Life and Death Stuff, Ethan: Unlikely and Unexpected 6/7
Mr. Sean George, Chandler United Methodist Church
October 22nd, 2017
Will you pray with me? May the words of my mouth and the meditations of all of our hearts be acceptable in your sight, O Lord, our rock and our redeemer.
Jonathan asked me to speak this morning because I had told him about a story that I shared at a library program for adults back in April. Although he was unable to attend, he thought the story would be appropriate to share here as well. That event was planned around the theme of wisdom connected to children and childhood, and I framed my story around the unlikely and unexpected wisdom gained from my firstborn son, Ethan, but there is plenty of “Life and Death Stuff” in this story, too. So I will start with the unlikely and unexpected events leading up to Ethan’s birth.
My wife Janine and I are more than 11 years apart in age and back then we were even farther apart in geography. Janine is a northern California girl, who was living in San Jose at the time, and I am a Southern boy, then living in Hattiesburg, Mississippi. She was recently divorced, with two children, and fairly comfortable being independent after her first marriage. I was a graduate school student who had just been dis-engaged from my first fiancée. So how did two people like us end up meeting? Well, online of course, but bear in mind that this was 1996, less than a year after the internet had become available to the public. So our situation then was much less common that it would be today. Despite the protective warnings from my parents and Janine’s friends, we decided to meet in person, then eventually moved her from northern California to south Louisiana, and got married on Valentine’s Day 1998.
As unlikely and unexpected as it was for us to meet and marry in the first place, the idea of having children together was even more doubtful. Janine had had a tubal ligation after her first two kids but she was willing, and even eager, to get that situation reversed. The bigger issue was that, at that point in my life, I had long since decided that I never wanted to have children of my own, for a variety of reasons. Well, flush with true love and newlywed bliss, I reconsidered that choice. Janine had the reversal procedure and we gave it our best effort. The first pregnancy ended in a miscarriage but we obviously didn’t give up, and soon Janine was pregnant again. The second time around, everything progressed pretty normally and the ultrasounds showed nothing unusual. So we chose not to have the amniocentesis because we didn’t want to know if it would be a boy or a girl. Against all those odds, my wife and I were going to have a baby, and it was the happiest I had ever been in my life. We were confident that this child, born of our all-conquering love, would be special, one-in-a-million…you know, just like every other loving parent thinks.
On Monday, November 15, 1999, Janine went into labor and I drove us to East Jefferson General Hospital in Metairie, LA. At 6:38 PM our baby boy came into the world and he was even more special than we had imagined…
So special, in fact that the nurses took him directly to intensive care and we had to wait hours to find out exactly how special he was, in medical terms. The doctor came to us late that night and explained that our son had Trisomy 13. We finally got to see Ethan around midnight but we did not get to hold him until the next day, and even then we had to be careful not to dislodge the various tubes and wires that were keeping him alive.
If you are unfamiliar with Trisomy 13, as we were then, the short explanation is that it’s a genetic condition related to Down Syndrome (which is Trisomy 21) but T-13 is both more rare and more severe. About 95% of cases end in miscarriage or stillbirth and, of the T-13 babies who are born, less than half survive their first two weeks. Unlikely and unexpected. Ethan’s initial physical manifestations included a severe cleft lip & palate, so he basically had no separation between his mouth and nasal cavity. He had under-developed eyes and ears, an extra vestigial finger on each hand, and internal trouble with his heart, stomach, and urinary tract.
He also had strawberry blond curls and the cutest little apple face. Make no mistake, Ethan Brockner Favrat George was still our precious one-in-a-million child.
I want to be clear however, that Janine and I did NOT make that decision consciously. We did not intentionally forge the wise path of loving and celebrating our child despite his medical condition, nor did we bravely refuse to let despair overwhelm us. We did deliberately discuss the situation that night at the hospital but the truth is that our conversation was just an acknowledgement of something that happened subconsciously in both of us. Somehow, we had simply accepted the situation (as painful as it was), remained grateful for our beautiful child, and focused on the best way to operate within those parameters that were beyond our control. Those were unearned gifts, not triumphs of will. We were not heroes, and we were clearly not in control. Ethan was the hero, our hero, and we all know who was in control.
Well, like all heroes (and other new babies, too) Ethan had milestones but his were different than most– things like coming off the ventilator machine and breathing on his own, then graduating from IV nutrition to breast milk, which was pumped through a tube down his throat. That led to getting milk and mucus down his windpipe, and the beginning of daily periodic suctioning to clear his airway. He had his first corrective surgery. One day he finally opened one eye just a little. Then he stopped getting morphine and, eventually, he graduating from the life-support crib to a regular open crib. All that was in the first two weeks.
