A Boy Named Silas: The First Five Years Read online

  That other little baby — that perfect, cute, chubby, healthy baby — wasn’t mine, and I didn’t want anything to do with him.

  When I woke up the next morning, Silas and I still weren’t bonded by a long shot. In fact, even after my son got off the seizure meds, it still took work getting to know the “real” him. But at least my dream helped me discover that given the choice between a healthy clone or the real deal, I would chose my son every time.

  This Sucks

  Once when Silas was four, he woke up with a horrible cold. With every exhalation, he tried his hardest to force out a little bark. With tears in his eyes, he finally asked me, “Can you take the coughs out?” So I finally gave in and pulled down the suction machine that had been collecting dust on the top bunk in the boys’ room.

  There was a time in Silas’ life when a “good day” meant Silas went twenty minutes without needing to be suctioned. When he was discharged from the hospital, along with an apnea monitor to wear in his sleep, Silas was issued a portable suction machine I had to carry everywhere we went. Because of his swallowing dysfunction, Silas would choke on his saliva unless I shoved a little plastic tube down his throat and literally sucked the spit out of him. Sadly, Silas had no gag reflex, so I could get the tube pretty far down without any fight.

  It’s amazing the things you get used to out of necessity. For the first year of Silas’ life, I sat in the backseat of the car cradling the suction machine, ready to power up at the slightest cough or sign of distress. I couldn’t even sleep in my own bed because it would wake everyone else up if I used the machine at night.

  When he was a baby, Silas’ lungs always had a wet gurgle to them, and the sound was even worse in his sleep. In our more humorous moments (which grew harder to come by as the days passed) Scott and I affectionately wondered if a ravenous beast was lurking somewhere in our house. We set Silas’ crib up in the living room where his breathing noises, monitor beeps, and suction sounds wouldn’t disturb everyone. And so I slept on the couch, ready to suction his throat when he needed it.

  Back then, the suction machine was such a routine part of my life with Silas that I never thought to hate it. Yes, it was heavy and cumbersome to lug around, but without it our son could choke to death. We kept it constantly charged, and our biggest fear was a several-day power outage (not unheard of in Glennallen) that would deplete the batteries and leave us unable to clear Silas’ airway for him.

  I’m sorry to say that we still have the suction machine. Even though I only pull it out in the event of a major cold, I’ve come to despise just about everything about it. It’s big, it’s loud, it’s heavy, it’s gross (all that snot and those secretions have to go somewhere, you know), and it represents Silas’ swallowing troubles even more than his feeding tube does.

  A few years ago in a therapist’s office, I met a mom who also was lugging around a DeVilbiss suction machine. I was ready for her to move in next door and become my new best friend. To my disappointment, she didn’t seem all that interested in sharing experiences with me. Maybe her life wasn’t as defined by that seven-pound piece of equipment as mine was ... and (at least on Silas’ sick days) still is.

  I’m thankful for whoever it was that invented Silas’ suction machine, as well as for the insurance that pays for it and our medical supply company that provides its interchangeable parts, but I’ll be even more thankful the day Silas is healthy enough that we can get rid of it entirely.

  I’m not sure if it’s bonfire material, but I wouldn’t mind trying.

  Choose This Day

  If you think of all the bacteria found in a human mouth and imagine all those germs going into someone’s lungs, you can understand why Silas used to get sick so often. When Silas was an infant, we actually needed to hook him up to his oxygen tank at home every time he caught a cold. It was a pain, but our only other choice was to take him into the hospital, where he risked catching RSV or an even more serious illness.

  As it was, we were in the hospital twice before Silas turned one (three times if you count his initial 41 days in the NICU). I already mentioned Silas’ first Christmas on the pediatric floor. (I’ll tell you this though: if your family has gone through a crisis and you haven’t had a chance to do any Christmas shopping for any of your kids, just end up in the Children’s Hospital. You’ll wake up Christmas morning with so many presents donated by complete strangers you’ll have to leave some behind because they won’t fit in your car.)

