Narcolepsy can be a very isolating disorder. Because it is so rare, there are few people with whom you can commiserate. One of the things that helped me most when I was going through postpartum was sharing parenting war stories with other Mommies & Daddies in my network. It was easy to find someone who could relate to any issue or struggle I was having be it feeding, bathing, sleep training, diapers, formula or even allergic reactions to organic baby products. But with a rare disorder like childhood narcolepsy their simply isn’t a network of understanding parents with which you can connect, particularly in Canada. There aren’t many people whom I can ask, “how do you get your four year old to drink Xyrem?” When Dylan was first diagnosed, doctors told me he was literally (not figuratively) the only three year old in Canada with narcolepsy & cataplexy. I’ll admit, I have always been somewhat anomalous but this was a bit much, even for me.
Although there aren’t many or really any people that can relate to my particular situation, I am very lucky to have a close group of friends and family who have been incredibly supportive. These are people who knew nothing of narcolepsy or cataplexy prior to Dylan’s diagnosis who are now seasoned experts. These are people who are always offering to help in any way that they can. These are people who have been there for me during some of the darkest days of my life. These are people who bring the biggest gift to my parties with a card attached that says “thank you for being a friend.” These are people who deserve to be thanked and celebrated. So let’s get this gratitude party started!
The Parentals
I can say, with absolute certitude, that I am my parents’ favourite child. I have never once questioned this or doubted it for even a nanosecond. Not only was I by far their smartest, funniest and cutest child, I was also their only child (the term “only child” is the PC term for spoiled children who don’t know how to share and have been brainwashed into believing they are the best at everything and the centre of the universe). Consequently, Rylie and Dylkin (as my parents call him) are indubitably their favourite grandchildren. Even if I had siblings (I feel sorry for my hypothetical sibling who would so obviously take a back seat to me), Rylie and Dylan would still be their favourite grandchildren.
My parents live around the corner from me. Not in that annoying Everybody Loves Raymond way but in that awesome standby babysitter way. My parents travel a lot but whenever they are home, they always offer to babysit the kids on the weekend. I can’t tell you what a huge help this is to me and Mr. Bear. It is a few hours every week when we can unwind from being completely consumed with the kids which has been particularly demanding since Dylan has become chronically sleepy. We usually don’t do anything special – lunch, maybe some light shopping, a few shots of absinthe followed by a nap – but having that piece of mind that our kids are safe and being cared for by family who loves them just as much as us is truly a gift. The best part is that we never have to ask my parents to babysit. Every week, either my mom or dad will email me to ask if they can have the kids on Saturday or Sunday. I am forever asking my parents to help with the kids and they always do. My parents have done it all – picked the kids up from school, taken them to doctor appointments, taken them to extracurricular activities, babysat them sometimes with less than an hour’s notice and even had Ry sleepover when we were in the hospital with D for his sleep studies and had D sleepover when we were making the two day trek to visitor’s day at Camp Walden. I ask so much of my parents as it is that I feel guilty asking them to babysit if Mr. Bear and I don’t have anything in particular to do or anywhere important to go simply because we want a break. Having them offer up their time, knowing we need a break, is further proof that I am their favourite and truly the centre of their world. Thank you Mommy & Daddy!
My sisters from different misters
Despite being an only child, I have two older (but shorter) sisters. Jodith and Alison have truly become my family. Jodith picked me up in calculus class during our first week of university. If you’ve only ever picked up people in a bar, I highly recommend trying a math class. Jodith and I have been friends ever since, eventually becoming best friends and then evolving into family. Jodith has been a part of every single important milestone in my life and many unimportant moments too. She stood beside me as my matron of honour when I got married, she was at the hospital with me when Rylie and Dylan were born and after carrying 8 day old Dylan to the mohel, she stood beside me again to help get me through his bris. Funny story: I felt very strongly that I needed to be beside Dylan as he was being circumcised but I couldn’t bring myself to watch. Jodi stood next to me, acting as my eyes, giving me the play by play. As he was being snipped and started to cry, Jodi leaned in to whisper “just think, now his penis will look good and he can get a blow job from a nice Jewish girl when he is older”. I think I’m the only mother in the world who actually laughed out loud during her son’s bris.
Alison, or Crazy Auntie Ali as my children call her, is Jodi’s older sister and by extension, my older sister. Like a typical older sister, she is always there to give me and Jodi advice, she is always starting new trends we inevitably copy and she is always looking out for us. Alison can always make me laugh with her silliness and I love her dearly for it. Just last week she showed me what it looks like when a grape gives birth. The miracle of life is simply fascinating.
When Dylan was diagnosed, Jodi was determined to help. She would pop by my house just to chat. She regularly offered to pick up Dylan from school. And she was always there to listen. She read all the literature I posted on Facebook about narcolepsy and is probably just as knowledgeable as I am at this point. Both Jodi and Alison are by far the biggest supporters of my blog, religiously sharing every single post on their social media. When I told people about iGive and how easy it is to raise money for narcolepsy, Alison was the first person to sign up. For Rosh Hashana, Jodi sent an email to friends and family wishing them a happy New Year and made a donation to Wake Up Narcolepsy on their behalf. Both my sisters will do anything and everything they can to help me, no matter how big or small and for that I will be forever grateful. Thank you my sweet sisters!
Dr. J
When Jodi and I were in university together, we lived five minutes away from one another. Whenever I came to her house, I had a spot beside her driveway that I always parked in. I’ll never forget the day when I drove to her house and my spot was taken. Jamie’s car was parked in place of mine and at that moment, I knew he would be the future Mr. Jodi.
