Tuesday, May 12, 2015

Day 1,703: The Other Side

The first time I spent the night in the hospital, I was 8 years old. It stretched into a week, as my neurologist insisted on using me as a guinea pig of sorts rather than admit that I was having a toxic reaction to my anti-convulsants. By that time, I was fairly used to doctors and hospitals because of my years with epilepsy. I still resisted with all my might when I realized I had to go back to the hospital six months later after the car accident I barely survived. As I rode in the ambulance, I said "I don't want to go back. Can't I just go home?"

But that's me. Me, not my kid. I've gotten used to things for myself that I could never get used to for my children. I recognize that that is one kind of luck.

My kids are very, very healthy. Lenny caught every illness known to man, including Fifth Disease, Hand, Foot, & Mouth--you name it, during the first two years of her life when she was in daycare. And then--she was like a tank. Even when the rest of us were sick, she was healthy as could be. Augie has been really healthy too. When they both caught a stomach bug earlier this year, we hardly knew what to do with ourselves. Lenny hadn't missed a day of school in over two years.

Fast forward to this past Friday. Everyone was fine at dinner. Augie went to his swimming class afterwards and Gabe went to the grocery store. On these Friday nights, if Gabe and I don't have date plans, Lenny usually reads in her room while I read on the couch in the living room. The house is quiet and we don't feel the need to converse; it's a calm, relaxing way to spend an evening. And so it was for a while this past week. All of a sudden, into the silence, came the sound of Lenny bounding down the stairs. She started screaming: "Mom! My throat really hurts! I think I need to go to the doctor!"

I stared at her. Where did this come from? I took her temperature--no fever. I asked her some questions. I offered her some pain medicine and told her we would get her an antibiotic in the morning if she wasn't better, as we had recently learned that a few of her friends had strep throat. I put her to bed. I was puzzled by the suddenness, but not overly concerned. The next morning, she wasn't better. She had a low grade fever, but only for a few hours. She was vomiting. Strep, we thought. We got the script from the doctor. She was telling us that it hurt to breathe--specifically, that it hurt in her throat. She felt it was easier to breathe after vomiting. I was worried, at that point, but wasn't sure what it could be. Gabe was out taking care of some things for most of the afternoon, and Lenny took a nap. I checked on her and saw how she was breathing. Her breath was short and labored. She looked frail. I texted Gabe and told him she needed to go to the hospital. He seemed dubious but came home, we called some emergency rooms, decided on the one that was both closest and had no wait time. We both expected her to get her vitals checked and come home.

Two days later, she came home.

Within a short time of arriving at the hospital, Gabe texted me to tell me she was put on oxygen. Her heart rate was as high as 150 beats per minute. Her blood pressure was high. She was sent for a chest xray. Meanwhile, Gabe sheepishly told me that in his haste, he forgot his wallet and therefore didn't have his insurance card. I had to pack Augie into the car and take the wallet over. I still did not pack for the night; I just didn't believe she'd have to stay. Gabe had texted me a picture of Lenny with the oxygen mask. He told me that she had requested to stay in the hospital: "I think I should stay here. They have machines that can help me breathe." She was telling us, telling all of us.

Once at the hospital, things got strange. A woman pulled me aside as soon as I got to the room, and she didn't let me enter. "I need to talk to you." Oh shit, I thought. There's something very wrong and she just doesn't think Gabe can handle the news. Or, he's acting like a crazy person and she won't talk to him. What is it, I asked? "Well, I need to have you sign these forms." Um, ok, but it's his insurance. She insisted that I sign everything. She whispered to me (it's true--she acted as if we were sharing a secret) "I always ask the woman. I know you are the ones who manage the finances." What the hell, I thought. What if I hadn't shown up? What if she didn't have a mother? Was she just going to stand there and assume my child's father was an idiot? Now granted, he had forgotten his wallet, but I gave up the detailed focus on finances back with my first round of chemo and I've let him handle that stuff for years, especially after chemobrain. I was getting very agitated and then realized I needed to just ignore this woman and get into the room.

