A Boy Named Silas: The First Five Years Page 6

  Even though we stuck to our list, it still wasn’t easy when I got pregnant with Timmy. Silas could walk, but he had to hold my hand for balance, and because of his lung issues, he tired very easily. I ended up carrying Silas quite of bit of the time I was carrying Timmy as well. The pregnancy didn’t interfere with Silas’ swallow study, but I did have to leave the room during one of Silas’ X-rays to rule out pneumonia.

  What was even harder than the physical strain of my pregnancy with Timmy, though, was the emotional turmoil. Psychologically, I was a wreck. I couldn’t shake the terrible fear of spending more time in the NICU. I didn’t know how our family could survive a repeat experience of what we had gone through a little over two years earlier. At night, I found myself reliving scenes from Silas’ birth day, frightening flashbacks of the doctor rushing out of the room with my lifeless baby. Not the serene and calming nighttime images a pregnant woman might hope for.

  But pregnancies don’t last forever, and finally it was time to meet little Timmy face to face. The labor was shorter than Silas’ (mercifully), and after about ten hours in the hospital, I was holding my little six-pound, five-ounce baby in my arms. I don’t remember a whole lot about those first few minutes, other than sobbing like a crazy woman, not from sadness or worry or fear, but from sheer relief.

  Timmy had been born safe and sound. When I nursed Timmy for the first time (something I had never been able to do with Silas), all the fear and emotional trauma of the past nine months — and in some ways of the past two and a half years — completely dissipated.

  In many ways, Timmy’s birth felt as if God was giving me a chance to relive all the things I missed when Silas was a baby. I got to nurse Timmy right away. Within two hours, Timmy’s older brothers were rushing down the hospital hallway to meet their littlest brother, and we were all home together the very next day. I didn’t spend a month and a half eating hospital food or pumping breast milk or waiting for a nurse to give me permission to hold my son.

  Today, Timmy truly is the perfect addition to our family. If Silas eventually outgrows his feeding tube, I have no idea how we’ll feed three growing boys, but I am so grateful for these blessings God has given to our family. I couldn’t wish for better sons, and I just pray God equips me to be the mother He wants me to be to each one of them.

  The View from Here

  Silas got his first pair of glasses when he was three years old. They looked adorable. (Unfortunately, the first pair broke within the first eighteen hours we had them, at which point we opted for the kid-proof, completely bendable design.) I gushed nonstop about how cool Silas looked with his new lenses, but I have to admit I found myself wondering how I really felt about my three year-old’s new appearance. I loved that Silas could see more clearly. But I couldn’t help but worry that his glasses were an even further indication to the world Silas wasn’t “normal.”

  I’ve found myself wondering lately why God doesn’t just go all the way and heal Silas completely. Many aspects of Silas’ recovery from his early brain trauma were so dramatic. My son learned how to read when he was two years old, which is amazing for any child, much less one who was expected to be vegetative for the rest of his life. Now five, Silas is keeping up with his six year-old brother doing first and second-grade math. He truly is a miracle child.

  I know this. I know that God healed Silas. I felt the healing power at times when praying over him as a baby. I sensed the promise of the Holy Spirit that Silas wouldn’t die but would thrive and live to declare God’s praise.

  So why doesn’t God just finish what He obviously started and heal Silas entirely? Why does my son still have such a hard time articulating to make himself understood to strangers? Why does he still cough so horribly at night that he’s drenched in sweat when I get out of bed to check on him? Why does he still have a feeding tube that causes him so much discomfort and fear when it needs to be changed?

  Sometimes I wonder if I’m not praying hard enough. Or maybe I just have to wait for someone else with the right gifting and the right amount of faith to come along. I’ve been reading missionary stories to the boys, and testimonies of miraculous healings leave me jealous and confused instead of awestruck. God, I have faith, I pray. Why don’t you do this for Silas? Surely our family deserves it!

  But somewhere in the back of my mind a picture has been forming. It is a picture of Israel’s stones of remembrance that they erected as reminders of God’s power or provision.

  The other day I asked myself, Could Silas’ lingering delays actually serve as an ebenezer of sorts? Could his continuing setbacks remain in order to help us all remember what God has done in Silas’ life? In all honesty, I don’t want to remember what we went through. The weeks and months following Silas’ hospitalization that first Christmas were wretched. Why would I want to remember them?

  Why would I want to remember a little baby who was so drugged up he couldn’t smile? Why would I want to remember all those monitors and suction machines and alarms going off in the middle of the night? Why would I want to remember the fights Scott and I had about Gtubes and formula and oxygen, or the loneliness and isolation of our time in Palmer?

  If Silas were completely healed, I would be ecstatic. And then I would forget. I would forget that my little boy who loves to laugh once lacked the lung capacity to even breathe without extra oxygen support. I would forget that my little boy, who has memorized dozens of poems, once didn’t even recognize his own mother. I would forget that my little boy, who can spend an hour singing VeggieTales songs, went two years without being able to communicate verbally at all.

