If you thing thath way Is better for you do not have a child.But Ialready had 2 wen Ihad the avm,and Ican not imagine my life withouth them.you know some days I fell thath I dont want to live anymoore,but then Isay to me,but Ihave them ,I have to live for them,and then I dry my tears and go ahead.I dont know If I was alive if Idont have them
Hi Flower
First I would like to say: I think this is a wonderful discussion to have. Even though I am a man, I too gave "having a family" seriouse thought because of having an AVM. I learned 20 yrs ago that I had an AVM and I decided then, that I would never start my own family. Considering how my health now is, that was the right decision (for me).
I do help take care of my best friends baby. Whom is now 18 months old. There are many times when I have her. That I have to lay down. Not sleep, just lay down for a while. And of course, she wants to play. LOL But, if I'm not having a good day at all. I can call her mom to come and get her. If she was my own baby, I couldn't do that. I love kids... I just didn't want any of my own.
I think you should give yourself a "pat on the back" for knowing what you want and don't want in your life. :)
Ben
Hi Ben,
Thanks for your support in opening this discussion which I realise could be sensitive. I admire how you say you also gave having a family 'serious thought', it makes me feel as if I'm not the only one who's been mulling this one over. It is good to be able to borrow children or babies as, for me, it made me realise where I would fall short. (ie, like you, need to lie down, or fall asleep for a bit.)
Thanks for the pat on the back mate.
When us folks have an avm explode, it seems, to me, that we have to re-think what non-avm people don't have to re-think - our capabilities versus our limitations and how they effect our life in all it's wonderful, varied aspects. Sorry if I'm rambling, am not good at being concise! :)
Thanks for your reply
Best
Hello Holly,
Thanks for your honest reply. Enjoy your son and good luck with the rescue dog, Animals are very therapeutic. Thanks for the film suggestion.
For me it's important to only do what I can manage - and that took a long time to learn!
Best
i had 3 children without knowing i had an avm only found out recently i had one flower, sometimes without the knowledge you are able to do these things it is your choice to have or to not have children. i have bad days when i feel i could curl up but my children make me smile and fore that i wouldn't change my mind
"When us folks have an avm explode, it seems, to me, that we have to re-think what non-avm people don't have to re-think - our capabilities versus our limitations and how they effect our life in all it's wonderful, varied aspects."
This is what I am trying to get people around me (non-avm people) to understand. I love the way you said this.
Hi flower - I don't have kids, but I try to treat all kids as if they were my own - I babysat a baby, a 2 year old, a 4 year old, and a 6 year old every day when I was around 15 for about 9 hours a day...talk about great birth control! But I'm sure that it's true what they say that it's much different when they're your own.
I'm older now - 41 - and although I'm still capable of having kids, I'm still not convinced that it would be in the child's best interest.
Regarding the definition of family and acts of service, I completely believe that one size doesn't fit all.
Hi Holly - I agree - it is such a personal decision...it's right for whatever flower can manage, and, yes, AVM definitely plays a part in that.
Personally, I think dogs are a good choice. I have 2 cats now; they're both around 15 (older) - both were strays so not definite on age - but I've been thinking about getting a dog for awhile now.
I grew up with a dog and think they rock in their own way.
I can say Julie that my little friend has been such a mood lifter. And he still loves me on bad days! My idea with the dog was that and I read they help relax you and keep your heart rate stable. So far so good. He is up to run and play when I am and doesn't mind cuddling when I can't play. Keep us posted if you do get one. I am curious to see if it helps others as well. :)
As a father of three children, I would like to say thank you for taking the time to balance your AVM versus raising a child. There are so many people in the world who casually have children just like buying a car. It is good to think the subject out carefully.
It was a tough decision for me. I found out about the AVM at the same time we started having kids. I decided it was good to go through with having children. Now that they are turning 20, would I have been a better father if I didn't have the AVM, definitely. Was it a good decision to have the children, I think it was good for me and my wife.
