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Parenting with narcolepsy type 1

Hello, I am Jazmane, I am 30 years old, and I am a single mother of 2 handsome boys. Can you imagine the energy of a 7- and 2-year-old everyday wanting to do something outdoors every day or as simple as watching a movie together? Most days I will prep meals, clean and schoolwork when the kids are at school and daycare, so I do not have to cook 3 times a day, every day. This does work for me. Even with meal prepping, I will still Doordash food if I cannot get up and actually put our plates together. With school, I like to understand every time I am reading. I have no support system when it comes to raising my sons. My 7-year-old helps me a lot. I often tell him that he has been here before because he is so wise, smart and independent at a young age. I've been living with narcolepsy type 1 since I was a child, but I was diagnosed when I was 21 years old. I know it takes self-discipline to keep yourself on a routine. My therapist told me to focus on what I can control and not what I cannot control. Also, parenting is already complex but as a single mother with narcolepsy, it is more complicated and to stop being so hard on myself. We often do not think we are living up to society standards when in all honesty, we should only live up to what standards we set for that day. It is really a day-to-day process, and it does not get easier.

  1. I am sorry to hear that you do not have support in raising your sons. They say it takes a village to raise children, and I understand that it must be difficult doing it alone, let alone while also having narcolepsy! You are a superhuman! It sounds like you are doing all the right things, as much as you can. I can't imagine living with narcolepsy symptoms while also working and raising kids. You deserve so much recognition for this! I know just having a service dog everyday I get up and take care of her needs. But I feel guilty sometimes that I cannot take her outside on walks to get exercise everyday like able-bodied pet parents can. But I do try my best, and I have to give myself credit for that. It sounds like you are doing your best as well, and that is worth something. I agree with your therapist, life is easier when I focus on what I can control rather than what I cannot. That doesn't make my difficulties smaller in any way, but gives me a modicum feeling of control over crappy situations which can be helpful. It isn't always a fix though, since our biggest problems are oftentimes outside of our control. You are a strong human and I am so grateful to have you contributing to our community in this way. Please know you are not alone in this! Warmly, Tatiana ( Team Member)

    1. You are doing a wonderful job raising your boys. Parenting with a partner is not easy. Add on the single and the narcolepsy, that's even more on your plate. I struggle through my days without kids. My boyfriend is hesitant to have kids with me because of it. I'm curious, how you handle cataplexy with your little ones around? My boyfriend is scared I will drop our baby or something.

      1. HI . I am tagging Jazmane ( ) here so she will see your comment. Warmly, Lori (Team Member)

    2. Hi Jazmane (). I see you are new to the community. Welcome! What a wise therapist you have. That is such great advice, especially considering your situation. I can't imagine parenting alone with Type 1 Narcolepsy. You have my respect. Are you taking any treatments that help? Do you know your cataplexy triggers? Very often, children of parents with chronic illnesses become some of the most empathic adults. I'm betting your kids will be wonderfully kind and loving adults. Please know we are here for you whenever you need support or a place to vent. I know it's not the same as in-person support, but you have a whole community here of people who understand what you are going through. Sending the best of wishes and lots of gentle hugs your way. - Lori (Team Member)

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