Today has been a rough day for you. Your great grandma is being buried today and it’s triggered an emotional state neither one of us understands. We have both been at our wits end for months. I know you are 18 and an adult now but you are always my son. I haven’t always known the right things to do or say and for a while I thought it was just part of growing up because it started when you moved to your own place for school. All teenagers fight depression and seem to want to sleep all the time, It’s stressful starting college and living on your own. Right?
Faithfully we started with our family doctor and had a sleep study done. The sleep doctor said you have sleep apnea so he put you on a cpap. But, you are still having all these symptoms, including depression and hallucinations so now you are sent to a psychiatrist. You also have loss of muscle tone and weakness so back to the family doctor. Months and months have gone by and nothing feels right. We’ve researched and asked about narcolepsy but nobody either knows much about it or knows how to treat it. Our doctor thinks maybe you should see a neurologist. I find one that specializes in sleep disorders but it’s a month to get in. Meanwhile, you feel like you are going crazy and I spend many sleepless nights offering support long distance and worry about losing you.
Today I stay home with you because I fear that today is the day you decide you can’t take it anymore, today is the day you will stop fighting. I call the neurologists office because I don’t know what else to do for you but somebody has to help.
I can only be thankful for the miracle that somebody cancelled.
“Can you be here by 10?”
“Yes! We live an hour away but I will get him there!”
I may have driven a little fast and my adrenaline was pumping but we are here. I don’t know what to expect. I want an answer but we may get nothing or more tests or need to see someone else, again.
We fill out the paperwork and are shown to an exam room. Dr. Rai walks in, looks over everything we brought, which includes all your records from when this started, and asks a simple question.
“Why have you not been treated for narcolepsy?”
I melt where seconds before I sat so rigidly, ready for another fight. My entire body relaxes and tears start streaming down my face. We explain how many doctors we have seen and he says, “All of this is due to narcolepsy. From now on you don’t need to see anybody but me.”
I want to jump up and hug him, this total stranger who has suddenly given hope when our hope was almost empty. I look over at you and you’ve never been one to show many emotions but I see maybe a glimmer of hope in you too.
He recommends Xyrem. I know about Xyrem because I just finished this book about one woman’s struggle with narcolepsy and I’m aware of its side effects but also how it helped her get her life back.
From that moment I know that we can do this, I know that you can do this.
The rest of the day we spend together. We watch the Xyrem video and begin this long journey how we’ve always been, together.
From that day it has not been easy for you and it still sucks, but we had an answer.
Dylan, you have narcolepsy but narcolepsy is not Dylan.
Dylan is a kind, gentle person who fights for justice.
Dylan is a talented musical artist.
Dylan loves his friends and his family and has always been a supportive big brother.
Narcolepsy is not any of those things.
I know there is still a long road ahead for you but you learn how to cope better every day. There are days that are still extremely rough and there are times when emotions cycle with cataplexy, but I see in you a new strength and resolve. I see you making your quality of life better and you fighting for justice for yourself.
Xyrem hasn’t necessarily worked out the best for you and we were so hopeful that it was the answer. What I’ve seen though is that even though you struggle daily, you’ve made yourself the answer by not giving up.
Finally getting someone to listen was the beginning but it has been your strength that has made it better. I am so proud of who you are and where you are in your journey.
You are all the things you have always been. I love you with all my heart.