“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.

Check That Off the Bucket List! (First of two installments)

This blog was written on June 23, 2013.  I felt like there was something “unfinished” about it, and so I never posted it.  Little did I know that the “unfinished” part had little to do with the writing, and ALL to do with the fact that (unknown to me in the summer of 2013) the story was not yet over.

I would like to think I am not star-struck.  Here are some “famous” people I have met.

When I was maybe eight or nine my dad was instrumental in organizing a telethon for Cerebral Palsy that was produced in Nashville, and I went with him to the airport to pick up Jayne Mansfield and Ed Ames (Mingo on “Daniel Boone” at the time).  To show how young I was, I was a whole lot more excited about being in the car with “Mingo” than I was being in the car with a glamorous movie star!  When I was in fifth grade I played guitar and sang “Green, Green,” on my elementary school stage at a talent show, and Nashville session picker, Harold Bradley, played backup for me.

Steve Shaw and Burt Reynolds in W.W. and the Dixie Dance Kings

Burt Reynolds (R) and Nashvillian Steve Shaw (L) on the set of “W.W. and the Dixie Dance Kings” in the early 1970’s

While in high school I watched a scene from a Burt Reynolds movie being filmed in Nashville (my cousin was a stunt double and stand in for Reynolds), and I met Burt.

During my few years in the music and publishing business I worked with Bill and Gloria Gaither, B. J. Thomas (Raindrops Keep Falling on my Head), Jeannie C. Riley (Harper Valley PTA), legendary football quarterbacks Terry Bradshaw and Roger Staubach, and I was invited to the White House for an “All Day Singing and Dinner on the Grounds” with President Jimmy Carter and met him and Rosalyn.

I palled around with comedian Jerry Lewis for about three days while he was acting in a commercial that was being filmed at a sound stage I worked at in Dallas, Texas.  I worked on an Amy Grant music video.  I was on the production crew and the scene (Angels Watching Over Me) involved her almost being run over by a car.  The “prop” car was a 1957 Chevy Bel Air and it was a straight shift. I was the only one on the set that knew how to drive a straight shift so I was tagged with the task of trying to run over Amy Grant (look for the video on Youtube).

When my wife, Leann, was singing backup for Opry Star, “Whisperin’ Bill Anderson,” I sat by Reba McIntyre (before she was particularly famous) on the stage watching the Opry, and had a nice conversation with an “up and comer.”  I was in a couple of charitable organization committee meetings with Minnie Pearl.  I sat by Michael Johnson (Bluer than Blue) at the Nashville Symphony one night.

Of all of those people – some of them famous in their particular context, but some of them internationally famous – I think the only autograph I have is Roger Staubach’s.  His autograph is inside a book that he wrote which was published back in the early 1980’s.  I was given thirty minutes in his office to meet with him and interview him for a radio show.  The producer and I talked about what “amateurs” we would come off as if we asked for an autograph when we got through with the interview.  I told the producer I didn’t give a flip.  Staubach was my boyhood hero of my favorite pro football team and I wasn’t ever going to see him again anyway!Matt and Gene Stallings

There are two other famous people I have met, and those were both because of Matt.  Legendary Alabama Crimson Tide football coach, Gene Stallings, and Brad Paisley.  Leann and I took Matt to a local speaking engagement of Coach Stallings, and our copy of the book he had written about his son, Johnny, also with Down syndrome.  Matt was probably three years old.  We hoped to get Coach Stallings to sign the book and sure enough, after the presentation they had a book signing.  We stood in line and when we got in front of Coach Stallings he looked up, took one look at Matt, put his Sharpie down and reached for our sweet son.  Coach Stallings acted like the other fifty people behind us weren’t even there, and took very special time talking to Leann and I and encouraging us.  I’ve never been much of an Alabama Crimson Tide fan.  But that encounter changed all that!

A couple yearMatt and Brad Paisleys ago we were able to get tickets to a Brad Paisley concert – Matt had talked non-stop about him for a year or two before that.  Matt knew practically every word to every song that Brad sang.  A friend arranged to get us backstage after the show and we got to spend about ten minutes with a super star.  Brad’s person had put us at the end of the line on purpose.  We had to wait a while to see him, but once we got there no one else was behind us waiting to see him so we had a wonderful, comfortable, casual visit.

It is to that Brad Paisley experience with Matt that I can credit getting a “picture with…” of my own (Hey! If he’s brave enough to do it can’t I?), and, at the same time, marking something off my bucket list – getting to meet an amazing writer, picker, and performer.

