A Boy Named Silas: The First Five Years Page 2

  Did God have plans for Silas to grow into a high-functioning, bright, intelligent, and hilariously funny little boy in spite of his setbacks? Yes. Would Silas have gotten so far without the prayers of so many faithful believers?

  I don’t think so. In fact, I know he wouldn’t have. It was prayer that truly changed Silas’ history. I am humbled to think of how many of these prayers came from churches and individuals who didn’t even know us personally. There were many days in the NICU when prayer was too much of an uphill battle for me. I held on to the assurance others were praying for my son and for our family.

  The fact that God already knows the future doesn’t give us the excuse to be wishy-washy or fatalistic in our prayers. Don’t ask me how it works, because I don’t know. All I know is that because so many people prayed for my little boy five years ago, Silas has grown into a thriving jewel, with more personality packed into his little 38-pound body than I could ever describe in words. His history could have been one of severe disability, vegetative brain damage, or premature death. By the prayers of others, it wasn’t.

  Who will change history in the years to come by continuing to pray for this amazing child?

  It Is Well

  The other day I asked Silas what he wanted to be when he grew up. He’s at that stage where he takes everything literally, so he promptly answered, “A man.”

  A few minutes later, Silas looked at me and asked in all seriousness, “What kind of man will I be?”

  And so I told him what I know in my heart to be true: “You will be a man who leads others to worship Jesus.”

  We named our son after Silas from the Bible, who sang hymns while he was imprisoned until an earthquake loosed his chains. My son wasn’t very active in his preborn days, but if he heard music he would dance around, kicking my ribs in the process. Even before he was born, I knew Silas was destined to lead others in worship. But I had no idea I would be the first person to experience this particular anointing of his.

  For the first few weeks he spent in the NICU, Silas was only a step above comatose. But I remembered how musically inclined he had been in the womb, and I sang to him. A lot. I had no proof he even heard me, but I kept it up. In this way, I entered into the deliberate spiritual discipline of worship in spite of my situation.

  Until the day the songs in my heart ran completely dry. After two weeks in the NICU, Silas was just as unresponsive as ever. He didn’t open his eyes, he didn’t smile, he didn’t even cry. To top it off, my family was displaced, there was no discharge date in sight, my toddler Nemo was living in a hospital and was coming down with one horrific stomach virus after another. I was anemic, recovering from childbirth, and staying up late with Silas in the NICU only to wake up early with Nemo in the morning.

  Silas’ prognosis didn’t give us much to cling to either. Every day doctors came by Silas’ little crib and prattled on about things like swallowing dysfunction, brain stem damage, and a very high likelihood of cerebral palsy. What did I have to sing about?

  With all that going on, the ditties from the Christian radio station seemed pathetically inappropriate to address the deep, suffocating pain in my soul. So I reached back into the recesses of my memory to the old, old hymns, trying to think of something to sing to my little boy.

  When peace like a river attendeth my way, when sorrows like sea billows roll ...

  Sorrows like sea billows? Now these were words I could relate to.

  As I continued to sing, hope swelled within me. It wasn’t a hope for Silas’ healing. Not hope for a speedy discharge. It wasn’t hope for anything at all. It was that deep-seated, anchor-for-the-soul kind of hope that you know will somehow endure even if your circumstances never improve on this side of heaven.

  And so I cuddled my little listless baby, tried not to get too tangled in all his wires and cords, and sang with newfound clarity and conviction: Whatever my lot, Thou hast taught me to say, “It is well, it is well with my soul.”

  May you rest in that hope today. In spite of the heartaches, the anxieties, the disappointments that threaten to ruin your peace of mind, nevertheless — through Christ — may it be well with your soul.

  Epidural ... Please!!!

  Before I delivered Silas’ big brother, Nemo, I arrived at the hospital — along with my three-page birth plan — and felt wonderfully prepared for his delivery. Of course, I was going to do it naturally. No epidural for me, thank you very much.

