A Life of Love for a Man with Down Syndrome

By Robert R. Schwarz

But with this child sent from above
   Comes stronger faith and richer love

                                                               (from an anonymous poem  )

            The life of 54-year-old John Andrew Miller is best defined by love . It is the love of a family who said "no" to doctors who advised that John ,  when he was born ,  be institutionalized, and thus   depriving  John and his family of much of this love .

            John was born with Down syndrome. Scientists say this syndrome  is caused by being born with extra genetic material (chromosomes ) .   John's family and friends ,   however , say this was and has been a blessing of God's unfathomable grace . They will tell you of their unconditional love relationship with John ; and John himself , by his behavior and a face often wearing heart-felt smiles, easily adds testimony to this blessing  .

        

John Miller on the St. James altar during Mass

   On every other  Sunday  you see  John on the altar of the St. James Catholic church in Arlington Heights, Illinois . He is robed in white  and, during prayers, is  standing or sitting  next to his friend, Tom Stengren .   Tom  , 70 years of age,  is the senior vice president of a realtor firm and a former village trustee.  As a Mass coordinator,  he helps  John , who  can neither  read nor hear very well, participate in the Mass . Tom does this with an occasional  nudge and American Sign  language taught to him at a young age  by his mother. 

Tom's  friendship with John started just a few months ago  when, during the Mass procession, he saw John walking down the  aisle with the pastor , who earlier this year lost his brother  to Down syndrome.  " Seeing John with our pastor like that, really got to me, "  Tom  said. " When I first met him, there was an immediate connection  between him and me. He is a very warm person."  When the two meet in the sacristy before  Mass,  John greets Tom with a hug.

Being a friend to John "is a huge gift,"   he said,  . " I get so much out of it. Just the feeling of helping someone like John. "   He said people come up to him after seeing him and John  on the altar and say things,  like  " this makes coming to Mass worthwhile, just to see you guys on the altar there. " Tom  is the father of two grown children, neither of whom is mentally challenged. 

 

            Tom believes  John has great faith and understands the Mass. "He'll often point to the cross ."  During singing, Tom draws close to John so  his friend can hear Tom singing  . " He'll look at me then. "   Tom has taught his friend how to bow. Jean Pharr , John's sister  and one of his two guardians,  can recall their mother ( now deceased ) saying how her son after Mass would  fold his hands and say in his sign language, Thank you  Jesus, for my Mom. Thank you, Jesus, for my father and my family.

            

     This reporter interviewed John's family one  November afternoon  in his sister Jean's  suburban home  in Prospect Heights.  Present were Jean,  Mary, her sister  and John's  other guardian , Andy Miller,  John's 88-year-old father , and Tom . Moving around us were the family's two dogs, Daisy and Hazel.  John was   absorbed in the television movie, "The Wizard of Oz ", and when I finally got his attention ,  he smiled widely and gave me his " I love you sign"  of an outstretched hand with three extended fingers . John is four -feet, six inches tall and weighs 128 pounds.  Mary is an antique dealer and has three children, one of whom has autism .  Jean is the mother of two children and works with her husband , an over-the-road freight broker; Mr. Miller  is retired  from the Western Electric AT&T company.

            John spends every other weekend with one of his sisters.  During the week, he is cared for at   Glenkirk , a  facility in  Northbrook , Illinois for developmentally disable individuals of all ages . He resides in one of Glenkirk's  several community living  homes . His fees are paid by Social Security and the State of Illinois. " It seems to work out real well for John,"  said Mr. Miller, a widower for the past three years.  "It was getting difficult to take care of  John alone.  " 

          

Giving his " I love you" sign , joined by his good friend
Tom Stengren 

        John continued to watch his movie while the five of us talked about his  characteristics, his likes and  dislikes, and  how his life has impacted that of his family.  John  likes McDonalds' hamburgers;  going through his magazine collection ; and watching action movies with super heroes—he cried when he thought Superman had died in a Batman movie.  He also likes to  shop at resale shops  for  picture books. " He likes routines, " Jean said. "Once you do something with him, he wants to do it all the time . " John  dislikes eggs.

John eventually turned away for the TV, made his I love you sign to me   and posed with the dogs for a photo. 

Though John has been diagnosed as having  the mentality of a seven-year-old,  " He's very capable of doing things for himself, like getting dressed, "  Jean said. He needs some help taking a shower, though. He can feed himself  but needs help in cutting  meat. "He's very willing  to do things that  please people, " Mary added. 

