On April 20th, 2020 I am running the Boston Marathon as part of team Wake Up Narcolepsy (WUN). We are raising funds for research and to hopefully one day find a cure.
The truth is, I have never even run a 5k, let alone a marathon. However, this run is personal to me and my family. My son, Noah, developed Narcolepsy with Cataplexy at age four. While Noah is now 9 and has lived more than half his life with this diagnosis, as a mother the emotion around it is still quite raw.
Narcolepsy is an especially heartbreaking diagnosis, as it robs people of the joy and laughter of life, of childhood. Imagine a life where you cannot “feel” all of the feels without your body failing you and perhaps even melting into a heap on the ground. For Noah, that is his reality.
As I run the 26.2 miles of the Boston Marathon, I am running for Noah, I am running for every child and adult out there with narcolepsy, and I am running for the families who have been forever impacted by the diagnosis.
It has been over four and a half years since the Diagnosis (five years since onset). In April of 2015, I had to explain to my then seven-year-old daughter, Ella, why we would not be throwing her a big birthday party with all of her friends as she was turning eight. To be honest, the previous 5 months had put her needs in the shadows as we carried out a family pursuit to find answers that explained how our then four-year-old son, Noah, was slipping through our fingers, entering a land of darkness that none of us had ever seen or experienced. Every waking moment was spent trying to put a name to the demon we were blindly battling.
I think it is important to tell you that I have spent my entire career working with children with special needs and their families. In doing so, I had prepared myself for the day when I would be told my child had a disability. Although this sounds crazy, and perhaps it was, I had met so many individuals who had to mourn the loss of their “perfect child” as they coped with one diagnosis or another. I promised myself I would never be that parent, I would always be ready just in case. In fact, when I was pregnant with Ella and we had our 18 week ultrasound, where the ultrasound tech told my husband and me we were having a little girl, the first words out of my mouth were, “Our odds of having a child with autism just drastically decreased”, as boys are five times more likely to develop autism than girls. On the contrary, when I was pregnant with Noah, and we were told he was a boy, my husband and I looked at each other and I stated, “I will now hold my breath for the next four years of his life”, which I did. That is why, when his fourth birthday came and went, I was finally able to breathe. He was a seemingly healthy four-year-old boy, who was full of energy and life. I would have never believed that in 8 short months, all of that would change.
Noah had started pre-school in the fall of 2014 and we were looking forward to the following year when he would enter kindergarten and he would be at the school in which I worked. Noah’s symptoms started slow and were perhaps unrecognizable in the beginning because I had found a great way to justify what I was seeing. The first symptom was he began taking naps at pre-school, which he had stopped doing almost a year and a half earlier. Four years old is typically a time when children shorten their naps in preparation for kindergarten the following year. He had done the reverse, gone from no naps to daily naps. I figured he was putting so much energy into learning (you know those letters, sounds, shapes, and colors take a lot out of you) that he was just molding himself into the future star student he was going to be throughout his educational career. (Of course, that is what any parent would like to think, but especially one who works in a school!) The problem was the naps got increasingly longer. What started as a 30-minute nap, turned into daily 3 hour naps. In addition to the naps, he was growing increasingly irritable. It is horrible for a parent to think his or her child is a jerk, but that is what I had surmised. He was just becoming a bratty little jerk (yes, I feel horrible even saying this about my son…but, of course, it must have come from my husband’s genes). The symptom that first caught us off guard was the talking through the night. It started mild and was similar to the times he had been sick with a fever and would thrash about and talk in his sleep. The only problem was it, too, started growing in intensity. One minute, I had this sweet and loving four-year-old, and next thing I knew, he was sleeping through pre-school, was irritable and just plain bratty to other people, and he was holding full night-long conversations in his bed while he was “asleep”. Then it happened, the symptom I couldn’t understand or name; Noah started melting to the ground.
With my background in special education and applied behavior analysis, I was quite certain my son had found a new way to gain attention from others. He got such a rise out of everyone the first time he “melted” to the ground, as my husband and I both jumped up and went to his aide immediately. I was sure we were only reinforcing this “melting” behavior, so I instructed my husband to ignore the behavior each time it occurred. To my surprise, this did nothing to decrease the instances, and in fact, they became more and more common throughout our days. With planned ignoring failing miserably, we started picking his limp body off the floor and putting him in time out when he “melted”. After a short time, as these “melting” episodes only increased, we realized there must be more to the story. In fact, as these “melting” episodes amplified, we also found his appetite greatly increased (turning him into a very round image of his previous self), as did his “two-year-old” like tantrums. My son was turning into a child I no longer knew. It was wreaking havoc on our household and my poor daughter was constantly in the shadows.
The next six months of Noah’s young life consisted of one appointment after the next. He endured appointments with the pediatrician, pediatric neurologist, pediatric cardiologist, and pediatric ENT. Each of these appointments led to multiple tests and over a five-month period he had three sleep studies, an in-office EEG, a 24-hour EEG, an MRI of his brain, and a tonsillectomy/adenoidectomy. As parents, we were told numerous times that this was all behavioral and there was nothing medically or physically wrong with him. The doctors began looking at my husband and me as though we were crazy, or the root of our son’s “behavioral” issues. Finally, it was not a doctor, a specialist, or for that matter anyone in the healthcare field that found the answer for which we had spent so much time searching; it was a family’s persistence! By chance, with the right wording in my search engine, I came across a video of a girl having cataplexy playing ball in her backyard. She “melted” in an identical fashion to which I had witnessed my son “melting” consistently throughout our days. After seeing this video, I called my husband, crying, telling him I had an answer to this nameless demon of a disorder. I explained to him I was sure our son had Narcolepsy and Cataplexy. Without an “official” diagnosis, I researched to find who had the knowledge and the skills to help us figure out this disorder. After days of researching and contacting children’s hospitals, I finally found The Stanford Center for Sleep Sciences and Medicine, with Dr. Emmanuel Mignot and Mali Einen. Although over 3,000 miles away, they took the time to talk with us and help us understand what we needed to do to get the formal diagnosis and welcomed us into the Narcolepsy Family. Although this was not a family I ever willingly wanted to join, these individuals have made such a positive impact on our lives and have given my son back a future, one that was initially robbed from him, due to this disorder.
Looking back, I only wish I wish I knew the name of the family that posted the cataplexy video on-line. I wish I could write to them and explain to them the difference they made in our lives, just by getting the word out there. I made a promise to myself at that time, that I would also spend my life working to increase awareness of this invisible disorder. I do not want other families to endure the pain, heartache, and constant agony of not knowing what is wrong with their “perfect” child.