There were sick grandmothers, cardboard pancakes, and stuffed puppies. There were long nights at the hospital. There was mud, blood, ice, tears, a great lack of rest and a good deal of grace. And pizza. This is life.
Ben was scheduled for a shunt revision on Friday. We spent Wednesday making messes for Christmas, Thursday cleaning up after Christmas, and Friday came before any of us really wanted it to. Grandma arrived bright and early, and sick with a worthy head cold. With a wan smile and a will, she gathered up the three oldest boys for an overnight at her house (which didn’t have power after the recent ice storms). The two youngest got strapped into car seats and headed a few hours south to the hospital with Mom and Dad.
“I’m getting a new shunt!” Ben announced proudly to his grandfather when we met him in the waiting room. He seemed blithely unaware of what was ahead, and busied himself rearranging icons on Grampy’s smartphone while we waited. (Kids who haven’t eaten all day because they’re headed for brain surgery get to do these things.)
He got a little worried when we traded his camouflage pants for a colorful johnny, and cried when the nurse offered him liquid medicine to drink. But as it kicked in and he relaxed into jello, he seemed only concerned that the doctors had drawn on his sheets with markers. “You can do that at the hospital,” the nurse told him as she marked his length out on the bed with a pen. “It’s different than at home.” No kidding.
Then the horrible moment came. I handed him over to complete strangers. The possible surgical complications flashed through my brain. All the promises I made to him before he was even born felt jeopardized and hollow. I felt like I was sending him to battle when he didn’t even know there was a war going on. I’ve done it before, I’ll do it again, but I hate that part.
We settled into the waiting room to wait. My husband squeezed my hand; I squeezed the baby tighter. Napless and fidgety, he squealed and spit milk seeds on my shirt. (The baby, not my husband…) I realized I hadn’t eaten much that day since the two year old couldn’t, but the nursing baby certainly wasn’t observing a fast. An hour trudged soddenly by. This is what Purgatory feels like.
Finally, the neurosurgeon appeared. It was done. There was a new catheter in my son’s brain, a new hole in his head. A new haircut. We went to him. His eyes were closed, a single tear staining the cheek beside his lashes. He was silent till I picked him up, gingerly, amidst the tangle of wires and tubes. Then his stoicism melted into tears. We had to stay in the recovery room until he could hold down some liquid. He doggedly refused until someone offered him a popsicle.
He chose red, which I don’t think I’ve ever given him, to match the monitor light taped on his finger. “Like ET.” He held it up, brightening as the sugar quickened his awareness. “Can we go home now?”
“No, we will stay here tonight.” I answered, wishing myself that we could be in our cozy little house without buzzing florescent lights and beeping and wires. He snuggled closer. I could smell the disinfectant plastered all over his head. Praying was difficult; I was distracted, I couldn’t form cohesive thoughts. But I knew others were covering him in prayer. It was a great comfort.
Finally they wheeled him up to his room on the Children’s floor. It took a bit of configuring, but we finagled spots for all four of us to sleep. “Sleep” is of course a relative term in hospitals. But Ben is of the age where Mommy is a necessity when you’re hurt or sick, and Finlay is of the age where Mommy is a necessity when you’re hungry. And Daddy is a necessity because Mommy doesn’t have four arms.
We had just discovered that the bag of clothes I had packed for Ben was still sitting on the sofa (2 and 1/2 hours away), when, by chance or divine intervention, a friend dropped in to visit. She brought hot pizza. God bless that woman. She made the impending night seem less dark. It was still a long one, though both boys slept through most of the nurses’ visits. At five a.m., they came to take Ben down for another CT scan of his head. When he came back freshly radiated, the baby woke and it was time to start the our day.
I went to the hospital for my son’s brain surgery, but I didn’t know it was I who’d be getting a facelift. As we looked out at the cold dawning day over the rooftops, Psalm 121 drifted though my foggy head. In more lucid moments, I whispered the words. I lift up my eyes to the hills– from whence comes my help? My help comes from the Lord, Who made heaven and earth. I could only see the tops of buildings from our vantage point, but I decided not to interpret “hills” too literally.
He will not allow your foot to be moved; He who keeps you will not slumber. Behold, He who keeps Israel will neither slumber nor sleep. Even in those dark hours, He kept vigil beside the IV pump. I felt comforted knowing He was attentive though my incoherent hours.
My two year old gazed across the rooftops with me. “Birds!” He whispered, enraptured. I saw a seagull glide over the spires around us. Snow reflected the first golden rays of the sun off the shingles. The Lord is your keeper, the Lord is your shade at your right hand. The sun shall not strike you by day, nor the moon by night. I snuggled him close in the alcove by the window. The sterile world around us faded from my thoughts. For a moment, anyway.
The Lord shall preserve you from all evil; He shall preserve your soul. The Lord shall preserve your going out and your coming in, from this time forth, and even forevermore. I looked up, across the roofs at the pure cold dawn. I breathed out thanks and breathed in renewal.
We stumbled though cardboard-like pancakes and sugar-flavored maple syrup and eventually got the OK to go home. It was good to be back in our less-antiseptic but well-used house full of brothers and leftover Christmas decorations.
Yesterday, before I managed to post this, Ben woke from his after lunch nap with a fever. As it continued to climb, I got worried. After a long round of phone tag with the pediatrician and neurosurgeon, I figured I’d better take him into the emergency room.
My only experience with the ER previously was nearly three years ago, when Ben was two weeks old. Spinal fluid started dripping out of the incision on his back (from surgery at birth to close the bubble that contained his spinal cord). That visit resulted in surgery to get his shunt installed to manage the overload of cerebral spinal fluid.
But again, I braved the crowds of feverish infants, delirious diabetics who hadn’t eaten that day and suddenly found themselves cranky, and loud-mannered teenagers complaining of nausea. I had to check my pocketknife at the door. Ben sat silent, white, thin-lipped, and hot, on my lap for three hours before they got us in to see a doctor. He ordered rounds of tests to rule out reasons for infection, and spent a good deal of time consulting with neurosurgeons both at the local hospital and the southern group who had just revised his shunt. We paced the cubicle. Grandma put the older boys to bed so Daddy could bring the baby to nurse. No one seemed to know what to do. We left around midnight.
This morning, we spent more hours talking to nurses around the state. They finally convinced us to come down to see the neurosurgeon who had done Ben’s brain surgery on Friday. We scrambled, throwing clothes and toiletries into bags, not knowing if the doctors would keep us there, or for how long. Josh ran the older boys to Grandma’s again. I sprinted to the grocery store with the youngest; I was overdue to go, the fridge felt bare. We trucked down the highway.
Finally, after a long wait, the doctor poked his head in the door of the cubicle we were starting to call home. “He’s fine.” The surgeon announced. “High fevers mean it’s viral. Nothing to do with the shunt. You can go home. It’s OK.”
So we did.
I am glad to be home tonight. I hear fireworks in the distance, marking the end of the year. The Lord has preserved our going in and coming out. Tote bags are scattered around the house, laundry is piling, toys rule the corners of the living room, my kids haven’t eaten enough veggies in the past week. I will probably step on a lego tonight. Or a pretzel. Maybe simultaneously.
But we have been preserved.
From this time forth, even forevermore.