From the iMiriam drafts archive

I wrote most of this post in March and April. It was one of the first things I did when I started the blog. In fact, purging the whole Psycho Pneumonia nightmare from my mind was one of the things that motivated me to blog in the first place. The whole experience was still sort of hovering in my head, and I was done with that feeling of carrying it around with me. I wanted it out. So I started the post, and added to it on and off, until oops – something else sort of took its place in my mind as the R front runner, and I never had a desire to finish it. Heh.

Anyway, I have mixed reactions reading it now. For one thing, I don’t think the “shoe on the wall” theme makes a whole lot of sense, at least beyond the poetic license or whatever, and I don’t think it’s consistent. Also, being so far removed from it now, it’s difficult to believe that every moment was quite that dramatic and intense. I read it just now and I was thinking “Really? I was that freaked out? I was actually worried that she’d died?” But if I let my mind wander down memory lane for a minute or three, I do remember being that freaked out. It was terrifying, see, and it went on for weeks, and, well, when I started the post, I had no idea that she was going to have a stroke, and that my entire experience of her was going to undergo a big, fat, paradigm shift. Sometimes that pneumonia seems amazingly puny in comparison to the stroke, but oddly, when I actually really remember the pneumonia, the stroke is the one that seems puny. The pneumonia is when she was actually sick, see. The pneumonia is when she really could have died. I told people over and over after the stroke that most strokes are scarier than most pneumonia, but that her pneumonia was scarier than her particular stroke. So as to which one wins the prize for the most upsetting R episode, I suppose it depends on the day.

Whatever.

Anyway. Without further ado. I’m sick of seeing this in the “drafts” list, and I want it out, and I’m much too sentimental or whatever to delete it, so here it is. Enjoy, and sorry for the absence of my usual humor within the drama. Just pretend I’m cracking jokes.

Update: I decided this post is a bit too intense and/or depressing to have sitting all bold-like on the blog for the whole world to ingest, so I inserted one of these nifty “more” thingamajigs. So now, if you want to read all about the horror of the first day or so of R nightmare #1, you may click on “Read the rest of this entry,” below, and do so. Have fun.

It all began with that shoe on the wall.

You know that book? Wacky Wednesday, by Dr. Seuss, only under his (other) stage name, Theo LeSieg? So the concept of book is that the kid (I think it’s a boy, though it’s a מחלוקת in my house) wakes up to find his world inexplicably turned upside-down, or, that everything has gone “wacky.” It’s a what’s-wrong-with-this-picture book, wherein the readers are invited to search for and find  a certain number of “wacky” things on each page.

It’s great fun. Truly. Especially the part where your kids insist on finding ALL the wacky things on every page, and end up getting to bed half an hour late.

So the problem the protagonist keeps facing is that nobody else is aware of any problem. Over and over he tries to make others see what’s right in front of him, what he’s convinced is not a dream or an illusion, and they respond with statements that increase the boy’s despair (”Nothing around here is wacky but you!” “Nothing is wacky here in my class! Get out! You’re the wacky one!”), until ultimately he becomes scared and tries to escape. At that point he encounters the Mr. Roarke of the story, the only other one who’s in touch with reality — a police officer who gives him instructions on how to make things right again. (”Only twenty more things will be wacky,” he said. “Just find them, and then you can go back to bed.” Ah, Dr. Seuss….)

Ostensibly, like the  movie version of Dorothy’s trip to Oz, the entire experience is supposed to be a dream, though I confess I was well into my adult re-acquaintance with the book before I realized that. And indeed, we’ve all experienced similar dreams, I’m sure; dreams whose surreal and dream-like quality is apparent to ourselves even as we pass through, but those others who inhabit it are oblivious, and you are the only one who knows that it isn’t real.

I’m not sure what my shoe-on-the-wall was when R was sick. I just know that the entire experience reeked of them, reeked of the surreal and impossible, the sense that surely all these people were living in a different world than I. Was the shoe on the wall the fact that the rest of the world was supremely unaffected? That there was still traffic, and politics, and wars, and everything else? Why are you talking about something other than my child? Why are there still highways and a bridge between the hospital and my house? Or was the shoe on the wall the strange things people kept saying? “Severe.” “Dangerous.” “High-risk.” “Pleural cavity.” “Chest tube.” “Pericardial effusion.” “Pediatric cardiac ICU.” Or maybe the shoe on the wall was whenever I felt the first sign that something was off, that this wasn’t an ordinary virus, that it was taking too long to go away, that she should have been getting stronger but wasn’t, that she wasn’t dramatizing and really was, in fact, too sick to stand up or to go up the stairs, too sick to come with me to pick up her sisters. Didn’t want to watch TV. Didn’t want to eat. Lying on the couch without moving, lying in her bed.

