Allie re: “assface” - gotta tell you, one day I was walking with my stroke survivor son (details on him below on this thread) in the grocery store and this guy was staring at him - my kid limps bad, and his hand/arm is obviously is bad shape (holds it up, consistent with brain damage). You are more cultured than I am, perhaps being a female helps. But as a dude - I wanted to pound this guy’s head in. Perhaps then call him assface. These kids who have AVMs and bleeds - they did nothing to deserve this, and when the world treats them badly, it just strikes me as so wrong. Again, like my response to Cushy - I have nothing intelligent to say tonight, but I totally understand where you’re coming from.
DB
Can I say “thank you” for sharing your experience and thoughts. To me, they are worth more than any reference material on the science of AVMs. Great insight.
Best wishes always,
Richard
Hi DB,
Thanks for your thoughts and sharing your emotions concerning your son and his ongoing treatment for the AVM. I’m not eloquent in my mind. It’s a wonder I can come across as such with some effort. I do teach language so good form has been deeply engrained!
I want to share a little anecdote I know you’ll all relate to. I had to take my daughter to a pre-op clinic today because she has an angiogram on Friday. Early on I noticed a mum about 4 seats away with a daughter in a wheelchair. Six months ago that would have been me. We feel so blessed that Katie has recovered to the point where she doesn’t even use her walker if it’s a short distance. Today she just used my elbow and no walker. She’s wobbly and slow but strong enough that this works. I often wonder what people think when they see us out. If they know about medical stuff maybe they notice her trach scar and if they hear her talking they might think she’s delayed because her speech is very slow and sometimes slurred. Anyway at one point the other mum and I made eye contact and for a moment I felt her pain. All the other children in the room including mine in this case were “normal”. A pair of siblings were playing a computer game on the wall and arguing over it. A young girl was watching something very quietly on her iPad with cute little purple headphones on, a much younger one was spinning buttons and whatnot at the toy table and my girl was playing her silly iPad game where she’s various animals running through a canyon. She was explaining to me why her boars had rainbow wings. The girl in the wheelchair was very pretty, around 14 I’d say but non verbal except for the odd groan and was passing the time by watching Barney and the Wiggles on an iPad while vigorously sucking her thumb. Essentially her mental development seemed halted somewhere around the 2 yr mark. My son is that age and watched those shows as a toddler. I of course was wondering to myself what her condition might be and had she had it since birth or did she acquire it somehow.
My heart breaks numerous times a day because of what’s happened to my girl. Her friends are competing in dance, diving and gymnastics while 13 months past her bleed, my daughter can’t even walk properly. It is horribly wrong and unfair. But today for that moment I was reminded again of how fortunate we are that our girl has come through this so well. She didn’t speak for nearly 5 months and during that time my husband and I were so afraid of the mental deficits she might suffer.
Anyway, it was a poignant moment for me.
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Hi DB,
Thanks for writing as you have, honest, raw discourse is something to be proud of. It’s so important that we hear each other.
I am a very private person, so for me to find a place where I can lay clean my darkest fears and grief, without judgement and hear it resonate with others who I know won’t make me feel ashamed, is such a gift. Thank you for sharing your story, I have been thinking about it a lot.
I keep telling myself that for something so profound to have happened can only be for a greater depth of understanding and that through this although there is loss, we become richer.
I know that’s a cliche, but it comforts me to house what has happened in some meaning.
The realisation that I had to let my daughter go crushed me ( I’m still in the process of letting her go to be honest). But I had to so I can discover this new person, and not feel as if she had body snatched my daughter.
My father recently has been diagnosed with dementia and my mother said “How do you grieve someone who is still living?”
And I understand that concept, with dementia you lose more and more.
With my daughter I’m trying to think of it as a rebirth, gaining more and more.
She will never be fully restored but for each small
thing, new and wondrous, I’m ready for a full blown marching band with a tiki tape parade.
This may all sound rather flaky but unfortunately I have been reduced to new age narratives!
Thank you again DB.
My heart goes to you and to your son.
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Hi Allie,
Beautifully said.
Thank you,
Xx