I talked to Lenny, and she seemed to be in ok spirits, considering. Augie ran around and it became clear he needed to not be there. I took him home and put him to bed. Within a few hours, Gabe texted me to say she was going to be admitted. She was not getting better. We were both in disbelief, as she had been fine just the day before, and now she was so sick she needed to stay in the hospital. We had to make some decisions. I texted the next door neighbor who babysits for our kids and I went onto facebook to update the interwebs on what was happening. Within minutes, I had offers to help watch Augie while I went to the hospital.One friend was on her way out the door when the neighbor's mom knocked on my door. I had never been so happy to have social media and cellphones at my disposal. I ran around the house, packing clothes and stuffed animals and books and toothbrushes. I left my neighbor in my house with my sleeping son and went to drop off supplies for my husband, not me, to stay the night in the hospital with our daughter.

We decided it should be him, not me, for one reason: he can sleep anywhere, and I can't. That was it, nothing more or less than that. Upon arrival, the same woman came at me with forms to sign and I had to say "Look. He's staying. Not me. I will sign, but he's the one who should've received this form." She seemed both surprised and, to be honest, judgmental of me for not staying.

Luckily, momma don't have time for that kind of crap.

Lenny was crying under her oxygen mask, realizing she had to stay, that she couldn't go home. She was scared. It broke my heart.

And that is what always breaks my heart--fear, in myself and in others. I can handle my own pain and I can even handle my children's pain, though it is hard to witness. I can use my practicality to get through a situation. But witnessing fear will get me every time. Fear is just the mind's way of admitting to a stark reality that we normally don't allow ourselves to admit to; fear is always fear of death, always, no matter the form it takes. Fear means the person knows what is coming and wishes she didn't know. And you cannot assuage fear; you can only rub her back and say "I know, honey, I know. But you need to be here, because you're sick. You need to be here to get better."

Eventually, she was given a room. And then I was glad to be there--I asked the neighbor for some more time, because they asked for all this extensive medical history that Gabe might not have been able to answer. I got frustrated when they asked what Lenny's birth weight was and I answered 6 pounds, 3 ounces. Was she full term? She was a week early. But I was two weeks late and weighed six pounds six ounces. We are not big people. She is not sick because she is little. The child is never sick! And the nurses glanced at each other as if I was one of THOSE. When Gabe said she had been prescribed Zofran (as a precaution--she hadn't taken any) for vomiting, and I said I would rather she didn't take that, the nurse looked at me with pity and explained that Zofran is well tolerated by everyone. Well, not by me, I said. I should know, because of chemo. I needed these people to know that I was almost as comfortable in hospitals as they were, and was not afraid of the environment nor convinced of their superiority. No one can advocate for a grown woman but herself in a medical situation, and no one can advocate for a child but an adult. Now, I liked the pediatrician, though she was very formal and clinical, but I made sure to ask a lot of questions before going home. I felt satisfied with her care. I finally left.

And then it began, the hours of texting, the back and forth, the gin, the restless sleep, the acknowledgment that the breast cancer walk that you had raised money for and recruited team members for the next day was only relevant because it required you to park blocks away so you could leave your house in the morning to visit your daughter in the hospital.

I did not know how to sleep in the house with half my family not in it. I'm the one who travels. I'm the one who stays in the hospital. Everyone else sleeps at home. If Gabe is not in bed with me, it's because he's staying up late, putzing around in the house somewhere. It was strange to think that he wasn't there at all. And Lenny? She has only had one sleepover in her life. Augie and I ate breakfast quietly, which is rare for him. He was cooperative, also rare. Even though it was Mother's Day, other families offered to watch him, as he was not allowed in the pediatric unit where Lenny was the only patient.

By the time I got there on Sunday morning, we knew Lenny had pneumonia. Specifically, atypical viral pneumonia. She had some evidence of a UTI and potentially strep throat as well, though the rapid culture was negative. How the hell does all that happen all at once to a healthy child, I asked myself.