Through all this, despite those gifts I mentioned, of acceptance, gratitude, and perseverance, Janine and I naturally had our moments of frustration. We found however, that some of our family and friends had other issues, like denial, pity, and anger, which made it hard for them to visit Ethan, and some, could not stay long in his presence when they did visit. Even a hero like Ethan couldn’t overcome all his challenges as quickly as he had conquered us, and sometimes people can’t abide what is beyond their control or comprehension.
During Ethan’s third and final week in the hospital, as we made preparations to bring him home, he had a new milestone– his first apnea episode. Changing his diaper one day, Janine and I noticed that he had stopped breathing altogether. Well, the nurses immediately swung into action with suction and the tiny oxygen mask and, just before they decided to reinsert the ventilator tube, he started breathing again. The whole episode lasted three or four minutes and the timing was perfect because it put us on notice.
Still, on December 6, three weeks after his birth, Ethan FINALLY came home. He quickly established the new home routine: feeding and suctioning every three or four hours, sleep deprivation for Janine and I (like all new parents), and three more apnea spells spaced out over that week. Ethan had his first “regular” doctor visit, and we met with the ChildNet caseworker to start planning for various services that Ethan would need as he grew up.
The following Tuesday came the next milestone, although this one was more for Janine and I than for Ethan. I had been out of the house for a few hours and, when I came home for lunch, I walked in on Janine and my mom frantically trying to revive Ethan from another apnea spell. That was the day Janine and I realized that fighting so hard to resuscitate him really served our own interests more than it did his. We knew that the time would probably come when he would not recover anyway, and we were certain that all three of us would benefit more from Janine and I simply holding and loving Ethan when the time came for him to go… So we decided to stop intervening during his apnea spells.
With this decision in mind, Ethan got baptized that afternoon and that night shortly before midnight, sure enough, Ethan stopped breathing again. Instead of scrambling to suction him, we picked him up and held him between us, stroking his cheek and telling him how much we loved him. After being out for a few minutes, Ethan had a couple of spasms and then a strong exhale… But a few seconds later he inhaled spasmodically, and again a few seconds after that, and then we realized that Ethan was breathing again on his own. Unlikely and unexpected would be an understatement.
Ethan’s new normal became four or five apnea spells per day, with each one lasting between three and five minutes, and he kept recovering from them without any assistance from us. Paradoxically, when we quit scrambling to save Ethan’s life every time he stopped breathing, all three of us were able to enjoy our life together a lot more. Starting then really, as Ethan joined us on errands and activities, we packed in a lot of gloriously normal living. Over the following weeks, Ethan went back and forth to the airport with us to pick up visiting family & friends, went shopping with us, and went to church on Sunday (where he had his own receiving line, thank you very much).
Let me take a moment here to mention that many of those people at St. Charles United Methodist Church, who lined-up to meet Ethan that first Sunday, had not only been praying for us but also provided many meals to us over those weeks. When I told this story in April, I made a point about the wisdom of that kind of meal ministry in church communities but I’m sure many of us here are familiar with that already.
Anyway, Ethan travelled up to Baton Rouge with us on Christmas Day to celebrate with more family and friends, went to a minor league hockey game with us, rang in the new year with fireworks and a toast (our champagne glasses and his feeding syringe), and helped us tour the visiting family around the French Quarter. Then he went back to the airport with us several times to send them all back home. Throughout those weeks of whirlwind activity, Ethan was not always chipper and pleasant but no other new baby would have been either. Fussy babies are not always fun but that is about as “normal” as it gets. Of course, there were more doctor visits than normal and, over the course of those four weeks, Ethan had 57 apnea episodes, all of which came and went just as they would have if we had chosen to stay home.
On the morning of January 4th, after seeing off his west coast grandparents at the airport, Ethan went to the doctor and we discovered that he had developed an ear infection– not unusual for a baby, and a good explanation for his extreme agitation the previous day. The doctor prescribed an antibiotic and Tylenol with Codeine to ease the pain, and Ethan got the first doses of both medicines at his noon feeding. Fortunately, he rested well that afternoon, apparently pain-free. Unfortunately, the Codeine also seemed to depressed his respiratory system and, although he had not had any apnea spells on Sunday or Monday, he had 14 between 1:00 Tuesday afternoon and 10:00 that night. Despite that, we had an otherwise quiet evening, just the three of us eating dinner and watching television. Ethan’s fifteenth apnea episode began at 10:11 PM. He began to recover from it at 10:15, taking a few breaths, but then he stopped again.
After ten minutes of him not breathing, we realized that he was not coming back this time but we waited until 10:45 to call our Hospice nurse. In retrospect it seemed to Janine and I that, following all the excitement of the holidays, Ethan had waited for everyone to go back home. He had given us one full day together, just the three of us, before saying goodbye. I’m sure the Codeine had a lot to do with it but it felt to us like a final heroic effort on Ethan’s part. At this point I have come to understand that it was simply God’s inexplicable timing working through a combination of those other two factors. Either way I still cherish it as a blessing.
