Something that came up with quality of life... those three words have come up a lot this week... in a frustrating way and I am pretty sure in a meeting we have this afternoon it will come up again... but here is my struggle...
The medical world it feels like quality of life is a back and white check box thing...
have a feeding tube? subtract from quality of life
use oxygen? subtract from quality of life
use a wheelchair? subtract from quality of life
And when people view my kids this way I get very angry very fast because it is not fair.
My kids do not have a crappy quality of life because they use those supports...
In fact they have a better quality of life BECAUSE they use those supports...
Without a feeding tube they aspirate everything and it is really hard to be a kid with pneumonia constantly.
Without oxygen my kids don't have enough energy to play and they just sit and look at the wall.
Without a wheelchair Jilli gets too tired in public to interact with her peers, having wheels gives her the chance to socialize.
I think we have shocked some people here on our views on this and I think there have been a few people that have not know how to take us because of it but my goal is to push this farther then just us.
This view NEEDS to change in the medical community. Supports need to be seen for what they do for someone, not just what they might take away. I have also seen medical providers advocate taking supports away before someone is ready (we have tried before based on medical advice) in the name of quality of life in ways that can actually be harmful to the person. I am not advocating for keeping someone on supports they do not need or over supporting a person, what I am advocating for is a perspective shift on quality of life so that decisions are made in a more neutral position.
Quality of life needs to be looked at based on the person, not the supports. I completely understand that going on oxygen for some people does negatively impact their quality of life, and that can be true for them and opposite for us... medicine is a lot less black and white then we like to pretend and we need to look at people as people.
This would also massively shift society's perceptions of people.Maybe it would change those looks of pity in the grocery store. Maybe it would make the world more inclusive. Maybe it would open up doors for kids like mine. This could change a lot.
And I think it could be powerful for parents of kids with medical needs. I am in a lot of support groups and I see how often people think supports are the end of the world... how their life will never be ok... and I just want to scoop those parents up and give them a hug and tell them to not let anyone discount their child, not even them, because of medical supports.
And then I think we could have more constructive conversations about the hard aspects of life without everyone feeling like the world is crashing down on them.
I think perspective in medical parenting is huge and honestly I am thankful for the gift of the perspective we have because I can't imagine how aweful life would be without it. But I see in the medical community that this perspective isn't the norm and I would love to give this gift to everyone. This perspective doesn't mean you just sit down and stop advocating for your kids and working for what is best for them, I would actually argue the opposite is true, but it comes out of a different place with a different mindset.
There are all sorts of things I would love to change in this world, I am a person who takes social justice to a deep level, but man if I could move the needle on this, even just a little, I can only imagine all of the change that would stem from it.
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