This is what life is

“There's a moment when love makes you believe in death for the first time. You recognize the one whose loss, even contemplated, you'll carry forever, like a sleeping child. All grief, anyone's grief...is the weight of a sleeping child.”
― Anne Michaels, Fugitive Pieces

When you have a child in the hospital, they recommend that parents alternate spending the night. It makes a lot of sense, especially if you have other children at home. The little pull-out chair beds are small and not terribly comfortable for one person, let alone two, especially when one of the two is as tall as my husband. And it’s probably good for both parents not to be totally wrecked, sleepwise.

At the same time, when you have a child in the hospital, especially when your journey to the hospital was frantic, last-minute, and unexpected, sometimes what you need is the comfort of squishing together with your husband on that tiny pull-out chair bed. You want that safety. You want to curl up against the most familiar body in the world while you try to sleep for an hour or two, when you can’t quite close your eyes because you can’t take them off your small son tucked into bed, because you can’t stop watching his chest rise and fall, because you can’t take your eyes off the IV fluids dripping into his arm. Your hips ache, and you’re cold so you zip your hoodie over the shirt you didn’t change before you threw a toothbrush and your son’s stuffed puppy into a backpack hours ago. Your husband has stolen most of the thin green hospital blanket, but tonight you don’t have the heart to tug it back the way you would at home. And anyway, it doesn’t matter. You’re not really going to sleep. You doze here and there, waking to the nurses bending over your son, taking his blood pressure, checking the bag of fluids. After more than eight hours in the emergency room, your little son is so exhausted that nothing will wake him. For that small grace, you are thankful.

It’s funny how quickly everything fades into the background when you’re holding your son in the emergency room.

I was so worried about school over Labor Day weekend, so stressed about whether or not Isaac would be over whatever bug he seemed to have. I really can’t miss school this week, I said again and again. We took Isaac to the off-hours clinic in Tacoma on Labor Day. He’d had a fever for a few days, his face was uncharacteristically puffy, and he was a little sniffly. Ordinarily, I’d have waited to see his regular pediatrician, but I was beginning to panic -- I wondered if he had an ear or sinus infection, and if he did, I wanted to treat it more quickly than usual, simply and selfishly because this was my first week of teaching. I couldn’t afford to leave school at ten o’clock in the morning because I received a text saying he my son was sick. It’s the one week I basically cannot miss unless I am hospitalized or dead. Anyway, the on-call doctor peered at his ears, observed a little fluid, and diagnosed him with a sinus infection within about five minutes. Away we went with antibiotics.

But by Wednesday, while his fever had broken, the puffiness hadn’t gone down. I took him to daycare anyway, but right away they noticed his swollen face. I knew it wasn’t a reaction to the medicine because I’d specifically mentioned it to the doctor. She said, “Well, his sinuses are small, and he’s congested.” Then again, she did not know my son.

I left him at daycare. Reluctantly. By the time I arrived back home, I knew in my mama heart that things weren’t right.

Matt hadn’t left yet, since we were planning to take Suzannah to her first day of third grade together, so I walked in the door, walked into our bathroom where he was brushing his teeth, and burst into tears. In the middle of huge, gulping sobs, I explained that I thought Isaac really needed to see his pediatrician, but that it was the first day of school -- freshmen orientation -- and I could not stay home. I lost it. Freaked out with a capital F. I sat on the bed and cried and cried, totally unable to stop, totally unable to articulate why I was so upset. I really went out of my head for a moment until Suzannah poked her head into the bedroom and said, “Mommy, why are you crying? Can you stop?” in a small voice. I took a deep, shuddery breath and said, “Yeah, Baby. I’m sorry. I’m okay. Um. Are you about ready to go?”

(What shreds my heart a bit when I remember this is the way she called me Mommy, which she rarely does anymore, and the way she reappeared a moment later with a Kleenex.)

Matt wasn’t happy, because he’d stayed home with Isaac the previous day, but he reassured me that it’d be all right.

We took Suzannah to her first day of school. I went to freshmen orientation. Matt and Isaac went to the doctor.