Now before I offer my reflections, I want to lighten the load by reminding everyone that Janine and I did have another son, Aidan, in March 2001. For those of you who haven’t met him, or may just be wondering about him since his absence, he is now 16 and a junior at Perry High School. We love him tremendously, of course, and he is well-acquainted with his older brother’s story. Fortunately, Janine and I both agreed on that because we believe life and death are inseparable.
Earlier I mentioned that some family and friends had trouble dealing with Ethan’s situation (and some of them still do). Ultimately, I think all those negative reactions have to do with the way different people handle the reality that we are not always in control of our lives as much as we might like or insist. I chose the passage from Job this morning partly to show that this is not a new problem. In fact, it was already a very old problem 2000 years ago when Jesus himself admonished the disciples not to worry so much about their lives, with those well-known words toward the end of Matthew 6 and Luke 12, about the birds and flowers. If you have been part of this congregation for any length of time, you know that this is something we talk about fairly often. Do we wisely seek or recognize, much less accept, God’s grace in the face of the unlikely and unexpected aspects of life and death or do we ignore it, deny it, pity it, rage against it, or perhaps force it into our own petty framework of deserved consequences? We eagerly assume that the pleasant surprises in life are rewards and the painful ones are punishments, and we arrogantly explain or question who deserves what, and why. Well, we all heard God’s response to Job when he hurled those indignant questions to the sky following his difficulties. If you haven’t read Job in a while, you might also want to check out what God had to say about those friends who claimed Job’s problems must have been some kind of “just desserts.”
In the interest of full disclosure I have to tell you that, while I never had any trace of denial or pity with Ethan, I did have to face my own anger issues. One night, perhaps a week after Ethan had been home, he was crying constantly and inconsolably, and we could do nothing for him. I was overcome with anger and blew up at Janine. If I‘m honest with myself, I have to admit that it was entirely because I couldn’t handle the lack of control I had in the situation. So I am painfully aware that I am not always good at this and, actually, I am surprised that I wasn’t any worse at it than I was during Ethan’s short life.
I often feel like a complete failure in the face of such things, like parenting Aidan, teaching other kids in public schools, being unemployed for months after our move to Arizona, and caring for other family and friends who depend on me— all situations where I have no real control. Then of course there the feelings of powerlessness that come with natural disasters. Just ask the folks in Texas, Florida, Puerto Rico, California, Oregon, Montana, India, Bangladesh, etc. about how much we are in control of our lives. Another problematic response is that, whether people believe in God or just random chance, some folks think we are just along for the ride and there is nothing we can do about any of it. My own approach is to keep reminding myself of the duality that I am not in charge but I must keep doing what I can, and vice versa, although I keep doing what I can I am not in charge. While we cannot control our circumstances, we can at least try to control our response to them, and the actions we take do have some impact. I believe that Christ calls us to action, both for our own sakes and for the benefit of others. Somehow, with Ethan, I was mostly able to channel my response in a constructive way. Maybe because it was so obvious that the situation was out of my hands, I knew I had to rely on God’s grace and that, as we say in our liturgy text, freed me for joyful obedience. So I’ll end with an epilogue, showing how God and my heroic baby boy enabled me to respond in a positive way to that out-of-control reality– how Ethan truly was a blessing.
Despite the difficult situation and negative reactions of some family and friends, Janine and I actively worked to share Ethan with as many people as possible, even beyond our personal circles. As a professional librarian, I had been storytelling and helping people find information since before Ethan came and went. One of the reasons I was able to share such detail with you today, more than 17 years after the fact, is that during Ethan’s life, before blogs were common (and Facebook didn’t even exist yet), I set up a personal website and posted weekly or sometimes daily updates about Ethan and explanations of his medical issues. On one level, I did this to avoid multiple repetitive phone calls to family and friends that were scattered around the country but I also intentionally hoped to help other families who found themselves in a similar situation, by sharing both useful facts and a personal connection. It was also something I did gladly, and I know it helped me and others get through the pain.
I received several messages over the years, mostly from people who expressed appreciation, but some from folks who were rather irritated with me. You see, along with the factual content, I had also concocted a silly superhero storyline to go along many of those posts, featuring “EthanMan” as the hero. Some people told me, in no uncertain terms, that it was inappropriate and disrespectful for me to “make fun” of my son’s condition. Now those people are certainly entitled to their opinions but I think they were missing the point. From my perspective, I was “making light” of the situation not making fun of my son or others like him, and I did have some awareness of the concepts I have been discussing, accepting my lack of control and relying on God’s grace. To be honest though, my main motivation in writing the “EthanMan” vignettes was simply to give my son a gift. I really just hoped that one day Ethan might be able to enjoy being the title character in a superhero story. My hope in sharing this story today is that all of you can see who the hero really was and remember who is in control.