  Silas’ first Christmas in the hospital felt like a scary ordeal, but it was nothing compared to his hospitalization half a year later. It was July. We had just moved from the valley that very week. Scott had been hired for a new youth pastor position in Anchorage but hadn’t even officially started yet.

  Silas was on oxygen during the entire move (if you have to relocate while you have a sick infant hooked up to an oxygen tank, I also recommend you have some amazing church friends who are willing to help you out). Eventually we took Silas to the doctor, who must have thought Silas’ condition was fairly serious, because she sent us straight to the Children’s Hospital.

  At that point, hospitalizations seemed fairly routine. Silas had spent half of his life in the NICU, after all. I don’t remember being particularly worried or fearful as we drove Silas toward Providence. If anything, I was relieved this stint wasn’t over Christmas or any other major holiday.

  Silas’ third hospitalization started out smoothly. We drove ourselves to the hospital, which is a lot less stressful than taking an ambulance ride or flying in a med-evac jet. Because we were already living in Anchorage, Scott could take Nemo back home to sleep in his own bed. We didn’t have to eat hospital food because friends from our new church stopped by every morning with enough meals to get us through the entire day. The rooms on the Pediatric Intensive Care Unit were spacious, and I didn’t have to leave Silas at the end of the day. I could sleep right next to his crib.

  At the beginning, Silas’ health also seemed a lot better than it might have been. Scott and I both just figured Silas needed a little more oxygen than his tank at home could give him. A few days of extra O2, some nebulizer treatments, a couple steroids thrown in for good measure, and Silas should be just fine.

  We had no idea how close our son was to dying.

  Silas and I spent his first night at the hospital without event. By the second evening, Silas seemed a little more tired. His ribcage was tugging more than it usually did at home. His nurse came in and bumped his oxygen flow up a notch. Then another.

  Sometime around midnight, Silas’ fever spiked. His dull 101 temperature flew up to 103.8 within half an hour. At first I wasn’t too concerned. We were already in the pediatric ICU. Whatever care Silas needed would be available.

  But as quickly as his fever soared, Silas’ breathing also got worse. Before too long, Silas had a hose blowing extra oxygen at his face in addition to the oxygen he was already getting through his mask. Both of these machines were cranked up to their highest setting.

  I still remember the sound of Silas’ monitor as it beeped each time Silas’ oxygen levels dropped. It wasn’t the up-and-down kind of movement like we were used to either; it was a steady decline: 87… 85… 84… 82… Pretty soon it was the doctor, not the nurse, who came in to check on my son’s vitals. And then, after a few more ominous beeps, the doctor didn’t even pop in and out any more but planted herself firmly by Silas’ crib.

  Even in Silas’ earliest days in the NICU, I had never seen my son struggle like he did that night. Silas was working so hard to breathe that he was bending his legs with each exhalation to try to force the air out of his body. He was drenched with sweat from the effort. Even with my lack of medical training, I could tell Silas was going to wear himself out if things didn’t improve quickly.

  And then the doctor touched my shoulder and quietly told me I needed to decide whether to put Silas back on the ventilator.

  Or not.

  The fated moment had come. Scott and I understood fr
om his birth that Silas might not survive. Still, we pleaded with God that we would never have to make that decision of life or death ourselves.

  When the doctor asked me what I wanted to do, it was two in the morning. I called my husband.

  “You’d better wake up Nemo and get over here,” I said. “It’s time.”

  The Choice

  My husband and I are pro-life. We don’t just uphold the sanctity of life every few years when the time comes around to vote. Scott has served on the board of directors of two different pregnancy centers, and I’ve volunteered as a peer counselor and published several articles in pro-life magazines. You can see our commitment to the sanctity of life in our volunteer schedules, our financial donations, and even our family planning choices.

  Yet when Silas was about six months old, we had a discussion with his pediatrician and decided not to put Silas back on a ventilator if the need ever presented itself.

