Happy New Year to All

It was  a mixed holiday in our house. Bryn went to bed very late and slept very late. A true teenager. He was in a car accident with his girlfriend and three friends the same day as he attended a funeral with us for his friend who died of leukemia, in early December. These event hit him hard, they hit him where he has been traumatized already by the whole ALPS process. His girlfriend's parents were back to their hometown for Christmas and she was to follow when school got out. They could not get a flight back. She was severely concussed, had a small bleed in her brain, broke a wrist and had some numbness in her leg. She seized twice at the scene and Bryn thought she was dead for a bit, he was hysterical and trying to do CPR.  :-(  She came and stayed with us for four nights after we stepped in and visited her and worked with the docs on her parents behalf for 2 nights at the hospital.  I can't tell you how it was to answer the phone at 6:30 in the morning and have the police on the other end, a deep male voice saying, this is the police, your son Brine, (haha :-)  ),  has been in an accident. Got us shaking very quickly. Brine :-) took himself in the ambulance because he wanted to be checked out and  had an ultra sound to make sure his spleen was fine and he was OK. While we sat  for several hours in the trauma section with his girlfriend we experienced a trauma team ready themselves for an air ambulance delivery of a car accident victim, who died right next to us. We all were all quite shaken and saddened. It was all difficult but his girlfriend is lovely and I would not have done anything else. She is feeling really fine now. This did leave us somewhat exhausted for Christmas things, though.

Brian and I walked some long walks along the beaches in and around Vancouver which were very enjoyable. We are not big on Christmas and do as little as we can get away with. We bought Bryn some  presents, had what is always a difficult Christmas dinner for me, with my family. We are not the Waltons, though I love my mom and dad very, very much. Dad is 90, mom will be 87 shortly and they are amazing. Difficult childhood history though makes sibling relationships difficult. It seemed more difficult than usual this year for me - I just couldn't stand being ignored and cut out, as is the family system, by them as they always do. And their hyperness and constant me-ness is difficult to be around. I never like it but this year it hurt deeply. In spite of that we did things we love to do, Brian and I, and enjoyed a couple of warm and enjoyable parties and a really fun wedding on New Year's Eve. Bryn hung out with his friends, when not on the games, and enjoyed skateboarding, movies and playing Katane.

Well, today is the 2nd day of school being back and Bryn will not get up. Last night he went to bed at 12:45, which was way too late. You may remember we gave him freedom over his bedtime. When he went to bed he came to me and said he felt numb, empty and depressed. And he couldn't sleep. He said Autumn's death and the car accident were really bothering him. He said he is having a lot of deep fear about death and dying. And this morning he says,  "why bother if we are going to die anyway."

We have a real problem here - he uses the video games to avoid himself and his feelings - plays them way too much... but that is part of his culture too, his friends do that too - it seems all kids do. But his friends have accomplished things, great guitar player maybe going to Julliard, a accomplished drummer, good marks to open doors to University. Bryn is very, very bright, very talented (no this is not a biased mom talking) but he is spinning his wheels, avoiding life with the games, avoiding himself - he is off the tracks too much because of his reactions to getting ALPS and the diagnosis process taking 5 years. His dad and I didn't know through all that what to do and I think we  indulged his feelings too much. We got him and ourselves therapists, art therapy, family therapy, but he was too young to deal. Thinking back it is hard to know what we could have done differently, it feels like we did all we could. I don't know. But here we are and a change needs to take place. He needs to step up his game, apply himself, stop freaking at the first stress that comes his way, deal with himself as he is learning to with Eva and cope. It takes time to make changes but if he waits until after the end of Gr. 12 it will be much harder than if he does it now - he will have to do some night school to get the marks he needs. He is dealing with things with Eva, but has not seen her for 5 weeks, which is the longest has has gone since Sept. Usually it is every 2 weeks. He will go in 2 days. He needs to.

I have been talking to Bryn just now for awhile. He acknowledges that he made the decision when he was diagnosed with ALPS that it was really unfair and that from then on no one would be able to tell him anything. He would do what he wants when he want and do nothing anyone tells him if he doesn't  want to. Hence. the volatility and rages. Well, I can truly understand that decision actually, his rage at getting a condition, but it is self-defeating and he has to change it. Perhaps now that he understands it better he can begin to change it.

Bryn is a really good kid. He's got a beautiful heart and wants to do very well. He doesn't mean to be difficult, he is just someone struggling with what life has given him.  I love him so much and feel for his struggle. I will always stand right behind him in love and support. We are all on a journey to learn and live, to feel meaning in our lives, to feel valuable, to use our talents , to develop oiurselves. Bryn has had a hard struggle these 7 years - he will make it in time. I have faith.

Each time we have a difficulty like this morning we can learn from it. We don't always but I think maybe he will this day.

Whew..... Life....

I'd love to hear from you, even if your experience is different. We are isolated still with these rare conditions because we are all different. At least we can share what it is like for us, the care givers and parents,  families, or those that have syndromes. I am here to share and listen. I hope you will help break the isolation we feel and maybe your own, too.

In spirit with you,
Cathy