Parent of 12 year old with ruptured AVM reaching out to other families

My daughter suffered from a ruptured avm on Feb 28th 2017 while getting ready for school. It was emobolised the next day & she underwent gamma-knife on Dec 12th to treat the remaining AVM. It bleed mainly into her frontal lobe.
I wish that someone had told us what a long path we would travel. Naively I believed, because she did not die, that it would be a matter of recovery, and being such a strong, determined, intelligent child, it would be a few months. We are nearly a year on and soon to be celebrating her “brainaversary” (her idea!). She is so fatigued, often depressed & confused, but on a good day, like my old girl. She has not yet returned to school but has a tutor 5 hours per week if she can manage it. Last week she woke up and was the colour of a corpse, it was so alarming. Yet the same week she played her guitar for the first time since the rupture.Sometimes it feels like we are further away from where we were. Like more of her old self is gone. It feels like a fresh grief.
I feel as if I’ve been thrown blind into a dark wood trying to find a way, a cohesive pattern to what helps, a trail of progress, but often I despair that we are walking endlessly, caught and directionless. Through the grief, the disbelief I am doing my very best. I keep positive for her, I remain cheerful and unwaivering for my other children. But I am so so very tired, like I have been hollowed out. Are there other parents like me, who are trying to hold it all together but want to check into a hotel with a pile of books, room service, no phone & just disappear for month?! Just to cry and weep and not have to be brave?
I know that each brain injury is unique, that they can take a long time to recover from, and that actually there is never full recovery, that there is permanent change…I understand that it will take years, that the damage may increase as she goes through her teens, and I have accepted that my child will never be as she once was.
However, I want to do the best that I can for my girl, other than practice patience! When something so profoundly devastating happens, you have to try to find the rubies in the ashes.
On good days, we play games, she draws alot, she writes songs, writes poems, and will jump on the trampoline. Mostly she mixes & plays with dough, soft tactile foam, watches a programme on the computer, and wont leave the house.
Is there any practicle advice from other parents they can pass on that helped thier child & their family? Cognitvely, psychologically?
Love and kind thoughts to you all.


Welcome to our community, it is great you’re here. My heart goes out to you, and I admire your strength and courage. I have an AVM in my left temporal that bleed May 2016, and I had gamma knife November 2016. I also have two children, now 12 and 14. While not in a similar circumstance to you, I can only imagine how much more difficult this would be if it was one of my children as opposed to me. I hope you will find support here, while most of our circumstances are different we have an understanding that those not effected by these things usually do not. Take Care, John.


Hi John,
Thank you for such a warm welcome.
I think if you are a mother, father, son, daughter, spouse, sibling, sufferer or supporter, brain injury affects the whole family.
Equally I cannot imagine having to parent & struggle with recovery so you are awesome!
Best wishes,
C :slightly_smiling_face:

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Welcome to our family. I’m sorry you’re in the position that you are and it sounds like you’re doing a great job of keeping it all together.

There are other parents of AVM children (and carers of older AVM people) who are here and in a similar position to you. Have a little look in the Parents and Carers category on the home page for some of their stories and reach out to those you feel a connection with or might ask. You can include them in this conversation by invoking their name, like @DickD, rather than writing in their story if you prefer.

If you ever find life getting really tough, remember to talk to the doctor yourself about how you’re managing: there are a number of ways you might be supported. I hope your daughter continues to make good progress – it is bound to be very slow. Don’t give up.

You might also be able to find resources or support from organisations designed to help people with learning difficulties in regard to cognitive or other development support. You might talk to your education authority or school about access to learning support services. I’m not sure where to start for that sort of thing.

I know one of my colleagues at work has a son who has enormous difficulties, yet he (my colleague) as well as going through the mill in much the same way as you are, is immensely proud of his son and what he can do (rather than what he can’t do).

Do you have any access to “respite care” for your daughter? I don’t know much about it but it is intended to help you, as the carer, have a bit of time out to do as you say and check out for a while, with a book or whatever. I would guess that Social Services would be the right place to start to ask about that.