And then, then I hated myself. I am the last person who should ask that question. I am the last person who should have doubted Lenny's insistence that she needed a doctor, yes out of the blue, on Friday night. Aren't I the one who was smart and healthy and curious who nonetheless was having 100 seizures a day at age 6? One day I was fine, the next I was having CT scans of my brain and being prescribed harsh medication and learning that life as I knew it had changed. One minute I was walking home from school, the next minute I was almost dead and would need months to learn to walk again and would face lifelong physical limitations from that car accident. One minute I was working out and nursing my happy baby, the next I was diagnosed with an aggressive cancer. I of all people know that health is random and fleeting and can be taken from you at any time.

My daughter knew and I should have listened to her.

She could have stopped breathing in her sleep. It was physically painful and next to impossible for her to breathe. Once I understood this, I could handle what needed to be handled. Gabe got emotional, didn't want to watch them fail to place her IV, but I could handle all of that. It needs to be done, that's what she needs. He was all, my poor baby! and I was all, let's go. Let's take care of this. He was pacing the halls and nervously not knowing what to do with himself while in the hospital, I was playing solitaire and eating the leftover lemon ice. Lenny seemed to prefer me being there during the day, and her dad being there at night. That's not entirely true, in that she shrugged and said "doesn't matter" when she was well enough to answer us when we asked who should stay with her.

Some mothers would not be able to stand not being in the hospital with their child. That's not me, though. I hope my kids like us both the same, even if for different reasons. I hope my daughter doesn't see her father as inept and expect me to be the one who has to nurture her, because I would hope she would know we both can and want to do it and have chosen each other in part for that reason. I want my son to know that while his sister was sick, one of us would figure out how to care for him.

It took longer than we expected for her breathing and heart rate to regulate. My Mothers Day was a mess and all I wanted was for my kids to be home, to be together. Augie had wanted to bring me breakfast but didn't know how to do it by himself. Lenny had wanted to see her friends at the breast cancer walk. Gabe wanted to be romantic for me for Mother's Day.

Oh well--the best laid plans.

People were so worried, and I felt the need to give updates when possible. When I walked out on Sunday morning, our neighbor opened the door and came straight over asking "how's Lenny?" We have great neighbors. Three of their children have watched our kids regularly and we have leaned on them for emergencies. But we don't talk much, we don't hang out together. I've talked to this man a handful of times. I nod to him when he's mowing the lawn and talk to him if we have managed to catch the same train home. As I told him the story, he asked how Gabe was doing. I told him he was restless, worried about doctors sticking needles in his daughter. He said "poor guy. He must be a mess. He can't even sit still here, in the yard. He's always running around like crazy. I can't imagine him in the hospital while his little girl is in there."

And how could he know that that, and only that, is what would make me cry?

I came in the house and wiped away the two Katy-style tears. My kid was in the hospital and I was scared and sad for her. But I didn't cry. I didn't cry until this man made an offhand comment that let me know that he sees my husband the way he is, as that manic stir-crazy somersaulting dad, that he could picture him pacing the halls in the hospital before I told him that's what he was doing. The way that people see people, the way humanity seeps in and leads to a moment of empathy and grace--it takes me by surprise and just gets me every time.

And that moment of clarity led to another. As I thought about my neighbor, I suddenly was brought back to something my mother said to me right after my recurrence, when she said she thought she might want to talk to a therapist about my cancer. I understood, told her it made sense, but this was something that was always possible, this was a terrible thing but not a surprising thing. She said she knew that, but knowing the reality of things didn't make it easier. She said she had experience with worrying about me and my health and my life but that didn't make it easier. After all, she asked, didn't I understand? She said: "You're my Lenny."

And I got it, but I didn't, but now I do.

I've gotten used to what I've needed to get used to in my life. I can't get used to the notion that my kid could have stopped breathing or that she will ever stop breathing, even though I live in the same real world as you.

Lenny's home. She can breathe. Her heart is working. She can go to school tomorrow. She is the same. Hell, she was the same in the hospital, asking me to bring her homework even though she couldn't use her hand with the IV strapped to a board taped to her fingers. I wish it had been me, not her, in the hospital, as it usually is, but wishing something doesn't make it so, and it doesn't help. I can see that now--the way my mother saw me as a child. I wish I didn't have to see it, but I do.

Lenny's home.

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