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Being A Single Parent With N/c


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#1 jstjoehere

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Posted 29 March 2012 - 05:41 AM

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.

#2 iturnedintoamartian

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Posted 20 May 2013 - 09:01 AM

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. 



#3 jstjoehere

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Posted 20 May 2013 - 10:00 AM

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. 



#4 iturnedintoamartian

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Posted 20 May 2013 - 11:24 AM

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. 



#5 Hopeful10

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Posted 24 August 2013 - 02:58 PM

This is a late reply, but I want to applaud you for doing activities with your daughter. I was a single parent with my son for years and, at the acute onset and official diagnosis, he was 6 years old. I had to modify my activities with him, especially doing sports, but found other activity options that we both enjoyed. As far as sports, I made sure he got the practice and participation he needed in group settings or teams and my role shifted into spectator that took photos to capture the memories. I was grateful to participate that way and he liked the audience.

 

He is older now and any time I invested in him was time well spent. When he was in grade school, he didn't understand what was wrong with me except I "needed naps." I shared age appropriate information with him, per my doctor's advice, as he got older and asked more questions. (I didn't want him going into grade school and sharing the "N" or "C" word with everyone when he was younger.) 

 

I hope your daughter understands it has nothing to do with her, including the attacks. That is taking a lot of responsibility on herself. Hopefully she understands now with your encouragement that it is what it is. You are a trooper to keep doing activities and not letting it stop you, but I hope you take good care of yourself.

 

I agree with Iturnedintoamartian that she will be more sensitive to others because of you. I have a family member with a different disability who is much loved and it made all of us more thoughtful and sensitive to disability, handicap, special needs, etc. and treating others with kindness and respect. (Several family members ended up being nurses. :)

 

God bless!



#6 jstjoehere

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Posted 24 August 2013 - 03:41 PM

Thank you for your reply. I know this post is old but whenever someone posts I always try to reply. My daughter and I am doing great. She has learned that I cant always stay awake and that dad needs his naps. She also knows not to push me when Im having an off day. We still try to play what sports we can and yea I still push myself a little harder than I should til I feel the cataplexy starting to act up but its worth every little twitch and shake I may have just to see that smile on her face. Shes 13 now and has become quite the respectable young lady. She makes me so proud. We probably have the closest father daughter relationships I know of. Of course being dad I dont know all the answers to her female questions but I always do my best. Thats a little off subject I know. 

 

It seems whenever I get a little down about things is when someone drops on and leaves a little post of encouragement here for me to read it helps so much. Thanks to each and every one of you for helping me get by. 



#7 Hopeful10

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Posted 24 August 2013 - 04:16 PM

I am glad to hear your daughter is doing well and has a better understanding. I am also glad to hear that she shared that concern with you. That is a sign of a healthy communication. :)

 

I understand your situation because my activities were altered and I was left with not knowing how to explain it to him due to his age at the time. Why don't we play softball, tennis, basketball, etc. anymore? I found ways for him to still do the sports but took a different role. At this point, he understands I need naps, same as you, to function better. Not all days are the same for me, but we work around it. 

 

When I was a teen, I had great women in my life including my art teacher, volleyball coaches, family friend, friend's moms, and grandma that helped with some of the "female" conversations and perspective. :) I sought out what I needed from people I looked up to and don't feel like I had any lack. Please don't worry about that part. She will appreciate your efforts, if not already, in the long run.

 

Take care and God bless you both!