Children with AVM and how to help them understand

Hello everyone, Im the mother of a 12yr old daughter who was just told she has AVM on the left wrist. I have been all over the internet trying to learn everything I can about AVM. My question to all is how can help my daughter deal with the road ahead! Any Parents out there have any life lessons they have learned along the way with AVM?

Well, I have explained to both my son (10) and daughter (8) that there is no such thing as normal. Everyone is abnormal. We think others are normal because we do not know anything about them and we assume they are normal. I used real example of myself and even the small operations I needed to do. I do not know a single person that actually is “normal”. Everyone has something to deal with. If we were all noraml and clones of each other, how boring would that be. I am still amzed how much we underestimate children’s capability to understand, including me. They are smart and can think and reason. Just be careful not to share unnecessary things like how painful a surgery may be post surgery, but be honest to them. Need to talk in caring terms though. I am explaining to my daughter about her brain AVM. She is taking it very well as I have explained to her that our objective is to fix her so bad things do not happen in the future. She was concerned more about the length of her hair post surgery but after I explained she amazingly understood what battle we were in front of and said , she can wear a hat or a wig. You need to be clear with what are high priority items. We pulled her out of running a mile to acheive the highly coveted Presidential physical award just to be safe. Soemthing she was looking really forward to. But after I explained the priority of things and the objective of fixing the problem, she knew she could pursue it when she is nine. She willingly gave it up. Good luck!!

Along the same lines as Tony, I told my daughter(10) that everyone has something to deal with, and everyone has a story, and this happens to be hers. the Lord will use her story to touch someone’s life, and that God has given us the right doctor’s to help us make the best decisions for her wellbeing, and while it isn’t fun for any of us, it is part of her story. That has really seemed to ease her fears and anxiety and to give this whole unfortunate thing some sort of purpose. It isn’t easy to watch a child go through this.