A Boy Named Silas: The First Five Years Page 7

  Some people pride themselves on pushing the envelope when it comes to societal norms. I’ve been known to wear white shoes before Memorial Day, and I let the boys sleep in their day clothes instead of bothering with pajamas, but that’s probably about as unconventional as I get.

  Like so many of us, the church also is bogged down with its own set of normal and expected behavior: Pastors should eat dinner at the table and lead in family devotions. Church elders must vote Republican. Sunday school teachers must not smoke or swear, even in their own homes. Preacher kids must be the first to volunteer to pray in youth group. And pastors’ wives must be musical and highly gifted in children’s ministry.

  Says who? The same people who say that Smarties don’t go with mustard, I guess.

  I think the church could learn a little bit from my preschooler. I’m not saying we all need to smother our next serving of cheesecake in horseradish sauce, or sprinkle cinnamon on lasagna. But what if we reconsidered all of our preconceived ideas about what things are or aren’t “palatable” in light of the true teachings of Scripture? Where in the Bible does it say that Christians must only elect individuals of the same faith? Where does it say that certain holidays with religious overtones are all right to celebrate, while others aren’t? Where does it say that Christians are obligated to strong-arm the government into affirming that their way is the right way?

  When Silas enjoys his Smarties and mustard sauce, he’s not thinking about what is acceptable for an evangelical pastor’s kid. He’s not thinking about what every other preschooler in the country is eating, or what his parents or Sunday school teachers have told him is normal. He’s enjoying the freedom he has as a child of God to choose what he does and doesn’t want to put on his taste buds. And even if no one else in the family likes the same food combination, he’s not about to tell us all what we should or shouldn’t eat, either.

  I think the church would come across as a lot more inviting — and a lot less hypocritical — if we all tried to do the same.

  The Art of Play

  We’ve opted to homeschool our kids, a decision that I thank God for nearly every day.

  The boys and I have been dabbling in homeschool since my oldest was a year and half old. When Nemo was a toddler, we set aside thirty-minute intervals each day for learning colors, numbers, shapes, and letters in a very structured, very scholarly environment. Then Silas came along, and we were introduced to a whole platoon of developmental specialists who had all kinds of creative and silly ways to make learning fun.

  I shudder to think what my homeschooling would look like today if these therapists and specialists hadn’t taught me, quite simply, how to play with my kids.

  When Nemo and I started homeschool (he was so young I had to put him in the high chair to keep him in one place), it was all business. Laughter and silliness were counter-productive to learning. After all, I thought, my son can’t drop his pencil and laugh repeatedly in sixteen years when he goes in to take the SAT.

  There have been times when Silas has had four therapy appointments a week. From the beginning, his therapists amazed me with their playfulness and flexibility. If Silas needed help articulating a certain sound, they turned it into a game that had him laughing like crazy. If Silas got bored with what they were doing, they followed his cues and chose something else. Even now, when Silas’ therapy sessions involve more actual labor, Silas still has the impression that the therapists are there to play, not work, with him. When he starts to get too goofy for much real progress to take place, his therapists just smile and go with it, and after a minute or two, they gently nudge him back to more serious matters.

  Sometimes in Silas’ early days, I’d watch these therapists and wish that they were a little more “down to business.” After all, learning was a serious ordeal in our household. But I started to see how effective they were and even picked up on some of their tricks. When I was teaching our oldest to read, it was all cut and dry with no room for play. When Silas began to show an interest in reading, we made it fun and interesting. Believe it or not, we actually laughed. A lot.

  Now, our homeschool days are filled with games, recreation, and imaginative play. I sometimes look at myself as I wrestle with all three of my kids on the floor (during “school” time, no less) and wonder what happened to that pinch-faced, iron-fisted schoolmistress I once was. How did I change from such a serious, pragmatic instructor to a homeschooling mom whose educational philosophy is If you can’t make it fun to learn, should you really be teaching it at all?

