Deliberate Happiness

If you scroll through my past posts, you can find anger and frustration. Lots of it from Shawn and from me. As recently as last Monday, I raised my voice here. Loudly. We were in the ER. At that time, and now looking back, I believe my anger was justified. Other times, in retrospect, my anger was not justified. Shawn’s anger was always justified. He has been dealt a bad hand and it took some really good people a really long time to figure out what to do with that. If anyone has a right to be angry, it’s Shawn.

During radiation, Shawn transitioned out of anger and into something else. Happiness? Hope? Relief?

We arrived at CHOP on Monday morning to begin Shawn’s chemotherapy. He would begin in the clinic and move to the inpatient floor as space and time allowed. Our primary doctor in neuro-oncology was out of town at a conference so we’d planned to see an attending that we have worked with most in the past. But she was unavailable so we saw a different attending. She was amazed by the change in Shawn. We have worked with her, too, but not since Shawn turned happy. And also not since Shawn turned healthy. I mean, other than the cancer. Which is still there. Waiting. Silently. This doctor used that term. Silent tumor. It’s there but not there. It’s there but we can’t see it and we never have, not as a primary tumor. Shawn would call that a Ghost Tumor if we asked him for a name.

That morning the oncology clinic was overtaken by a foundation called Michael’s Way. I can’t tell you much about this group other than that, like many organizations, they appeared in our lives at the exact right moment when we didn’t even know we were looking for them. We checked in at 8:55AM, a few minutes before our scheduled arrival time. People were wheeling in carts of pizza and soft pretzels and cookies and bottles of water and juice. Professional photographers were scoping out their space. Shawn looked on excitedly as a Giant Connect Four game was being set up. “Can we play that?” he asked. “We’ll see” was the only response I could provide. Promise nothing and hope for the best has become my only answer in pretty much every situation here.

My goal for myself for this admission was to not be angry. Actually, my goal was to not show anger. Time after time I’ve begged myself to not be angry. To not overreact. To go with the flow. I’ve failed every time, including last Monday in the Emergency Department. When I reacted with anger at a situation that a supervising nurse practitioner ultimately apologized for and wrote up some sort of report and told me that they are working to try to resolve the problems that caused this particular incident, I watched Shawn as he sadly asked me to stop arguing. The look on his face reminded me that, again, my reaction was justified but that I was right at what cost? What did it fix? What did it harm?

I decided that I would fake happiness. Not in an artificial way, although it would probably be somewhat plastic. I can’t usually control how I feel. Most people can’t. At CHOP I certainly can’t control most of what happens to us. And not feeling angry is probably going to take some more time. But I decided that I can control how I act and react.

The first two days went smoothly. Way more smoothly than my nightmares had anticipated in the weeks leading up to this. I was in a groove of faking happiness and it wasn’t even all that hard. The oncology floor is unexpectedly calm and quiet. Those haggard looking parents and grandparents I’d previously observed in the elevators getting off on Floor 3 now just seemed to be people doing things in a very matter-of-fact way with their mostly happy looking kids. Parents getting off on Floor 3 (with me) now seem less haggard than when we lived on other floors. Less stressed. Less angry.

The Oncology floor is, so far, pretty quiet. Boredom has been our biggest complaint. He is experiencing some side effects of the chemo (vomiting and diarrhea) but so far it’s been less than he’s had in previous admissions when he was so sick and they couldn’t figure out why. Back when we were treading water. Shawn has been relatively unimpressed with chemotherapy so far. “The external shunt on the PICU was WAY worse!” he tells me. We played bingo. We played games with volunteers. The same people he used to grunt at and shoo away are now fun.

This morning, day three, I finally had a chance to employ my Don’t-Show-Anger plan. If I were a teacher at this, I’d give myself a C-. Passing, but barely. Shawn got angry shortly after his breakfast arrived. I don’t know why and neither does he. A bacon and ham omelette ultimately ended up on the floor and walls like so many meds and food before. I raised my voice. I yelled at Shawn. The nurses came in. They closed the door. They told me it was ok. The doctor later told me that it might be a reaction from the steroids they’re giving him to help with the potential reactions to the chemo. I was embarrassed. We’ve been here before, without the drugs. I’m still so unclear about discipline issues at the hospital. How to react. What to do. How it’s different than at home. How to parent here in this artificial parenting environment. If there’s no manual for how to be a parent in the outside world, there’s certainly no guidelines for what to do here.

I’m hesitant to write this, because this is the kind of thing that when everything goes to shit in a few hours I’ll regret and want to come back and retract, but so far this has been one of our easiest admissions. Little drama and even less trauma. My current internal question for myself is – has this admission been easier because I decided to be less angry or am I less angry because this admission has been easier?