  The decision made sense at the time. The pulmonary specialist had already told us that unless Silas learned to swallow his drool, his lungs would be overrun by bacteria and he would die. It would only be a matter of time. Scott and I thought back on all of the medical trauma our son had already experienced. Faced with stark reality of his impending respiratory failure, we finally concluded that we’d rather release our son to heaven, where his healing would be immediate and complete, instead of using drastic measures to keep his body alive and only prolong the inevitable.

  Mercifully, our discussion with the pediatrician remained purely hypothetical for several months. Until the hospital pediatrician told me Silas needed the ventilator.

  By the time I called home, Silas’ oxygen saturation refused to rise above 80%. His lungs just weren’t working by themselves. As I heard Scott and a now very-awake Nemo coming down the hall to our room, I wondered if this little reunion was really going to be our family’s last time together on earth.

  Even though Scott and I had discussed this kind of scenario in full detail, both with Silas’ pediatrician and with each other, I was unprepared to make the decision final. What if Silas actually did die? Scott and I would have to live every day with that knowledge. Should we have fought more for him? Should we have given God another chance to work that miraculous healing we had hoped for in our son’s life?

  Would our marriage survive the grief of losing our child? Would we wake up one day and blame each other for Silas’ death? We did believe that Silas would be better off in heaven, but was our choice truly in Silas’ best interests? Or were we so exhausted from raising such a medically-fragile baby that we wanted to take the easy way out?

  What would the doctors think of us? And how would Nemo react once he was old enough to understand the decision his father and I had made in the wee morning hours one warm summer night?

  Most of all, I wanted to know how God expected us to respond. I had heard of Christians battling courts to keep their loved ones on life support indefinitely. Was that the kind of struggle every Christian was called to? Would other believers condemn us if we didn’t follow that kind of example?

  The closest guidance from Scripture we could think up was the Golden Rule. Scott and I wouldn’t want to be on life support indefinitely, but how could we presume to know what Silas would choose? How could we presume to take such a terrible decision into our own hands?

  I’d like to say that God spoke to us that night. How convenient if the Almighty showed up and gave us a glimpse of Silas today — a smart, hilarious, goofy five year-old who has now gone 355 days without catching pneumonia.

  But God didn’t show up for us. At least not in that way. Even the night chaplain we had gotten to know during Silas’ NICU days was at home in bed the time we needed his spiritual guidance the most. We tried paging him twice.

  I prayed God would show us what to do. I prayed God would keep us from making a horrible mistake that we would regret for the rest of our lives. I prayed God would understand why we just didn’t want to see Silas suffer week after week and month after month, why we didn’t want to subject our child to a lifetime of traumatic medical intervention. I prayed that, if this truly was the end, God would prepare little Nemo’s heart to say good-bye to the brother he adored.

  I didn’t once think to ask God to take the choice away from us. The doctor made it all sound so final. And Silas’ struggle to breathe left me no doubt that my son needed a ventilator or he would die.

  Scott and I didn’t even think to pray for option C, but that’s what God gave us anyway. While my husband and I were still wavering, while we were crossing our fingers hoping the chaplain we knew might show up and help us make this horrible decision, Silas’ fever went down.

  His breathing improved.

  Forty-five minutes later, Scott and Nemo kissed Silas good-night and headed back home, fully expecting to see him alive again in the morning.

  I suppose if Scott and I hadn’t wavered so much but had agreed from the get-go to use any measures to prolong our son’s life, we could look back on that time and feel something like heroes. Other parents might have been tempted to let their child die, but we held on unswervingly to our convictions that life is sacred, and look where Silas is now!

  But that is not our story. Our story was one of struggle, ambivalence, guilt, and uncertainty right up until the last minute. I still don’t know what course we would finally have chosen if God hadn’t intervened. Would I be here wondering if Silas would have recovered and astonished the medical community with all of the progress he made? Would I be shunned by my friends in the pro-life community because I didn’t fight harder to keep our child alive?

  We don’t get to know the what-ifs. This is one case in which I can say with conviction, Thank God Almighty for that.