“Taking care of babies is also important,” she assured me on Wednesday night, after she’d been sick since Shabbos. I was lying with her in bed and she said she wanted me to lie with her all night, “because when you’re here talking to me, I don’t feel my feelings.” She’s so metaphoric. Her twin would never have said it that way. So I told her I’d try to lie in bed with her during the day on Thursday, but that I might not be able to because the Boy and the Nephew would both be here, and she said “Taking care of babies is also important.” Breaking my heart. I’d spoken to the doctor that morning, and we still thought it was just a really resilient virus. Ha. Resilient, alright. So resilient, it morphed into such a psycho-case of Big Bad Pneumonia that my daughter’s left lung was the subject of grand rounds at Columbia Presbyterian. Or New York Presbyterian, or more accurately, Morgan Stanley Children’s Hospital. “Grand rounds? At Columbia? Whoa,” said my pediatrician friend, duly impressed. Heheh. Good thing Morgan Stanley decided to endow a super-nuclear-Neverland of a children’s hospital before the global meltdown. Otherwise they might not have been able to do it. Good for them, good for kids, and good for R.

Over and over they told us how Bad the pneumonia was. “With a pneumonia like this…” “Well, in really bad cases like this…” “Again, it’s really a very severe pneumonia….” “Her entire left lung is completely blocked off.” “Snowstorm.” Snowstorm, that’s what they called it, that’s what they called the image on the x-ray of all the White Stuff filling up her lung where air was supposed to be. When it’s just a little itty bitty pneumonia, there’s some white. One lobe? Two lobes? Definitely something about lobes. Then there’s some other madreigah, and then there’s this. I mean, whoa. When it’s a pneumonia like this, it’s a snowstorm. All white, no black and no gray. White white white. “No breath sounds at all.”

Why was I snapping pictures? [Ed note: I deleted the picture I put here originally. Seemed indecent to post it.] I mean, really. Who takes pictures like that? Who wants to record their child suffering? But I know why I did it. Because a picture is worth a thousand words, and I had none. There were friends waiting for updates, wanting to hear how we were, R and me. It was easier to send real-time images than to try to talk. I couldn’t talk. A picture is worth a thousand words, but as Wacky Wednesday came crashing down and I suddenly felt all the shoes on the wall, I couldn’t come up with any words myself.

I sat by her side and stared. Stared, in the quiet triage room at the local hospital, before they transferred us to Columbia. Tried not to cry. Her entire torso was rising and falling , heaving, as she struggled to breathe. Eyes closed. Cheeks on fire. “I feel so funny,” she’d whimpered that morning. The alarm bells had already been ringing, since Thursday afternoon. “This is beyond anything resembling normal,” G and I had said to each other. ”She should be better by now.” “None of our kids have ever had anything like this.” Dr. S had said to call if she wasn’t better before Shabbos. I knew already on Thursday. Had a lot of trouble sleeping Thursday night. And Friday morning we called. “Bring her in.” So we did. G did. I stayed at home, with the Boy. Two families coming for lunch. Ingredients. Needed to cook.

Did I start cooking? I don’t remember, but I don’t think so. Who remembers now? It was months ago. Friday, November 14 was the day she was admitted to the hospital. I don’t think I started cooking. I know there were ingredients, however.

So G called from Dr. S’s office, with total relief in his voice. “She has pneumonia.” “Pneumonia?” Has to go to the hospital for a chest x-ray, 60% chance they’re going to admit her. Admit her? Like with the bracelet, and the IV? With all the hospital whistles and bells? Since it was going to be Shabbos, we decided to bring her to the local hospital, so we could switch places, walk back and forth. She wanted me to take her. We canceled our Shabbos guests. We spoke to Babysitter Allison. I spoke to my mother, my sister, and who else? Who knows. So I took her. Carried her to the car. Carried her to the ER. Panic rising in my chest. Maybe it was just because I now knew it was serious, but it seemed she had gotten a hundred times worse since that morning. “She probably did,” Dr. S said later. “It’s clear that this grew extremely quickly.” So I carried her and it seemed worse. Her breathing was horrendous. Her face was on fire. She couldn’t sit up. Couldn’t hold up her head. She was groaning with every breath, in and out. Earlier that week I’d thought she was just whining. “Stop it, R.” She woke up during the night, over and over, asking for water. RS kept coming to get us when we didn’t hear her. “R is crying again.” But the water helped. I wonder why? Did her throat hurt? She’d said it didn’t. Over and over I asked her as she lay on the stretcher. “Does anything hurt you, Cookie?” She would shake her head and continue groaning as she breathed, as her torso moved, up and down, up and down. “She’s struggling to breathe,” my mother wrote her friends, after she flew in to see her. “It’s very difficult to watch.”