Happy And The Last Day Of School

The kids finish school this week. The last day for the district is Friday. We had only one or two snow days this year so they will finish as scheduled, unlike the last few years. Lilly’s last day is Friday. Shawn will finish on Thursday since he’ll be in surgery at CHOP on Friday. He missed the last day of school and the first day of school. In between those those days was an unusual first grade experience.

Lilly is “graduating” from fifth grade. No more elementary school for her. As of Saturday, she will be a Middle Schooler (god help us all!) although the kids call the time in between grades “summer grade” rather than placing themselves in the next higher grade, like I eagerly did when I was a kid.

Shawn is finishing first grade. Well, sorta. Shawn didn’t attend more of first grade than he did attend. I lost count and can’t easily look it up but I estimate that out of 180 days that the kids were supposed to be AT school,

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Lilly, Shawn, and Miss Johnson

Shawn missed at least 100 of them. Probably more. But in late May, sitting on the floor in our living room with his home-instruction teacher, Miss Johnson, Shawn officially completed the assessments that indicate that he knows what a first grader in our school district is expected to know. I admit, I’d been concerned about this. Shawn had been a smart and interested but average student throughout preschool and kindergarten. He wasn’t “advanced”. This stuff doesn’t come naturally to him. He needs help to learn. He needs school. And he wasn’t there more than he was there. There were weeks that went by that he didn’t even brush his teeth or eat, let alone do anything academic. But here he is, finishing first grade.

In retrospect, Shawn’s earliest obvious symptoms showed up the first week of summer vacation last year. I took a week off from work to hang out with the kids and on Monday we set off to explore caves and coal mines in central Pennsylvania but Shawn got sick in the car while getting gas and breakfast less than a mile from the start. We went back home. The first of a series of “car sicknesses” and “stomach bugs” that would follow him throughout the summer. The vomiting that in mid August would still cause me to say “at least we’re getting the sickness out of the way before school starts in a couple weeks” and eventually take him to his pediatrician by the end of the month because something seemed really wrong by then. By the second week of the school year, we’d begun our CHOP adventures. It would be almost seven more months until we figured out what was actually wrong. Shawn would become very angry during those months. He would respond well to only one category of CHOP people – his teachers.

As the admissions piled up in September and October, I diligently called the school to report each absence and sent in the Discharge Papers and the Return To School notes signed by a doctor. I always asked to pick up Shawn’s homework with the intent of keeping him on target with what his class was learning. Maybe not all the way but as best as we could when he was feeling ok. We practiced spelling words and did math problems and read books from the play room on 9 South when he was feeling ok.

One day while I was out running at CHOP in October, I got a phone call from his school. His homeroom teacher, Mrs. Klein, and principal, Mrs. Gregitis, were calling to discuss a more long term plan, the kind that they create for kids who are out for extended periods of time. I slowed to a walk and talked with them. “Don’t worry about the homework,” they said, “it’s intended to reinforce what’s being taught in the classroom and he’s not IN the classroom.” They gave me some things to focus on instead. We initiated the process to start hospital instruction.

Later that month, during Shawn’s longest straight admission, he began working with a hospital teacher, Ryan.IMG_0507 For the first time at CHOP, Shawn was engaged, responsive and happy. He looked forward to each day’s hour with her. She told us how wonderful it was to work with our school district, how responsive they were. When we went back to CHOP inpatient in January, I was disappointed to find out that Maria would be our new teacher, not Ryan, since Shawn liked Ryan so much and he responds best to people he already knows. But he instantly loved Maria, too. He loved all his teachers and I began looking forward to it as the time that Shawn would be happy. When Shawn refused to cooperate with the doctors, I told them that if they want to watch Shawn’s speech, movements, and behavior, come watch him when he’s with his teacher. They’ll see everything they are looking for.

 

 

By March we knew that the root of his problems was cancer. A cancer diagnosis opens a lot of doors for a sick kid that being undiagnosed does not. One of the social workers asked if Shawn might be interested in the Monkey In My Chair program. When we explained to Shawn that it means that a big stuffed monkey would sit in his seat at school when he wasn’t there, he excitedly said yes! The monkey came in the mail a couple weeks later. Shawn named him Happy.

It was a terrible year filled with numerous hospital stays, a lot of pain and sickness, and, well, eventually a cancer diagnosis. Childhood probably doesn’t get much shittier than all of that. But other than his family, his teachers were the people he loved the most throughout this year. Even when he pretty much hated everyone else.

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Shawn with Mrs. Klein and Happy on his last day

 

 

A Tumor Is A Thing

A.K.A “The Best Bad News There Is”

In the absence of a condition or disease to google or seek out support groups, I’m left with… nothing. Nothing to google, no parents or former patients to talk to. Nothing. So eventually I began to look for the emotions themselves. What does it feel like to experience a deep void? What does it feel like to be in limbo? What does it feel like to care for a sick kid? What does it feel like to lose a child? What does it feel like to be a primary caregiver of someone with a serious illness? If I can’t seek comfort from people who’ve been exactly where I am, maybe I can seek comfort from people who’ve experienced the same emotions that I am experiencing, regardless of their actual circumstances.