Our doctor took one look at Isaac and ordered a urine catch and blood work. The earliest verdict was kidney issues (unrelated, they felt, to the kidney infection he had three years ago, which cleared up quickly with antibiotics, and the subsequent ultrasound was normal). Matt made an appointment for Thursday at Mary Bridge Children’s Hospital in Tacoma, where they have an excellent team of pediatric kidney specialists. I was nervous, of course, but basically okay -- and then they called us halfway through cooking a huge pot of soup for dinner and said that based on the last round of lab results, they felt that the safest place for Isaac to be was in the hospital. They asked us to be there within the hour, which gave us less than thirty minutes to leave the house. Within those thirty minutes, I:

-Called my brother and sister-in-law and asked if they could come and stay with Suzannah. Aaron was at my house within ten minutes.
-Called my friend who happens to be the assistant principal at my school, heard his voice, and burst into a fresh set of tears when I told him I needed to take my son to the hospital, and I was very sorry but I would miss the next day of school, something that is just Not Done the first week. He cut me off, told me to be with my son and not to think one more thought about school.
-Threw a set of Isaac’s jammies, an extra shirt, and a couple of toothbrushes into a backpack.
-Stopped cooking our huge pot of soup and threw the whole mess of dishes into the sink.
-Bundled Isaac into the car and headed for Mary Bridge Children’s in Tacoma.

I remember how lovely the evening light was as we drove across the tide flats and into the city. How soft the sky looked as the sun set.

I did a lot of crying on Wednesday, but once I knew we were going to the hospital, I was pretty calm. Part of it might have been relief that Isaac would be directly cared for by a team of experts, and in my worry, that helped -- but the bigger part of it is that while I know I’m emotional and prone to freakouts, I am actually pretty calm in a direct crisis. The falling apart comes later. I didn’t have time for that in the moment, and it was much more important to be present for my son, to provide as much safety for him as I could in the moments that were frightening for him.

I spent a few hours on Friday trying to record everything in my paper journal -- just scribbling down everything that was happening, everything the doctors told us, everything Isaac had to go through, everything about the hospital. I thought that one week later I’d be able to write coherently about it, but on Monday I was thrown back in the bustle of high school, a world that certainly didn’t stop turning while I stepped out of it for a bit, and tonight I’m exhausted and foggy.

The stream-of-consciousness version: Spending hours in our little ER room, visited by a steady stream of doctors, at least one nephrologist, a cardiologist, and nurses. Isaac had an EKG -- high levels of potassium can be hard on the heart. Another urine catch. I wasn't quick enough with the cup at first, and we both wound up splashed with urine, which upset Isaac. I soothed him with the promise of changing into fresh pajamas soon, not realizing it would be hours and hours before we would be admitted into our room. Albuterol treatment for the potassium, which made him panic and sob for the ten minutes he had to keep the mask on. I held him, breathing with him, brushing away tears the entire time. Another medicine to lower his potassium, delivered in a huge cup. Salty-looking sludge. I knew he wouldn’t drink it, couldn’t drink it. The nurse said he had to take it before he went upstairs, and I couldn’t find the words to ask her if she also wanted him to fly to our room because that was about as likely. I tried to get him to take one sip. He gagged, spit it out all over us both. Cried. The only other option was to give it rectally, which I thought they should have done first -- traumatic, yes, but inevitable, so they could have spared him the sludge. I wrapped him in a bear hug. It was horrible, but fast. (And hours later it resulted in explosive diarrhea, which confused him -- he’s never had that. “Mommy, my pants are wet,” he said, sitting up in his bed. I managed to get him on the toilet, but he climbed down too soon, splashing both me and the floor.) Blood draws. IV fluids. We had a little TV in our ER room, so we distracted him with cartoons until he passed out. When, I don’t know. 2:00, maybe. Hospital worlds turn slowly. Matt curled up on the little bench in there and snored softly and I sat there between my boys, my eyes burning with fatigue, watching Roseanne in the semidarkness. 3:00. 3:30. They kept telling us our room was almost ready. At 3:45 a nurse came to take us to an ultrasound. Isaac wouldn’t allow himself to be transported on a bed, so I sat in a wheelchair and he sat on my lap. When I tried to scratch my nose he grabbed my arm and wrapped it tightly around himself. I held him as the nurse pushed us through the darkened corridors, empty except for a man vacuuming. Hey, Peter, the nurse said as we rode blearily past. Finally in our room at 5:00. Isaac allowed himself to be tucked immediately into bed and he was out. Matt and I accepted a pitcher of ice water and I drank several cups -- I hadn’t had anything in hours. The nurse pulled out the chair bed, and the two of us collapsed on it. Fifteen minutes later I sat up to the lights blazing on, monitors beeping -- a generator test. They apologized, quieted our room. We dozed, fitfully, for two hours.

