My almost 4-year-old son, Branko, has a very annoying and sometimes scary chronic illness. As a result, we have had numerous hospital stays, ranging anywhere between two and 24 days.
When he was first diagnosed, I was a new mom and already overwhelmed by the newsletters, the mommy group chats and all the parenting advice from all the others who had done it flawlessly before me. I had to sift through multiple expert opinions, picking out the ones that might possibly be applicable to someone in Branko’s state of health.
Branko is kind of kicking this genetic disease’s butt right now. People often say, “I just don’t know how you do it!” To be perfectly honest, I don’t know how we do it, either. Here are a handful of the seven thousand “regular” rules we’ve broken, just in case you are a parent who needs to make yourself feel a bit better right now.
The Experts Say: No screen time for the first two years.
Our reality: We birthed a YouTube addict.
Branko has unlimited screen time when he’s in the hospital. And it’s not just the iPad. The TV usually needs to be on as well. Not too long ago, he had a slight addiction to Kinder Egg “unwrapping” videos on YouTube, the ones that feature a pair of hands unwrapping, cracking open, and then playing with the toy inside each egg. He would watch these over and over and over, eyes glazed and mouth slightly ajar, ready to shout “again!” once the video ended. If we were too slow, he would cry. Then I would cry.
Right now we cannot even say the words “you” and “tube” in our home, in any combination or context. I once said “yoo hoo” as in, “look over here!” I quickly noticed his excitement and immediately confirmed YouTube doesn’t work anymore. They deleted it from the internet, Branko, because of all the iPads being flung out of moving vehicles.
The Experts say: Four servings of fruits and vegetables each day.
Our reality: Chocolate donut marathons.
For exactly 11 days, while in the hospital, he ate only chocolate donuts (Timbits, actually) for breakfast, lunch and dinner. We gave him loads of other options. His respirologist would laugh and say, “At least he’s getting some calories!”
No, impossibly-young-and-well-rested-doctor, you don’t have to stare at his chocolate-stained teeth and his maniacal grin while he holds both an iPad and a cellphone, watching the creepy “Superbabies” episode of Dora The Explorer over and over and over on the TV. You didn’t have a panic attack when the Tim Horton’s downstairs ran out of chocolate donuts, which of course would only happen in our hospital, during this particular hospital stay.
The Experts Say: Maintain a consistent bedtime routine.
Our reality: Bedtime shmedtime.
Kids are supposed to have schedules, right? They apparently thrive on consistency. Well, sorry, but we have zero consistency when Branko is sick. We are constantly being interrupted by these horrible monsters with stethoscopes and needles, who go from room to room in an effort to traumatize as many people as possible per hour. They never come at the same time two days in a row. And it’s never the same person two days in a row. And why are vitals taken every three hours today when they were every one hour yesterday? And why do physiotherapists only enter the room at the exact moment Branko’s eyes close for a nap?
Why? Why? WHY?
Putting a child to bed in the hospital? Need some useful tips? Sorry, I got nothing. It’s terrible. It always feels like it’s the same time of day, so when it is, in fact, dark outside and you share this with your child, don’t be surprised if they laugh at you for a minimum of three minutes. Don’t be surprised if you let them watch “Jurassic Park” until 11:30 pm without even fast-forwarding all the parts with the British dude who’s the master of the Velociraptors (or so he thinks, right?).
The Experts Say: Make bath time Fun!
Our reality: He has fake baths (so that people don’t judge us).
I’ll admit, I am a little hard on people when I see a dirty, typically-developing child walking around with his fist up his nose. Sorry. My first thought is “gross.”
My second thought is, “My son never looked as awful as your kid and he’s had six casts in two years.” That’s a total of 26 weeks where we didn’t give him a proper bath. Our trick? Just fake it. We wipe him down whenever we see actual gunk on his body. And we usually do it in front of a nurse to emphasize how we are truly great parents.
There is no way to make the process of cleaning a sick child fun. I’m sure there is a logical reason behind it, but the last thing Branko wants, ever, is water touching him. He hates having anything removed from his body once it’s stuck on there. I am quite positive he has an ECG sticker somewhere on his chest from eight months ago.
We sometimes play a game where I smell his feet and pretend to pass out. He loves it! It still gets him every time. The thing is, I have sometimes felt like I was going to pass out. There is nothing like stinky-little-boy smell combined with that six to 12 weeks in a cast smell.
Even though he smells awful he at least looks clean. And appearances are what really matter, right? I realize that I shouldn’t be too hard on myself. I get it. These rules are the “best case scenario” when parenting. I absolutely realize that children in the hospital need to be made comfortable, and if that means Kinder Eggs, Jurassic Park, and stinkiness for short periods of time, then so be it.
As I mentioned, Branko is slowly getting better. He hasn’t been hospitalized in about eight months, which is a world record for him. We are now in the process of trying to establish a consistent routine, which includes three actual non-chocolate based meals every day. So far, it’s going really well, except for the fact that I have to bribe him with one hour of TV, two hours of iPad, and sometimes, a five-dollar bill.
I have found the whole thing quite difficult. I’m not used to being stern and consistent with him, especially when my go-to parenting mantra used to be, “just do whatever.”
To all the parents out there who don’t have chronically ill kids — I just don’t know how you do it!
The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
A version of this post originally appeared on Baby Branko.
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