It doesn’t take all that long to find those people, if you start looking around. Exactly how I started looking, I can’t say. I’m not actually sure that I did. I think I just let down some of my guard. I think I began writing and talking in a way that allowed others who have experienced those types of emotions to come to me. And they did. People who’s children died as children. People who’s spouse committed suicide. People who experienced miscarriage and due to a variety of circumstances came to the realization that they will not become parents of living children. People who grew up with siblings with serious and chronic illness – the unsung “CHOP siblings.”

I intended to write an essay about that topic – those emotions and how they play out in our lives. My life. And I started to. It’s about half written. And I might finish it at some point. But then this happened…

March 16, 2016

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Biopsy Day! I’ve been waiting for this day for months! We’re finally going to go in and try to grab one of the nodules. It was our first planned CHOP admission after 13 ER admits. Last night I spent two hours packing the same stuff into the same bags that I usually throw together in 10 minutes before our drives to the ER at the last minute. I couldn’t decide if it felt like Christmas Morning (it’s here! It’s finally here!) or how it might feel the night before a family member goes to prison.

 

This surgery carries some risks. The surgeon has to cut through bone and then she had to cut something off his spinal cord. Not trivial stuff. She said that one of the biggest risks is that she won’t be able to find anything. That we’ll cut him open, beat him up some more, and do all of this and get no new information. But we have to do something.

8:30 AM

I’m in the surgery waiting room. I’ve written before that this is a place in the hospital that I actually like. There are lots of emotions in this room. Here’s what’s happening right now:

  • A father is entertaining two young kids with iPads, puzzles, juice drinks, and games. Their sister is having some sort of routine procedure. They’ll be going home soon. The father told them that they can sleep on the car ride home. The kids set up a travel doll house and began making up stories.
  • A surgeon just told a couple, who came in at the same time as us (I recognize the stroller, and the kid’s first name from the pre-op waiting room) that the surgery went well with “no surprises”. He gave them some details that I couldn’t quite hear, told them that they can call his office day or night and talk to a person if they have any questions, and when to schedule a follow up appointment. They looked relieved. After the doctor left, both parents took to their phones and began texting or emailing or blogging or Facebooking or something, I have no way of knowing exactly what they were doing. But clearly they were communicating the information about their kid’s surgery to other people.
  • There’s a couple standing by the coffee machine hugging each other through tears in total silence. They aren’t making a single sound but they’re clearly crying. There are places in the hospital that you can go if you want to be alone (I know, I’ve found them) and there are signs on the walls in this room letting parents know to tell the front desk staff if they want or need more privacy. But that couple doesn’t seem want more privacy. I think they actually have privacy in the sense that I don’t think they even notice or care that there are other people in the room.

3:30 PM

The neurosurgeon found a tumor this morning. A tumor is thing.

As she was telling me about it, I went blank. I stared at her, memorizing her face, how she penned her eye liner, the shape of her nose, telling myself to focus on the words she was saying because those words are important. I will want to know this information.  It wasn’t because I was devastated by the proclamation of a tumor. It was because I was relieved.

A tumor is a thing.

A tumor exists in space. It’s a tangible thing. It can be touched. It can be examined. It can be biopsied. It can be removed. It’s unlike emotions in that sense.

Well, except that this one really can’t be removed. It’s entangled and glued into the nerve roots in a way that the surgeon said she hasn’t seen before. But no matter, she cut out as much as she could and it’s likely that pathology will be able to give us a diagnosis within the next few days. And she was confident that there was no permanent damage to the nerve roots.

There was tangible relief as I talked to a succession of people. Elated relief. Celebratory relief. Several members of “The Team” came by throughout the afternoon and evening, some clearly on their way home (backpacks and jackets on) but they’d heard the news during the day and wanted to check in, others because I texted them and asked them to come. “The best bad news there is” his current primary doctor in neuro-oncology said. “A tumor is a thing” another neurologist said, while warning me not to get my hopes up TOO much but acknowledging that we should allow ourselves to feel encouraged and hopeful by this.

Throughout the day I’ve been seeing people here who recognize me and me them and we say hello, sometimes by name, and we chat for a few moments. Doctors, nurses, housekeeping staff, Shawn’s hospital teacher, the woman from registration, cafeteria employees, you name it. CHOP used to seem so big. Now it seems so intimate.

I’m not so naive as to believe that if we’re right about this, that the relief won’t quickly turn into a new type of stress and problems. This will still get worse before it gets better, no matter what the outcome of today’s procedure turns out to be. The pathologists will provide the actual diagnosis, and it’s not a done deal, but there’s a better than average chance that we will have a diagnosis and a treatment plan within the week. And those are also things.

