08 May Mother’s Day and Narcolepsy: Reflections from a Mom and Daughter Duo
By Tana Bao MSN, NP, RN
There are few bonds as strong as the one that exists between a mother and daughter.
From the outside, Kristin Gagnon (mom) and Cara Weaver (daughter) look like any other mom and daughter pair. However, these two share more than just similar genes.
Both Cara and Kristin share a common diagnosis of type II narcolepsy.
Mom and Daughter’s Journey To Diagnosis
While their journeys to diagnosis were unique, Cara and Kristin have naturally been very involved in each other’s narcolepsy journeys.
Cara’s journey began in eighth grade, at which time she began having issues with tiredness and not wanting to go to school. As a concerned mother, Kristin took Cara to see several healthcare providers to try and get treatment and answers. Cara ultimately was misdiagnosed with depression, which they both understand now is common, unfortunately, for many people with narcolepsy.
She began to see a psychotherapist regularly for the next several years. During this time, Cara’s sleepiness progressed. By eleventh grade, she was taking medical half days from school because she just could not make it through the day.
Her therapist offhandedly mentioned sleep testing at one of their sessions sometime around 2018, and by March of that year, Cara had her sleep study which showed narcolepsy.
Kristin recalls the day she and Cara walked out of the doctor’s office after receiving the diagnosis, four years after Cara’s symptoms began. Kristin shed tears of relief knowing that now, she could help her daughter figure this out and get the right help.
For Kristin, it had been an excruciating four years having to watch her daughter, a once joyful and happy child, struggle without really knowing why. She only wishes their therapist—or anyone at all, really—would have suggested sleep testing sooner.
It wasn’t until her daughter was diagnosed and she began to learn more about narcolepsy that Kristin wondered if she too may have the disorder.
Although Kristin states she has always struggled with exhaustion, she attributed her symptoms to single motherhood. What mom isn’t constantly tired? However, with a better understanding of narcolepsy in light of Cara’s diagnosis, Kristin decided to get tested herself and was just recently diagnosed at the end of March 2023 as well.
In a way, the commonality of having narcolepsy has brought mom and daughter even closer together. Cara states she feels incredibly lucky to not only have an amazing mom, but also now a mom with whom she can tackle narcolepsy with.
Looking back, Cara states she can’t even imagine how her mom did it all while having undiagnosed and untreated narcolepsy. She reveres her mom as a superhero for raising two kids, getting through the pandemic, working a full time job, and taking care of three dogs all on her own with untreated narcolepsy.
Final Advice From Cara and Kristin
Cara and Kristin hope their experience sheds light on narcolepsy’s potential genetic pattern and that it can indeed run in families. They also share a few pieces of advice below.
If you have recently been diagnosed with narcolepsy, try and find a support group, recommends Cara. Just knowing you are not alone can be really uplifting and refreshing. Wake Up Narcolepsy has a number of support groups free to the narcolepsy community and has also created a Newly Diagnosed Checklist that may be helpful to you.
She also mentions that she’s found a lot of support and comfort from her family dogs, namely their chocolate lab named Lincoln, who has proven himself to be a great nap buddy. The dogs also help with keeping her and her mom in a routine especially surrounding sleep, which is particularly helpful with managing narcolepsy.
As a mom, Kristin urges all parents to advocate—relentlessly if needed—for yourself and your kids. It’s not easy, but try and stay persistent even if you get impatient or feel like you are hitting dead ends. Listen to your children, and don’t brush off what they are saying either. Eventually, you will find out what is going on and you and your child will be so much happier for it.
Reflecting back, Kristin remembers how before her daughter was diagnosed, Cara could barely get out of bed. Now, Cara is about to finish up her senior year of college with a double major in creative writing and publishing and editing. Without mom’s unwavering persistence, they would never have gotten Cara to the right diagnosis and treatment, and all this success would not have been possible.
From here, mom and daughter duo Kristin and Cara will continue to try and raise awareness for this rare disorder. Cara is also pleased to say that she will be transitioning to a full time position with Wake Up Narcolepsy after she graduates from college as their Marketing and Communications Coordinator in May. Her mom, of course, will be cheering her on.