Joey's Way Is The Only Way
Little did we know last November that our lives would be so completely altered.
By Mary Moreau

The little baby we call Joey is almost a year old now. Suffering is an ongoing part of his life. Perhaps that's what makes his way so special. When he looks at you, he focuses intently. He searches your features, forgetting himself. His smile is quick and wide. One look at his handsome little round face with bright, curious eyes and button nose immediately engages whomever he meets. And responding to the spontaneous smiles and greetings that he elicits, Joey then wraps you up in laughter and love as he draws you into his joyous discussion. Waving arms and kicking legs emphasize his happy mood. Today, this beautiful boy who smiles and talks with his whole body has forgotten last night and so many previous occasions that pierce his happy little way with the painful realities of his life.
           
It was well after midnight when my husband I were jolted out of bed to the muffled sound of our growing bundle of joy struggling to breathe. Those startling minutes of holding him up, helping him catch his breath, again brought back memories of this past Easter when his suffering was almost unbearable to watch.
           
At the beginning of Holy Week, Joey caught a nasty cold that soon moved into his chest, causing pneumonia. Such an occurrence is bad enough for any six-month-old baby to endure but a child such as this had complications that demanded a heroic, fighting spirit.
           
Joey was born with Trisomy 21 -- what is known as full Down syndrome -- a genetic disorder that can manifest itself in a hundred different ways. But the unique characteristics of each person can have an impact on every genetic challenge. Joey's unusually narrow nasal passages, airways, ear canals, esophagus and bronchial tubing can block so easily. A head cold combined with pneumonia meant that hospitalization, and the normal intervention (of nebulizer treatment through breathing apparatus) would not work the usual way for Joey. It's a horrible feeling to helplessly watch as your vulnerable little son struggles to find desperately needed and ever-dwindling oxygen, without which cell death was starting to occur.  Stethoscopes seemed so redundant when my ear on his chest detected a sound like Niagara Falls in his lungs. My fear raged through an agonizing Wednesday night and most of Holy Thursday as I watched Joey struggle quietly (he cries so little). I had to accept that perhaps God wanted to take our baby home.
           
But then aggressive intervention, including major suctioning and more powerful steroid administration, turned the tide for Joey. By Easter Sunday, Dan and I were euphoric that our baby was back to his usual bubbly, happy self -- flirting with all the nurses. However, further breathing emergencies, allergic reactions and ongoing struggles with eczema and possibly developing asthma have kept us on our toes, ever-watchful for potential problems ahead. Joey's most apparent additional difficulty with hypotonia (poor muscle tone) also keeps us looking for the best means to help him on his way through our life together.
           
Little had we known early last November that, at ages 54 and 55, our lives would become so completely altered.
           
Born in mid-October at 7½ pounds to a Chinese couple, Joey's face did not (and still doesn't) show the typical features of Down syndrome. Conclusive genetic testing, however, confirmed their fears and their choice was clear.  There is no place in their homeland, to which they were to return, where a child with Down syndrome would be accepted.
           
On the other hand, in our adoption application 10 years earlier, I had requested a baby with Down syndrome. Having worked both in direct community services and in management, I was familiar with lots of treatment services for such special people. "But we're too old now," was one particularly nagging thought. As well, even with one of each of our parents recently deceased, we still had our remaining elderly parents to think about and care for. I had just started a new career path in working with the elderly, convinced this was my new calling.
           
It seems like yesterday when we sat across the table from that professional and handsome Chinese couple, as part of their process of selecting adoptive parents for Joey. The mother's gentle manner and quiet tears betrayed the pain they must have felt in giving up their son. "The best possible place for this baby is with you," I had countered, thinking they would change their minds. They knew our story, how we had married in our early forties, discovered my inability to have children, and also how I had devoted recent years to caring for my mother until God called her home. We had shared lots of information with Joey's parents about what various therapy interventions were now accomplishing and how impressed we were with our three-year-old niece who also has Down syndrome. This had served to persuade Joey's parents to choose us as his adoptive parents. One week later we were confronted with our choice in response to theirs.
           
Joey's birth mom's first courageous choice to let him live ultimately resulted in our choice to raise him. On Nov. 17, just a week after that first encounter, we brought our beautiful baby across the water from Vancouver. In all my years and adventures -- which included a demanding career, competitive sailing, flying planes, learning aerobatics, teaching yacht cruising in our Gulf Island coastal waters and even trying paragliding from the top of Grouse Mountain -- none of these experiences brought me close to the all-encompassing thrill of bringing our first baby home and the ongoing joy of sharing in his life.
           
The warmth of Joey's personality reminds me of the adults with Down syndrome with whom I once worked. I lament the loss (through abortion) of so many children with Down syndrome. Our complex world blocks the beauty in life that their perspective uncovers.
           
Our marriage, all our extended family (especially Grandpa, Joey's best buddy) and our community continue to be richly blessed with his presence among us.
           
Joey's way -- suffering included -- has become our only way.

Mary Moreau lives with her husband and baby in Sidney, B.C.  This essay originally appeared in the Facts & Arguments section on the Globe and Mail on October 2, 2006 and is reprinted with permission.