  I would forget, because the memories are too horrid and painful. I would love Silas just as much, and enjoy my smart and energetic little boy, but the wonderment would be gone. I wouldn’t have any reason to stand over Silas’ bedside at night, awed that my son is not only alive, but intelligible, intelligent, and wondrously silly and fun.

  If l hadn’t gone through such a dark and despairing valley, standing where I am on this mountaintop wouldn’t feel quite so grand. I’ll still take a full healing if God’s got one in store for Silas. But until then, I plan to savor the view from here.

  Heavenly Sights

  In the radio drama we listened to recently, one of the characters flat-lined in the hospital. Silas started sobbing uncontrollably. He wasn’t shaken up because the character might be dead (Mr. Whittaker survived, by the way). I think Silas’ response was much more subconscious.

  “It’s beeping,” he cried over and over.

  This wasn’t the first time I’ve suspected Silas of having some latent memories of his neonatal crash. For an entire year, whenever Silas watched a certain VeggieTales movie, he would go into sobbing hysterics during one particular scene in which three angels (all dressed in white and looking suspiciously like doctors) cornered one of the veggies.

  Do I believe Silas accurately remembers each event leading up to his NICU stay as it happened in real time? No. But every once in a while, Silas will say something that simply blows my mind and makes me wonder if my son’s earliest memories include not only medical trauma but a decent amount of the supernatural.

  Two years ago, while leading Silas’ Sunday school class, I was teaching a lesson about angels. After explaining that in the Christmas story God sent angels to deliver messages, I asked my students, “What else do angels do?’’

  Without skipping a beat, my three year-old answered, “They play with babies.”

  Up until that point, I never talked to Silas about the angels that might have helped him at his birth. Actually, up until that point, I was pretty skeptical about such matters myself.

  Over the next weeks, I wondered if Silas would mention the angels again. I didn’t want to ask him too many leading questions, but I wanted to be open if he actually did have more supernatural recollections. Finally, after waiting a month or so, I asked Silas again to tell me some jobs that angels do. One of the ones he mentioned was to help babies. I jumped on it.


  “Who helped you when you were born?” I asked him.

  “Angels,” he said.

  “What did they do to help you?”

  “Put me to bed,” he answered.

  Silas said the angels were big and colorful and looked like stars. He even sang me a song that he told me the angels sang to him the morning he was born three years before.

  I knew I was starting to tread a fine line. The more questions I asked, the more I risked planting false memories into Silas’ head. But I had to know one more thing, so I risked it and asked.

  “Did the angels say anything to you?”

  No pause. “Yeah.”

  Immensely thankful that by this time I was recording our conversation on my video camera, I asked Silas what the angels told him.

  “Would you wake up, please?”

  I suppose we will never be one hundred percent certain if Silas’ memories are true or not. There will always be skeptics, and I included myself in that category for quite some time. But, although this was the most coherent conversation about angels Silas and I have had, it’s not the only one.

  Another time Silas told me about hearing a huge crash and having angels tuck him in bed. Could Silas actually be remembering doctors taking him to the hospital nursery and trying to resuscitate him? Who knows for sure?

  Silas also has talked on multiple occasions about a large playroom he was taken to after he was born. Wondering if it was a vision of heaven, I asked him what was in it. Silas said it was filled with things like Thomas the Train, Elmo, bouncing balls ... in other words, the toys he liked to play with at that time. Real memory or not? I’m dubious. But then again, when the Apostle John experienced his glimpse of heaven, he had to find a way to put his vision of the infinite into human language. Is a playroom filled with wonderful toys the best way a preschooler can describe heaven?

  Who’s to say yes?

  But, then again, who’s to say no?

  Silas (and Mom’s) VBS Adventure

  When he was three, Silas was inaugurated into the world of official Christian childhood: He attended his first Vacation Bible School.

  The theme was New York City. For snacks the kids had elaborate taxi-cabs made out of Twinkies and ice cream cone cupcakes shaped liked Lady Liberty’s torch. Even the music had an urban flair; Nemo and Silas now know how to rap John 3:16 with the best of them.

  In many ways, Silas’ experience at his first VBS was like anyone else’s. He made crafts and played games and learned Bible verses. What made Silas’ week totally different was that every day at 10:45, his mom showed up to his class with a bottle of formula, a feeding tube, and a lollipop. While his classmates ate monkey faces from the Central Park Zoo, Silas played with his lollipop and waited patiently while I dumped eight ounces of pediatric formula into his stomach.

  I can’t say it was a breeze from my end, especially since I had to interrupt Timmy’ss nap time, and construction made the trip last twice as long as it would have been normally. My list of to-do’s while the kids were at VBS didn’t even get touched. These were all minor inconveniences, however. The hardest part was when I found myself comparing Silas to all the other three-year-olds in his class to see if he “measured up.”

  I was happy to see that, in some ways, Silas was ahead of the curve. Since he spent his first two years communicating non-verbally, my son did a great job learning the signs for all the songs. Since he was used to having to sit still during his tube-feedings, he was also pretty good at staying in his chair during the Bible stories. And Silas was the only three year-old who could actually read the verses on the wall.