The nurse practitioner came in after they took the x-ray. “Her whole left lung is blocked out.” “Really severe pneumonia.” Maybe she used the word “acute?” I don’t remember. She said something about “at risk.” I don’t remember the context. “At risk of what?” I asked. “Of something bad happening.” I knew that was the answer. But the words were surreal. The whole experience made no sense. This day is not happening. This is all a dream. People are saying impossible things and I’m the only one who knows that there’s a shoe on the wall.

The nurse practitioner left (where?). I stayed there next to R, staring, watching her breathe. We were still in the triage room. White noise in my head, white as the lung on the x-ray. The impossibility and enormity and reality of what was happening. This was not going to be a take-two-of-these-and-call-me-in-the-morning. This was Bad. I could tell. Paralysis. The paralysis of my helplessness. Slowly, slowly, the truth descended, making its way from her lung to my brain. This is what you hear about. This is the moment I’ve been dreading since April of 2000, the first time I saw a positive pregnancy test. Something is going to happen to my child, and then the world will, quite simply, be over. There would be nothing else. There was already nothing else. Nothing but the baby inside me, nothing but the white lung and the groaning torso moving up and down.

A nurse came and said he was going to move us to the main ER, where they have better monitoring. “We’ll be better equipped to deal with it if something should happen.” What is he talking about? What is going to happen? Sitting silently by her side. I saw her skin change, goose bumps rise up on her arm, I suppose when something made her cold. I remember thinking, look at that, her body still works. Whatever makes goose bumps happen, that’s still working. Someone didn’t tell that system about her stopped-up lung. Made me think of people on life support, how their bodies keep doing things as if they’re alive, when they really aren’t. I watched the goose bumps rise, and her skin looked so alive.

They moved her to the main ER. Put stuff on her body. Nebulizer. Oxygen. Sticky things attached to wires. I knew all about those things from when I was in the hospital having babies. Two c-sections. I sat and watched. They made her sit up. “It will help her breathing.” She cried. “I want to lie down! I want to go to bed!” She begged me.  My heart was in so many pieces I couldn’t feel any pain. “I’m sorry, sweetheart.” She  couldn’t lie down. Lying down was the only thing she wanted, and I had to say no.

I don’t remember when it was that the doctor came. “We think we ought to transfer her to Columbia. We don’t have the resources here to take care of kids that are this sick.” Kids that are this sick. She’s one of those kids. She’s one of those sick kids. Some time earlier that day when we were still in the waiting room I’d seen it. She looks like a really sick kid.

Things got complicated. Shabbos had started. G was supposed to come at 8:00 to switch places with me. Now they were going to take us both to Columbia. I had to get word to him, somehow. Did I really? It seems to me now like I didn’t, really. Why should I break Shabbos just so he could know something? I think I had the breast pump with me. I had food with me, I know. From where? I don’t remember. I made kiddush, I know, sitting next to her while we waited. She said amen. Through the haze of her fever, cheeks on fire, eyes closed, begging to lie down, she was still concerned with doing the right thing, still responding automatically. I asked if she wanted grape juice. She didn’t. Challah roll? No challah roll. She’d eaten maybe two or three bites of food per day since she got sick. I went to wash. Whispered to her that I would be right back, that I could see her from the sink.

The nurse practitioner came to see how we were. She asked if I was ok. I shook my head and the tears started to flow. I clenched my teeth down as hard as I could to keep the howl of terror inside me from breaking free. “Don’t blame yourself,” she said. I was trying. But she didn’t get better. She hadn’t gotten better after a few days like she usually did. I’d called the doctor on Wednesday. We brought her in on Friday. But we’d known on Thursday. I remember I couldn’t fall asleep Thursday night. The shoes on the wall had already appeared. “You did nothing wrong,” said the nurse. I tried to believe that as I sat and stared and the enormity of the situation crashed down on me through the white noise.

