Guest View: ‘The Roof is Leaking,’ and other observations of living life with a Down syndrome child

March 21 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.
Mar 21, 2014

March 21 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 played host to the Ascension Ringers from Augustana College in Rock Island, Ill. 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.

Matt Steinhauer is the pastor of Faith Lutheran Church in Lebanon, and blogs at writespeakreatreat.com

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