Parenting is easy. Some people claim it’s the hardest job in the world, but I have to respectfully disagree. Firstly, I’ve yet to meet a parent who gets paid for parenting. Quite the opposite. Parenting is really more like a bad cocaine habit than a job – it’s very expensive, it’s all consuming and you’re constantly hoping nobody dies. Secondly, there are plenty of real jobs that are much harder, more demanding and way more stressful. Being a doctor, dentist, lawyer, police officer or electrician actually increases your risk of committing suicide. Conversely, parents are less likely to commit suicide [1].Thirdly, animals can be parents. How difficult could it be if birds do it, bees do it and even educated fleas do it? A llama can be a mother but I’ve never heard of one cross-examining a witness or performing a colonoscopy. I’d love to imagine a Bay Street law firm run entirely by monkeys, but sadly, that’s yet to happen (maybe). Fourthly, let’s be honest, we’d all much rather be Peggy Bundy than Al Bundy. Parenting is easy. But being a good parent is extremely difficult.
This is my unremitting struggle. I often fear I am nothing more than a llama in good parent’s clothing and not just because of the spitting. Parenting a kid with narcolepsy is like signing up to volunteer at a hospital in the pediatrics department and then being transferred to proctology. It’s an unwelcome surprise and it sucks ass. Parenting a kid whose brother has narcolepsy might arguably be even harder. But you do it. Because you have to (and legally you’re required to provide children with the necessities of life). But what if merely parenting is so mentally draining and physically exhausting that it leaves nothing in the tank for good parenting?
On a scale of Lucille Bluthe to Claire Dunphy I would say I come in at a Lorelai Gilmore (although according to an extremely scientific Popsugar quiz I’m actually Charlotte York). My parenting style is a mixture of reasonable tough love, occasional unwarranted leniency and bribery. I am a true believe in Newton’s Third Law which states that for every action there is an equal and opposite reaction. There are consequences for bad behaviour and rewards for good behaviour, though admittedly, my level of strictness is a sliding scale depending on the issue at hand. I care little for things like self expressionism via blue hair but I am extremely vigilant about academics. Similarly, I will allow almost any pet into my home (except for cats obviously) but I am a crazy, lunatic sleep Nazi.
Being a good parent to Rylie has always been very straightforward. She was easy to discipline, even easier to motivate, and easier still to make happy. I had guidelines and rules, I was organized and structured; but with Dylan, all the guidelines, rules, organization and structure flew out the window faster than Joey after she kissed Dawson for the first time. With Rylie, her behaviour was easily categorized as good or bad; with Dylan it’s almost impossible to tell. Is he being rude or is he sleepy? Is he unfriendly or tired? Is he having a temper tantrum or is it a regulation issue? Is he throwing himself to the ground in a fit of rage or is he so upset he’s having a full blown cataplexy attack? In the early days of his narcolepsy, before he was diagnosed, Dylan spent more time in his room than out of it as punishment for throwing himself to the ground when things didn’t go his way. You can imagine the gravity of my guilt when doctors explained his collapses were actually cataplexy attacks. I was instantly crestfallen and compunctious. I had been repeatedly banishing my sweet little man to his room for something entirely out of his control. I remember giving him until the count of five to stand up but he never would. He always claimed he couldn’t get up but I never believed him. I should have known something was wrong. I should have believed him. That’s what a good parent would do. I was more caught up in discipline than good parenting. Thinking about all those times he sat alone in his room for nothing overwhelms me with a deep dark melancholy. I will never punish him again for falling to the ground. Ever. Period. Even if he says, “Mom, I really want to keep playing video games and unless you let me I will purposely fall to the ground, not because of my cataplexy but rather to express my extreme displeasure” I will still not punish him. Not happening.
The most contentious area of parenting for me, from which most of my llama doubts stem, is sibling inequity. Am I being fair? Is Rylie getting shafted because she’s a good girl? Is Dylan receiving too much slack because he’s sick? Logically, I understand that every child has different needs thus requiring individualized parenting but it often feels as though I’m unintentionally favouring one child over the other in a desperate attempt to avoid an ursidae Armageddon.
Let’s take sleep as an example. At four months old, both my children were sleep trained by way of the cry it out method. It worked well, it worked swiftly and literally overnight, I had perfect sleepers adept at soothing themselves to sleep. The change in their behaviour when they were getting a full night’s sleep was remarkable. My sleep rules were strict: no co-sleeping, no rocking to bed, no bottle for soothing, and once they were tucked in, no going into the room. Of course we made exceptions on nights when the kids were sick but otherwise we adhered to these rules as if they were the word of Prada. Mr. Bear will surely never forget the one and only night, before Rylie was even sleep trained, when he fell asleep on the glider with Rylie on his chest. I LOST MY MIND GRAPES! Needless to say, it never happened again with either child. These rules, for Rylie anyhow, have stuck to this day. Sleeping in our bed is reserved for special occasions and excellent behaviour. Dylan, on the other hand, starts his nights off in our bed and is then transferred into his bed. Because of his narcolepsy and the cruel joke that is excessive daytime sleepiness yet disturbed and fragmented nighttime sleep, Dylan routinely wakes up several times per night. Most times he’ll come lie in our bed until he falls asleep and then we’ll take him back to his bed. Sometimes we fall asleep right alongside D and he ends up spending the whole night with us. Total double standard. If Ry continuously woke up during the night, she would most definitely not be allowed to sleep in our bed. In fact, there would be serious consequences and a sleep training revival. Sadly though, you can’t train the narcolepsy out of D. I’d like to say Dylan needs the comfort of sleeping in our bed but if I’m honest, Mr. Bear and I are just desperate for some shuteye. There’s also a double standard when it comes to food. Rylie knows she has to eat her fruits and veggies before she can have any dessert. Like with sleep, this has been a long standing rule in our house. This rule used to apply to Dylan too until the stimulants robbed him of his appetite. Now we’re lucky if we can get milk and Bear Paws into him all day. Rylie’s meals end with dessert and Dylan’s meals are entirely made up of dessert.
Rylie is definitely starting to feel the inequality and Dylan is definitely starting to take advantage of it. I try to reason with Rylie and to a certain extent she gets it, but she’s just seven years old and I’m certain that deep inside her not yet fully mature emotions are terribly irked and somewhat covetous. Recently, Rylie declared she wished she had narcolepsy. If that’s not an indication of me royally llama-ing it up, I don’t know what is. We do tons of one-on-one special stuff with Ry like taking her to NYC, taking her to baseball games and showering her with attention but somehow it all pales in comparison to a spot in Mommy and Daddy’s bed.

wow you really have your hands full but it sounds like you’re doing great. Rylie might be feeling things aren’t too fair right now but she’ll get it when she’s a bit older.
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Yes it’s being a good parent that is the hard part. After reading this, I can’t imagine all you have on your plate. You do sound as though you are handling it admirably, although I understand it looks different from the inside. 🙂
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I can 110% related to EVERYTHING in your blog entry! Except I have 2 other children aside from my youngest with N & C. Our parenting styles are even identical and I too, had all 3 kids sleeping through the night by 12 weeks old. And later on, an 8 yo, 6 yo and 3 yo who were tucked into bed each night by 7:30pm… then narcolepsy struck and everything I’d worked so hard to achieve went squarely out the nearest window!
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Ahhh, how lovely was sleeping through the night??
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