I think it is great that you’re remembering about your other children, too. You’re clearly fighting hard to do the right things.

If you’ve already reached out to some of these places but it isn’t working for you, tell us what has worked / what hasn’t and maybe others with closer experience to these areas can help you get what you deserve.

Hope this helps!



Hi there. I feel precisely as you do. My daughter’s just passed the 1 yr mark since her bleed (Jan 5/17). She was days from her 10th birthday at the time so she’s 11 now. Most of the time I’m just profoundly thankful that she survived her massive bleed. But like you, it’s impossible to be “ok” with what’s happened all the time. It’s not ok that people mistake my daughter for developmentally delayed now because she can’t walk properly and her voice is slow and sometimes slurred like she’s inebriated. I feel like I want to make her a sign that says “I had a stroke, you assface!” but that would be quite unacceptable. My daughter has returned to school. Went back in September actually but didn’t attend a full week until last week. She misses a fair bit due to appts and needing breaks.
School has been a big struggle but I honestly think being there has helped more than it’s hindered. Her friends are great and she just tries to be her old self so she pushes herself far more physically at school than if she were home. The hardest thing for her at school is noise. She never tolerated it well and now it’s just so much worse. Educating everyone at school about brain injury has been tedious. But worth it. Anyway, you’re by no means alone. Too bad an ocean separates us because having a tea with you would be nice I’m sure.


Hi Allie,
I loved your mail! I know exactly what you mean!! My daughter tried going back to school but she was transitioning into senior school & the whole thing went terribly. She has a tutor at home 3 x a week who is fantastic. She has crippling fatigue which has not improved & I think this is due to her hormones & teen brain changing at the same time it’s trying to heal.
We tried to introduce a science tutor yesterday & it was so frustrating. I spent ages explaining beforehand about how the lesson would need to be constructed.
The teacher went so fast & my poor daughter came out ashen with a huge headache, had a nights terrible sleep & today is in a bad way. I was trying to explain to the teacher the need to go slow etc & she said to me “But she’s very able, she’s very intelligent” and became really patronising, as if I were some neurotic overbearing parent.
Like -Dah! I know that she’s smart- that’s not the issue.
I’m all up for the t-shirt!
I found a site about invisible disabilities which I can send to you if you like? They do have t-shirts!
Sounds like you are doing an amazing job. It’s awesome that your daughter is in school & if you even want to vent without judgement I’m here xx

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Hi Cushyb,

Sounds like we have very similar struggles. I’ve questioned my daughter’s
schooling situation daily since September, but we’re keeping her where she
is for the rest of this school year because she’s coping pretty well. Some
days aren’t so great though. I admire her tenacity so much. If it weren’t
for her peer relationships I’d be seeking a private school with very low
teacher:pupil ratio. It’s the ambient noise that is the hardest for her and
it’s nearly impossible to control in a normal school environment. I’m so
sorry the Science lesson didn’t go well. Most people, even ones you have
high expectations of, are pretty obtuse when it comes to understanding
brain injury. This has surprised me to be honest.
Thanks for the encouragement. I’d say we’re both pretty great mums! How’s
the rest of your family. My son is nearly 14. He’s such a typical teenage
boy. Was 40 minutes late this morning because he snagged a toenail on a
blanket and it bled badly. I’d told him 2 days ago to wrap the craggy nail
with a bandaid because that exact scenario could happen. He wondered why I
was angry with him this morning!!! My husband has been amazing through
everything. Very lucky to have him.
Yes, I’d like to see that site. As her physical deficits improve it will be
more and more important I’m sure!
Talk again I hope,
(Can I know your real name please? :smile:)

Hi Allie,
In haste as I’m heading out, but would love to keep corresponding with you.
I have a teen girl. She’s wonderful but … she’s a teen!!!

Cushla :hibiscus:xx

Hi Allie,

I’m going to get one of these for my daughters brainaversary!
Thought your girl might like one too.

Cushla :slightly_smiling_face:

Many thanks!