Everyone in that hospital was out of their element. They were so uncomfortable having her there. Couldn’t wait to get rid of her. They didn’t even have a scrub shirt small enough for her. Not an oxygen mask either. The one they brought practically covered her whole face. She’s too little. She’s too little to be here, she’s too little for you. They brought her Tylenol (or Motrin? or both?), they gave her oxygen and nebulizer treatments. They started her on two (three?) broad-spectrum antibiotics. They took the right care of her, I know they did. But they knew she was over their heads. They wanted her out.

I went to the desk. “Can you please call this number?” I told the nurse Allison’s number. “Please tell her to find my husband and tell him that they’re transfering us to Columbia.” G was at shul. Everyone was. It was a special Shabbos, and everyone was eating dinner at the shul. In the meantime I prepared to go. What I did, I don’t remember, but I prepared, somehow.

A few minutes later the nurse came in. “Your babysitter called. She said your husband is going to call you on your cell phone.” Whoa. Now that’s serious. “Halacha in action!” someone at the shul told me later. They all saw him using the phone. I remember when I was a kid walking with my mother on Shabbos, before there was an eruv in St. Louis. I fell and skinned my knee and screamed and cried, and she picked me up and carried me home. I still remember, through my tears, being deeply impressed. “Wow,” I remember thinking. “This must be an emergency.” And so it was now, as G called me on Shabbos and I answered my phone.

Did I tell R that I would be on the phone even though it was Shabbos, because it was an emergency? I think I did. I don’t remember. The kids all know that when someone is very sick, the only thing Hashem wants is for us to do whatever we have to do to make them better. G told me we should switch places so I could be home with the baby. That Allison was going to drive him to the hospital. She would drive me back, since she was driving herself back anyway.

The paramedics arrived. G wasn’t there yet. The Motrin was beginning to work a little. R’s fever was down and she was more responsive. I told her everything that was happening. She was completely unfazed. The most remarkable thing about her, the entire time, was that. She was outrageously brave, unmoved by anything, though she understood it all. Nodded her understanding when I explained things, nodded her assent when asked. Not every time, but mostly. Now these men were going to move her to a different bed so they could wheel her to an ambulance, and the ambulance was going to take her to a different hospital where they know more about kids. She nodded. G and Allison arrived. I asked R if she wanted anything to eat. A granola bar? “We have chocolate chip.” She was already on the stretcher on her way to the ambulance, and she asked “Peanut butter chocolate chip or regular?” A measure of relief moved inside me, stifled by the fear and knowledge of the reality, but still. Some tiny shred of relief. She’s still herself. “That’s a great sign,” our friend the pediatrician told me, when I got to the shul. “Wanting food is a great sign.” Her husband, also a doctor, waved his hand in dismissal. “She’ll be fine.” I knew it. I did. Of course she would be fine.

“Regular chocolate chip.” She took the granola bar. They left. Allison and I walked back to her car. I saw the ambulance pulling out. Weeks later, R asked me if the siren had been on when she was in the ambulance. “I don’t know, Cookie. I wasn’t there, remember?” “But I saw you walking outside with Allison.” How did she remember? Even in that state, as sick as she was. She was aware enough to see me through the ambulance window, and to remember the scene weeks later. She has an excellent memory. She always has. [Ed. note: Oops. Not anymore.]

Allison brought me back to shul. I left my things in her car. I went into shul. Dinner had ended, everyone was bentching. It was quiet. My niece’s voice suddenly rang out. “Hi, Aunt Voodoo!” (That is indeed what she called me for a brief period.) Every pair of eyes in the room shot towards me. Comic relief. I laughed out loud. Bentching ended. People gathered around me. I gave the update. I felt strong and in control. I talked at length with my pediatrician friend. I brought the other kids home. Put the baby to bed. Sat with the other two girls reading books, all three of us acutely aware of the gaping absence of R and G. “It’s just not right without R!” the first-born lamented. YS was less affected, on the outside at least. I actually fell asleep. We went to shul in the morning. They made a משברך but I missed it. Heal us O Lord and we shall be healed. Was that when I realized the strangest thing of all, that when we davened for her, asked Hashem to heal her and identified her by name, that her name was… my name? When someone is sick we say their full name, and… their mother’s name. Is it supposed to evoke God’s mercy by calling His attention to the mother’s love? Probably. I don’t remember. Until this point if her name had ever been mentioned she was .ב.ר. בת הרב ג.א; now that she was sick we called her .ב.ר. בת מ.ש. Those are my initials. That’s me, I’m the mother. Since the 5th grade I’ve been davening for sick people and saying their mother’s names. Perhaps it’s because I was so young when I was introduced to it, but saying someone’s name when they’re sick has always carried some level of drama for me, a feeling of seriousness and intensity. I remember the first time I had a friend whose child was sick; in fact it was the Eldest of my BFFZ. Eight days after he was born, when the bleeding didn’t stop, and I said his name, and her name, in my prayers. And let me tell you, to my fifth-grade spiritual mind, there’s nothing quite like that particular shoe on the wall, appearing normal to everyone else, and only you can see how wrong it really is.

