Here we were, trying to navigate the uncharted waters of a rare genetic disease, while also trying to figure out all that regular baby stuff. How many hours could he stay awake in between naps before we ruined his chances of getting into University? How many hours a day should I carry/wear him so that he makes the most number of friends in kindergarten? I had to sift through multiple expert opinions, picking out the ones that might possibly be applicable to someone like Branko. It’s still a bit hard, especially with the steady flow of articles espousing the dangers of too much or too little playtime/food/stimulation/plastics/fun/preservatives.
Branko is now four years old, and he is kind of kicking butt in the health department 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. All I know is that my husband and I are really great at making split-second decisions and inventing our own parenting rules on the fly. 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.
If you are at all intimately familiar with YouTube, you might know there is an endless supply of related videos off to the side, and as he got older and smarter he became proficient at selecting videos on his own. Finally, I thought, some ME time! I would sneakily put one headphone in, attach it to my secret ipad and start up a new episode of Breaking Bad. I was rarely ever interrupted, except to speak with doctors and to check his playlist for the unlikely instance of something inappropriate for kids, because it’s the least I could do.
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 that no, 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: 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 over and over and over on the TV. You didn’t panic 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.
I would also like to point out that Branko developed a fondness for real Kinder Eggs at some point last year. Of course, he was only interested in opening them and playing with the toy, and not the actual chocolate. He would either throw it on the floor or toss it my way. “Here you go, Mama.” Thanks dude.
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, Today’s Parent, we have zero consistency when Branko’s 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. Like Vegas, 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 “clever girl” dude who’s the master of the velocirapters (or so he thinks, right?). Don’t be surprised if you find yourself buzzing the nurse and trying to convince him to give your son a splash of the ol’ tylenol/morphine combo that has the dependable result of at least two hours of uninterrupted sleep.
*I have never actually thought that doctors, nurses, and therapists are monsters. I do, in fact, think they are the best and bravest people on the planet and they are only doing their jobs, even when they wake my son up at 3 am for his morphine
The Experts Say: Make Bathtime 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 their dirty, typically-developing child walking around with his fist up his nose. Sorry. My first thought: gross. My second thought: 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 actually come close to passing out. There is nothing like stinky-little-boy smell combined with 6 to 12 weeks in a cast smell. Even though he smells awful he at least looks clean. And appearances are what really matter, right?
Branko also wears leg braces and thick, thigh-high socks, and these things are just plain difficult to put on. It’s so difficult that I have been known to just leave them on for a few days at a time. If you are a visual person, imagine attempting to put pantyhose on either a zebra or a feral cat. I mean, you’d get the job done, of course you would, you brilliant thing! But you would have many, many stories afterwards. And like me, you would try your best to avoid doing it again, at least until his father mentions that the socks have been on for a week (or three).
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 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’m not exactly used to being strict and 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!