 

Liminality

I majored in anthropology in college and then went to graduate school for the same. I was primarily interested in biological anthropology, although there was no such differentiated major as an undergrad. At that time (and probably still now, although I don’t know, I haven’t paid attention for over a decade) the “four field approach” was key. Every anthropology student at all levels had to be proficient in cultural, physical (biological), archaeological, and linguistic anthropology. Every grad student had to be able to teach all four at the intro level. As an aspiring academic, I did just that. I even taught at the medical school as a lab assistant in the gross anatomy lab for a couple years, a thought that crosses my mind every now and then while looking at the usually 20-something year old medical students and residents and even the attending physicians and look up their bios and do the math. Were any of these people ever my students? Probably not. CHOP doctors don’t generally come from that school. I know because I read their bios. Medical school is probably its own liminal state.

I’ll skip the discussions of Victor Turner and the origins of the term liminality. I cannot discuss the theory. This is not an academic paper. I couldn’t write one of those anymore if I tried. I’m very far out of the academe. This essay is about my own liminality, and Shawn’s, as we are experiencing it right now.

So lets just stick with good old wikipedia for a definition. Because we’re being intentionally non-academic. And it works.

Liminality (from the Latin word līmen, meaning “a threshold”) is the quality of ambiguity or disorientation that occurs in the middle stage of rituals, when participants no longer hold their pre-ritual status but have not yet begun the transition to the status they will hold when the ritual is complete. During a ritual’s liminal stage, participants “stand at the threshold” between their previous way of structuring their identity, time, or community, and a new way, which the ritual establishes.

My academic friends have used this term more than once when reading my blog posts and when we’re chatting about what’s going on. My elevator post sparked the most discussion about the topic. Because what can be more transitionally ambiguous and disorienting than being literally in between floors in a pediatric hospital? There were times that I got off on the wrong floor or pushed the wrong button simply because I was distracted and couldn’t remember where I belonged on that day or hour.

I’ve also told people that when we’re at CHOP I sometimes think that this is what a foster kid might feel like. No matter how spread out we might be in a room there, if they tell me we are moving rooms or floors, I can pack all of our stuff up into two bags in less than five minutes and carry it to wherever we’re going next. And sometimes I have to do it faster than that.

The current plan involves trying to keep us at home as much as possible so that Shawn (and presumably the rest of us, too) can live a “normal life”. But even home doesn’t feel like home. Bill and Lilly physically moved us into this house in October while Shawn and I watched via text messaging and FaceTime. And in this house, we sometimes have a lot of fun. But often “sick” takes over. This house is good. It’s our home. But it’s not our “normal” lives. And we lost our cat.

This week I was CCed on a letter from Shawn’s primary neurologist to his primary care pediatrician, summarizing an outpatient visit but also telling her that Shawn will now be followed by a doctor in neuro-oncology. This was not new news to me. We’ve had these conversations for many weeks. I know all these doctors. I trust all of these doctors. But it’s inherently disorienting to be transferred to oncology without an actual diagnosis and treatment plan. I’ve said before, too, that I will probably be one of the few parents to feel relief when given such a diagnosis. We just need a plan. Right now we are in no department. No one knows what to do with us. In that elevator post, I wrote about the parents getting off on the oncology floor looking the most tired and haggard. If those are my people then let me be with them. Let’s meet the kids there. Let us structure our time, identity, and community in a way that makes some amount of sense and provides some sort of structure and home. Because we certainly don’t have that now.

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Floor 7, Going Down

The elevators at CHOP talk to you. A child’s voice announces which floor you’re on and which direction you’re going next. “Floor 4, goooing up!” it says cheerfully. Sometimes with a British accent.

We’ve spent most of our time here in the South Tower, primarily on the 9th floor, neurology. Floor 9 is the highest so everyone gets off either before or with me. I sometimes play a game in which I don’t watch as parents push a button when they get on the elevator and I try to guess on which floor they’ll get off. Each floor has one or more departments which it primarily houses. We’ve been on three of them inpatient, but never below 7, although our stay on 8 was just one night because that was where there was space available. The parents getting off on 3 always look the most weary and haggard. I can usually guess them with the greatest accuracy.

1st: Emergency Department
2nd: Nothing
3rd: Oncology
4th: Surgery
5th: Gastroenterology GI, Hepatology, & Nutrition
6th: Cardiac Intensive Care Unit (CICU)
7th: Pediatric Intensive Care Unit (PICU)
8th: Pulmonary Intensive Care Unit
9th: Epilepsy Monitoring Unit (EMU), General Pediatrics, Neurology

On Thursday of last week, Shawn had another MRI. Based on the results of it and other recent tests and the fact that we can’t seem to control his symptoms with procedures or medication, the doctors and I discussed some surgical options. None of which sounded terribly good to me. After a subdued and somber discussion, we decided to talk about it again in the morning.

