Monday, August 9

The Narcoleptic Parent - Dangerously In Love

Image courtesy of arztsamui/
Can someone with Narcolepsy really be a good parent?

My husband and I have one child. We adore her, dote on her, and watch the sun rise and set on her. She is a precious, genius child - and I say this with absolutely no bias at all of course. She is 3 years old. Because we have planned for just one child, ours is a very relaxed family in which she is the centerpiece. She's like the playing card that makes that cool sound as the bike's spokes turn 'round.

Notice that I said that we adore her.

I know that my husband loves our daughter. I'm also proud to say that he's a very good dad. He's never hesitant to get down on her level to play with her, read with her, or make up silly songs. I like seeing them together. As any mom would understand, it does my heart good. When Narcolepsy takes over, he struggles to treat her with love and kindness, even when he's tired or irritable. Sometimes he fails at this, but then again, sometimes I do too.

But I've never left medication within her reach.

This is a recurring problem for us that started about a year ago. When my husband was taking Provigil, this never happened. It was when he was switched to Adderall that the issues began. One evening, I was washing dishes when my then 2-year-old walked into the room chewing something. Immediately, I opened her mouth and wiped out tiny pieces of something orange and chalky. The color looked familiar, but I just couldn't place it. I investigated - checking each room, looking under furniture, going through her toy box... nothing looked even close to what had been in her mouth. I saved the fragments in a napkin and considered calling Poison Control. Because she was acting completely normal, instead I called my mother. Hours later, my daughter was still acting normal - except... she seemed a little hyper, she refused to eat or nap all night, and then she started to move her mouth in a weird way. It was barely noticeable, but eventually I realized that she was grinding her teeth! Then I knew. She had eaten one of my husband's Adderall pills.

That night was terrifying, but it could have been so much worse. Because I had wiped most of the pill out of her mouth, it was determined that a hospital visit wasn't necessary unless she started exhibiting certain symptoms that would indicate she was having an adverse or allergic reaction. I was instructed not to leave her unattended, and when she did fall asleep, to watch her breathing for several hours. Suffice it to say it was a long night. My daughter wasn't able to fall asleep until the next day. By then, my whole family was exhausted but relieved. She was OK.

Although I was initially furious with my husband, I got over it. It was an accident. He dropped a pill on the floor and didn't notice. Our daughter was fine, he would be more careful, life would go on. I let it go.

Until it happened again.

This time I found several pills on the floor of the car and got to them before our daughter did. The next time they were in-between the cushions of the couch. The next time the bottle was on the living room table. The next time I found a pill on the floor of the bathroom. Most recently, the bottle was on the sofa in the living room. Because no pill bottle is truly, absolutely child-proof, I consider leaving a bottle of prescription medicine within her reach just as dangerous as leaving a single pill.

We've had several discussions about my husband's carelessness. I know that he doesn't mean to put our daughter in danger, but that isn't the point. He resists any suggestions I make to keep his medication in one particular place because he prefers to keep it on his person. This also means that he sometimes leaves his medicine at other places and then doesn't have it when he needs it. Narcolepsy makes my husband incredibly forgetful. Believe me, if you aren't familiar with narcolepsy, you can't imagine. He literally forgets things all the time. It drives him nuts. Lists and nagging don't help - so his frustration with his memory is hard to watch. That's why he prefers to keep his medicine with him at all times. Otherwise, he might forget to take it. I'm sure there's a solution that will work for our family - we have yet to find it but I know it's out there.

As for my question - can a Narcoleptic really be a good parent? I think the tone of that question is a little inflammatory. Would I ask, can someone with cancer be a good parent? Can someone suffering from depression be a good parent? Can someone with any kind of chronic illness be a good parent? How about, Can someone out-of-shape, undereducated, poor, or ______________(Fill-in-the-blank) be a good parent? To me the answer is obvious. My husband knows that he can do better keeping our daughter safe. And he's willing to try. So no, maybe not everyone with a chronic illness is a good parent. Maybe they simply can't be because their illness is too debilitating. For others, maybe they do the best they can and are willing to try. To me, that's a good parent no matter what sort of health they're in - that willingness to try.