  The answer, quite simply, is an amazing little boy named Silas. Thank you, my precious little Fuster-Buster, for teaching me the art of play.

  What I Forgot to Say

  When Silas was three, I had the opportunity to speak at my very first women’s retreat. It was sponsored by our church back in Glennallen, the church we had been attending when Silas was born.

  I was nervous (in a good way), and very excited. Years earlier, Silas and I were med-evaced out of Glennallen the day before Christmas. When I boarded the jet with my sick little baby, I had no idea I was leaving Glennallen for good. I never did have the chance to go back, so seeing women from my former church was a special experience.

  During my testimony, I recounted Silas’ birth story, the struggles we went through after bringing him home from the hospital, the horrific valley we just barely survived after being dislocated from our home and support base. Still, I tried to emphasize how many miracles God had worked in Silas’ life instead of dwelling only on the horrible details of that first year.

  It wasn’t until I was halfway back to Anchorage that I realized I had entirely missed the last point in my notes.

  I sometimes get the impression that people look at me and only see the mom of a medicallyneedy child. It’s like they imagine I must wake up every morning and think to myself, I have a tube-fed son to take care of today. Better get dressed.

  Sometimes people say things to me like, “You must be so busy with those little boys ... and with Silas.” What do they think? That I spend every waking moment thinking about and dealing with my son’s medical issues?

  To some degree, admittedly, these people might be right. I started to calculate, and I spend several hours each day doing something medical or other: hooking up Silas’ feeding tube for three meals and two snacks a day, burping his stomach out so he doesn’t get gas, holding a mask to his face while he goes through his breathing routine. Then he’s got several extra hours each week set aside for therapy and doctor’s appointments. So, I have to admit that if you crunch the numbers, it sounds like a lot.

  But then again, I probably spend the same amount of time preparing snacks and meals for my two “normal” eaters every day. And they have art lessons and play dates and Awana to keep track of, just like Silas has a regular therapy schedule to maintain. I have to check in with Nemo’s homeschool advisor every month, just like I have to meet with Silas’ care providers.

  So, to spell it out, I am not defined by my son’s condition. Those two hours or so a day I spend on medically-necessary care for Silas are interspersed between moments I spend reading to all three of the kids, or playing board games, or teaching math, or writing emails, or trying to wash my hair and hoping that no one sticks a fork in the light socket while I’m bathing.

  Silas is a treasure, a bright and silly rainbow in my life. I don’t look at him and see a sick kid with a feeding tube. I see an adorable boy in glasses, whose favorite Christmas song is Go Tell it on the Mountain, whose loftiest ambition is to learn to play the tuba like Larry the Cucumber, who sometimes loves and other times pesters his little brother to death, and whose only thought each morning is to find the dog so that he can give him a great big hug.

  My life probably looks different than yours, and some of that is because of Silas’ health concerns. We haven’t left the state since he was born. An unexpected trip to the ER just the other day confirmed that Silas could be hospitalized at any time. And when Silas gets sick, h
is brothers and I really do have to put life on hold to some degree until he gets better. Still, all that doesn’t mean that Silas’ medical condition runs our lives.

  Besides, even if it did, I wouldn’t have it any other way.

  The Kitchen Miracle

  We had such an on-the-go summer when Silas was four that I ended up instituting a new family rule: Everyone had to drink half a cup of water before dinner. Now, by everyone, I mean Nemo (who was getting dizzy from playing outside so much without drinking enough fluids) and Timmy (who really just asked for a cup of water because he wanted to feel like his big brother).

  But one night when Silas asked for a cup of water, I let him have one as well. I only filled it about half an inch high; two ounces would be my top guess.

  I was expecting Silas to do what he usually did: put his lips around the cup and maybe smack them around a little. If he got water in his mouth and sputtered it up, I knew it wouldn’t be the end of the world. But instead of the sounds of choking and coughing that I’d gotten used to, I heard something totally new and unexpected:

  Gulp.

