Severe Narcoleptic considering children. Help!!!

Jessica - posted on 11/23/2010 ( 1 mom has responded )

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Hello!

I am a 25 yr old women who is getting married next winter My fiance and I really want children. I have Narcolepsy and do not work. The doctors have described my conditon as sever narcolepsy because of how often I fall asleep compared to some people with narcolepsy. I know I could be a good mom once my children were a little older and didn't need to be looked after all the time. My main concern is raising them until they reach this point. Maybe age 5 or so. During the day I fall asleep on average every 2 hours or so. I've tried babysitting because I love children and needed the extra income and it didn't work at all. My fiance works during the day. I am on social security because I am unable to hold a job. Well, at least I haven't founf one that's works yet however I'm always looking! Social security pays nothing! Less than $700/mon and my fiance only makes around $30,000 a year so hiring a nanny is something we could never afford. My question is are there any free nanny servies out there for people with disabilities? I would just need some for a fe hours during the day while my then husband was at work and only until my children were old enough for me to take a short nap here or there. Also, how do you moms out there handle living with narcolepsy and being a wife and mother? Any suguestions of jobs I could work out of my home on my own schedule due to how often I fall asleep? Any and all help or suggestions is beyond appreciated! Thank you!

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Cath - posted on 02/11/2011

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Hi Jessica,

I was diagnosed with narcolepsy in 2002. I was told that I am a particularly sleepy narcolept - I can have anywhere from 1 to 20 'turns' a day when unmedicated, slightly fewer when medicated. I am lucky in that I usually get 1-2 minutes warning.

Since being diagnosed I have had 3 children currently aged 6 years, 3 years and 10 months. Unmedicated during most of the pregnancy and whilst attempting to breastfeed has certainly brought its challenges, on top of the obvious one of keep the kids safe when asleep. I have not been able to access any physical support and as we move a lot (4 countries and 2 cities within our home country since having first child) I do not have family around either.

All I can say is that it is difficult, but it is possible if you want kids. Some things I did:
some bottle feeding as I never managed a breastfeed without falling asleep
a plump feeding pillow so that you can lean back or fall back and not forward onto baby if you fall asleep during a feed
a bouncinette chair (US$15) to feed baby in when bottle feeding
a playpen as a safe space for baby
I have all my cupboards in the laundry and kitchen childlocked except one which houses toys and plastic bits they can play with
For my eldest I have healthy and some sweet snacks and a drink bottle always available at his level
The Wiggles - an Australian kids singing group - a great way to help explain narcolepsy to the kids as the character Jeff is always falling asleep

I am a strong believer that narcolepsy should not stop me from doing anything, it may mean I have to plan a bit more, but heh.

Hope you go ahead, and if you have nay questions feel free to ask
Cath

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