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.

“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.