Worried

Hi,

Well, Bryn has been sick with a bad cold, away from school for two weeks, after getting a second bug early this week. I have a black dread in my heart about his missing school. This isn't new. It is winter and this is his pattern but this year he has missed two or three week in a row. Other years only 1 week at a time. I don't know why. More pressure in Gr. 12,  imminent "future" with decisions about college, work etc. maybe. It is a very stressful year in many respects. And as always the ALPS magnifies things. What will he be able to do with a life that involves being sick so much? Will he get through college?

I keep asking him to consider that he can do an hour of homework, slowly, slower than usual, when he is sick. He has energy to play the video games most of the day and skype with his friends in the evening, even though he is sick. Maybe he can't do homework when he is in the early stages of the illness but surely as he feels a little better he can. But he won't. He doesn't care. He has no work ethic. His only impulse seems to be to play games, in the moment, in the very second of each game - never thinking about the future at all.

Right now I see a kid who won't take charge of his life, who doesn't care, won't care about his schooling. Oh, on some level he does but he doesn't have a sense of commitment to get things done, to make his return to school after an illness easier by trying to keep up even just a little. He wants to take the easy way out which is to do nothing, to not face the hard stuff.

I am so worried right now. How will we turn this around? Can we? We have to.

The ALPS has killed some basic faith in life, killed his confidence in himself, in his ability to have a future, to build a life as an adult. He is just 17, and a real teenage boy - it's not easy being 17 never mind complicating it with an autoimmune syndrome. It seems so screwed up right now. He has had to deal with things no kid should have to. In some ways he is ahead of his years, in understanding and wisdom. In other ways he is behind in maturity, because of ALPS, because of things we have blown as parents, indulging him a bit too much in general and because of ALPS.

His marks are quite good - he says he works really hard. He feels that to be true. I think he can do a lot more and still have plenty of free time. He says he is tired. Well, he does have chronic low blood levels, and the massive spleen which causes his marrow to produce blood cells 50% faster than average. But his doctors say he shouldn't have energy issues - really that makes no sense to me. It makes sense to me that he wouldn't feel top notch.  But this is so rare, he is 1/700,000,000 and we have no one to compare with, to talk to. I don't know if his energy is lower than average. I know what Bryn says, but he has no comparison either. If he is more tired he still refuses to go to bed at a decent time, he eats badly - very few veggies. things that could help, he won't do. He is 17 and wants to be like his friends and like his stage dictates - junk food, late nights, not thinking about well-being. It doesn't work for him and in the end he just shows himself that he can't feel well, and then he fears for his future.

I really don't' know how to turn this around. I do think it will take time and sometimes it seems we are making progress. I think we really are, but right now it feels like we have made no progress at all. . I want it to happen NOW, so he has what he needs to open doors for himself after Gr. 12. But he has these other emotional concerns that take up his time and cause him to struggle so hard. Fears of death, working out the trauma from those 5 years of diagnosis, finding his faith in himself  and life again - as he does from time to time. But not right now and I am scared for him. I want him to care, to make the extra effort, it wouldn't take that much. But I can't get him to care, to see that his mind set is self-defeating, that maybe there is another way to approach all this, to get  his schooling going, to research college, to believe he can do these things, to apply himself with care and commitment.

It's not easy where we live either. there is a high Asian population with a very different work ethic and the entrance requirement to our local universities, 2 of them, are a 92% average as a result. His high school is 90% Asian. He struggles with feeling like  a "dumb" white guy in comparison to the standards that are set by many of the Asian kids. He is not dumb at all, his teachers know this, but his is just another nail in his confidence. He doesn't have the context, wisdom or experience to put this all in its place.

Well, I thank you for listening, if you read this. I am scared right now and overwhelmed by what seems like insurmountable problems with damage to Bryn's general confidence in himself and life that hampers him deeply. He is in is Gr. 12 and I want him to be able to actualize himself fully - he is bright and talented in so many ways and I fear he won't ever figure out how to take charge of his own life rather than be a victim of ALPS.

In spirit with you,
Cathy