  1. As you said - a tad inflammatory in the way you approached the question, but in fact I completely get it. For me, the two big concerns have always been losing sight or track of a child or having a driving issue. I never had the medication problem because I guess I just built good happens early.

    But I have 7 children, the youngest being 6 1/2 and the oldest being 18. I know for certain that their complaints about my parenting and narcolepsy have more to do with being too tired to play ball or an inability to stay awake for a school play rather than any sense of endangerment or otherwise, and I am confident that they feel loved and valued because they are.

    Perhaps especially because of the narcolepsy I value my moments with my kids more, and yes, I have times when I am short tempered or less-than-fun - but I do the best I can, and my wife picks up the slack and/or smacks me into gear when needed ;-)

    What might help you is this: Narcolepsy right now is owning your experiences and worries, but it doesn't have to. Yes, it's aggravating and scary and it has altered your life - but I refuse to view it as any different than needing glasses to see. Life sucks when its all a blur, but needing glasses doesn't control my life - it's just part of who I am. Instead of letting it own your situation, just make it part of life. And keep poking your husband til he takes care of the meds - I speak from experience - we Narcoleptics need reminders often and have to learn to accept them gracefully ;-)

    My Badger-wife knows when the claws have to come out and it's ALWAYS my own fault!

  2. Hi JD,
    I appreciate your comment!
    Wow 7 children! Good grief - and here I am trying to keep it together with just 1... Actually narcolepsy isn't owning our life - I'm sure it seems that way because that's all I talk about here. But that's the point. This blog is my outlet, where all I do is go on and on about any/everything re: narcolepsy I can think of! That way, it doesn't get control of our lives, ya know?
    ...and I will keep poking. I like the badger comparison - badgers are cute. :o)
    Thanks for the encouragement!

  3. I've had to take one of my dogs and one of my cats to the emergency animal hospital because they ate a pill I'd dropped on the floor. I couldn't believe I let it happen more than once! I feel like I'm very careful with my medicine, but for some reason, I do seem to drop pills a lot. It aggravates my husband to no end. He tries to make me put all my medications for the week into one of those pill organizers, and I try to do it. But sometimes I get to Saturday and just don't have the energy to refill it. Which means he can't tell if I've taken my meds when I can't remember, which is all the time. I set alarms on my cell phone, and the rule is that the alarm can't be turned off until I've swallowed the pills. I've turned it off, gotten up to take the meds, and then forgotten to actually take them. It helps a lot, but we still have some kinks to work out.

  4. I know you posted this years ago- I found it by chance one night while in one of my states of self doubt regarding my own ability to be a good parent. I am a mommy of 3, and as you probably guessed, narcoleptic. I hope things have gotten better for you and your family in the situation regarding keeping your husband's pills in a place where they can be useful to him, and safely away from your daughter. My husband, like you, tries so hard to understand and cope with the many challenges this illness places in daily life. It's incredible how multi-faceted narcolepsy is, and how much it plays into mood and ability to conduct daily life. I can't imagine how frustrating it is to be married to a narcoleptic- we want so badly to excel, and in so many ways feel as though failure is all around us. I, for example, feel terrible when my boys want me to play with them and I just can't move. Or when I sleep through our time together. My pregnancy with my daughter, off all of my medication, was one of the most excruciating challenges of my life. I like how you don't give up your hope in him and that eventually a solution will come. When I was reading your dilemma, it reminded me of so many times when there was an answer to some problem that we were facing, but try as I might, I couldn't see through my fog long enough to figure it out. I have had to depend on my husband so much to be the problem solver, as I'm sure you can understand. I know it's not an easy task to always be the responsible one that faces so many challenges seemingly alone, while your spouse faces different and nearly invisible ones. I am hoping that my quality of life improves when I got back on the name brand provigil next week after my neurologist appointment. It's expensive, but thankfully with 3 month prescriptions, it will be possible. I couldn't do the $200 every month, but every 3 months I can!
    Anyway, it was nice to find your blog. I haven't read more than just this post yet, but I am interested to see another woman's perspective, on the other side of the equation. Thanks for posting.