  He’s getting a lot bolder, I thought to myself. I’ll have to give him less water next time. Attributing the sound to pure, random luck, I reached to take his drink away before Silas got too confident in his own abilities. But he held the cup to his mouth, and instead of gagging or gurgling, I heard it again:

  Gulp. Gulp. Gulp.

  Three big ones, right in a row, a lot like the exaggerated sound of a kid in a movie who knows he’s in deep trouble. And then I realized, My kid just drank his first real sips of water. I was quick to rush to Facebook, knowing that everyone (Daddy included) would be ecstatic to hear the news: Silas is drinking water! And in my status update I made some off-the-cuff comment about needing to go into my room to cry. Tears of joy?

  Nope, not that time.

  Logically, I realized this was terrific news. Silas’ therapists had been working with his swallowing and had even hinted that we might start feeding him at home before too long. To hear four tremendous gulps in my kitchen that night should have lifted me up to seventh heaven. But I found my feet remained firmly rooted on the dirty, grimy earth.

  Silas’ first real drink only reminded me how much my child has suffered. (Most babies get the whole swallowing thing within the first few minutes out of the womb. My son was four, and he still couldn’t just take a drink whenever he felt like it.)

  In my mind, I recognized that our little kitchen miracle showed the hand of God in Silas’ life. God didn’t “owe it” to our family to ever give Silas the ability to swallow. And if He should have so chosen, God could have waited another four years, or fourteen, or forty, and He still would have been the loving, caring, healing Great Physician whose hand had been on Silas from the very beginning.

  Analytically, I rejoiced and thanked God for those loud, messy gulps. I praised God because He didn’t forget Silas, and the full and total healing I once dreamed for my son now seemed closer to being realized than ever before.

  But the memories of Silas crying because his brothers could eat and he couldn’t, the agony of watching Silas trying to sneak a Cheerio that Timmy had dropped, the guilt of having the babysitter call because Silas started choking on a forbidden piece of popcorn ... these scars were still just as real as they were before I witnessed Silas’ little miracle in the kitchen.

  I knew God hadn’t finished His redemptive plans for Silas. I believed with all my strength even greater healing was to come for my child, and for the first time in quite a while I had both documented and anecdotal evidence suggesting the same.

  But how does a Mommy’s heart find healing? Were a few small sips of water supposed to erase several year’s worth of pain? Even once we started feeding Silas at home, would that make me forget how hard he cried the day his baby brother started eating solid food, while Silas could only watch?

  Would Silas’ learning how to swallow erase my memories of him pleading, “What do I get to have?” each and every time I served his brothers their dinner? Would I forget how heart-wrenching it was to hear Silas daydream about heaven and how he’d finally get to eat a goldfish cracker once he was dead? If Silas ever completely outgrows his feeding tube, will that mean I’ll no longer remember the turmoil of having to rebuke my own son for picking up a crumb and trying his hardest to swallow it but instead only choking?

  It’s possible. But that would take yet another miracle.

  My Little Firecracker

  When we brought Silas home as an infant, the biggest reason he wasn’t categorized as vegetative was that he could still make eye contact. He would watch me, but even then he wouldn’t show any kind of recognition. I didn’t know it at the time, but one major contributor to Silas’ apparent stupor was that his facial muscles were so underdeveloped he couldn’t change his expressions. Even when he was two years old, Silas’ therapists were still trying to teach his mouth muscles how to smile.

  The other reason that Silas was so ‘‘not-there,” by almost all appearances, was because of a horrible anti-seizure medicine we had to give him called phenobarbital. In my lay understanding of the drug, it inhibits the kind of crazy over-firing of neuron circuits in the brain associated with seizures by basically impeding all neurological functioning. Now, I know this isn’t quite the way it worked, but it sure seemed that way to us.