It was 7:25PM, the cafeteria closes at 7:30PM and I hadn’t had dinner. I jumped in the elevator (“Floor 9, Going Down”), grabbed a pre-wrapped burger, and headed back up. I was foggy and emotional from the discussion with the doctors. The elevator was crowded with mostly parents. I looked at the panel and every button was pushed except 7. The PICU. I’ve written previously about my fear and hatred of the PICU. I looked around and said “oh, come on, no one’s going to the PICU?” and everyone laughed. “Oh god, we were just there last week, it’s the WORST!” said one mother. “I am SO glad we aren’t there anymore and are back on 5.” said another dad. And for the short elevator ride, we all seemed to find some sort of humor in it between ourselves.

On Friday morning, the doctors and I agreed on which surgical procedure to do. A diagnostic one that will hopefully give us some more clues as to what’s going on with Shawn. At best we might even get a diagnosis.

The procedure requires the following days to be on the PICU. Even I agree with this. He has a tube coming out of the side of his skull, after all. He’s had this procedure before, so I knew what to expect. That doesn’t make it easy.

I met with a hospital social worker a couple weeks ago. I’ve never paid much attention to the social workers here because I didn’t think they applied to me but she has put me in touch with a lot of financial and other resources that will hopefully be helpful to us. She also told me that she thinks that Shawn and I have both experienced actual trauma here. As I followed Shawn’s bed onto the PICU floor and started physically shaking, I began to think that she might be right. I remembered the importance of the fixed cervical vertebrae on the PICU. Don’t turn your head. Don’t accidentally glance in any rooms because you can’t unsee something you wish you hadn’t seen. I also remembered the words of a doctor back in November – “you can’t trust joy in the PICU.”

Day 2 on Floor 7 and things were calmer. The roommate we had when we arrived on Friday night had been transferred to a different floor and we didn’t get a replacement so we had the room to ourselves for a night. Our daytime nurse looked at the race t-shirt I was wearing and encouraged me to go for a run outside. Since we discovered that we all run competitively (at times) I chatted with her and our night time nurse at shift change about running and racing and the challenges  and benefits of training through our various life stressors. They told me about how their views of working on the PICU have changed at times. About focusing on the horror stories and the wonderful experiences.

Day 3 brought another roommate. A newbie on his first admission. A very logical father raving about how wonderful the PICU at CHOP is during his 21 hour stay here. They left the next day for their specialty floor. You can’t help but overhear everything in these small rooms with each side separated by only a curtain so I knew that they had a clear cut diagnosis and a plan to spend three days on floor 5 and then go home to resume their lives. Lives now altered by the kid’s newly diagnosed disease, but with a plan for how to manage it. I was slightly jealous of them.

Day 4 brought some test results for us. Still no diagnosis but some new clues finally showed up. These results mean that we’ll be staying for at least a few more days but we’re moving in some sort of direction. I’m not sure yet whether that direction is forward or not but we’re doing something. And something is better than nothing. Even bad news is better than no news at this point. Moving in some direction is better than moving in no direction.

Today is Day 5 and Shawn is currently working with his hospital teacher. Other than bingo at 2PM, school is Shawn’s favorite part of the day here. I went out to grab a cup of coffee. When I got into the elevator to go back to the room, I had it to myself. This time 7 was the only button pressed on the panel.”Floor 7, going up!”

Floor 7a

StopStupidHead

Shawn is going home today. Again.

Stop stupidhead.

Shawn calls people names at CHOP. It’s his thing. It’s part of how he holds onto some level of control in an uncontrollable environment for him. Meaniepants. Stupidhead. Ugly. Poopiehead. I usually ignore it. So do the doctors and nurses. Occasionally we’ll remind him that it’s not nice to call people names and that no one is calling him names. We push back more on the physical violence than on the name calling. He can have that.

So here’s how things went in the last week:

  • On Wednesday he was discharged following the shunt revision and was home and back to school by Thursday and feeling fine. On Thursday night the headaches started again. It got worse and I called on Saturday night. They told us to monitor. I had two goals for Sunday – for me to run 17 miles and for Shawn to get to his friend’s birthday party, rescheduled from Blizzard Weekend when we were also at CHOP. I knew where this was heading and had expected a call back later on Saturday night telling us to come in after the resident called the attending. When my alarm went off at 4:15AM on Sunday with no call, I got out of bed, drove down to the trail and ran the first of three legs of my run. I’d circle back each hour to see if anyone would be joining me since we usually have a small group at 6AM before the larger group at 7AM. I was solo until 7AM. The run was pretty crappy as runs go but in the end it got done and the call came around 9AM to go back to CHOP. I finished my run but Shawn would miss the party. Batting .50 on this one, not bad. I’ve done worse. I started to break down before I left the house. I had to stop myself. No crying in the bathroom on the way in, only on the way out. Those are the rules. My rules.
  • The ER to 9 South transition was average. 10 hours. Kicking. Screaming. Defiant silence. Refusal to cooperate despite the doctor literally bending over backwards on the floor to try to get it done. And with a bad back, I’m told, too. But Shawn won that power struggle. They’d get that part of the exam done the next morning under sedation along with the other tests.
  • I was angry with Shawn. Really angry. I yelled at him. I took away his iPod when he tried to bite a nurse and then me. I stood in the corner reading Facebook and email on my phone while he kicked and screamed his way through another round of IV placement with four people holding him down, each taking a limb.  I told him that he was making this hard all by himself and that another group was coming in to torture him some more. I was certain at this point that I was once again being screened for medical child abuse but I didn’t care. I was as mad as he was but I had an advantage. No one was sticking me with anything or trying to shine an uncomfotably bright light in my eyes. I could just read Facebook and see what people were doing who weren’t in the ER at CHOP for the twelfth time (or is it thirteen now?) in the last five months. Their lives looked mostly fun in that contrived way we make our lives look on Facebook. So I didn’t feel too left out.
  • I thought about what to do about discipline at CHOP. He doesn’t behave this way at home where there is little tolerance for hitting, biting, or name calling. But what do I do here? I don’t know how to control his behavior. I cannot punish/discipline him here in the same way that I do at home. Or can I? Hit the doctors and you lose TV and your iPod for the rest of the day? I can’t see anything good coming out of that here. But maybe that’s what parents do here. I should talk to parents of kids his age here. But how do I find them? I tried to ask a doctor for advice the next morning but she seemed in over her head and pretty much told me that she didn’t know needed to see other kids before rounds but that she’d get back to me. No one ever gets back to me.
  • I sat in the hallway on Monday night trying not to cry while the nurses force him to take his medicine. I was in over my head. I didn’t know what to do.
  • In the past week I’ve been feeling something strange that I can’t identify. It’s like I’m existing in the world but watching things happen rather than being a part of it. It’s not like I can’t function as myself. I can. But there’s an extra layer that requires me to observe the situation at hand and then decide what I would say. Will say. Will do. What I would do if I were myself rather than watching myself. And then I can actually respond appropriately but it takes extra time to get there.
  • When the nurse came out and told me that he took half his meds and threw the other half across the room and she would let the doctors know the struggle and ask for alternatives in the morning and said “he’s had about enough”. I couldn’t hold back my tears anymore and said “I’ve had enough too. I don’t know what to do.” She said, “Go for a walk for a while, he’s ok, we’ll check on him”. I said I don’t have shoes on and she said that doesn’t matter. I said I need shoes but what I really wanted in the room was my headphones so I could walk by myself and listen to music. I went into get them and Shawn was sobbing. Uncomfortable sobbing. Painful betrayed sobbing. Life isn’t fair sobbing. I sat next to him and hugged him and sobbed uncontrollably, too. For about ten minutes we held each other and just cried. He asked if we could go for a walk together so we did that. We went downstairs toward the gift shop which is still open at 10PM. He had once asked me what the prayer and meditation rooms were for. I explained what religion was as best I could and why those rooms were in the hospital. We walked and went into one of those rooms and sobbed together some more. He asked me, “do parents came in to these rooms and cry for hours after their babies die?” I said yes, some do. He said that he was sad when the kid in the room next to him died last fall when we were on the PICU but he didn’t know what to do. “You and daddy were just angry and frustrated all the time and it scared me.” I said he could cry and he did. We cried together some more. I asked him if he was afraid that he might be dying and he said no.

