Thursday, June 4, 2009

Oh, Ben-Ben, I am SO sorry

Once upon a time, we had three fine sons living here at home. The firstborn was hard to wake up in the mornings, but I was determined he get a good education, and get into a good college, because I knew he was smart. So, I woke him up and got him to high school every morning. He had perfect attendance. I wanted them to sign the certificate over to me. My sister-in-law, who is a science teacher, said I was enabling. Spoiling him. When the middle son started high school, he was wired differently. He was self-disciplined. He got himself up, read his Bible every morning, came right home, and did his homework. He did his high school senior thesis on being in shape. He did push-ups and sit-ups on his own. He ran, and persevered. He struggled, but got into the local college, and did well. He took every dance class they offered, and ROTC.

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.

Love, mom


Anonymous said...

I used to use a sleep aid that is natural. Melatonin. It's great. I'll e-mail you some info.
Your a great Mom, Joyce!


joyce said...

Thanks, Amber. I found some at Walmart. And Dr. Brettmann says its a nerves-in-the-neck fixable thing. His daughter suffered from it in college, and treatments fixed it. So, I paid ahead for Ben another treatment.

Lisa said...

Nothing hurts a mother more than finding out we've let down our children. It happens to the best of us and there isn't anything we could do to prevent it, but it sure does feel lousy. A suppose those feelings just prove how much we do love and care for our kids. If we are lucky, there will only be a few of these things that stick with us...and look how well they turn out in spite of us. :-)

James said...

Love You Mom. I think you are worrying way to much about this. The Lord is in Control and Ben does Love You Too. I know this and I believe you should to. We all fail but by the Grace of God we are All Victors. Love You Mom.
love James

joyce said...

Thanks, Amber, James and Lisa. When we had the dyslexia diagnosed, we got off Ben's back about the reading and spelling. I wonder what the consequences would have been had we gotten off his back about the insomnia, and super-sleepiness, and when was it from overstimulation of too much coffee, video games, music? I just hope and pray he finds the triggers, and warns his future wife. And the chiropractor says it is a neck/nerve/brain wave thing, not the sleep cycle, so maybe the chiropractor can fix this.