  Until this bag of something called pitocin was hung up by my bedside and began dripping into my IV line. Just tear up that birth plan, nurse, and bring in the anesthesiologist. Stat.

  When it came time for my second delivery, I went in with the exact same expectations as I had with my first. No epidural. Seventy-something hours later, exhausted from three long days (and nights) of labor, I begged for that epidural and counted down the minutes until my pain would end.

  In the Bible, trials in life are often compared to the pain of childbirth. Jesus parallels the tribulation of the last days to a woman in labor, who “has pain because her time has come; but when her baby is born she forgets the anguish because of her joy that a child has been born into the world” (John 16:21).

  During our stay in the NICU, I realized logically that the trial couldn’t last forever. I hoped for the day when I could also “forget my anguish” for the joy of having Silas home with me. Many times I thought about the verse in Psalms, which talks about God settling a “barren women in her home as a happy mother of children” (113:9) and hoped that one day I might experience this precious miracle.

  But until then, I had labor pains. I was beyond exhausted. Silas’ condition wasn’t improving in any hurry. Even once he got off the ventilator, he needed extra oxygen support to breathe. I finally heard him cry at day sixteen, but it was a faint little pathetic noise.

  The neurologist was talking about seizures and abnormal brain scans. The surgeon was talking about putting in a permanent feeding tube. The nurses were talking about how often they had to suction Silas’ secretions because he had no swallowing function whatsoever. And, between ourselves, Scott and I were wondering if we would ever have to make that horrible decision to pull the plug or not.

  It was during these endless weeks I began to think about my labor. How quickly I opted for the epidural when things got too difficult to manage. If I didn’t get the epidural, Silas still would have been born. The labor wouldn’t have lasted forever. But that’s not what I was thinking about at the time. I just wanted the pain to stop right then.

  While Silas was in the NICU, I wanted something to make the gut-wrenching emotions just end. Given the choice, I probably would have put myself in a medically-induced coma until the ordeal was over. Hitherto, when things got too difficult, I found ways to pull the covers up over my head (either figuratively or literally), telling the world to wake me up when whatever trial I was hiding from was all over.

  But there was no emotional epidural available for me at the Children’s Hospital. There was no blanket to hide under, no coma to slip into until my son was well. Each day I had to get up, face the fact that my severely braindamaged child was on life support for an indefinite amount of time, accept the reality that I had a husband and a toddler to interact with as best as I could, and keep on putting one foot in front of the other to make it through the day.

  Silas is home now. Our son, over whom we agonized so much when he was a baby, can now walk, talk, dress himself, read, and even recite his multiplication tables.

  But the pain is still there. Just like I still have my Csection scar from my oldest son Nemo’s birth, I still carry around a deep sadness in my heart. Silas’ birth did something permanent to my worldview. It made me realize that my family is not immune from horrors and heartbreaks. The innocent naiveté and blind optimism I once held are gone.

  I am happy Silas is home. I am thankful he is thriving. But, unlike the new mother that Jesus talks about in John 16, I haven’t yet forgotten the pain. I haven’t forgotten the anguish.

  When we were in the NICU, if you asked me when the sadness would end I would have told you, “When Silas is home and when I’m sure he will be able to function and thrive as an able bodied individual.” That day — for the most part — has come and gone. Silas’ cognitive abilities are beyond age-appropriate. He still has a way to go to learn to eat by mouth, but we expect Silas to grow into an independent and productive adult, even if some of the feeding issues remain.

  I thought I would rejoice to see this day, but the heaviness is still there. When will it go away? Maybe with more time. But I’ve come to accept my sorrow might not be healed until Jesus returns to restore all things.

  It’s a good thing emotional epidurals aren’t viable options, or we would probably all be tempted to tune out when things get hard. But since the pain is real, and at times unavoidable, let us not run and try to hide, but walk through our trials in the power of Christ, looking forward to His glorious appearing when He comes and makes all things new.