Prayer

  • At some point he just perked up and asked if we could go back to our room. We watched more Minecraft videos together until he fell asleep.
  • That night was awful. Awful isn’t even the right word. The doctors had asked me all day what I wanted and I just kept telling them in various iterations of flat out I Want A Diagnosis And A Treatment Plan. I can’t do this anymore. We’re beating him up. We’re invading his body, his brain, his mind, his guts. We’re doing this over and over again when we don’t have a clue about what’s wrong or how to fix it. No more. Figure it out and make a plan. I’ll be here. I’ll plan to be here. I can’t quit my job but I’ll figure it out if I can make a PLAN.
  • Shawn led me that night. He told me that it didn’t bother him at all that I cried, and cried HARD, with him, hugging him and telling him how I felt. That he liked that. He doesn’t like me yelling or getting upset with him or the doctors. There’s something in there for me to figure out. I sobbed openly with the door open while holding my seven year old son on my bed in his hospital room. At one point I heard someone outside say “he’s in there, underneath her, let’s leave them alone.” That moment might possibly be the most vulnerable I’ve ever allowed myself to be. I already know that I have to get over my own hesitation about showing emotional vulnerability REALLY QUICKLY if I have any hope of helping my child get through this. So I’ll do that. If it kills me, I’ll do that. If I click Publish on this post, then I’ve made some progress. I think he and I had breakthrough (and a breakdown) that night. We talked some about it the next morning. He reiterated his feelings about crying (good) vs yelling (bad). I will do my best.
  • I woke up with an emotional hangover that I expected after what happened the night before. An emotional hangover tends to be similar for me to a physical alcohol hangover in the sense that I was foggy, had a headache, and felt regret.
  • Shawn worked with the hospital teacher on Monday and Tuesday. He really loves that part. Absolutely loves it. It’s one of the things he enjoys about being here. It makes me happy to watch them.
  • I requested a family meeting with the doctors from all currently relevant specialties. Actually, I insisted on it. I would do my best to not yell. I was nervous about this meeting in the way you’d be nervous as a kid while being sent to the principal’s office in grade school or how I felt right before walking into my oral comps in grad school or how a drug addict might feel when walking into an intervention. None of those analogies actually works in terms of the circumstances but it was probably a similar feeling. The meeting was scheduled for 2PM. At 1PM I took a shower, then filled the bathtub with hot water and sat there for 10 minutes. As I drained the water, I could feel my body getting heavier as the water ran out and gravity was again working at its full force.
  • I walked in, they were all sitting around the table already. There was an empty chair in the middle for me. I couldn’t even look at them. I just found my chair and stared blankly ahead. The same silent defiant stare that Shawn sometimes does. I guess I know where he might get it. During the meeting I noticed that the detached “watching myself” feeling was gone. I wished it wasn’t. I wanted it then more than anything.
  • At this point we still don’t have a diagnosis but we do have a new plan, a new approach to hopefully manage his symptoms better at home and stay here more often than not. I feel hopeful.

While we were packing up to leave today, Shawn said

Every time we leave CHOP, I miss it. Every time we come to CHOP, I don’t like it.

I hugged him and said, “me too.”

He pulled back from me, saying “stop stupidhead.” I chose to reprimand him this time, he can’t call me names. He said that he didn’t call me a name. Sigh. This again. “I heard you do it, you called me ‘stupidhead’.” and he said again that he hadn’t said that. “Don’t lie about it, you called me that.” “No, I didn’t!” “Yes, you did, I heard it!” But wait, stop raising my voice. I’m not yelling anymore. I lowered my voice and said again, “you said ‘stop stupidhead’ when I hugged you, and that’s not ok.”

No, I didn’t say that. I said “Stop, Stupid Head.”

And I suddenly understood. He’s talking about his head and how much it hurts sometimes.

Doctors and Other Humans

Shawn went home on Wednesday. He was still a little wobbly on Wednesday following his discharge so we gave him the option of whether or not to go to school on Thursday based on how he felt. He chose to go to school. I remain amazed that for the second time, Shawn had brain surgery and was back to his regular life two days later. Sure, it was relatively “minor” brain surgery as brain surgery goes, but there was a human being physically manipulating Shawn’s brain on Tuesday afternoon. On Wednesday they sent him home. On Thursday morning he was sitting in his classroom. Think about that for a moment.

Let’s back up to that “human being” part. In my post from the hospital earlier this week I wrote about the neurosurgeon saying “this kid is trying to die on me and I need to work on her right away” when telling me about the delay for Shawn’s procedure. I have thought about that sentence a few hundred times since then. This blog is intended to be about my experiences as the parent of a kid with an as-of-yet undiagnosed disorder trying to navigate my way through the hospital experiences. Part of that process for me has been figuring out who is who. Doctors are people. Believe it or not, that’s actually true. In my attempts to help Shawn deal with this whole thing and his sometimes violent reactions to doctors and nurses, I’ve tried everything under the sun to keep his behavior at the hospital under control so that they can examine him or at least so he doesn’t hurt anyone. The one time that I felt like I found some level of success was when I told him simply, “the doctors and nurses are just people who have their own kids and parents and friends and things they like to do for fun when they aren’t here.” For the rest of that particular day, the violence stopped. The name calling continued, but there were no more physical outbursts.

“This kid is trying to die on me.” Like it’s a personal affront.

My outsider assessment of the personalities of the different types of specialists is that the neurosurgeons are at the top of the doctor food chain. They always get what they want. They also make the most money, or close to it. They are the break/fix people (which in my IT field is usually toward the bottom of the food chain, an interesting contrast.) They work insane hours and have a high divorce rate. I imagine there is a certain level of detachment that is required to do a job like that. Something is wrong. Fix it. Move on to the next one.

“This kid is trying to die on me.”

