “Avery T-shirt transferred” on to the front of it (many times with him photo shopped into the picture with them), and there is no apparent celebration such as Christmas or his birthday coming up, he will ask: “So when is Brother’s Day?”

In mid January, Matt’s sister, Kerra, called to say she had ordered a T-Shirt she was going to surprise him with on a weekend visit in February. The week before Valentines Day, Matt got off the bus and asked if his CD was in the mail. I had no idea that any CD had been ordered, but got to thinking if Valentines Day was only a few days away he had good reason to be hopeful. “Has the mail come?” was how he started the conversation, and then he said something about “Kenny Chesney…the road and the radio.”  He quite often makes up titles of CD compilations that don’t even exist with the sheer hope that him giving it a name will make it a reality.  When we bought Brad Paisley’s “Wheelhouse” as soon as it was available, within a week he asked for “Wheelhouse Live.”   I later found out there really was a “The Road and the Radio” by Kenny Chesney.  He had asked his mom to “order it” – his words – and so he actually knew what he was talking about.  But before I knew all this, and just to humor him and get him to stop talking about it, instead of walking into the house I told him, “Let’s go check the mailbox,” because I knew there wasn’t going to be anything except mostly junk mail in that day’s delivery.

As soon as I opened the mailbox there was a gray padded envelope addressed to Kerra. “What’s that…a CD?” he asked excitedly? I figured it was the t-shirt and I had to think fast. Knowing Kerra would be home in a couple of weeks I informed him: “It’s your Brother’s Day present from Kerra!” “Can I open it?” he asked. “No….you have to wait until Kerra gets here. She wants to be here when you open it.”

I think “Brother’s Day” was meant to happen on February 21-22 this year.

It will begin around 11:30pm the night of the 21st, when sister Kerra, brother-in-law Brett, and “dog niece” Lucy arrive and Matt finally gets to open the package.

Matt and Brad Paisley

This was Matt’s first concert – Brad Paisley in Knoxville, TN, in March 2012. Two wonderful friends arranged an after-concert backstage visit with Brad and it was a real treat for Matt and us too. Brad was an exceptionally kind and gracious “star.” Matt is wearing an autographed shirt that Brad had sent to him when he heard he had such a big fan at Station Camp High School.

It will continue all day Saturday, when we will surprise him with concert tickets to one of his all-time favorite singers, Brad Paisley. A kind man from the church where Matt participates in a “Special Friends” Sunday morning class, gave us four tickets to Brad’s Nashville concert. Matt will not know about this until the day of the show because the last time we got him tickets to a Brad Paisley concert we made the mistake of giving him the tickets for Christmas and having to wait until early March to go….listening to Matt’s continual questions about the concert and Brad Paisley. “No Matt, I don’t think Brad will come to your house and watch ‘Mean Girls’ with you.” “Yes Matt, I am sure Brad would love to come to your school to ‘recycle.'” (Matt said three things to Brad when he actually got to meet him at that first concert, and one of the first was: “Will you come to my school and recycle?”)

I don’t know if “Brother’s Day” will ever get enough traction to become a national holiday. If it does, please remember it was Matt that started it!

“Why Do You Keep Saying That?” An Answer to a Question Everyone Should Ask

In my Lutheran tradition, when it is time for Holy Communion, the communicants are invited to come to the altar rail and kneel or stand to receive the bread and wine.  I guess the meaning of participating in that meal is as diverse as the people who come and gather at the table.

My eighteen year old son, Matt, has Down syndrome.  He has been taking communion for at least a dozen years.  From the very first time he took communion he just seemed to know what he was supposed to do, and for several years now he has no trouble stepping up to the altar (sometimes before the ushers have given him the “now-you-may-go” sign), kneeling, and extending his hand to receive the bread.  However, it is rare that Matt does not offer some commentary as he receives communion.

Before I was ordained, and was serving as a Vicar, I was assisting at the communion table, distributing the wine from the chalice, following the presiding minister, who was distributing the bread.  When the presiding minister got to the person just before Matt, he ran out of bread, and so he turned to move toward the altar to retrieve more bread.  There Matt knelt, hand extended, expecting the Bread of Life to be placed there lovingly with the words: “The Body of Christ…given for you.”  As he watched the pastor walk past him without even acknowledging that he was kneeling there, Matt exclaimed loud enough to be sure the pastor heard him: “Hey!  I think you forgot something!”

Since I have been presiding at communion I have always wondered what Matt was going to say.  Sometimes it is simply “thanks,”  Sometimes it is: “Thanks Dad….see you at lunch.”  Sometimes he mumbles a little bit and is honestly hard enough to understand that I just smile at him and move on to the next person.

On a recent Sunday, as soon as I handed him the bread and said: “The Body of Christ given for you,” he replied so clearly that I heard him – and I am sure everyone else did too: “Why do you keep saying that?”  I smiled at him and moved on to the next person.  But as I did that, I couldn’t help but realize he had been paying attention.  He always does.  He realized I was saying the same thing to everybody.  Or maybe he has always noticed that – and today he was going to ask me “why?”  The assisting minister was following about three people behind me, and when the small cup of  wine was given to Matt, with the words: “the blood of Christ shed for you,” I heard him ask again: “Why do you keep saying that?”

All of a sudden, I wasn’t sure if he was asking me that because he wanted to know, or if he was asking me that to test me?  I could almost sense him asking us: “Do you know why you are saying that over and over: ‘The body of Christ given for you? The blood of Christ shed for you?’”

I decided to learn from him in that moment, and that is why, before I pronounced the table blessing, after everyone in the congregation finished taking Communion, I told everyone present  that I had heard him ask that question of me and the communion assistant, and here was my answer…and I thought that it was a question everyone should ask, and so everyone should hear the answer: “Matt, I say that to everybody because none of us can hear the story enough times about how much and how deeply God loves us: “The body of Christ given for you…the blood of Christ shed for you.”

It is not just that Jesus’ body was given, or his blood shed. These things were done for you.

Thank you Matt for reminding me the importance and impact of what we say and what we hear when we receive this holy gift from God.