Hey Cushy

I’m a longtime Catagory 3 stroke survivor. I have been blessed to share my story of failures and accomplishments with all who inquire the life of a TBI survivor. To all whom need a shoulder to lean on I’m here.

Hi I understand totaly we’re ur coming from my daughter was 17 when she took a ruptured AVM last February and I also think it’s getting harder with her I’m so glad she’s here but like u I think she’s different girl her mood swings memory are all realy bad and she has not yet returned to her job yet either she was a dance coach and dancer before this happened to her x

That’s such a generous welcome. Thank you.
It’s so good to talk with all the amazing survivors on this site & hear their victories, struggles, courage & love.
As my mum used to say to me:
Be brave, life is joyous.
Cushyb xx

Hi Brogan,
That’s so tough for your daughter at that age- I imagine she must feel bewildered by what has happened to her life just as she was getting ready to fully step into it.
Tough for you too!!!
How long ago was her rupture & how is she coping week to week?
I felt my daughter deteriorated over the year, but I realise it was the damage becoming more evident. Suddenly she will seem to be doing so well- it’s very hard to figure out. I think a lot was also myself coming to terms with the fact that she would never be as she was. That made me fall into grief. I try to buoy myself up by having great hope for her future. Not as it might have been, but perhaps in a way richer because it will be more complex, so it will add to her character rather than subtract from it.
I hope you have some support for yourself?
I send you a big hug.

Hi there her rupture was 10 feb 2017 so nearly year ago just like ur daughter she came down to go to work in morning complained of sore head then she started to b sick so we put her in car and drive her to hospital we’re in car she was sleeping in our cauntiones at hospital they took her straight away then came back said it was bleed to brain and she was on a life support it was horrific she had operation to stop bleed and they put drain in her head then she was in icu for few days then over week later she had the mahout 8 hour surgery to hv the AVM removed after just under month we were allowed home I don’t know were this year has went we’re so blessed to have her but it’s tough on us all she is attending brain clinic fortnightly when she sees the OT and Pyscologist xx

That all sounds so traumatic for you all.
It’s just a horrible nightmare isn’t it?
I think I swing from being really positive, to being depressed and traumatised to feeling as if by magical thinking things will return to normal. I don’t know if your like me, but I cannot bare to remember how my daughter was sometimes.
Do you have other kids?
I have two others and I’m really proud of how they are coping but it has turned our family upside down.
How do you deal with everything?
I’m going to start trying to have a day of respite.
My heart goes out to you xxx

U sound so much like me everything u say sounds like us I hv 2 older children boy girl at home to all our lives have been turned upside down it’s so unfair the way it tears families apart but u always try stay positive but like u there is days I wish I could run far away xxxx

Sending you a very very big hug x

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Big hugs to use too xx

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Hey usually I only post here about the science of AVMs, and helping folks where I can to analyze treatment choices etc. However…I just wanted to say how much I understand and relate to what you wrote. Actually you and Allie in her response wrote a bunch of stuff about your thoughts that mirror mine over the years. My teenage kid had a stoke years back, we’re still waiting on getting rid of the AVM (two rounds of radiation, it’s inoperable). I try hard to stay up, and make a great childhood for him and my other kids. I have to act super high energy at work too - lot of public stuff in my job so appearing down isn’t OK. But when everybody goes to bed, and it’s dark, my mind goes to dark places too. Regret, thinking about what could have been, worry about the future. My kid was a genius pianist until the stroke. Even as a metalhead I loved what he could do. Now with one side weak & his hand useless he doesn’t play much. It really wasn’t until this fall when I finally gave up emotionally about meaningful recovery. This was very late, objectively I should have been more realistic years ago. I struggle daily with this.

But here’s the thing. We’re parents, we’re gifted with the chance to care for these wonderful people, and yeah depression and anxiety are part of the deal, but we have the opportunity to do right by our kids and make things the best they can be. Your daughter is still the same person she was before, although her abilities are diminished, but there can still be joy, love, and hope - although what this looks like is different than what we thought when the kids were little.

I have nothing intelligent to say here - just I get it, I often feel the same, and for what it’s worth I wish you all the best.