A Boy Named Silas: The First Five Years Page 4

  What our pediatrician didn’t understand was that going to church was more to us than just fulfilling a religious duty. It was connecting and fellowshipping with family members. The believers at Glennallen Chapel prayed for Silas and followed his progress since the day of his birth. We weren’t about to keep our son away from that kind of love and support.

  It was a very memorable day for me when I took Silas to church for the first time. I spent most of the service in a side room suctioning his throat or pouring breast milk down his G-tube, but I was nevertheless thrilled to have Silas there at Glennallen Chapel with me.

  During our first weeks out of the NICU, our friends did an amazing job trying to impart the holiday spirit. Carolers from the Bible college braved the negative twenty degree weather to bring us tidings of comfort and joy. A neighbor’s extended family — strangers to us at that point — and our church back in Washington sent us five or six boxes full of presents to put under our scrawny two-foot tree. A friend from the church appeared on our doorstep with a turkey and all the fixings to prepare a traditional Christmas dinner.

  You would think with all that love and all that support it would be easy for me to finally heave the big sigh of relief I had been holding in. After all, we were home. All four of us. Isn’t that what I had been waiting so impatiently for?

  Unfortunately, the fact that Silas was out of the NICU didn’t mean our trials were over.

  When Silas caught his first cold, I realized the gravity of our situation right away. We had just brought our medically-fragile baby home to a town that only had one medical clinic and not a single MD. The hospital was a four-hour drive away. Even though Providence was the last place I ever wanted to see again, I would have felt more comfortable if it had been a little closer to home. Winter was already upon us, and we could expect at least one or two major power outages in the coming months along with the windy, below-freezing Alaska temperatures.

  And so I put the turkey in the fridge and decorated our little Charlie Brown tree. But even as I unpacked our boxes of presents from around the country, I had this sickening foreboding that we would be spending Silas’ first Christmas back in Anchorage.

  Never before have I been so upset to have one of my premonitions proven right.

  Vision in the Shower

  Silas’ only diagnosis at the time of his NICU discharge was “hypotoxic ischemic encephalopathy.” In layman’s terms, Silas had widespread brain damage caused by a lack of oxygen.

  Cerebral palsy was a term that wasn’t attached officially to Silas’ medical records, but the neurologist told us to expect that diagnosis in the future barring something miraculous. (Proof of the miraculous: Silas does not have cerebral palsy and never did get that particular diagnosis.)

  Back then, however, I didn’t know what level of functioning to expect from my son. In fact, I didn’t know if he would survive at all. There was really only one word to describe my emotional state: exhausted. I was tired of pumping breast milk around the clock like some kind of dairy cow or human experiment. I was tired of suctioning Silas’ throat several times an hour to keep his airway clear. I was tired of all the paperwork and logistics to get Silas set up with the services he needed. At that time in my life, I really could have used a full-time secretary. (Now that I think about it, a full-time nurse and housecleaner would have been welcomed, too.)

  After Silas caught his first cold, Scott and I kept a close eye on him to see if he got any worse. I was still wrestling with the horrible fear of spending Christmas back at the hospital. I honestly didn’t know if I had the stamina for another stint at Providence.

  These were the thoughts going through my mind the day before Christmas Eve. I was in the shower, imagining what kind of Christmas it would be if we ended up back in Anchorage, wondering if any of our care for Silas would prove worthwhile in the end.

  I was washing my hair when I had a vision of Silas as an adult. He walked on his own without any limp or need for support. His body moved fluidly, not with the jerky, tight movements I associated with cerebral palsy. He wore a sharp suit and addressed a crowd of teenagers. Silas spoke freely and eloquently, without any speech impediment or even a single hint of disability.

  “The day I was born, the doctors said I’d be little more than a vegetable,” my adult son proclaimed, captivating his young audience with his candid, down-to-earth demeanor. “They told my mom I would probably never walk or talk.” I was spell-bound as I watched my handsome, capable son inspiring an entire auditorium.

  “I’m here because my mom believed in me,” Silas declared. “She never stopped praying for me, never stopped trusting that by God’s power I could rise above the expectations of all those experts and all those doctors. I’m here,” Silas concluded with finesse, “because my mom never gave up on me.”

  I have no idea if Silas will actually go on to become the inspirational speaker I imagined that day in the shower. In fact, I don’t think the vision was meant to show me the future as much as it was meant to encourage me to persevere in the present. Silas needed an advocate in the worst way possible. He needed a mommy who would pray boldly on his behalf and keep on expecting miracles in his life. He needed a mommy who would cherish him and fight for him to reach his full potential, even if his potential didn’t come close to matching that of the young man in my vision. He needed a mommy who would love and nurture him through a hundred hospital stays if necessary.

  I got out of the shower and vowed that by God’s grace I would be the kind of mommy my son needed me to be.

  Only six hours later, Silas and I were on our way back to the Children’s Hospital at Providence.

  I’d Wish the Same for You

  With all we went through during Silas’ early days, you might think I wouldn’t wish our experience on anyone else.

  Well, you’re wrong.

