Narcolepsy is a hideous disorder that turns your world upside down. It forever changes your loved ones, drastically alters family dynamics and creates a new normal that is anything but normal. At first, I was overwhelmed with grief. I mourned the loss of my healthy son. I kept imagining a detective drama where narcolepsy, played by a miscreant short man with an inferiority complex and a thick German accent, had kidnapped my Dylan. I envisioned a mysterious hyper intelligent Ryan Gosling type suddenly solving the mystery in a moment of clarity and heroically returning a healthy D back to me. Sadly, these were all just hypnogogic hallucinations. Eventually I had to come to terms with the fact that Dylan was gone. Not physically of course (insert my mother’s puh puh puhs here) but his previously happy-go-lucky personality had all but disappeared.
When Dylan changed, life changed. We had to adapt to a new way of living. I’m not dramatic enough to declare that life as we knew it was over, because it wasn’t. Truth be told it hadn’t even become abysmal or insufferable, it had just become exponentially harder and far more unpredictable. Defining the new normal was the toughest part. I abhor change and I am a creature of habit so for me, there is comfort in consistency. Having expectations fulfilled, even negative ones, gives me some semblance of control in an otherwise uncontrollable world. Dylan’s predictable morning medicine meltdowns, while frustrating, give me an odd sense of solace.
So what’s our new normal? This is a question I’m asked frequently. Certainly there have been changes to our daily routines. For instance, since the stimulants suppress Dylan’s appetite, he doesn’t eat for most of the day. As a result, he wakes up early in the morning, we’re talking 4:45am early, famished and parched. Breakfast is now served on demand. There are also logistical considerations that are required. Dylan needs a bed to sleep on in class, we must always sit in a booth at a restaurant and we now bring a blanket with us pretty much everywhere we go. All things considered though, these are fairly minor and easy to implement changes. The most challenging change was re-calibrating our expectations.
Parents have all sorts of expectations for their children, sometimes, even before they’re born. When Pickle and Marshpillow were in my belly, I expected both of them to be born with big, blue beautiful eyes. Mr. Bear certainly expected the same since anything other than blue would have suggested some Don Drapering on my part. In my opinion, there are three distinct types of expectations parents have for their children:
1. Grand expectations which are sometimes confused for delusions of grandeur. These would include things like expecting your Jewish son to one day be a famous NHL player or expecting your socially inept daughter to be the next Prime Minister. Grand expectations are the pipe dream fantasies we secretly have for our children.
2. Realistic expectations are distinct from grand expectations in that they are more reasonable and achievable and usually involve typical milestones that kids progress through. This category of expectations would include things such as expecting your children to drive, expecting them to date (A note to future suitors of my cubs: ensure your CPIC record is immaculate because it will be checked. You have been forewarned) and expecting them to attend university (on a full academic scholarship if your name is Rylie or Dylan). Realistic expectations are often ones you share with your children and help them prepare for. A classic example of a realistic expectation is one that all Jewish parents share and all Jewish kids know too well – that they will grow-up to be a doctor, a lawyer or a dentist. I expect both my children will be lawyers because of their deep appreciation for the art of arguing.
3. Mundane expectations are ones you probably don’t even realize you have. They’re not sexy expectations like grand expectations and they’re not exciting rites of passage like realistic expectations. Mundane expectations are usually taken for granted. Most parents expect their children will eat three meals a day, watch movies, attend birthday parties and run around with the other kids at recesses. We don’t give these expectations much thought because we just assume they will occur. These expectations are so ordinary, that even when they are fulfilled, they often go unnoticed.