Anything make John sad ?  " Not getting his way, " a family member replied.  We laughed. What about discipline ?  " He needs correction at times, but you really can't discipline him, " Jean said.  " You tell him  he's got to behave and that what he was doing was wrong. But he wouldn't understand if you denied him something  because what he did was wrong. He would just get angry. "

            In 2003 , John's mother ,  Louise,  and her husband wrote a 59-page history of their son with this preface: He [ John ] would never be able to tell us  [ his] story so maybe we can put together a story about John  that will someday mean something  and help someone. Some of their notes were:

            He collects newspapers and will take the neighbor's if not watched; Collects Disney books; loud noises bother him, like a barking dog or someone screaming; at Glenkirk, he will dance alone except when a  staff member asks him;   He feels everyone is his friend;  You can’t  hurry  John…let him think about it and make up his own mind;  needs a room to himself for space to move furniture around;  He does not like change, needs frequent reminders about upcoming changes and events.

  

                                                          Some Stats about Down Syndrome

John,  many years ago, with Fr. Bill Zavaski,
St. James pastor emeritus

            According to the National Down Syndrome Society, one in every 691 babies in the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year. The society's  on-line report adds that , due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80% of adults with Down syndrome reach age 60, and many live even longer.

         
  The extraordinary love shown in raising  John began the day he was born at Lutheran General hospital in nearby Park Ridge. Mrs. Miller's mother was in Iowa recovering from a heart attack, and  the family, knowing that  her daughter-in-law  had just given birth to a child with Down syndrome, was  concerned how this news would effect  her.  When her physician went into Mrs. Miller's  room with the news,   she gave her a  poem .

Heaven's Very Special Child

A meeting was held quite far from earth 
"It's time again for another birth" 
Said the angel to the Lord above, 
"This special child will need much love. 
"His progress may seem very slow, 
Accomplishments he may not show, 
And he'll require extra care 
From the folk he meets way down there. 
"He may not run, or laugh, or play 
His thoughts might seem quite far away, 
In many ways he won't adapt, 
And he will be known as handicapped.


"So let's be careful where he's sent 
We want his life to be content. 
Please, Lord find the people who 
Will do a special job for You. 
"They will not realize right away 
The leading role they're asked to play, 
But with this child sent from above 
Comes stronger faith and richer love. 
"And soon they'll know the privilege given 
In caring for this gift from Heaven 
Their precious charge, so meek, so mild 
Is Heaven's very special child!" 

( written anonymously )

           

       In preparing John's mother for the same news, a nurse went  to her bedside and injected  her with a tranquilizer. Mrs. Miller  later wrote in the family journal:  " [ The doctor ]  came in to tell me that John had Down syndrome. He didn't want me to see  John or hold him but wanted us to take time to think about placing him in an institution. "

         

At his sister Jean's home  with Tom Stengren ( on left ) , his
father Andy Miller, and sisters Jean Pharr (back left) and
Mary Prechodko. 

  When during our recent  interview I asked  John's father  if  raising his son had been a challenge , he glanced over at John and warmly  said:  "It's been a challenge from the day he was  born.  We were under a lot of pressure when he was  born to give him up and put him in an institution, that he'd be such a burden on us that we wouldn't be able to take care of him . "  Mr. Miller got the same advice from a pediatrician and a priest . " That's what they were taught in those days. " 

            When a newly ordained priest came to hospital to baptize John and saw how the family truly felt , he suggested they visit  Misericordia ,  a large residential community in Chicago   for  disabled children and adults with diverse backgrounds .  Mr. Miller went to Misericordia to look things over. "The first thing I noticed was this little guy  , maybe two years old, walking around. I asked the nun, ' why is he here ? '   She said, 'He shouldn't  be. He should be home with his parents . '  I became convinced not to listen to the doctors . We never  changed our minds." The doctor    who had originally  advised that John be institutionalize,  years later   "confessed to  us how wrong he had been and was glad we hadn't listened  to  him,  "   Mr.  Miller related .

             John  graduated at age 21 from the Kirk School for the  developmental disabled  and continued to learn  independent living skills. "The family's goal has always been to have John live as independently as possible,"  his sister Mary said. 

            The Miller family journal entitled  " This Is John's Story"  closed  with these words:  "We have benefitted immensely from things he has taught us like unconditional love and patience. He helps keep us grounded and to realize what the important and simple things are in life. "

            Said Tom Stengren, " I love John. Every time I look at John, I feel the presence of Jesus. If that isn't love,  I don't know what is." 

          Among  the  paintings in the Metropolitan Museum in New York City hangsThe Adoration of the Christ Child , circa 1515 , by Dutch artist Jan Joest (http://www.downsyndromeprenataltesting.com/down-syndrome-diagnosis-at-the-adoration-of-the-christ-child/ )  According to the museum's website , when a Dr. Levitas , who specializes in psychiatric disorders in people with developmental disabilities, including Down syndrome,  first approached this painting, he noticed in  the features of the small angelic figure depicted next to Mary and those of  the shepherd standing one row back  ;  they were  the distinctive features of Down syndrome: a flat face, folded eyelids, small nose and down-turned mouth.

                            rrschwarz71@comcast.net

The End

All comments are welcome.

© 2017 Robert R. Schwarz