It was detached and emotional at the same time. I could see in her face that she cared deeply about that child. So could Shawn, who was also in the room for this discussion. Looking back, I wonder if that had anything to do with Shawn being uncharacteristically calm and cooperative over the next few hours while we waited for our turn.

The first few months of this process, I viewed the hospital as an entity. The doctors and nurses were just a part of that, not all that much different than the cafeteria or the parking garage. I had to figure out the schedules. When would they be likely to come talk to me? Who would talk to me when? Neurosurgery residents were likely to stealthily come in before 6AM. Even I managed to sleep through most of their visits and I rarely sleep through anything at CHOP. Neurology and general pediatric residents would show up around 7AM to do nothing in particular (from my perspective) but it was nice to see them and chat for a couple minutes. After they came by, I could then go to the cafeteria (which opens at 6:30) and get coffee with no fear of missing rounds, which is usually around 10:00 or 11:00, when I could talk with the attending physicians and find out what the plan was for the day. 7:00PM is usually the latest to talk to an attending. And so on and so on. The doctors and nurses were part of the hospital.

At some point, though, I started seeing the same people over and over again. The housekeeping staff would recognize me and say hi. We would chat about the weather and sometimes about our kids and schools and car trouble and whatever. I would intentionally choose the line in the cafeteria with the really friendly woman who was always so cheerful, even if it meant waiting an extra couple minutes (where was I going anyway?) So it was a natural progression to trying to find out if the doctors were real people, too. The crazy part about that question is that I have friends who are doctors and nurses and other health care professionals. I run with them. I’m friends with them on Facebook. They’re parents of my kids’ friends. I’m fully aware that being a doctor is a career that some humans choose to do. Yes, you have to be pretty smart and CHOP doctors probably have to be smarter than most, but it’s a job. Most adults have a job. That’s one option. But allowing the doctors at CHOP to become real people to me was a deliberate effort. I began to google them. I found blogs that they wrote. I found public Facebook posts. Pictures of kids and families. I felt like maybe I shouldn’t be doing this. Like I didn’t belong there. Like those spaces were their private lives (publicly accessible though they might be) and I am a part of their professional lives. Even when they introduce themselves to me or Shawn by their first name, I refer to them as Dr. Lastname. It’s formal. It keeps a distance. We’re not friends, we’re not even allowed to be friends.

I wrote to a friend about my sleuthing and attempts to force myself to see the doctors as real people. His response:

Especially in your case, I think seeing and knowing the doctors as real people is probably a good thing. To try to explain – in normal cases, you want the doctor to be the genius who knows exactly what to do and takes care of things correctly right away.  In your case (Shawn’s case more specifically), knowing that it is so confounding … seeing that the doctor is a real, caring person might help to reassure that yes, they really are trying their best to solve an impossible puzzle.

Yes. I’m quoting again because I cannot say it any better than that. And I’ve quoted this friend here more than once. He’s pretty good.

Then the inevitable happened. I got a message from a friend who told me that he met a new guy in an organization that he’s in and it turns out that the guy was one of Shawn’s doctors in the fall when he was on the PICU for a while. I recently stumbled on another parent’s blog post that describes what life is like on the PICU from a parent’s perspective quite well. Reading it gave me flashbacks. I hate the PICU. So here is my friend, talking about talking to this PICU doctor, calling him by his first name like he is a real person. Just another guy in the group. I’ve met hundreds of doctors. I only remember the names of maybe 15 of them. This guy is one of those that I remember quite well. He apparently remembers Shawn, too. He did one of Shawn’s lumbar punctures. He’s the one who told me about the NIH Undiagnosed Disease Program and called Shawn “the most popular kid at CHOP” because all the doctors knew about him. He sat with me in the hallway for what seemed like a long time back in October, explaining everything to me and answering all my questions.

There are days when I talk to the doctors here more than I talk to my own family and my other child. And on those days the doctors probably spend more time with us and the other families here than they do with their own kids.

Yesterday morning I set out to run 17 miles but cut it short at 12. I’d been feeling something off in my left achilles tendon for a few miles. Nothing big. The kind of thing that most runners, myself included (especially myself included) would have run 5 more miles and then thrown a bag of frozen peas on it after a long hot shower. And I started to do that. We were a quarter mile from the parking lot and had just turned around to do another 4-5 miles when I decided that I needed to be ultra conservative. I was fairly certain that this is not a brewing injury but I decided that I would rather cut the long run short than risk not being able to run at all. Because I need to be able to run at all right now more than I need to go after a marathon PR. Running is often the glue that holds everything together and I cannot lose my glue. This morning I tried again and finished all 17 miles without incident. While I was drinking coffee with friends after the run, Shawn’s primary neurologist called me, from home I think (not a hospital phone number) where he was probably with his own family but also calling me, and an hour later we were heading back to the hospital.

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