AVM Survivors Network

18 days til son’s craniotomy


How’s it going? Just checking in.


We are in a rehab hospital to get Matt back on track of a “normal” life.

Matt had the shunt placed and we go for a follow up appointment tomorrow.

Matt has learned to walk better but still needs lots of work. Matt can now eat normal foods. Matt gets agitated easily and the things he says are not so nice at times. But other things he says are just hilarious.

Matt has asked this morning why him, why was it him that had the AVM. He is frustrated and it hurts mom to hear this stuff. Matt will not start his senior year with the rest of his class. He may not attend at all. I pray this is not the case and he can attend in a few months. I am looking at quitting my job to care for Matt full time and be there to help him get over this hump.

I can’t post much more other than this is the hardest thing a parent ever has to deal with.

Thanks and again we just count our blessings.


Hey Squeakki,
Those ‘Why me?’ questions are normal. Via these changes we go through ‘a grieving process’ and one of the first things is shock, then despair, then ‘why me?’, from here we slowly learn a bit of acceptance. It has taken me a LONG time to come to that ‘acceptance’ bit and some days I fight like hell against the acceptance. But the reality is I have no choice. Personally, I’ve had a few neurosurgeries (6 so far) and I too have a shunt. No 2 of my surgeries have had the same symptoms nor recovery, so to be saying ‘…in ‘x’ number of weeks things will be back to ‘normal’…’ is impossible for anyone to say. But by the sounds of it he is making improvements and every little step counts. If he’s anything like me, he’ll have good days and BAD days. Those BAD days are his body and mind needing a ‘timeout’, timeouts are a HUGE part of his recovery and not a backward step.
Me, I am a stubborn male and I wanted my life back to normal yesterday and I pushed myself to get back there. This was a bad idea on my behalf. I pushed too hard, too soon and did not listen to my body. My body was sending me messages when I had reached my limits and me being ‘me’ I tried to push past those limits. I paid dearly for not listening. Me and ‘frustration’ became very close enemies.

Let’s face it this is major brain surgery, it was suggested to me that I consider the brain like our body’s computer system. Open up the computer box and throw in a handful of aluminium foil flakes. What would be the result? The system would have multiple short circuits and that’s if it ever worked again. The only thing I can say here is that recovery takes time. For me somethings have returned to normal, but somethings have not and I’ve been told probably never will. My body’s limits have changed forever. Eventually I got the message.

I am not a parent, so I can only imagine how distressing this is for you. From a patients point of view I can assure you, your care and attention is worth more than all the gold in the world and your son would be lost without your support. But in amongst all of this you must remember to take care of you. If you burn yourself out you will not be of any use to your son, so you MUST also look after yourself. I make that sound easy. It is not. The physical stresses the body can cope with, but the mental stress can be massive and they too must be managed, so please take some timeout for yourself and your own mental health. You will thank yourself for doing so.

Merl from the Moderator Support Team



It absolutely is the hardest thing to deal with and you’re doing bloody marvellously, as is he. It is going to take a long time to recover. The bleed did some damage. I’m absolutely with Merl as well that you both need to get that and be sensible and patient. This is a long game, not a sprint, so you both need to approach it in a way that is sustainable, at a “pace” that you can keep up for a long time.

You can do it.

As for Matt, as Merl says, the “why me?” thing is natural. He is being faced with stuff that I think we would all argue children or teenagers shouldn’t have to deal with it and in that regard it is unfair. But it is also just chance. The bottle spun and pointed to us. There’s nothing sinister in it. It could have been the next person, it just wasn’t. There’s no reason to think “I’m jinxed” or something like that. Just take the hit and get on with getting better, because he will get better.

Wishing you all the best,



I thought I would do a quick update on my son. Matt has been home since September 7. He has made great progress in his recovery. We still attend speech, physical and occupational therapies 3 days a week. Matt is back at school full time. Attends youth group when he can and marching band which his band director is if he shows up then he gets an A. Matt set the presentments high by wearing his band uniform to the home football games even thought he could not march or play. His band director was impressed.

Matt’s attitude has been upbeat. He does not like it when people say they are tired. Because they don’t know what tired it. Matt plays video games like any normal senior in high school, his eye doctor just told him keep it it up its good for his eyes right now (a problem after surgery but they are getting there). Matt attend Homecoming with is classmates and twin brother. Matt has even gone deer hunting.

We still have a long way to go but we are getting there and have a lot to be Thankful for this year.

We have gotten over the hump and now we are climbing up the hill.


Totally fantastic! That is proper fighting!

It sounds like he is doing brilliantly well and has a fighting spirit. Tell him I think he’s great and keep up the great work!

Very best wishes,



That is amazing news! Thankyou so much for your update :raised_hands: excited to hear more with time about your sons next developments - he’s absolutely smashing it!

Very best of wishes,



Hi Squeakki, I went through a lot of what Matt is except at the age of 14–hemmorage, 2 surgeries, epilepsy, emotional scars… Anyhow, my parents supported me and took care of me as best they could. In retrospect I think the more a parent can step back and let the child succeed or fail on their own, the better. That way the child develops courage and self-reliance. Those traits will be valuable in trying to forge a good quality life. It probably goes against a parent’s instinct to watch a child take a risk and fail when you could have prevented it. Aside from dangerous situations it’s probably best to let the kid fail or succeed and learn from it and take responsibility. So, I guess you’ll have to fight with yourself and still take care of Matt. Keep up the good work.


Hi Lisa, How are you? Matt? You seem like a caring and wise person. I wish I knew you earlier. I was 14 when I had a bleed, 2 craniotomys, still have siezures, meds, emotional scars… I’m 59 so a lot of my medical experiences are probably antiquated.
But the emotional/psychological aspects are timeless. We all have different personalities so we react differently to this ordeal. I’ve made so many mistakes it’s amazing. And they continue to this very moment. (literally)
I’m very frustrated because I just missed a connecting flight through my own fault. I just lost track of the time/forgot to go to the gate on time. Now my son is inconvenienced because he has to pick me up later.
Unfortunately this type of stuff is not unusual and it’s affected my life/work/relationships. Then I get angry with myself and sometimes that makes me defensive or mean. I’ll help you and as many people I can to understand some of this emotional/memory stuff. You can always ask me anything.


Couldn’t agree with this more!!!