Thursday: Isaac woke up vomiting. I rubbed his back as he heaved over a pink plastic receptacle, peeled his sticky shirt from his body. After the nurse gave him Zofran for the nausea, he wanted breakfast. An incredibly restrictive renal diet meant he couldn't have much of anything, but he could have French toast, and he ate that happily. I told Matt, “I want all the breakfasts.” Realized I hadn’t eaten anything since my little vegetable wraps at noon the previous day. (At my desk. At school. In my classroom. A life that seemed so distant from that moment.) He brought coffee, which I sipped but soon forgot about in the bustle of morning rounds. The day was both slow and not. So much waiting. But when we weren’t waiting, there were nurses, doctors. Our youth pastor and friend arrived around ten. He stayed with us through some of Isaac’s meltdowns and remained unfazed; he has a son, too. He held my hand a bit, prayed with me, hugged me. More blood draws, more IV fluids. Isaac perked up in the afternoon in between fits of crankiness (he was hungry, but the food was boring). The floor had a wonderful play area -- lots of toys and crafts, including paints, and a family room with a wall-mounted computer game he couldn’t get enough of. He spent several happy hours there over the course of two days. Taught me how to play Zombie Cats, which delighted him. I ran home at noon. Didn’t eat, but I showered – a bigger priority, as I felt grungy with a filmy layer of tears, urine, diarrhea, vomit, sweat, and medicine. Packed clean clothes and a few more books and toys. Cleaned the kitchen. Drove back to the hospital, sipping an iced chai and trying to stay awake. Kyanne arrived in the afternoon, bringing a grilled cheese and salad. Stayed while Matt ran home for a shower. Matt was there to hug Suzannah -- I missed my girl so much. So much. She did so well with her auntie, though, and was very relaxed about everything. Kyanne and I went out for an hour before bedtime. I ordered a glass of wine, she ordered flatbread and shared with me. A bit of stolen normalcy. By the time I crashed onto the pullout bed on Thursday night I was so desperate to sleep I’d have slept propped against a wall.

Friday: More waiting. More of the same. The doctors seemed pleased with his numbers and overall progress. He is not a sickly child -- but the fact was that his kidneys were not working right, and we didn't know exactly why. We still don’t. We were allowed to go home, finally, because his blood pressure stayed under the danger zone without meds all day. But we were still there at dinnertime, and I watched my poor boy burst into tears at the sight of his plain pasta and side of grapes and say, “But Mommy, it doesn’t taste good."

Matt took him back on Monday for more labs and a meeting with the nephrologist. They were pleased with his labs and with his overall appearance; his swelling has all but disappeared, and he seems healthy, happy, ready to just be back in his four-year-old life, free of needles and probing and prodding and blood pressure cuffs and medicine and an endless flow of unfamiliar people all up in his business. I wish I could write something more definitive here, something about the what and the why of it all, but the fact is that my son hasn't presented “classically” for any one definite thing. It's not this or that or the other thing; it seems like a tricky combination of more than one. There are overlaps. There are no clear answers. We know he didn't have a strep infection, which would have been a simple explanation, although a mild infection could have triggered this. Right now we're operating under the assumption that it's nephritic syndrome. He's on a low sodium diet for the time being, although potassium and phosphorus restrictions have been lifted, and we will recheck in a few weeks.

The paperwork from the hospital reads that our reason for admittance was “acute kidney failure.” I didn't read that until later. I'm glad.

Our pediatric nephrologist said, “You know, not every kid who comes into the hospital fits so neatly in a box.”

