Well – we are back home again. Ben, of course, was thrilled to see his dog again. We both came back a little tired, but we are slowly unpacking and building our new routine. I have decided to keep the structure of the school schedule at the hospital to help us stay on track with (trying to) keep Benjamin up to date in his schooling. He has proven to be a great student – finding interesting facts in every subject. I am enjoying my time with him.

Ben continues to fight medication in a way that drives me crazy. The other night he said he was fine and didn’t need anything. After a few hours of hearing him moaning and moving restlessly in his sleep, I woke him up to give him some morphine. I have noticed that if he does not have his pain meds, his heart is working harder and his oxygen levels go down quite frequently. With the meds, he seems alright – only desatting a few times a night and recovering quickly. I will meet with his pediatric team here this week to bring them up to speed.

The question I get asked most often by other hospital parents and friends (when referring to our long-term hospital stays is “how do you manage this without going crazy?” My first thoughts are to define crazy, quickly jumping to thoughts of ’no choice’. However, after three long-term hospital stays, I admit that I have come up with a few tricks to make life more tolerable.

Anyone that has ever endured a long-term hospital stay knows that it is the opposite of the real world…weekends are excruciatingly long and boring. Every minute ticks by slowly. As we see the regular staff head off for their weekends, our hearts sink a little, knowing the endless hours of boredom await us.

However, this time I found a way to minimize that and go back to appreciating the weekend. Here is how I do it. (I should point out here that my halo mom buddy, Tina, thinks I am insane, but I’ll let you be the judge – I think she’s just jealous). Not only does this method apply to hospital stays, it is also transferable to many aspects of real life too. One day I will write a book about it and will obviously become a billionaire because it is so brilliant!!!) So without further ado….how to endure long term hospital stays and make the time fly by…

it’s revolutionary…

Wait for it…

Here it is…

MAKE THE WEEKDAYS CRAPPIER!!!

(cheers and applause)

I know….it is brilliant…thank you (blushing). Anyone who has a kid in the hospital knows the age old rule – give them what they want when they want it. For example, if your child has screws stuck in their head, you might say “yeah, sure, I’ll buy that even though it’s super expensive”…or… “You want to eat candy all night?” …”no problem” …”ice cream for dinner?”… “alrighty then”. It feels like the right thing to do – and I admit I have done it every other hospital stay… until this one.

This time – remembering the endless weekends of our last hospital stay – I chose to deny Ben some of his perky little heart’s desires during the weekdays. We would go to the vending machine upstairs and Ben would ask if he could buy some Oreos ….”hmmmmm….not today – maybe on the weekend” I would say while Tina was rolling her eyes at me! The same went for ordering chocolate cake off the food menu – “not on weekdays”. I used this tactic for movies, food treats, games, etc. The truth is, our weekdays go by quickly – we have school, xrays, nursing students, routines. Even the simplest things, like having a shower, take longer, so before you know it – it’s bed time and another day is behind us. With my new MAKE WEEKDAYS CRAPPIER routine, I found I was looking forward to the weekends more. So, think about that for a while. I think I’ll title my book ‘If your life sucks, just make it suckier”.

Here’s an overview of our weekday sacrifices. I would eat more rigidly on the weekdays than on the weekends. Breakfast was always toast and coffee. Lunches were from the salad bar. I ate kale every single weekday, such was my commitment to making weekdays crappier. After a long time of reflection, I have come to the conclusion that I HATE kale! There is no person on this planet that has given kale a more zealous try than me. I want to like kale….but I don’t. I have made kale chips at home – dusted with enough oil and salt to make them taste chippy for the 5 minutes before they cool and become rubbery again. I have eaten thousands of pounds of raw kale at the salad bar. Even at the blind restaurant, Hannah asked what the weird salty stuff was that vaporized like ash in our mouths….kale….I mumbled. I’m surprised people haven’t died from kale. Swallowing raw kale is like swallowing a rusted anchor that sticks partway down your throat – bracing itself against your esophagus – threatening – only to be partly dislodged by copious amounts of water (if you’re lucky). So, another reason I like weekends in the hospital – I don’t eat kale on weekends.

One of the funner things we did (only on the weekends) was play group hide and seek. Generally there are only three or four long-term families here at the hospital, so the hospital is CRAZY empty and quiet. The shorter term patients who are around are generally recovering in their room. So, the long-termers would go down to the main floor and scurry around like mice. The “It” person had to take the elevator upstairs to the 6th floor then turn around and take it back downstairs while the rest of us hid. Home base was the xray desk which has a little bell that we ring to keep us safe. I forgot how tense and terrifying it is to play hide and seek is – heart pounding – judging the moment when you should make your move across the hospital pushing a squeaky walker with a kid dangling by their screws whispering “run” “RUN” giggling all the way in the hopes that the wheelchair kid is way over by social services, wondering when you are finally going to push the security guards beyond their limits. There is a certain naughtiness of running (walking quickly) around a hospital, not knowing if you will get in trouble, that makes it all the more pleasurable. I highly recommend finding a fun, slightly naughty activity to do on the weekends.

Another thing we indulged in on the weekends was video games. We would often grab one of the video game machines and bring it to our room on Friday night and return it early Monday morning. Ben would be able to play his games right in his room over the weekends. (We did play some video games throughout the week, but we usually went to where the machines were and played there – it was usually short and sweet.)

Finally, weekends were the times for movies and fun snacks. Saturday nights were spend binging at the vending machine or ordering treats from Skip the Dishes (Dairy Queen). We looked forward to our Saturday night parties!

Somehow, with video games, vending machine snacks, movies, chocolate cake, playdates with friends, and the absence of kale, we started to look forward to our weekends and they started to fly by. And…before we knew it, it was time to leave again.