  Silas lived at home with us in Glennallen for only three weeks. The night before Christmas Eve, I watched Silas’ ribcage pull with each labored breath he took. Scott and I didn’t know what to do. If we took Silas to the Glennallen clinic, they would almost certainly order a med-evac. We were all trying to redefine our notion of family life. Christmas was hardly more than a day away. The last place any of us wanted to be was back at the Children’s Hospital.

  We finally decided that our son’s health took precedence over our own fight to regain any sense of normalcy. I was on the road to the clinic a few minutes later, with my gurgling, wheezing two-month old in the backseat.

  Watching the hour hand slowly mark the arrival of Christmas Eve shattered my illusions of emergency med-evacs in rural Alaska. It didn’t take long for the physician’s assistant to determine that Silas needed to go back to the Children’s Hospital, but it was two or three hours before the flight team arrived, and at least another hour before Silas and I were on the jet heading back to the city.

  Before the med-evac unit took Silas to the airport, they wanted to put an IV catheter into his arm. He didn’t need any intravenous medicine at the time, but they wanted to have it ready and in place in case of any emergencies in the air.

  I held Silas, who woke up to protest while the flight nurse poked around for his little collapsed veins, and realized that nothing I had experienced in the NICU compared to this heaviness and sorrow I now felt.

  For the past three weeks, Silas had been mine. I didn’t have to share him with the doctors or nurses. I was the one to wake up to give him his medicine at night. I was the one to change his diapers and pour milk down his tube. I was the one to carry him in and out of doctors’ appointments, sitting in the backseat of our car so that I could suction him when necessary.

  For three weeks, Silas had been in my care. He had been held and cradled and loved and rocked. And now he was going back to institutional life, where I could hold him if and when the nurse gave permission. As he cried faintly from the IV probe, I felt as though I had somehow betrayed him. I had just taken Silas out of a world of needles and monitors and pain — the only w
orld he had ever known until then. And now, I was holding him down while a nurse prodded underneath his flesh until one of his little veins finally cooperated.

  A few of my tears splashed onto Silas’ cheek.

  “Are you ok?” the nurse asked me.

  I nodded. For some reason, as everyone got Silas ready for the med-evac flight, I felt a strange peace. I remembered my premonition of spending Christmas in Anchorage and somehow felt like all was as it should be.

  Up until that point, everything we had experienced with Silas had been a trial, the greatest struggle either Scott or I had ever been forced to endure. But in the wee morning hours of this cold Christmas Eve, without even knowing that Silas and I would never return to Glennallen, I realized that what I was experiencing was truly a gift ... bittersweet, yes, but a gift nonetheless.

  What I experienced that Christmas Eve was the simultaneous understanding that I would do anything — even die — to protect my precious son, but that I was powerless to do anything but hold him while the nurse prodded away at his stubborn veins. As Silas’ mom, I had no other choice. I had no choice but to cuddle my son and watch his face scrunch up in painful protest. I had no choice but to get on that flight and take him back to the Children’s Hospital. It didn’t matter that my heart felt like one giant, gaping wound. It didn’t matter that it was Christmas Eve. It didn’t matter that my toddler would wake up in Glennallen to find that Mommy was far, far away.

  The only thing that mattered was that Silas needed me.

  I felt more like Silas’ mother in that single moment than I ever had before.

  And that is a feeling I would wish on any one of my friends.

  Then and Now

  I’m writing this after celebrating the summer solstice, and so much has changed besides just the weather when I compare this summer to Silas’ first Christmas.

  Five years ago, Silas spent a week back at the Children’s Hospital at Providence. He was diagnosed with a pneumonia-like condition known as roving atelectasis and had to be kept on oxygen support until New Year’s Eve. As the boys and I spent a great day romping around yesterday, I couldn’t help but think through about the stark contrasts of Silas’ first Christmas and the summer we’re enjoying so immensely right now.

  Yesterday, we spent most of the afternoon outside. When Silas was at Providence, I went seven days without stepping off the hospital premises. The day we took Silas home was the first day in a week that I breathed fresh air.

  Yesterday, Silas rode his tricycle all the way to the end of our street and back. Five years ago, I watched Silas with concern as he uncontrollably pedaled his feet in the air as he had a seizure in slow motion.

  Yesterday, Silas swatted away the mosquitoes that were constantly landing on his forehead. As a baby at Providence, Silas lay perfectly still and expressionless as a tech taped a dozen electric wires to his head for a brain scan.

  Yesterday, Silas ran down forest trails chasing squirrels and robins. Five years ago, Silas couldn’t breathe without being hooked up to a canula with an oxygen flow rate of three liters per minute, the highest possible setting.

  Yesterday, Silas swam from one end of the swimming pool to the other. During his hospital stay that first Christmas, he couldn’t even hold his head up by himself.

  Five years ago, I wish I would have known where Silas would be right now. I wish I could have heard him talking and laughing and telling knock-knock jokes. I wish I could have seen him dancing and singing VeggieTales songs. I wish I could have seen him running around outside, loving the outdoors. I wish I could go back in time and tell that young and worried mother, who spent an entire week without leaving her son’s hospital room, that things would get better.

