Parents are always tired, right? We are constantly walking around on the brink of sleep deprivation, especially when babies are young. If there is something mothers can bond over, it is their constant lack of sleep and wondering when their babies will finally sleep through the night.
So much about parenting, motherhood and raising kids revolves around sleep or the lack thereof. Parents live for and dream of sleep.
Imagine constantly feeling like you have gone without sleep for 48 hours. Your body aches in a futile attempt to get you to slow down. Your brain is in a chronic fog, and it’s hard to complete thoughts, much less sentences when you speak. Your mind seems to be operating in slow motion.
The restful sleep you so long for eludes you. Once you lay your head on the pillow, your mind starts to race, or sound bites from earlier in the day play in a constant loop. It can be a song lyric, a technical term, fancy words or simply someone’s name playing on repeat.
Finally, you fall asleep, but now the dreams… or are you still awake? The line between asleep and awake is blurred – and very subjective. There is no such thing as “sweet dreams” in your vocabulary. There are hallucinations and nightmares, on a good night.
That’s a brief description of what it feels like to have narcolepsy.
Parenting with a chronic condition is no easy task. As a parent with narcolepsy, I am constantly balancing taking care of myself and caring for others, and rarely have enough energy and time to do both. Most days, running out of “spoons” is unavoidable. Other times, I may have a streak of several good hours or days, maybe even decent weeks.
But even with all that said, I will go out on a limb and claim that narcolepsy has made me a better parent than I might be otherwise. Being raised by a parent with narcolepsy is teaching our four boys a number of things they otherwise wouldn’t understand, and for that I am thankful. Yes, I said it – I am thankful for my narcolepsy. Here are four reasons why I feel it makes me a better parent:
1. We don’t over-schedule our kids. Yes, it would be a logistical nightmare to balance four boys with 2 or 3 extra curricular activities. The mere thought of it makes me yawn. We try to have no more than one or two things on the schedule on any given day. Slowing down and spending more time at home than most families has created a bond between the boys like no other. They also know how to play with their toys and entertain themselves.
2. Our kids show empathy every day. The boys know I have narcolepsy with cataplexy and they understand what that means in my particular case. For example, there is something oh so tiring about reading to the kids. Some days I just doze off for a few seconds; other days I take a quick power nap. When I wake up, I know I will have a pillow shoved under my head and a blanket draped over me – and a little boy patiently holding his book, waiting for me so we can continue reading.
3. The boys are learning responsibility. There are days where I have enough energy to do homework, cook dinner and clean up afterward, but on other days I need an extra hand with setting the table or doing the dishes. The kids know to offer their help without me having to chase them down. They understand that they can’t always tell by looking at me if I am having a good day or a sleepy day.
4. We are raising four resilient boys. The kids know what to do in case I experience cataplexy while we are out in public. They know how to reach my husband on my cell phone and who they should ask for help. Our instructions to them are simple: “Keep your brothers close and safe. Direct first responders to look at my medical alert bracelet. Call Dada.”
Practicing the drill, explaining cataplexy and teaching them how to react was one of the hardest things I have had to do due to my narcolepsy. But we couldn’t afford to sugar-coat things or have them not understand exactly what was happening. They take great pride in always making sure I am doing well. They know that we as parents will always care for and protect them. But they have also learned we are only human – and in a family, we all have to protect and care for each other.
I am the first to admit that parenting with narcolepsy has its challenges. But with lots of love, empathy, patience and a good healthy sense of humor it is possible to find the good in narcolepsy. My recipe for successful parenting with narcolepsy is to take life one nap at a time