In pieces

Well its been 6 months since Jake’s haemorrhage and he’s doing great. But for some reason I just can’t seem to pick myself up. I’ve been crying all week, am crying while I type this…I don’t know how to get over this. I know I should be grateful…and I am, every day I thank God for our miracle. But at the same time I just feel so sad. I keep thinking of that night when our lives changed, I remember him saying to me “Mam I think I’m going to die”, and those words I will never ever forget. I’m thinking of waiting for the ambulance to come, it seemed to take forever. And the nurse sittng me down in A&E, with the doctor, to tell me what was wrong with my baby. I’ll never forget those words either, or the looks of sympathy on their faces when they told me. I’m so sorry to rant on here, I know all of you have been there in one way or another, but I also know that means you understand…

Jaynied, I am glad to hear Jake is doing well and I absolutely understand how you feel. My son is doing well after his AVM diagnosis/ bleed in April(craniotomy in June) but I too am having a difficult time moving past it and I’m not really sure why. The tears hit out of the blue and it’s almost like I’m right back there again in ICU. My sons neurosurgeon told me that AVM’s take a toll on the families and that its very emotional for them-I didnt fully understand what he meant by that at the time but I do now. I long for my son’s pre-AVM life but realize that will not happen. I miss the peace of mind I had before all this happened but I know I will not find it any time soon. I think the only thing that will help is the passing of time… as you move further past this and see your son doing better and better you will start to feel less ambushed by your emotions…Hang in there, take a deep breath and know that you are not alone.

Please don’t ever be afraid to talk about your feeling here. That’s precisely what this site is for. It’s a very emotional experience to have something like this to happens to one’s child, and I can more than undersatand the residual emotions. Hope each day bring more emotional healing.

Take care,

When I lost my daughter to HHT and I cried constantly, my husband said “Tears wash the soul” You need the tears to wash out the fear and soon you will pick yourself up and move forward and enjoy the time you have with Jake.


You have been through a huge trauma. I would strongly suggest that you receive some counseling to help you deal with the trauma. The social work department at the hospital where Jake had his surgery should be able to steer you in the right direction if you need help finding a some professional help. I highly recommend that you do this. You do not want to develop PTSD as a result of this trauma.


Jaynied…we totally understand. You have been so strong over the past 6 months that now you are finally understanding what happened. You couldn’t cry at the time…you only could think that Jake would survived and Thank God he did! Hang in there, Jaynied and give your wonderful survival, Jake a hug and kiss from me!

Thanks everyone for your kind words. I know we will get there, and we are among the lucky ones. I sometimes feel so selfish for wallowing in self pity when I think about how bad things could have been…but then there are the other times when I just feel so low, and can’t help asking why? I know there is no answer to that but doesnt stop me asking every now and then. I wish I could be as strong as my little hero!

I think when you come so close to losing your child it leaves its own type of scar in a way…at least that’s how I feel sometimes. It shakes up your whole world. Although things are going well and we are so grateful that they are, the fear that the other shoe can drop without notice always lingers in the back of your mind…and that’s a LOT of stress to deal with on a daily basis…and stress takes a toll. Don’t expect so much of yourself right now…you’ve been through a lot and you need to give yourself time to heal as well…and you will heal. Hang in there. Roseanne (ken’s mom)

Dear Jaynied,
I tottaly understamd what you feel. I´ve been there twice (two craniotomies) and a bleed so I can conect to your feelings. People here helped me a lot in 2007 and 2008, so don´t feel selfish for wallowing in self pity. Even today I cry when I remember everything, the moment I took him to the operation theatre, etc. I try to control my thinking and repeat to myself that the past does not exist and that is true.
At the end of the day, as you said, we are among the lucky ones. Things could have been a lot worse.
After all this avm experience I developed anxiety so every exam is a nightmare for me. My son is doing great but is taking anti-seizures medicine for two years and probably will take for life.

But what can I say or ask? I nearly lost him so the only thing I can do is thank God.
Sometimes I find myself looking old pictures of him, before the bleeding in 2007 and missing that time when everything looked perfect.

I also think every person react differently to problems. I think you are more like me.
Time will heal, cry a lot but always put a brave face for your son.
Lots of love.

Thank you Erica, how old was your son when he had his bleed?
I’m so pleased to hear that he’s doing well.
I just wish I could move past this, I keep thinking I’m ok, then it will just suddenly hit me and its like I’m back in the hospital with him. Its so frightening, and we’re still unsure whether he has another avm or not, or even whether the one that bled is fixed or not - it wasn’t removed, only embolised, and now I worry whether that is enough.

I’m sorry I am late to this post Jaynied. I am tearing up reading your words. It is harder some days to be thankful for a miracle that still leaves behind so many obstacles and makes it impossible to forget why you needed the miracle in the first place. It is a grieving process because your old life ended that day and this new one began. It may never be the same but you will appreciate it more than anyone that hasn’t been through this directly can ever understand. It is hard being the one battling the AVM, I think the only thing harder could be being the mother watching her child. You can cry all you want, you are completely entitled.

I hope Jake is doing well and that is not the direct source of your grief. Stay strong and know that I and I am sure many others are thinking of you and your family. <3

Dear Jaynied, Daniel was 7 years old when his avm bled. Please read our full story is our profile. As time passes you will feel better, I will pray for you. I hope future exams show your son is avm free. Lots of love.