The Rules

You already know about one of the words we don’t say in the hospital.  You know, the other H-word. It is not alone. There are others. Like the Q-word, as in “well I hope you have a Q&#*t night.” Might as well just say “good luck getting some sleep as all hell breaks loose with Liam’s vital signs.” That’s as bad as saying the S-word when you haven’t seen any tonic-clonic events for a few days. But word choice is only the tip of the proverbial iceberg. We can’t let ourselves descend into chaos now can we? I wasn’t a superstitious person before Liam was born, but you can’t expect us to survive this much overall time in a hospital and NOT develop some tics, habits, and superstitions.

No, no they’re not superstitions, superstitions just sound silly. These? These are rules.

Blue hospital admission bracelets are not to be purposefully removed (cut off with a blade or even ripped off) until it is done in our living room with all three of us present. As many of you know, during long hospital stays bracelets can wear out pretty quickly and after a few showers they get brittle and start falling apart. Even if a band is only being held on by the smallest shred of brittle plastic and I know it will probably break off in the shower and that I should just break it and get a new one from the desk before I leave since I’ll need one to get back in, I just can’t do it. As long as Liam is lying in a hospital bed my hospital bracelet has to wear out and break on its own in the course of normal activity. Last Sunday night I instagrammed a picture of three hospital bands on my coffee table neatly cut off with scissors. Check my feed to see it, I will not be posting it tonight. Bad Mojo.

The flooring of the skybridge connecting to the hospital parking garage is a single sheet of linoleum. About halfway across is an 8 inch area that has bubbled up. It has been that way for the last three years. I can assure you of that because each and every time I have left the hospital I step on it twice with my right foot. Every single time. I have stood in the doorway waiting as families stop there to argue or are just slow walkers just to make sure that I step on the bubble. I try to work on doing it subtly when I’m not alone walking through but it’s pretty hard to hide since I have to do it twice. Conversely, I use the same skybridge every time I enter the hospital too but on the way in I NEVER step on the bubble. I’m not really sure how this all got started. It is just something that happened. These are the rules. The little things that Karin and I hold onto when a hospital becomes our whole world. A hospital is a serious place. These rules are not made for breaking.

Red cafeteria trays should always be avoided. This rule came from last year’s 40 day admission in which Liam had his appendix removed. We spent a lot of time with the surgical residents that stay, so much time in fact that the red tray rule comes from them. They worked so closely with us for so long and they did such a wonderful job with Liam through what was a complicated medical situation that it was the very least we could do to adopt their own hospital ritual as our own. There is a heartbreaking story that accompanies the red tray rule but I feel uncomfortable sharing it. Just know that is a worthy cause and so in what has probably been more than a hundred meals in the cafeteria since, I haven’t used a red tray. Now Brown trays on the other hand. Brown trays are used exclusively when we are dealing with issues of Liam’s motility. Yes brown trays to help relieve constipation.(it’s too bad that Liam has a g-tube – the cafeteria food ON the brown tray is what could actually help with constipation). No one ever said the rules weren’t crass.

But the weirdest of the rules is the only one that Karin doesn’t follow. I don’t shave when Liam is in the hospital. What started as a kind of playoff beard thing when Karin was pregnant evolved when he was born into a beard until he comes h*me from the NICU grizzly adams look. Between pregnancy and NICU stay we’re talking close to 11 months without so much as a trim. It was a hairy time. Ever since then I don’t ever shave when Liam is in the hospital. When Liam eventually did make it h&me from the NICU I was baby-faced once again until 14 days later when Liam began his first PICU stay of 109 days.  That beard was pretty good too. I generally keep a beard all the time now but I trim it down and shave my neck every couple of days. I was getting pretty shaggy before this stay even happened. My neck is getting pretty itchy these days.  Damn these rules. Sometimes I wish they weren’t so strict.

I’m not sure what would happen to Liam or to us were we to stop following these rules but I tell you what,  I’ll be damned if I’m ever going to find out.

What kinds of habits, or “rules” help you find comfort during times of great stress? Maybe we can add a few more to our list, we could use all the comfort you can give.