We went down to the kiddush and were flooded with caring and concern. I was brave and strong and in control. “How are you doing?” asked at least one wonderful person, a mother like myself. They cared so much. I get choked up again thinking about it now. “Our little girl is sick,” they told visitors. I heard about that later. “Our little girl.” It’s true. My kids are the shul’s, and I never doubt our blessings for a moment.

I had no doubt she’d be fine, of course. After all, we had a diagnosis, a fairly routine and manageable one at that. Pneumonia; sure, it’s no good, but people get it all the time. “Can you die from it?” RS gasped in fright when we told her on Friday what was happening. Ever the dramatic one, tied for first-place with R herself for morbidity and imaginative terror. “Only very old people die from it,” I assured her, while knowing that strictly speaking, I didn’t know if that was true. I also knew, though, that there was no reason to think R wouldn’t be fine. “Very old people die from it because their bodies are so much weaker. But kids are very strong, and they know exactly what medicine to give her, so it’s just going to take a few days for her to start getting better.” A few days. 24 hours for antibiotics to work, and these were going to be IV antibiotics, which means they’d work super-fast.

But still. Over Shabbos I was strong but I was scared. RS and YS went to friends for lunch. I went to my sister’s and waited and watched the clock. I read the parsha. I thought of things I could do, would do, before she got better, after she got better. I imagined the phone ringing and tried not to think what news I would learn. What had taken place since the paramedics wheeled her away with the granola bar in her hand? I’d spoken to Dr. S. She said they’d have to go through the whole ER process all over again. “You’re in for a long night.” Would she have a room? I remembered the summer that G had viral meningitis. He laid on a stretcher in the ER at NYU Hospital for three days before he got a room. Would R still be lying in the ER, with her body heaving up and down? What would G say when he called?

RS was ever optimistic. “Ima, did R die?” she asked me nonchalantly over Shabbos. “What if Abba calls after Shabbos and tells us that R is dead?”

“RS, don’t be silly,” I said. “She’s not going to die. They know just what to do for her and she’s going to be sick for a while, but she’s going to be fine.” Right? Meanwhile, in my mind a voice whispered “What if G calls after Shabbos and tells us that R is dead?”

As the end of Shabbos approached I felt panic rising in my chest. The Day of Rest was ending and reality would be crashing down in minutes. There was no more ignoring, no more break. The instant the minute ticked past I dived for the phone. G didn’t have his cell phone, of course. I called my home voice mail and changed the greeting. “Please call me at my sister’s. If you don’t have the number, leave a message after the tone.” The phone rang minutes later. It was my mother-in-law with R’s room number. She’s not dead. “G can’t call your area code from the hospital so he called me. Call this number.” I did. “She has a chest tube. There’s fluid in her chest cavity.” Later, we got the terminology straight, and learned that it was her pleural cavity, the space around her lung. “They put in a tube to drain it out. 50 cc’s came out right away.” 50 cc’s?? Jesus f-ing Christ. “They took another x-ray and did a CT scan, that’s how they saw the fluid.”

“Is she in pain?”

“Not really.” More words. “Fever. Motrin. Surgeon. Did the procedure in the ER. Infectious diseases specialists. Once they identify the bacterium they’ll know what to do. Chest tube has to stay in until all fluid out.” Etc. Etc. I don’t remember what else.

—————————————-

And that’s all she wrote.

I’ve got others. Other half-written things that I wrote at other times. Some of it repeats stuff I said here. I’m hoping to post it all in the next week or so. The anniversary is almost upon us, as is the SuperStroke appointment, and I want all of this done with, so I can decrease the baggage we bring with us to the next phase.

Tags: Kids