  Brotherly Love

  “That’s sick!” Nemo’s friend shouted, appalled. “Your brother’s DROOLING!”

  I waited to see how Nemo would respond. He’s always been an extremely empathetic and protective big brother. I’ve often wondered if his first fistfight wouldn’t involve standing up to someone who makes fun of Silas’ condition.

  Even before Silas was born, Nemo adored him. Months before my due date, Nemo would pick up my shirt and rub my pregnant belly and “play” with baby Silas. Together he and I would sit on the floor and daydream about what life would be like after “Baby Di-Da” (as Nemo called him) came out of my tummy.

  Silas birth day was a horrible day. No other day in my life comes close in comparison. But there was a moment of absolute bliss. It was the moment when Nemo woke up in his playpen in the hospital and saw his brand-new brother. Nemo was emphatic that we let him hold Baby Di-Da. And so, if you go to my husband’s office today you’ll see a photo of Nemo sitting on Daddy’s lap and hugging his baby brother. Silas is rosy and pink and healthy. Nemo is wearing blue pajamas and beaming with joy and pride.

  Less than an hour after the photo was taken, Silas was rushed out of the delivery room to the sound of a code blue. Nemo sat on the hospital bed with me for at least an hour without even trying to get down. My legs were still numb from my epidural, so it’s not like I could have chased him around. Nemo’s calm itself bordered on the miraculous. (How many twenty-month-olds do you know who would sit that still for even ten minutes?)

  Nemo caught on pretty quickly that something was wrong. “Baby Di Da LOST!” he exclaimed. And so I told him that baby Silas was a little sick, and that the doctors were going to try to make him better. I don’t even want to describe what it was like telling Nemo baby Silas might not ever get better. Nemo just sat perfectly still, perfectly serious, absorbing as much as his twenty month-old mind could.

  For the next six weeks, Nemo lived over a hundred miles away from home, spent half of his days away from Mommy, ate cafeteria food, and only got to visit his beloved Baby Di-Da a handful of times. Nemo was on antibiotics for an infected toenail when I went into labor, and a few days later he developed a horrible stomach virus that had him throwing up eight or nine times an hour. But God wa
s with him. And us.

  The morning after Silas was born, Scott and I woke up in a strange hospital guest room, still exhausted from a three-day labor and not even sure if our baby had made it through the night. We woke up to the sound of Nemo singing Jesus Loves Me. It came out more like De-De-Ma-NeNo, but we knew what he was saying. And we knew Who put that melody into his heart.

  Nemo was born after a devastating miscarriage. His full name means “God gives comfort and peace.” During Silas’ stay in the NICU, Nemo certainly lived up to his calling.

  Today, Nemo is still the best brother I could have hoped for a boy like Silas. Just a few hours ago, shortly after overhearing the comment about how “sick” Silas’ drool was, I had to explain to Nemo’s friend why I was putting a tube into Silas’ stomach. He looked over at Nemo and wrinkled his noise. “That’s weird,” he told Nemo, and when my son didn’t respond, he prodded, “Isn’t it?”

  Nemo shrugged his shoulders, popped a grape into his mouth, looked at his friend, and replied, “No. That’s not weird.”

  I couldn’t have been prouder.

  And Then There Were Three

  Scott and I didn’t wait too long after our marriage before we started having kids. Three months after our wedding, I was pregnant. (In fact, because of our miscarriages, I went through two first trimesters, along with all the hormonal side-effects, during our first year of marriage.) After Nemo was born, we went right on to have Silas and probably would have headed straight to number three were it not for Silas’ extensive care and developmental delays.

  It seems kind of silly to me looking back, but we actually had a checklist to determine when we should start trying for our third child. First of all, it would be most convenient to get pregnant after Silas learned how to walk. It would also be easier if I wasn’t pregnant during Silas’ annual swallow study, an X-ray based test to see if his swallowing had improved. And, believe it or not, the suction machine was so heavy to lug everywhere that I wanted to be able to leave home without it before I started carrying around another child.