  But there were still many more hurdles to cross in order to bring Silas to where he is today. In fact, the months following Silas’ hospitalization ended up being the darkest, most challenging I ever hope to experience. Was the destination worth it? Of course. But no one in our family got there without significant scars.

  Forged by Fire

  I’ve given up reading marriage books. Although a few have been helpful for me in my journey as a wife, too many seem to offer outlandish promises. Ten Easy Steps to the Perfect Marriage just doesn’t sit right with me for some reason.

  Scott and I both agree that this past year of marriage has blown all the previous ones out of the water. But I dare say that our marriage is strong today not because of a fool-proof step-bystep program, but because of the battle scars that we share.

  A year before Nemo was born, two back-toback miscarriages left us completely devastated. Just a few years later, Scott and I sat stunned in a delivery room as Silas was rushed out to the sound of a code blue. During our stay at Providence Hospital, we realized what so many older couples had told us previously: Marriage takes work. I can’t say that our time in the NICU was marked with any magical kind of romance. As I recall, we were both barely surviving. Sleepdeprived and stressed beyond measure, we had to make a conscious effort to stay close. But we did, by God’s grace.

  You’d think it would only get easier from there, but it didn’t. Our first months with Silas home were riddled with fights and disagreements over feeding methods, formula options, and tube changes. After our son’s hospital stay over that first Christmas, Scott and I decided Glennallen was too remote, and we moved into a one-bedroom apartment in Palmer. I found myself the wife of a jobless, former college student who was battling with severe anxiety and depression. Scott’s lifetime goal of missionary work in Siberia was destroyed in one blow, along with our dreams of a healthy, vibrant child.

  And our marriage was in shambles.

  We spent months in this marital stupor. The worst part for me was that I felt so hopeless to change anything. It seemed like I was losing my husband and partner, and even though Scott’s loyalty to his family never wavered, he had sunk too deep into despair to really relate to us on any significant level. During the months we lived in the valley, we had no real church home, no close friends, and the two of us couldn’t find strength or encouragement from one another like we had before.

  Today, someone looking in on our family would see a husband and wife who love their kids and love one another. Even now, we are accused of being sickeningly sappy. (Thankfully our boys aren’t old enough to care yet.) Scott is my closest friend. We seem to have conquered the art of compromise in a beautiful way, and our communication is marked with more respect and mutual understanding than ever before.

  Looking in on us, you might be tempted to think that we’re “doing things right.” You might assume our closeness is the result of some system or other.

  If so, you’re badly mistaken.

  I am close to my husband because we have walked through fire together. We have sunk to deeper levels of despair than I thought Christians should. We have sobbed on each other’s shoulders, and we have also gone months without possessing the emotional capacity to mourn together at all. We have lived in the same house with horrific burdens that we shouldered alone, so deep were we in our individual sorrow. Even after our life circumstances changed for the better, it took years for our marriage to be wholly healed from those few months spent in Palmer.

  Yes, Scott and I enjoy a significant level of romance, companionship, and love. But I don’t take the credit for that. Our marriage was made into what it is today by traveling through what felt quite frankly like the valley of the shadow of death. Our story is not the happy, lovey-dovey, fairy-tale romance you might expect if you were to look at us now. And the journey, quite honestly, has left us both brutally scarred. But we share the same scars, which have bound our hearts closer together than I could have ever imagined possible.

  What Would You Choose?

  I’ve been known to have some pretty strange dreams. My most vivid (and disturbing) dream regarding Silas and his condition came to me one night when my son was about four months old.

  Up until that time, I prayed for an instantaneous and thorough healing, b
ut it didn’t seem to be coming. Our son was drugged up with anti-seizure medicine that impoverished him of any emotion or expression whatsoever. His face and eyes remained vacant day in and day out. He showed no sign of recognizing his family members and didn’t care if he was held or not. My son was so “not there” I sometimes wondered if there was a little boy at all trapped inside his sickly little body.

  One night, while Silas was sleeping near me with an apnea monitor wrapped around his chest, I dreamed Scott came home with tremendous news: “They found a cure for Silas! I have to take him to the hospital right away.”

  I handed my son over to his daddy and waited for this miraculous healing to occur. Scott came home a short time later with a chubby, smiling, cooing little baby.

  “What’s that?” I’m sure even in my sleep my body shuddered.

  “This is our son.”

  I wanted to throw up. “That’s not my baby. Where is Silas?”

  “This is Silas,” Scott assured me.

  “What happened to him?”

  “They cloned him,” Scott answered, “and then made him the right age. See? Isn’t he cute?”

  “But where is Silas?” Then suddenly Scott understood as well. As occurs so easily in dreams, I was able to transport to the hospital and saw Silas — the real Silas this time — discarded and withering away in a dirty bathroom trash bin.

  “I need my baby!” I didn’t look back at the “other” Silas. He wasn’t mine. I didn’t have a four month-old who was chubby and fat and smiley. My four month-old took horrible medicine that suppressed his personality and kept him from relating to us at all. My four month-old had lungs that rattled and rasped so it sometimes sounded like he had bubble juice jostling around in his chest. My four month-old had a two-inch scar across his abdomen and a plastic tube sticking out of his belly.