There are really just a few “famous” people that, if given the opportunity, I would be thrilled to have an hour or two in their presence. One of those people is Nashville singer/songwriter Beth Nielsen Chapman.  I have been listening to her music for about twenty years.  You may have never heard her sing, and you may have never heard of her.  But I bet you have heard one or more of the songs she has written: Martina McBride’s “Happy Girl,” and if you haven’t heard Faith Hill’s “This Kiss” you have been under a rock somewhere! What has always moved me about Beth’s writing is that she is not afraid to write truthfully out of challenging circumstances in her own life.  She writes about faith, hope, and love, by speaking the truth to doubt, disappointment and loss.  Out of her powerful lyrics and beautiful melodies come a more relevant story for many of us whose lives have been full of surprises – some of them disappointing and difficult.  It seems that across the past twenty years every time I was struggling with something going on around me I have discovered some CD of Beth’s that I had not heard before and as soon as I listened to it there was a song whose words and melody spoke deeply and truthfully to me.  (If you don’t believe me try the CD’s “Sand and Water” and “Back to Love” and if you are not deeply moved by at least one song on each CD….well, you just have a heart of stone!).

Beth Nielsen Chapman is one of those artists who is in Nashville on a pretty regular basis singing for a “writer’s night,” or some concert raising funds for something.  So it is not like she’s not accessible, but it seems that every time I have been aware of her singing live somewhere I find out about it too late to get tickets, or they are too expensive, or I’m booked doing something of my own.  For years I have wanted the opportunity to meet her and be able to tell her what her music has meant to me.

This past May (2013) I attended a continuing education event for preachers: “The Festival of Homiletics.”  In addition to preachers, theologians and other experts in the field of preaching lecturing and delivering sermons, there was a concert to open the event.  Beth Nielsen Chapman and Ashley Cleveland (another Nashville singer/songwriter) were the artists who would perform.  After the concert, a worship service, and a lecture, Beth and Ashley were hanging out selling their CD’s.

If you remember my long list of famous people and my short list of autographs, you might figure I just don’t care about autographs.  While I don’t particularly place a huge significance on them, the main reason I don’t have more is just that notion to not want to “bother” people that I know get asked all the time – get interrupted in the middle of dinner – and who get put on the spot in public because they are famous.  With Beth Nielsen Chapman it wasn’t so much the autograph, as it was the opportunity to have even a brief conversation with her.  I bought four CD’s that I already had and asked her to autograph them…only so I could have an extra ten seconds to tell her, “Thank you!  Thank you!  Thank you!.”  And I did.

Over the next few days (of the Festival of Homiletics), Beth and Ashley would sing a song or two for the small-group-breakout sessions and be present to sell their CD’s and so I happened upon Beth’s CD table at a time when most people were in sessions and so it was slow and I didn’t feel too “imposing” to ask if she would mind taking a “selfie” with me (mostly so I could prove to my wife and daughter’s that I actually met my hero!). She was kind enough to let me get our photo together.  I was not at all surprised.  But I think I must admit, after all, I really am just a bit star-struck!

Beth Nielsen Chapman To be continued….

 

What She Said…

If you go back and look at my (Facebook) timeline it is only occasionally that I have much to say. I hope that is because every week I spend lots of hours listening, reflecting and unpacking what I think God wants me to say in a few minutes on Sunday morning to those good people who have made the effort to come listen. My Lindsay, who will celebrate her 22nd Birthday next week, has discovered something every pastor wishes every person that ever asked: “Where is God” would discover….and believe….and hold on to when it just seems like there is nothing else to hold on to. So thank you Lindsay for giving me something to share that you said worth saying today and everyday on Facebook and everywhere else in the world. I love you!
Here is what Lindsay wrote on her Facebook post:

Well THIS is pretty crazy. I know that we live in a society where people are always wanting something more or something better. I struggle with this too, and it’s also been really tough since I don’t have a job right now, and well, I kinda thought that almost 4 months after graduating that I’d already be making my own money in the “real world”. So I was doing my bible study and had turned to Hebrews 12 for that. I stopped doing my bible study and felt that I needed to pray to be content with where I am in my life right now and with what God has given me, and to stop always wanting something else. I glance down and my bible study book was covering my whole bible except for Hebrews 13:5 which is “Keep your lives free from the love of money and be content with what you have, because God has said, ‘Never will I leave you; never will I forsake you.’ Real funny God, thanks for always showing me that you know a little bit more than I do about life!! 🙂