So hard for me sometimes when i hear other peoples kids doing all the things they like to do.
My son was into photography, he even went to film school,and had drop out of the coarse because his condition got worse.Why my child, why?
He’s in a hospital waiting for long term care, he’s been there since last year, I cry sometimes cause it is hard to except, he’s 23 years old, what kind of life can he have,with no hand coordination and can’t walk,it’s really tough.
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I am really sorry to hear what your son is going through. It isn’t fair that your son is going through this, and it is horrible that he will have to adjust his plans.
I am not very good at this myself - but I try to remember that there are still things I can do the same as everyone else (playing online games for one thing). There are also adaptations I can use to do some things - e.g. bringing a chair out into the kitchen so I can make my toast. Our lives, though tough and sometimes really painful with this condition, still have value and meaning - we can still do things with the right support in place, and we can still find things to laugh about. It sucks that we have this - but life is full of possibilities and they are developing new techniques and treatments all the time.
(Ps - motor scooters are actually really handy - my family recently picked me up a second hand one and it means that I can go out with them to the garden centre and move around myself without extreme pain for up to an hour!! Worth checking them out)
Sending support!
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I cannot begin to comprehend the emotions that you must be feeling. I have a 19 year old and a 17 year old. My 17 year old son was born with a disease called hirschprung disease and had 30 cm of bowel removed at 6 1/2 months old, and then two further surgeries, his last being at 4 years old. It was very hard to accept, to deal with and I understand the questions of why my child. As I continue through my AVM journey, I can imagine how difficult it would be to have a child impacted by one.
I wish I had an answer, but I don’t. I do know that medicine is progressing at an incredible rate, that we are resilient and that we all need support whether a carer, AVM patient, friend or relative. I try to deal with my frustrations in a positive way, and have recently sought some further assistance as I recognized my need for some more help. I go this week for a chat, my first since the recent seizure, so that in itself has helped me manage personally. The personal management again is far easier than it would be if it was my child.
Take advantage of any and all services, lean on us here, while we are never the same we do maybe understand a little better than those not impacted. Take care of yourself, we can’t be there for others if we don’t take care of ourselves first. A very hard concept for many of us, but one that I completely believe in. Take Care, John.
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Hi Bea, Many, many of us here have been hit full-force with fear/uncertainty. There’s no real “answer” to raw fear.
My AVM bleed happened at 14 and it’s been a struggle for 49 years in one form or another.
Like so many others my immediate question was “why me?” Of course there’s no answer unless you have some religious faith that can tackle it. (I didn’t. So I still don’t know why I was chosen.
By chance I came across a movie, “Life Animated.” Even though it relates to autism it is relevant to us. A son with severe autism, with the help of his parents, manages to live independently and well. He takes tickets at the local movie theatre. He learns to put his house keys on a hook so he doesn’t lose them…
The whole family showed great courage and hope.
I don’t know if photography is still an option but I have a strong feeling your son will lead a good and independent life. Best wishes, Greg
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As stated, there is no answer to how to bare with this grief
In my case - I’m glad it was me. I’d take another stroke all day before I see my son go through it
Now, I just “hope” it stopped with me - usually these aren’t hereditary
All I can say is; Best wishes
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I’m so sorry to hear about your son and as a parent I would be asking myself the same questions… it’s definitely not easy & I won’t pretend to understand your pain but just know at the end of the tunnel there is light & hopefully with the vast growing technology we have that his situation will improve to afford him the beautiful life he deserves.
Keep strong & stay positive as much as you can cause he definitely needs that rock… sending prayers out to your son & your family… God bless!
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I am also sorry to hear about your son. For whatever it’s worth - I am very similar to him. I had my first AVM rupture in 2010 at only 20yrs old. Doctors said I should have died but instead they were able to keep me alive. After many weeks in the hospital I could leave, but I had to learn to walk again. As a young college student I spent many days wondering why me, especially as google shows a very small percentage of the population suffers this disease. I did choose positivity over fear after my first bleed. Luckily I got 9 more years of normalcy until my next bleed. Eventually through treatment I suffered a stroke complication which left me temporarily paralyzed on my left side. After 3 years of rehab I can walk well but with a limp.
Unfortunately I just lost my 66yr old father to an unknown AVM in his brain stem.
This is an awful disease that my father always said he wish he could have instead of me. He was a positive man who always told me to think positively with productive thoughts. Everything else was a waste of time. I now understand time is a gift we shouldn’t take for granted.
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