  1. You have really been through so much. I have to say, I totally respect the rules. It’s like talking about a no hitter in the middle of the no hitter… you just don’t do it. If you have a ritual and it works, don’t change it

    For me, I followed your rule about the bracelet. I had not only kept my blue NICU bracelet on, but my own hospital bracelet and the new parent bracelet on. There was no way in hell those were coming off before Sam came home. I also only washed my hands in the right hand NICU sink. For some reason the left hand sink didn’t have the same juju as the right.

    Something about having rules really helps to bring order and control to the totally out of control life of the NICU, PICU, and hospital in general.

  2. Let’s see: Definitely did a version of the bracelet thing during our 3 month NICU stay. Took certain elevators.. Only pumped my milk in a certain pump rooms. Set up her isolette a certain way, specifically had this tiny princess crown next to her that my mom had bought her and can you imagine my horror when she had a major crash in the CTICU during her heart surgery, and the RT’s came flying in pulled down her side rails and CRUSHED her crown … the doctors thought I was crazy as I held the crumpled crown in my hands sobbing, thinking in some why this would be indicative of her survival. Never said the “H” word. Infact, the entire NICU used the word ‘Disneyland’ instead. Not knowing this early on, I thought it was so negligent when a little girl, who had been there 8 months, had parents talking about taking her to Disneyland … germs? Fragile?… then someone clued me in.

    Seizure days were a haze. But never, not ever said the “S” word.

    Leukemia got a little weirder yet. Packed packs the exact same way for each round. Hung pictures and things, in the exact same places on her crib. Wore a certain shirt the first round …. said “Leukemia Sucks” . Another freak out came in her last round when I could not, for the life of me, find a poem that hung on her cabinets, for nearly 8 months at that point, could not find it. Mark thought it was as simple as printing a new one. Not so much.

    Okay, hijacked again. Sorry about that. Not so much comfort things. Definitely OCD things with a tinge of, I don’t know, fear of the unknown and feeling so not in control of the uncontrollable.

    Sending love and light your way. And blanket is on it’s way. Let be know when it arrives.

  3. I blame my southern Italian ancestors who are profoundly superstitiious — my own paternal grandmother would never exult in anything for fear that something dark was next around the corner. I’m a bit like that — well, a lot like that. When Sophie was a baby, we took her to an orthodox Jew who was purported to be a healer. He gave me a metal medal that I was to pin on the inside of her onesie every single day, a sort of token to ward off the evil eye. I did it for more than three years.

    I so understand the rituals. Frankly, it sounds incredibly insane in an otherwise insane world and situation.

  4. I have one simple rule when it comes to things. Full shut down mode to anything other than what is basic necessity for survival. Irony? This will, undoubtedly, be the ultimate reason for my demise one day.

  5. Its kind of a ritual during hospital stays, I have to clean his hospital room, put everything where it goes. I guess its kinda an “order in the middle of chaos” thing for me. it gives me such peace to see everything where it goes, like I’m still in control. You may not remember me, but my son was in the room next to your son this time last year. This is all fairly new to me, but funny how fast we develop rituals, superstitions, and routines.

  6. The 2 coomon facors I see in the rules are ways to concentrate good energy coming in and a way for bad energy to leave. You might want to explore what goes on the brown tray and then into you (think Wade Boggs here). A little personal addition, like a lion sticker, to the bracelet might be a way to link your and maybe our familial energy. Wonderwoman has those super bracelets.

    Love and Light

  7. At the NICU or the ER or any hospital we introduce ourselves to every single staffperson we come in contact with and call every staffperson by name. If we can’t see their name, we ask them. If a staffperson tosses off a “Hi, how are you?” we stop, answer the question and ask the same of them. We always refer to whoever is being treated by their name – their preferred name or nickname or appellation – over and over. We insist on being human beings surrounded by a loving family of human beings – never, ever a number or, worse still, a disease.

    Love and peace…

  8. Wow! I thought it was just us. We don’t say the S word or allude to it. We don’t get too happy (or rather announce that we’re happy) when things are going well and if we do say anything that suggests we are happy or H is doing OK then we touch wood or say please God. Saying ‘Please God’ is VERY important when alluding to any event that may occur in the future (that’s anything over 2 weeks away).

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