It is the mundane expectations that have changed for us since Dylan’s diagnosis. I still have wildly silly grand expectations for Dylan like winning the Nobel Peace Prize for curing narcolepsy or marrying an heir to the aglet fortune. And I still have many realistic expectations for Dylan like learning how to play guitar, going to overnight camp and I fully expect him to one day fail an assignment he decides to write from the perspective of a Colombian drug lord for no reason other than to entertain himself. These will all happen (particularly the last one if history repeats itself from one generation to the next). But the mundane expectations are the ones that have drastically altered (cue the Lowered Expectations jingle from Mad TV). Things we never thought about before are now front and centre. We no longer expect Dylan to eat three meals per day – one or two meals, if we’re lucky, will have to suffice. We no longer expect him to sit through a movie without needing a nap so now we take two cars to the movie theatre (or better yet we watch movies at the Newman theatre where he can fully recline should he need to snooze). Our expectations have certainly lowered with respect to birthday parties, both his and his friends’. An RSVP from Dylan is about as reliable as a Range Rover. He’s like the friend who always cancels plans at the last minute because she finds something better to do, which in Dylan’s case is almost always a hot date with his bed. Even Dylan’s own birthday party is a crap shoot. This past June for his 4th birthday, he slept or screamed through the entirety of his party and eventually ended up leaving early after begging to go home. Running around with his friends is another lowered expectation. My delicious little man loves running so much that he often has a cataplexy attack from laughing so boisterously. As a result, instead of expecting him to pee in his pants a little like the rest of us do when we laugh or run, we’re now on guard for a potential collapse. There are many other expectations I consciously think about that I never otherwise would. Will Dylan drive? Will he play sports? Will he become just another narcoleptic statistic, suffering from depression? Will he be able to watch Lord of the Rings without falling asleep (an impossibility for me and my dad)?
Expecting the worst and hoping for the best can sometimes be pleasantly surprising. This past summer, Dylan went to his friend’s birthday party at an indoor playground. Just going to the party was pretty unexpected but not only did he make it, he ran and jumped and laughed and played without incident and left the party a sweaty mess. Last week Dylan ran the Terry Fox run at school. I never would have guessed he would have had the energy but he exceeded all expectations by running the whole (kindergarten) route. And probably most unexpected of all was his dental appointment this past week. Dylan had to have a cavity filled (by my new favourite person in the whole wide world, Dr. Lori Goldenberg), but unlike all of his previous experiences with the dentist, he was polite, agreeable, talkative and exceedingly well behaved. My little anti-dentite did not cry and he never once whined. This was completely unpredictable and truth be told, a little unsettling to my change averse sensibilities. What happened to my wailing and flailing boy? It was so odd and unexpected. So unexpected in fact, that in anticipation for what I believed to be an impending shit show of an appointment, for the first time in my life I took an Ativan. Perhaps the only predictable thing about any of this was that the Ativan knocked me out.
In many ways, this experience has changed me, dare I say, for the better. As cliche as it may sound, having an unhealthy child serves to put things into perspective. I no longer find nearly as much happiness in materialistic things. Instead, I find my joy in Dylan’s everyday accomplishments. Small wins become
Stanley Cup World Series championships. Little victories that might otherwise go unnoticed are now celebrated. Something as simple as seeing a sweaty Dylan after an active birthday party is pure bliss. While sweating is a mere mundane expectation for most, Dylan is often too tired to be active enough to ever break a sweat. My son’s perspiration is my new Louis Vuitton purse. Listening to Dylan say “hello” to a house guest and then willingly engage in pleasant conversation is my new North 44 dinner. Watching Dylan put himself to bed instead of throwing a fit is my new Las Vegas vacation. Life has changed and so have I. My birthday, which has traditionally been an extravagant exercise in excess, over-indulgence and narcissism was this year replaced by a low key dinner with Mr. Bear. It just didn’t feel right to celebrate with everything going on with D. And probably most shockingly of all, especially if you know me well (or if you were a guest at my “presents’ themed wedding), I did not ask Mr. Bear for any gifts. There was only one gift I really wanted this year but sadly, it’s not available for sale.
This post is lovingly dedicated to the Posen Family in honour of Snuffles Fendi Posen.