When the baby of the family, the clingiest baby became the most independent teenager, he had trouble sleeping at night. He enjoyed visiting coffee shops and finding new friends. He could not wait to move out. With dyslexia and the challenges THAT added to high school, school was not fun. The vice-principal knew Ben by name; whereas she did not even know we had two older brother graduates. Bob said Ben just had bad habits.
I had no clue Ben had narcolepsy. I did not realize it is an adolescence onset thing that can be managed. And Ben has learned to manage it all on his own. Ben says he knows to stay away from caffine. And he has to take a sleep aid when insomnia hits or he gets into that vicious cycle of being too sleepy the next day. When the super-sleepiness hits, triggered by who knows what--stress? wheat? a late night? ---he then has to use caffine in order to drive, as the hum of the engine puts him to sleep.
I am so sorry, baby. I am so sorry I was so blind to the symptoms. I am so sorry we never got it diagnosed. Yours is so borderline, that we did not see. And I am so proud of you for figuring it out on your own. And disciplining yourself. Watching what you eat and drink. A genetic thing that you did not ask for, and got no support or help from us about. I am so sorry I was so blind.
Please forgive me, Ben for yelling at you, and being so mean to you trying to wake you up. Please forgive me for not being supportive when I found the tylenol pm medication, and when I knew you were abusing cold medication just to sleep. I thought it was a bad habit--insomnia, from bad choices you had made, and I listened to your Dad and Aunt Wendy.
I am so sorry. It would be cruel to yell at a person who had diabetes, or some other genetic disease he could not help. What we did to you was cruel. I don't blame you wanting to move out as soon as you could afford it. You were so different from your self-disciplined brother, James, who must not have this and you were so different from your Dad, who is also very self-disciplined and able to drink caffine at any hour.
Please forgive me.
I have so many questions. What is the crash phase like? When that super-sleepy time comes over you, and you nap, do you dream? Do you wake up refreshed? Hungry? When the super-sleepy comes over you, is your speech slurred? Do you have trouble concentrating? Do you feel it coming on? Do you get double vision? What memory do you have after an episode?
Have your co-workers noticed ? How about your roommate?
Does alcohol make it worse?
We need to talk to Dr. Brettmann about it. Maybe he can reccommend something for sleep aid, when insomnia hits, that is more natural, and not so hard on your liver.
I am so sorry I have been so blind. I am so sorry I have been insensitive. I don't want to jepordize your job, but I pray that somehow, it is correctly diagnosed by a narcolepsy specialist, so that you can cut yourself some slack, and realize what all works and what does not to manage this condition.
When we discovered the dyslexia, when you were in kindergarten and first grade, I cried. Because reading was one of my favorite things, and I realized it would never be yours. Yet, you adapted, and learned to love books on tape. And we fought with every teacher from kindergarten on that wanted you put on ridilin because we knew you were not ADD. And I hated the label of 'ld' which meant, 'learning disabled' because you went above and beyond to learn in different ways. You over compensated for the problems with symbols and conjunctions by being a super listener, and you have spacial gifts---you are able to see an object and reconstruct it, a talent many do not have. So, while you were challenged in some areas, you were gifted in others, and things are so obvious to you, that the rest of us cannot see nor notice. You see the world in a special way.The severe conditons of narcolepsy are made fun of in movies, and Hollywood. It must be a very scary thing to realize you are going to crash, and could be easily robbed or mugged, because it is such a deep sleep you are going into, and you can't help it. Please continue to listen to your body, and staying away from caffine. Please take care of yourself. You are so smart, talented, and generous and loving. God has given you a heart for the ones who struggle. You are compassionate, and caring, and helpful. And so patient with kids, like Cameron. God is using you to comfort others.