(I know my children do not fit neatly into boxes, of course. Most people don't. And most of the time I'm just proud of them, completely tickled by these interesting people I will spend my entire life loving. But my goodness, if there's just one time I wouldn't mind the neat little box.)

I had a bit of recovery time last weekend before I returned to school, feeling totally unmoored. I didn't look at anything school-related for four days, not a lesson plan, not an e-mail. That just wasn't the headspace I could inhabit. But on Monday, I was back, doing my thing, meeting lots of new people, and trying to recover from missing the first two days with them. The students seemed relieved that their “real” teacher was back, because they want and need a little security, too. And it's been a pretty decent week, all things considered, although now, on Friday night, I am utterly exhausted.

There is no better perspective, though, than a few days in a Children's hospital. We are home, and we have our son. He is okay tonight. He and his sister fought over toys today. He helped me cook dinner. Yesterday I picked him up from daycare and took him to get a haircut; afterwards we went to Target together. He still fits in the seat of the shopping cart, and he was content just to ride along while I picked up cleaning supplies and a few new school shirts for Suzannah. We chatted, we giggled. I let him pick out a Halloween t-shirt, which he could not wait to show his daddy. He helped me choose one for his sister. I stocked up on snacks for my classroom and he asked me, so conversationally, “Are these for your students, Mommy?”

And my heart just burst with these little moments and the gift of these ordinary afternoons. A few days in a Children's hospital will show you exactly that—the gift of the ordinary. Because there are children still there, children who sat in the playroom with my son and painted, children who will not be going home with their mothers and shopping at Target this week. I watched a tiny boy with a smooth, bald head shuffle into the play room wearing fuzzy slippers and pulling his IV pole along behind him. A few times our nurses checked their pagers and dashed from our room, calling apologies over their shoulder—someone else needed them more than we did.

So while I'm tired tonight, I'm okay. I'm good. I'm doing what I can at school. It's not enough, because it never is, and I will be the first to admit that I'm just not on my game yet. But I have classes I think I will love, and eventually, I'll find my groove again. I just cannot find it in me to get angsty, or angry, or stressed at things that might normally inspire a rant or two. We're all busy, sure, but right now, this week, all I can think is that if my big problem in life is that I'm feeling overwhelmed and busy in a job I love, well—that's an awfully privileged problem to have. I know I've written that before, but this week I've thought about that in a whole new way. I was so worried and so stressed ten days ago about what? The thought that my son might have a bad cold and Matt and I would have to play the “Whose job wins” game? I promise that none of that mattered when we squeezed together in that little pull-out bed in our son’s room and tried to catch a few minutes of rest.

I’m human, and I have a lot of messy feelings. I know I’ll lose perspective again and again and again, that I’ll stress over things that, in the scheme of things, aren’t worth it. That I’ll lose temporary sight of what matters most. I’ll be hysterical, and crabby, and irritable. I’ll be a martyr. At the same time, I hope that something about this experience has worked its way into my heart to make it a little bigger, a little softer -- to extend a little grace not only to myself but to other people as well. We’ve been shown so much goodness, so much love. I keep thinking about a post my cousin Kathryn made a few years ago, about giving thanks in all things--not necessarily for all things but in all things--and I think this is exactly what that means. We’ve been surrounded with prayers and love and real concrete offers of help, and all of that has grounded me so solidly in this deep awareness of what matters. The thing I wrote in my last post feels so true right now--that while I hated how sick and scared my son was in the hospital, while Matt and I were exhausted and terrified ourselves, and while I hope never to repeat this experience, there is a deep, unutterable joy in the gift of being present. To climb into my son’s hospital bed for awhile and curl around him while he slept. To clean up the urine and the diarrhea and the vomit and the tears. To hold him and breathe with him and try to calm him, to reassure him that while this is yes, really fucking shitty, he will not have to be alone for even one moment. To feel the warmth of my husband’s hand over mine, to listen to the steadiness of his breathing while I stared at the ceiling, my eyes burning.

This is what life is. We show up for each other. We hold each other’s hands. We sit right down in the shit with each other and say, I’m here. I’m here.