By extension, J is now also family. It’s useful having a doctor in the family. As a physician, he has always been there for my family to give medical advice whenever needed without any hesitation as if we were his blood relatives. And Dylan was no exception. From the moment Dylan started experiencing his first few symptoms, Jamie was on it – helping us find the best doctors, doing research and using his powers to work his magic time and time again. Dylan’s remarkably quick diagnosis is due in large part to Jamie. Narcolepsy is notorious for taking years, if not decades, to diagnose but thanks to my brother-in-law, Dylan was diagnosed in just six months. Thank you so much for helping to keep my family healthy J!
Super Nanny
Mylene is our amazing wonder nanny who started working with us one day after Dylan’s tonsillectomy and adenoidectomy last summer. On her first day, Mylene came upstairs to introduce herself to a recovering D. He politely greeted her with his standard ear-piercing “NO!” salutation. He was in an especially bad mood the week following his operation and I was sure Mylene would leave us. Every morning I woke up, half expecting Mylene to have abandoned us during the night leaving a note in her room that reads “Your family is bat shit crazy. Mylene, out”. But she didn’t. She stayed and she persevered. Mylene proved to be a match for my pugnacious Rylie and a patient caregiver to my tempermental D. Mylene took everything the kids threw her way with grace and equanimity. She is the perfect blend of discipline and fun and as an added bonus she is a wicked good chef.
Mylene has been with us from day one of Dylan’s narcolepsy & cataplexy diagnosis. She has been with us as we experimented with different types of drugs and dosages. She is a decorated army vet having won many battles in our civil war against Dylan and his meds. Despite it being much easier for her to let Dylan spend his days in front of a screen, she is adamant, maybe more so than even Mr. Bear and me, that he go outside to play or engage in some sort of physical activity everyday. She manages to convince Dylan to eat something other than milk and fishy crackers which is reason enough to give her a medal of bravery. Everyday, without complaint, she cleans up the same mess Dylan makes by peeling crayons or opening all the Lego. She is only slightly taller than Rylie, yet she is always carrying a sleepy Dylan or giving him a piggy back ride. Thank you Mylene for all that you have done and all that you continue you to do for our family.
My editor-in-chief & part-time legal advisor
Mark and Mr. Bear met while articling together at the same uncouth downtown criminal law firm over 10 years ago. After meeting Mark and learning of his quick wit and humour, I quickly claimed him as my friend. Mark is one of the few people I know who I would consider admitting to being intellectually inferior to if I had a gun to my head and the admission was the difference between of life or death. Mark is now one of my best friends. As a lawyer, Mark has frequently provided pro bono legal counsel to me and all my friends (we’re looking at you Alison). He is the kind of friend you can count on if you’re stuck on the highway in the rain with a flat tire or it’s 3am in the morning and you need a ride home or you have decided to start a blog and need an editor.
Mark and I have always shared a love for the written word. As we bantered back and forth via text, we slowly developed a lexicon of our own. “Beet” indicates we’re bored and need the other to entertain us. “Falafel” means we can’t talk right now. And “LP” means for the record (Mark and I also happen to be avid vinyl collectors although Dylan’s diagnosis has made it tough for me to get away for the day to go record shopping). When I told Mark I was thinking of starting a blog about Dylan, he was very supportive. He understood that writing was not only a release for me but probably my most effective tool for creating awareness. Mark was the first person I told about the blog. He immediately started helping me brainstorm blog topics and now takes pride in editing every single one of my blog posts (although I have doubted his abilities on more than one occasion when he admitted to not knowing the meaning of the words dehisce and argy-bargy). Thank you so much for all your help, your great ideas (he happened to come up with the topic for this post – I think he was fishing for some compliments) and for so often staying up late to edit my posts.
Cue play-off music
There are many others who have been incredibly supportive and should also be thanked.
My old work husband Dan speaks with me everyday about Dylan and is genuinely concerned for his well-being.
My elderly brother-in-law Jake deserves a huge thank you for schlepping Dylan home from school last year more times than I did. Given his advanced age and senility, I’m sure this was quite taxing on him.
I have to thank my good friends Julie and Rachel for simply being my friends and understanding why I have been distant this past year. Julie so sweetly dropped off a stuffed monkey for Dylan the day after his surgery who Dylan now affectionately calls Socks and sleeps with every night. Rachel is always taking me out to lunch and forcing me to be social (something I need) but at the same time understands when I bow out of parties and big group gatherings. Rachel and I share some similar issues with our kids and out of all my friends, she can probably best relate to my situation. She also has the contact information for every pseudo-doctor in Ontario on her smartphone which comes in handy when you need the number for an experienced child analrapist.
Dylan’s girlfriend Ava deserves a big thank you too. She is one of the few friends Dylan has who truly understands him. It never bothers her that Dylan often falls asleep during a playdate and even at the age of four she recognizes that Dylan needs some special loving.
Thank you so much to Ms. Kerzner, Dylan’s JK teacher, who took the time to learn all about his condition. She set-up a special bed just for Dylan in her class next to her desk so that he can take a nap whenever he feels tired. She is truly a teacher who goes above and beyond and I credit her completely with Dylan’s seamless transition to full-day school this past week.
Thank you to my future agent who hasn’t discovered me yet but will one day make me a successful author.
And finally, thank you to all my readers. Thank you to all the people who peruse this blog and especially to those who share it with their friends and networks. Thank you for being part of this unfortunate misadveture even it means wading through my pompously pretentious parlance.
#WakeUpDylan 