Hello, my name is Christina and I am a single mom, raising two small boys. I have had narcolepsy and severe cataplexy since I was born. My boys are hyperactive little monsters! They don’t play…they destroy! Lol. I’m curious to know what kind of coping methods other narcoleptic’s children have developed as a result of being raised under such unique circumstances. How do your kids react when mom has a full out cataplexy attack? How do they deal when mom can’t get up out of bed because she’s too tired? How do your kids describe mommy’s ‘condition’ when you ask them?
Hi there, i am a single mom also with a son and daughter. Children are resiliant and love you as you are. As cliche as that may seem its true. Depending on how small they are you can just start to explain to them in easy terms. Mommy doesnt have the things in her that you have that keep her awake or asleep right. Just always reassure them of the positive things. Sometimes its hard if you have to compare it to something else. But to slowly get them to understand your always you and its just something you cant help. My guess is you have already been doing a great job at it. My kids only experianced a severe cataplexy episode a year a go. My son was 12 and he was beside himself. Because i had not warned him earlier they had gotten so bad. They get frustrated. But they are what keeps us going always. If you have good friends or family around on the really tired days maybe they can take the boys to a park or play a game. It will be ok and you sound like a wonderful mom.
My boys are 7 and 4 years old. I’ve been training them since they were born to understand What’s different about their mom. My 7 year old is so funny when he explains what narcolepsy is. He says its like when the sleep in your brain is messed up. Lol. One time when I was having cataplexy for a long period…my littlest got bored waiting for me to get up and decided to drive his hot wheel cars up and down my face and arms. Lol. It made me laugh and last even longer. But I loved it anyway!
By the time I actually new what was wrong with me my children were 15, 13 and 6 years old.They are are now grown adults. I asked them how they felt about having a mother who was different growing up. All had different answer ,but came to the conclusion that ,it made them stronger and closer to each other,it was just the way it was ,they didn’t realize that it was any different that’s just the way it was. All of my children are responsible adult ,with great carries and families. I was lucky I had great family who help a lot. Never worry kids are resilient.
I don’t worry about my children, more so Im curious to hear about what coping skills other children raised in narcoleptic homes have developed. I know my boys have figured out some pretty funny ways to get around me laying in bed tired all day to get their goals accomplished. I’d say they learned pretty fast that when mom says,’’ l’m getting up" or “I’ll get up and do it in a minute” means I’m going back to sleep or I’m telling you this in my sleep! Lol. As a result, the first skill they learned was get it myself. They climb chairs to to get what they need out of the cupboards. Part that makes me laugh is that they bring it to the side of my bed! The gallon of milk they would drag over and a cup…" Open this mom." Then drag it back to the fridge. My littlest is 4 now and the other day he dragged the toaster up the flight of stairs to my room, made me plug it in beside my bedstand and made himself some toast. It cracked me up. Despite common learning mishaps, like microwaving raviolis in the can or instant oatmeal with no water, they are pretty darn self sufficient I’d say(:
I'm a single mom - daughter is 6, son is 2. They are both learning how to take full advantage of my untimely naps. I often wake up to find them eating everything they can reach in the kitchen or putting on my makeup or doing pretty much anything that they know I would put a stop to if awake. The 6 year old has figured out how to wake me up if she gets bored - she screams something like "No! Put the knife DOWN!" to her little brother and I wake up in a panic... to find them grinning at me with a bag of Cheetos.
That is really refreshing to hear Leah(: I have to say, the first thing my little guys do when I fall asleep too is eat all the goodies in the house. I like to put them on my night stand as bait…pretend I dozed off, and wait. Right as they sneak up to it and start to reach for it…I sit up up and scream, " Ahhhh! Caught ya!" Lol. Their eyes get huge and they laugh and scream and ran away to plan another attempt at my goodies(:
I would love to see that. Teasing my children was such fun when they were little.
Your story was exactly what I was looking for. Please share more funny things your children picked up on their own as they adapted to life growing up with a narcoleptic mommy!
I’ll share a recent one. I have been recovering from the flu, my potassium levels were way low causing me to be extremely weak. Normally when I have cataplexy Im able to fight through it pretty well. I was at my neurologist’s office waiting for a hard copy of my scripts, my mom drove me and was in a hurry to get home…STRESSED me out. I ended up having cataplexy, full body collapse, since I was so weak from being sick! Everyone was swarming me and I could hear them comforting my 4yr old son, worrying he might be scared. Truth is…he could have cared less. Lol. They gave him candy and when I came to, I said to him," oops, mommy fell down again!". My son replied, " uh huh. Umm…can you open my candy now?!" I just shook my head(: and opened his candy of course. Little booger! Lol
My oldest son (27) is home for awhile. I'm trying to re-set my sleep time so calls up the stairs at 5:30 before he leaves for work. This morning I responded with "Birds? What birds!". I heard him chuckle :).
I'm a single mom of two grown boys. When they were teens, I told them that any decisions I make while I'm falling asleep don't count. So once as I was fading I shouted "Don't drive the car! There's no oil in it!" So he drove the car, and later told me, "Mom, now there's smoke coming out of the car". We all piled in for a test drive, and sure enough. It cost us a head gasket! Shame was that I always have a quart of oil in the house but I hadn't had the energy to put it in.
Your kids may be the only ones around who understand when/why you collapse. Besides that benefit, mutual understanding shows them how to be part of a team knowing that everyone is different and makes their own significant contribution. I like your team :).
P.S. So I taught them how to check the oil. Two years later their dad let them use his car, and just to be safe they kept filling the oil to the top until it hardly ran! Live and learn...
My kids are 14 and 12 now. They know I can hear them when I’m down and I will deal with anything that happened when I wakeup again. I also have warnings before I go down. If I’m not in the bed or safely seating in a chair. They will help me to the bed if there’s enough time. If not they help me to the floor. My son will get something for my head and then they fight over who is going to get the blanket. Cause they know I’m going to be freezing when I wakeup. My son will seat and just talk to me like I’m awake. Sometimes he will put on a movie I like. They both know how to cook. When they where younger I would put snacks in bottom of the fridge and in the bottom cabinets. If we go out to eat and I go to sleep they don’t act any different it’s are normal. So, if someone starts talking about me being asleep. Sometimes they will tell them “she can hear you, she has narcolepsy and will talk to you in about 10-15 minutes when she wakes up.” They I think are more understanding when someone act’s different then what is considered normal. Cause they know everyone’s “normal” is different and it’s ok.