3 replies to this topic

[jstjoehere]

Im a full time single dad of a great 12 yr old daughter. For the most part I keep up the house cook and help her with homework ect. But playtime seems to be the issue here. She loves to play outside playing basketball. volley ball, bad mitten, you know all the really exciting stuff that tends to set off cataplexy. Playing catch with a soft ball or basketball is usually not much of a problem but when it comes to making a basket or hitting a softball ect alot of times I end up on the ground. Well not so much on the ground completely as Ive learned to not fight the attacks til they take me completely down I can usually just squat and steady myself til it passes sometimes I sit. Guess I have learned to fall gracefully so to speak lol. But its when I try and cant she seems disappointed or feels like it is her fault that I got sick. I have explained to her that its not and Im pretty sure she understands. I try to play cards video games and other more relaxed stuff with her but shes a little more high energy. She loves to ride horses and Ive managed to break a horse for her to ride. I guess Im just wandering if anyone else has a similar situation that I can relate to.

[iturnedintoamartian]

I am not a single parent and I don't have typical cataplexy. BUT. I am a parent that does most of the work and I also find it extremely difficult. My son is a toddler so he doesn't notice as much but it's my extreme sleepiness that makes me not very active with him. I am extremely interactive with him, talking to him and joking, reading to him. We have an amazing relationship. Playing, however, being super active, I just don't have the energy for it. Of course I force myself to sometimes but I definitely feel like a crap parent at times. Taking care of almost all of the daily household responsibilities and the majority of the responsibilities in caring for my son... I honestly have no idea how I have made it this far. 

I suppose what I mean to say in all of it is that, loving your child and showing you love them to the best of your ability is what matters. That doesn't make it feel any better when you see her get sad or disappointed but I am sure she gets it. She will thank you later for staying engaged and trying to find ways to bond and enjoy your time together in spite of your condition. Sounds like you're doing a pretty awesome job. 

Sorry if that wasn't exactly the answer you were wanting. I just know how difficult being a parent already can be. Then, adding something like narcolepsy on top of it and continuing to be a good parent is extremely admirable. 

[jstjoehere]

My daughter and I have a super relationship were very close. We have had our times and now that shes older she understands more thank goodness. She knows that when I have an attack just to stay calm and let it run its course and she has learned to noticed the little things like  the twitching or me taking deep breaths trying to calm it down lol. Guess she has learned when I need a break. Your right its extremely hard to raise a child when you have Narcolepsy finding the energy to play games or go to school activities is really hard sometimes. Not to mention the crowds. You would have to have cataplexy to understand that. Seems like the same thing that would set off a panic attack would set off the cataplexy. I really appreciate your reply it helps alot. 

[iturnedintoamartian]

Well, you can say that there's at least one good thing that will come out of your cataplexy especially- I am sure your daughter will grow up to be a very non-judgmental, helpful, caring adult. In my opinion, that's maybe the most important part about the influence we have on our children. Sometimes it's learned in less than optimal circumstances but I suppose that's better than not being learned at all.