I wrote about my son a few times but now things have gotten worse.
He was in the hospital again for aspirated pneumonia and because of that he can’t no longer be fed by mouth they had to put a feeding tube in and before all that he lost so much weight because he would not eat he is so gone to nothing I can see the bones where the ribs start, he can’t talk , we can’t even have a conversation , the avm has affected his jaw and they did an MRI and found out his brain stem is shrinking, I don’t know how to deal with all this , I’m getting counselling but I’m still having a tough time
I think counselling is a good move. I just want to say that it sounds like you’re doing all the right things. There’s no easy way through this stuff. I think it’s going to be hard and you shouldn’t expect to do anything quickly that will make it easier for either of you or go away. Getting through these trials is about as big a life event as there is. Talk to the counsellor about sensible things to do, how to keep yourself healthy and going at this time because I don’t think any of it is straightforward.
I’ve moved your post into a place where all the other mums & dads will see it. I hope some will have thoughts to share. I know a few have been in a similar situation but it is so, so difficult that it might be it is still too hard a thing to talk about.
Always know that we are thinking about you both. Are you married and got other kids? We can have all of you in our thoughts every day.
I think last time you reported in, someone said, “Just tell him that you love him.” I think that’s great advice as well.
He is my only child and I’m married anymore, my main priority is my son but I always tell him how much I love him and that I will always be there for him
Thank you so much for your kindness
Hello - I just wanted to reach out to say that I am thinking of you and your son. I am a AVM survivor and a mother, and I think you are doing all that you can. You are having one of the worst experiences a parent can have, but in telling him that you love him and will always be there for him, and you are being there for him, you are being the loving mother he needs. Please don’t judge yourself - no -one would know how to deal with this.
My heart goes out to you. I am a mom who has been by her daughter’s side as she has fought her cervical AVM. As others have said, I don’t have any big insight to offer, other than support, understanding, and love and compassion. I hope and pray for healing for you all.
Hi, I know this feels impossible to deal with but you are doing everything you can as a parent. Just being there and showing your love for your son means so much. I am truly sorry that you are going through this and wish I could offer you more than just words. I hope the counselor will be able to give you some practical advice. I am praying for you and your son.