  But then there were the other differences I noticed as well. Silas’ scribbled scrawls hung up next to neat and pretty, in-the-line coloring pages. He came home one day wearing a new shirt because he had drooled so much on the one I sent him in. And one morning, as he watched his classmates eating Twinkies decorated as taxi cabs, Silas turned to me and asked, “Can I eat a car when I’m an adult?”

  Those are the kind of questions that break my heart because I don’t know how to honestly answer them.

  On Friday, I joined dozens of parents in the sanctuary to see my son get up on the stage with the rest of his class. For the first time in my working memory, I experienced a horrifying sense of stage-fright. Could people tell just by looking that my son was different?

  My anxieties were quickly put to rest however. Silas did a great job signing “I Love You, Jesus.” His entire stage debut lasted less than a minute, but I was beaming right along with the other proud moms and dads.

  After the program, we all went outside for a picnic. Nemo and Timmy enjoyed hot dogs and melon. Silas got to play with Nemo’s discarded watermelon rind.

  Halfway through our meal, one of the cafeteria volunteers tapped me on the shoulder. “I picked this up for Silas,” she said. “I felt so bad all week that he couldn’t have snacks with the rest of his class, so I got him something special.” She handed my son, who is fascinated with hats, a black baseball cap that read GOD ROCKS.

  Needless to say, I was touched. Silas was overjoyed and wore the hat for the rest of the day. Now it’s at home. When Silas sees it, I hope it reminds him of his first VBS — rapping John 3:16, reciting Bible verses in sign language, dancing with his class while listening to great music.

  Likewise, I hope it reminds me of some important life lessons as well. Who cares if my son’s wrists are a little crooked when he signs certain words? He’s telling the world that Jesus loves him. Who cares if Silas’ tube feedings take a little extra time out of my day? Stopping by Silas’ class every morning gave me a chance to meet some very kind and wonderful VBS workers I would have only known by sight otherwise.

  All in all, Silas’ Vacation Bible School was a smashing success. I can only imagine what the following years will bring.

  Tube Buttons on the Beach

  I never knew my son’s torso could be such a good conversation starter.

  When Silas was three, I took the boys to Goose Lake, where several hundred Anchorage residents enjoyed the annual summer beach party. My only thought when I took off Silas’ shirt was, I hope he doesn’t get sand in his G-tube site.

  A little later, I was wading in the water when another woman came up to me with that timeless Mom question: “How old are your kids?”

  I answered, then came back with the expected, “And yours?”

  We got these preliminaries out of the way. The next thing she said was, “My son had a G-tube until he turned two.” And for the next hour, I got to talk to another mom who had been through the NICU stays, seizure scares, stomach surgeries, and therapy regimens that have been part of Silas’ life from his birth.

  All because I took his shirt off at the beach.

  It was refreshing to talk to someone who’s “been there.” Our conversation felt a lot like two veterans swapping combat stories from way back when. But a few years ago, when Silas was still so young and so medically fragile, having other special-needs moms to lean on was like having a best friend next to me in the trenches.

  At one point, Scott and I actually counted the number of friends we had with disabled children. I think we rattled off eight without having to stop to think. God must have known that we would need extra encouragement at the get-go. I’m thankful for those mothers who blessed me so much in Silas’ early days with their fellowship, prayers, advice, and encouragement. I hope that one day God might lead me to some other moms with special children so I can return the favor.

  Smarties and Mustard Sauce

  I have a confession to make. I started giving Silas little tastes of food before the doctors said I could. Silas wasn’t supposed to have anything in his mouth at all. But with a crumb-dropping toddler living in the same house, I could either give Silas a little smidge of something at meals under supervision, or catch him at random times throughout the day trying to sneak a goldfish cracker or one of Timmy’s forgotten Cheerios.

  When it got too heartbreaking to hear Silas da
ydream about all the food he’d finally get to eat in heaven, we got him a little mesh eating bag that we put tiny bits of food in when the rest of us had our meals.

  Unless you’re one of his therapists (and I’m guessing at least one or two of you might read this book one day), you probably don’t mind too much that we let Silas enjoy some early culinary experiences at the table. What you might find a little more disturbing, however, is Silas’ favorite flavor combination:

  Smarties and mustard.

  Don’t ask me why, but Silas loves two or three of those tart Smarties candies in his eating bag, along with a small drop of yellow mustard in a bowl to dip them in. Give him that, and he’s in little-boy heaven.

  I find it a little bit cute and a little bit sad that Silas is so unconditioned by our traditional American food combinations that he chose Smarties and mustard as his favorite treat. It doesn’t take long for most kids to learn that eating habits come with their own sets of do’s and don’ts. I’m sure many of our mothers told us never to drink milk with orange juice. (By the way, stomach acid is way more acidic than citric acid, so the milk curdles there no matter what.)

  My point is we have certain conditioned preferences when it comes to what we eat. Most of us don’t eat macaroni and cheese with pad tai. Fried rice mixes better with orange chicken than it does with a cheeseburger. But how would the taste buds of a boy who has been exclusively tube-fed since birth pick up on all these conditioned nuances?