I held my infant son last night in darkness, breathing in his baby smell, burying my worries in the folds of his squishy neck. He should have been asleep, but then, he should have been in his crib. At home.
But we were far away. The IV pump beeped. A little boy in the bed next to me moaned. It was my little boy; the IV pump was connected to him. On the other side of the bed, another tube connected a dripping bag to his head. I squeezed the warm baby closer and tried to process it all.
Friday morning we went to physical therapy. Ben was a bit cranky, but life’s not all peaches these days, after all. Brain surgery was three weeks ago; more doctors and nurses and discomfort and attention than anyone really wants had all added up. So I took joy in hurrying home to bake him a cake for his third birthday the next day. I wanted some of that attention to be simply good.
But I looked down at him on the floor, placidly licking the beaters (yes, I’m that kind of mom). He had no fever; he didn’t act sickly. But his new shunt didn’t look right. It should have been merely a bump under the skin, softened by a fresh fuzz of new growing hair. But it looked angular, irritated, and almost like you could see actual hardware just under the flesh. I sighed. Two weeks ago, I had spent most of the night in the emergency room and then drove a couple hours to the neurosurgeon’s only to be told he had a mild virus. It wasn’t a shunt problem. It was no big deal.
Was this a repeat? What if it wasn’t? I called the neurosurgeon and got the expected response. “Come down, we can’t tell from here; or go to his local doctor and get their opinion first…”
I loaded the five kids in the car and drove across town to the pediatrician. They informed me it would be a while. The five of us sat down and made friends with the rest of the waiting room (we’re that kind of family, by default, since we have five kids and a wheelchair with light up wheels). A couple hours later, a doctor finally peeked in to our cubicle where the kids where shredding the paper on the exam table. “It’s not supposed to look like that, huh?” She frowned and squinted at it. “I’m here to ask you that,” I remonstrated her silently, not surprised by her uncertainty, but not encouraged to hear it. I don’t want to be the one with more experience with shunts in the room, particularly malfunctioning ones. “If the skin is open, is that bad?” I pushed her, unhappily. She dabbed at it. He squealed. Clear liquid dotted the skin she’d just touched. “I’ll call the neurosurgeon for you, ” she offered gallantly. “And just see what that means…”
A moment later, she returned to the room. “They want you to go to the emergency room down there; the neurosurgeon will meet you. And don’t feed Ben anything else today… just in case… ”
I groaned. It was that kind of shunt problem.
Grandma met us at the house and took charge of the still-unwashed dishes. I grabbed a cold coffee cup out of the bathroom as I tore through the house, grabbing clothes and toothbrushes for half a dozen people going two opposite directions. He’ll want his teddy bear. I’ll want to bring deodorant. Did I eat anything yet? Feed the baby and stick him back in the car seat. Where’s another tote bag? I really needed to buy diapers today… Who hid the nail clippers? The boys are fighting; Oh God make them be good for Grandma, please! Where are all the water bottles? Why did I put all the baby’s sleepers and my underwear and favorite jeans in the wash this morning?!? I managed to throw them in the dryer. Daddy arrived home from work in record time and started throwing things into cars. I hoped the right bags would go the right places. We kissed the three oldest and commended them to my own mother’s capable hands.
And we left.
Four hours later, clothed in an attractive sterile paper gown, I laid my son on the operating table at the biggest hospital in the state. I felt a shiver like Abraham must have as he laid his own trusting child on the altar. The anesthesiologist held a mask over his little mouth and we sang happy birthday to him as he fought the overcoming effects of forced sleep. “Good bye,” I whispered to his small motionless form, and kissed his forehead before they ushered me quickly away. They didn’t let me keep the svelte crackly blue gown either.
This time, it had been a big deal to worry. His new shunt had somehow managed to work its way up and grate against the skin. Finally, it had broken through. Once exposed to the outside world, the whole system had to be removed. Quickly. It was an open doorway into his brain. Any germ worth its name would jump on the free pass. We found out later he was starting to grow some sinister bugs in his head which could have been deadly within hours…
I saw him after surgery, once again plastered with sweat and the foreign smell of disinfectant. They couldn’t put a new shunt in until every trace of the invading germs had been destroyed. In the meantime, he’d have an external shunt, a tube to drain the excess brain fluid into a bag that would have to stay level with his head 24 hours a day. He’d also be on intensive intravenous antibiotics to kill anything that had gotten in. We staggered when the first doctor told us it would mean a week long hospital stay. I’d figured over the weekend, at the worst. As the next several days progressed, we found out it would be at least two weeks, at best. Good thing I put the wet laundry in the dryer.
He woke the next day with a headache and a hospital gown. The sympathetic overnight nurses had managed to throw together a bright birthday poster for his room. They even left some tissue-wrapped presents at the foot of his bed. He wasn’t terribly impressed, but scribbled some crayon pictures around the tangle of tubes anyway. He very much wanted a birthday cake, which we hoped the cafeteria could accommodate. (They couldn’t.)
We struggled through the next twenty four hours in a daze. The incessant beeping of monitors, the buzzing florescent lights, the utter lack of personal space, phone and Facebook filling with concern, baby and toddler fussing together, bad coffee and well-wishing volunteers… It is overwhelming and numbing simultaneously. We are attaining to the big leagues (the lower levels of it, anyway.) A pimple is threatening my calm countenance. The baby misses rolling freely on his blanket on the floor. I miss life sized bath towels and actual beds. Why did I ever complain about normal before?
I have walked with God long enough to know that when I ask to know the Lord in the land of the living, everything that stands in the way must die. And I’m just finishing the book of Job in the Bible. Pure coincidence, obviously. If this is what it takes that I may know and prove the goodness of my Saviour, then, well… I don’t like it. Honestly. I’m not going to say I’m glad He’s bringing me though this. I’m not that good. I’m pretty grumpy about it all, actually. But I do know there is bigger stuff at hand. And at head. I wish the drain in my kid’s brain would draw out some of the stubborn toddler-ness that’s stuck in there. It’s clearly malfunctioning in that regard. He hasn’t said “yes” to a single person here yet. We’ve got work to do.
Job wasn’t jumping for joy when he lost all his kids and all his stuff and broke out in infected boils all over and his friends called him a sinner. He didn’t like it either. But he bowed low and trusted His God. Even in this.
The valley of the shadow… This is where we are. But God is here too.
So be it.