  Identity Crisis

  When Silas was born, my entire identity was wrapped up in being a mom. And not just any type of mom. I was the family-valued, homeschool oriented, whole-foods cooking, conservative Christian mom type. My worth came from the fact that my toddler didn’t watch television or movies, didn’t eat candy, had never heard a swear word, had memorized a dozen Bible verses, and knew the Greek alphabet by the time he was eighteen months old.

  Along came Silas. With our tiny little newborn in the hospital, I couldn’t spend every moment of my day with Nemo anymore. Our preschool program (rigorous for a one-year-old) was postponed indefinitely. Nemo’s carefully screened, zealously organic diet was replaced with whatever the cafeteria was serving on a given day. And (horror of horrors!) while I spent hours in the NICU with his baby brother, Nemo sat with Daddy in the guest house watching cartoons on cable.

  Thankfully, I didn’t stress out too much about these changes. With all of Silas’ medical and cognitive issues, the normal anxieties I usually dwelt on didn’t matter anymore. My baby had massive cranial hemorrhages and all kinds of abnormal brain waves and seizure activity. What did it matter if his twenty-month old brother recognized the word cat and knew the names of all the colors?

  There are some identity shifts that are painful, but ultimately beneficial. Having a braindamaged child certainly helped soften my perfectionist Mommy edges. It wasn’t a process I was happy to go through, I’d like to mention, but looking back, I’m glad I did.

  As a brand-new mother, I was obsessed with behavior control. I acted on the belief that if I could just control their environment staunchly enough, I could sanctify my kids. Did you catch that? I — a mere mortal, a human, a sinner — thought I could sanctify my kids.

  Yes, I can hear some of you chuckling already.

  When I only had Nemo, I have to tell you my parenting philosophy was working out pretty well. I didn’t worry about influences from TV because we didn’t have one. I didn’t worry about peer pressure because I never left Nemo alone with anybody. He was always with me, and I was always there, controlling and subtly manipulating his environment, as if he were a scientific specimen whose spirit I could save from contamination by my own zeal. To my shame, I also admit I often looked down on parents whose family standards and parental expectations weren’t as militant as mine.

  Once Silas was born, I discovered I wasn’t in control. I couldn’t make Silas get well. All I could do was plead with the Almighty for my son’s healing. Somehow, that sense of helplessness and dependence on God carried over into other aspects of my parenting. I learned that, just like I couldn’t heal Silas, I also couldn’t make my children turn into zealous, Spirit-filled Christians. All I could do was pray for their sanctification and raise them the best way I knew how.

  Were you to look at me today, you might not see the differences, but they’re there all the same. I still don’t let my kids watch certain movies other kids their age have seen. But I don’t freak out if we pass a PG-13 film playing on the Costco big screens, as if fleeting exposure to contrary worldviews spells spiritual devastation for my family. We still don’t participate in the ghosts and witches aspects of Halloween, but I don’t avoid taking my kids to grocery stores every October, as if seeing a picture of a witch as youngsters means they will turn to the occult when they’re teens.

  In the past five years, I’ve also found myself growing less judgmental of other parents. Before Silas was born I looked down on any mother who didn’t breastfeed, who bought store-made baby food, or who (horror of horrors!) fed her toddlers fast food. Well, after eating in the cafeteria for six weeks, I concluded there were just more important things to life than an organic diet. And when my breast milk gave Silas colic at six months, I threw up my hands (though not without tears) and started giving him the bottles of formula that to this day still provide for all of his nutritional needs. At the suggestion of his feeding therapist, I also fed him lollipops when he was still a baby. Before Silas was born, if I had seen a mom with formula and lollipops in her diaper bag, I would have written her off as a classic bad mom. Having Silas made me rethink everything I thought I knew about raising kids the “right” way.

  I know I still have lots of sharp edges in my parenting the Lord wants to smooth out, but I am encouraged by the work He’s already done. I just hope it doesn’t take another family catastrophe to show me the areas where I still need a lot of help.