Everyone's situation is different, both with the AVM and the choices of life that have to be made. I'm happy to see people working hard on these choices.
I think not having kids is ok. I have an arm avm and that makes me not want to have kids. I don't know what it's like having it in your brain. Having it in my arm, I wake up with unbearable pain, I take medicine, and I'm out for a while longer. I don't know what a bleed would do to a pregnancy, and the pregnancy would probably make my arm worse. I definetly don't look forward to the degeneration of my arm. Sometimes I think it would be easier to have it amputated, I think I could deal with that better.
I don't have a brain avm, so I can't give you advise on that, but I also don't want to have kids for other reasons. I'm an artist, and I'm selfish when it comes to what I do. I'd rather do art than take care of kids. Mothers are selfless. That doesn't mean I'm bad. There are other mothers out there, we don't all need to be one.
:)
wave
Best
Glad this is proving helpful and informative to others.
Yes, everyone's situation and response to that situation is different.
:)
Best
Hello Claire,
What's that saying, a little knowledge can be a dangerous thing???!
Enjoy your kids.
Best
Hi Rachel,
An artist? Cool. I don't think you're selfish at all. I'm creative too. :)
Best
Flower
I am right there with you on many of the points you make.
I seriously wonder if āI knewā about my AVM subconsciously because at about 21 yrs old, I sort of out of the blue had the thought, āI donāt think I want to have childrenā I was traveling at the time, free from most responsibility (and Iām ultra responsible in general), and observing the parents struggling with their children on the trains. I had always been the āgood with kidsā type and babysitter, which is why the thought was notable and surprising. I then reflected on this thought for a long while, going over whether that was a selfish thing to decide. I came to the conclusion that having kids could be just as selfish and that either could be the basis of a worthy life. 7 years later I had an MRI in an attempt to dx something else and they found a large AVM in my frontal lobe (they wanted to do surgery right away, but I ended up deciding to wait and see). I did a lot of research and in finding the extra risk of pregnancy for AVMs, I was relieved I had decided so long prior and that I had found a partner who was also happy to choose being childfree. I also did not want the lifetime responsibility
I have been lucky so far to not have the AVM cause any major issues. And, oddly, I think knowing I have it has made me be a bit more conscious of the preciousness of life and more grateful for every day.
And I dearly love my nephews and neices, my cousins kids and my good friends kids.
I hope that wherever you are now in your life, that you are at ease and finding joy whenever possible.
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Yes. I made a conscious decision to not have children when first diagnosed. People have had worse crosses to bear but I wouldnāt wish this problem on my worst enemy, why would I wish the possibility on my own flesh and blood?
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I tried, but I couldnāt find the number to return themā¦ and I think maybe teenagers are beyond the warranty periodā¦
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My wife was pregnant for the second time when we found out that I had an AVM. The first pregnancy ended in miscarriage at six months. I donāt remember all the details, but I had crainiotomy in March, my daughter was born in July, and gamma knife in September. That was all back in 1989. We had two more children, boys, in '91 and '93. The one born in '93 has one child and another one on the way. So far, lots of ānormalā problems, but no AVM. The strange part about writing this now, is my daughter that was born the year I had AVM surgery when I was 32, well sheās turning 32 this year.
In 1989 during my surgeries, I was told the AVM is not a hereditary disease. Maybe it was this type of AVM or they changed things or I donāt know what. Iāve read enough stories of people with hereditary AVM, so itās not a questionable thing. At this time, Iām the only one in the family with AVM. However, I donāt come from a rich family with everything known about everybody. Thereās lots of questions in my family tree. So far, I havenāt found any information on an AVM in the family, but I keep looking.
Luckily we already have my son
As soon as me hemorrhage hit & I was diagnosed with my dAVF heās the 1st thing that came to my mind - I hope I donāt pass this crap along
Weāre still somewhat considering having another kid too.
Every time my son says he has a headache, I just get such awful feelings - I truly hope this shit stops with me - I wouldnāt give this to my worst enemy