Parenting with Narcolepsy
We invited three moms with narcolepsy to join us during our Denver conference to talk about what it’s like to be a parent with narcolepsy.
You can read more from this Narcolepsy Roundtable discussion in First Quarter 2015 issues of The Network, our quarterly member newsletter. To receive the newsletter, and a host of other benefits, become a Narcolepsy Network Member.
Meet our participants:
Cat Thoma is from Englewood, Colorado and has two little girls, ages four and six.
Aja Marks from Indian Trail, North Carolina has a two and a half year old a son.
Chalanda Samec is from Lake Charles, Louisiana. She has three children, ages five, seven and 12.
Q: The effects of narcolepsy are often described as similar to what it’s like to have a newborn. So as a parent, how do you handle having a newborn and having narcolepsy?
Cat: I had my kids before I was diagnosed. That’s why I think it took a while for me to get diagnosed, because I just felt the same as if I had a newborn. For me, you just learn to live being sleepy.
Aja: When my son was a newborn, which doesn’t seem that long ago, any help I could get was absolutely crucial. You know that there are nights when you aren’t going to get sleep and the next day you’re up, so if anybody is willing to watch, even just for an hour, let everything else go. The house can be a mess, it doesn’t matter. Taking care of the baby and sleeping. That’s all I cared about.
Chalanda: For me, I was diagnosed after I already had all our children. We have since found out that I started showing sign of narcolepsy around the time I was 13, but I wasn’t diagnosed until I was around 25. Like Aja said, accepting help when you can, letting go of your pride and asking for help. Don’t be shy. If you really need something don’t be afraid to ask for. People aren’t mind readers so you really have to put it out there what you need before you’re going to get any kind of help.
Cat: I think it’s just that when you have narcolepsy, you have to know that everything is different for you. I mean, you can’t do things the way everyone else can. Whether it’s being a parent or having a newborn or even being pregnant with narcolepsy. It’s so completely different. You just have to learn to adjust.
And for me, I see it as a fight or flight situation. I could just be like, “Well, I’m sick. I don’t want to do anything,” but I’ve chosen not to. I don’t want my children growing up seeing me that way – as the mom who is tired all the time and sleeping.
Chalanda: Yeah, it’s just rolling with it. I mean, what do you do it you’re in the middle of Wal-Mart with your newborn and all of a sudden they decide they want to projectile vomit all over your shirt? You roll with it.
It’s not exactly saying that you can’t do things the way other people can. I like to think of it as you have to find a way to be able to do things that other people can. It’s not that we can’t do. We still can do. It’s just that we have to go a roundabout way of doing it.
Aja: It takes discipline. There’s no if, and or but about it! You’re going to be in bed at 10:00 because you need to. You have to.
Cat: You have to.
Aja: My day revolves around before naptime. If the grocery shopping needs to get done, or a play date, it has to happen before naptime. Because after that, I’m going to wake up from my nap and he’s going to wake up from his nap and then I have to do what I call my crazy time, which is that time after I’ve woken up where I have all this energy and it’s time to cook, clean, do whatever I need to do in the house before I get that cranky-crazy at the end of the night that we all get. So you schedule. You’re calendar is sooo in you, like you have to have that. It helps. And I think your kids just get used to it. It’s what we do. I know there are no play dates after 1:00 and he’ll grow up to know that too.
Chalanda: I think a lot of what parenting is getting stuff done that you know you have to do. It’s not a matter of “whatever, if it happens it happens.”
Q: Aja, what was pregnancy like since you were diagnosed before you were pregnant?
Aja: I made a decision to stay on my medications while I was pregnant and to just be really careful and treat me like I was high-risk. Obviously I couldn’t breast feed, which was fine. I stayed on it and crossed my fingers and I have a healthy 2 1/2 year old. I didn’t have a choice. I had to work, so I couldn’t go off my meds completely. I’m a teacher. I had to teach. I had to stay awake. Everything worked out ok and he’s fine.
Q: Cat, why do you think your narcolepsy started during pregnancy?
Cat: I think it started during my second pregnancy. I ended up in the emergency room with what they thought was a stroke because I couldn’t move my left side. Which, I’m thinking was cataplexy, because all the tests came back negative. But in this last year, my husband and I have started trying to have another baby so I’m going through this with doctors. I think most doctors are afraid of pregnancy unless they’re in the OB field. Anytime I was in the hospital it was like, “Oh my God, she’s pregnant. She’s pregnant. Oh my God. We don’t know what to do with her.”
In speaking with my sleep doctor, they want me to go off of all my medications. I tried for about a month and that was hell. I thought I was going to lose my job, I thought I was going to lose my mind. So I contacted my sleep doctor and said, hey, I’m not going to try for a baby, I need to be back on my meds. They put me back on my meds.
I went to my OB and we talked about it and she goes, “no, you’re good. Stay on your medications at least until you’re pregnant. Once you’re pregnant then we can talk about what the best option is for you.” Their perspective about it is that there’s really not enough research about it saying yes or no with the medications and if you can’t function, you’re going to lose you job and do the right things then, yeah, you can stay on the medications. I’ve talked to plenty of people through social media that have said they stayed on their medications and were fine.
Q: How is it waking up at night with your kids on Xyrem? This is an issue that lots of people worry about.
Cat: To me, I can fight through the Xyrem every single time if I have to. I’m a mom first, and I feel like I’m always going to be a mom. Yeah, I’m always going to have narcolepsy too, and the Xyrem can knock you out, but if my child needs me, I can fight through that fog to get to them. You’re fuzzy but you can do it. And I’ve made sure my girls know when and how to wake me up no matter how far asleep I am.
Q: How do they wake you up?
Cat: If they really, really need me, I tell them that they really have to get in my face. If my eyes flutter even the littlest bit and I see a face then I wake up, so I tell them they just have to keep poking me until they get me. I’ve also taught them when it’s an emergency and when they just want attention.
When my husband is out of town I let them sleep in bed with me. When they need me in the middle of the night its usually because they’re scared or having nightmare or a monster in their closet or whatever. When they sleep in bed with us, magically those monsters disappear, so I have them sleep with me and usually they don’t even get up.
Q: Chalanda, how have your experiences waking on Xyrem been?
Chalanda: We were past most of the waking up in the middle of the night before I got on Xyrem, but I have a 5 year old, so they do still come. And most of the time they know to go to Daddy’s side of the bed. It’s easier. And once you get used to the medication, you can judge how much you can do.
Cat: I totally agree with that. Everyone reacts differently to Xyrem so everyone has different limits. You have to learn for yourself. But once you’ve been on it and you get it, you know those limits.
Q: What’s your advice to a woman with narcolepsy who is wondering if she can be a parent?
Cat: If I went back to myself before I had kids and said, hey, by the way, you’re going to be diagnosed with narcolepsy and this is what your life is going to be like, I still would do it all over again. It doesn’t matter if you have narcolepsy or not, as a mom you just find a way to make it work. It’s absolutely possible. It’s just another thing you have to accommodate.