  Still Laughing

  We’re not too into Valentine’s Day, but every few Februarys, Scott and I pull out the box that has all our old love letters in it. Aside from being purely embarrassing (I could never be that sappy anymore!), it is really fun. In danger of sounding trite, I would say during this season of our marriage I am falling in love with my husband all over again.

  One thing I appreciate about Scott more than just about any other is his sense of humor. From the very first phone conversation we ever had, we have been laughing like crazy.

  If you knew Scott (or me for that matter), it would come as no surprise to you that our boys are all goofy in their own silly ways. Being able to laugh (and having something to laugh about) is truly a gift from God. Because of our oldest son Nemo’s sweet sense of humor, Scott and I ended up with quite a few funny memories from when Silas was in the NlCU at Providence.

  When Silas was born, Nemo already had quite an expressive vocabulary and absolutely no concept of volume control. Once in a cafeteria full of people, Nemo noticed the huge stained-glass picture of Jesus hanging two stories above us. He pointed and shouted, “I SEE JESUS UP ... AIR!!!” Scott and I jokingly wondered if we were about to experience the rapture.

  We ended up being in the hospital over Halloween. Now Nemo, like most one year-olds, had certain ways to pronounce words that only his parents could understand. Everyone around us thought our son was pointing at the two women in glittery wigs and shouting “Faggy pee-pee!” (We were the only ones who knew he was actually saying “Funny people.”)

  My dad came to visit us for a few days when Silas got his G-tube surgery at three weeks old. Nemo was so excited when we told him Scott was going to pick up “Bampa” from the airport. Nemo was disappointed to the point of tears, however, when he realized that Scott had no intentions of actually picking Grandpa up off the floor of the Providence Guest House.

  Our time in the NICU started a wonderful routine. Each night before bed, Scott and I shared all the funny things Nemo did that day. We never made a conscious decision to do so, but it was a true blessing to end our days by dwelling on these sweet, small pleasures. Nemo had such a fun, fresh way of interpreting everything going on around him, and it brought us the perfect reprieve from our constant stress and anxiety to share the many ways he had made us smile.

  Five years later, after eight years of marriage, we’re still smiling...

  And still laughing like crazy.

  What On Earth Is That Smell?

  I never knew having a kid with a G-tube would be such an olfactory experience.

  First off, there’s the formula. It smells sweet and sticky and actually quite a bit like a diet shake. It is still the primary source of Silas’ nutritional and caloric needs. He gets so much of it that often his breath has a vanilla tinge to it.

  I have to admit, I kind of like the vanilla breath. At least it’s better than some of the other smells. Silas has a particular odor when he gets really sick. Even his urine smells worse. And every once in a while I get a whiff of some kind of antiseptic-mixed-with-blood-and-body-fluids kind of scent that takes me right back to our NICU days. It’s no wonder so many people hate the smell of hospitals.

  Then there’s the digestive issues, or the “gastro stuff,” as I lovingly call it. Silas doesn’t have any diagnosed gut disorders, but he has a lot of intestinal sensitivities. (Remember what Donkey says in Shrek? ... “Man, I had some strong gasses eeking out of my butt that day.” Yup. That’s my son.)

  Most of the time, I can take all these strange smells in stride. That wasn’t always the case, I’m sorry to admit.

  Since Silas wasn’t showing any swallowing ability, the doctors put in a permanent feeding tube when he was three weeks old. Basically, they put a hole directly into Silas’ stomach and stitched a rubber tube in place. They also closed the top of his esophagus in a kind of knot to keep him from refluxing so badly.

  Other than turning a ghastly shade of bluishgrey coming off his anesthesia, Silas did just fine during his surgery. I even got to hold him that same day. The only problem was the tube going into his stomach had to stay open for several days. I won’t go into details, but the smell was just gross. (Remember the tube was connected directly to his digestive tract.)