  After a few rounds in the ring with Silas’ neurologist, I finally got my son off of the drug when he was six or seven months old. It was then that we started to meet the “real” Silas. And that little boy’s personality has been blooming like crazy ever since.

  Once Silas was weaned off his seizure medicine, he still couldn’t smile, but he could show his excitement in other ways. We used to call him “Happy Feet,” because instead of laughing like a typical baby, Silas would kick his feet like his life depended on it. It took Silas quite a while to learn how to laugh, so we were thrilled that he found alternative ways to express joy. When he finally gained enough lung capacity for it, Silas’ early laughs would have sounded like a kid being tortured to anyone else but us. His giggle started as a funny grunt, and invariably ended in a coughing fit, but Scott and I loved to make our little guy crack up nevertheless.

  In spite of his physical setbacks, Silas certainly figured out how to play games at an early age. Silas’ first word wasn’t “Mom” or “Dad” or ‘‘Nemo;” it was “TUG,” grunted loudly during a game of toddler tug-of-war with his brother. Whenever his therapists brought out bubbles (or guggles, as Silas used to call them), Silas would kick his legs and laugh so hard I’d have to spend the next five minutes of our therapy session suctioning out his throat.

  Today, you would be hard pressed to find a boy sillier than Silas. He is the king of knockknock jokes, and even though he doesn’t need his throat suctioned out anymore, he still kicks his feet if you get him laughing hard enough. He’s come up with so many one-liners that once when a group of girlfriends and I got together for a game night, we spent the first twenty minutes swapping silly Silas stories. Everyone had a few to share.

  Silas still loves games today, just like he did as an infant getting weaned off his seizure meds. He and his baby brother Timmy keep themselves entertained with hilarious, slap-stick kind of humor, while Silas and Nemo come up with verbal repartees silly enough to give Shakespeare a run for his money. And of course, there is a ton of foot-kicking and a decent amount of coughing that takes place as well. Whenever Silas and I go out alone (which lately has only happened for ear-tube surgery and a few non-serious trips to the ER), I bring along as many cards and small board games as will fit in my bag to help pass the time. For Silas, it’s like winning the lottery.

  Five years ago, it seemed as though our son had no personality whatsoever. Now, our house is barely big enough to hold all of Silas, but that’s not just from his cough-inducing giggles or his love for jokes and games. Silas is truly the most passionate individual I know. What began a year or two ago as a tendency to fixate on
one particular thing has now blossomed into a type of zeal and passion that only a few blessed individuals ever really achieve. When Silas finds something he loves, whether it’s the Star Wars series, or the Lion King movie, or the Larryboy chapter books he adores, he will allow his passion to carry him into places most adults would fear to venture, lest they lose their respectful selves forever.

  When Silas first learned to walk (a miracle in its own right) I had to be very careful whenever I took him to the store. Silas was in an Elmo phase at the time, and any time he saw a picture of that red, furry monster, he would go to it. He didn’t run away from me like a defiant toddler; he just allowed himself to be pulled, trancelike, towards the object of his devotion until he was three aisles away and I finally realized I had lost my son (once again) to that red fur ball with annoying grammar tendencies.

  I manage to endure these kinds of nuisances because I recognize that Silas possesses a zeal for life that puts me, quite seriously, to shame. He is completely uninhibited (which admittedly made for some frustrating trips to Wal-Mart), but the notable thing about my son is that he never, ever loves something partially. I enjoy thinking about how this gift will manifest itself in the future.

  Silas won’t be the kind who walks through life in a lukewarm daze, wondering what his calling is, nor will he be the one to shy away from his dreams because he fears the negative opinions of those around him. When Silas discovers an object worthy of his love and devotion, he closes his eyes and ears to all else, then pursues his passion without restraint.

  I look back at pictures of my emotionless, drugged-up baby, and know that the passion Silas has today is a gift from his Creator. I only pray that Silas chooses the gospel of Jesus Christ as that passion which he relentlessly pursues with all the zeal and devotion that God has entrusted to him.