November 13, 2017

What if we let people tell us who they are by listening to their stories?

What if we let people tell us who they are by listening to their stories?

No assumptions, not by what they look like, not what we think their story might be...  let me offer a simple suggestion: think before you speak. I'm probably not talking to you but these days I could be wrong because today we were at the children's hospital for an infusion and two nurses yes TWO DIFFERENT NURSES have feet in their mouths right now and this mama is PO'ed.

My kid gets this stuff all the time in regular life. It would be oh so nice if when we make the dreaded trip every 8 weeks to the oncology center that we don't have to deal with this sh*t there. Can't we have one safe space outside of our home? 

First of all, I try to be positive and shine my light as far as the eye can see, but I have got to be honest. I am so over hospitals. It's the only life Noah has known, in and out of hospitals and ya know, the heart does not stop breaking after a while. There is always a new spot to be freshly broke. And many times it feels like the first. I'm so over it.

I'm tired, I'm unpleasant, and I am done faking like we are doing just fine when clearly we are not. What a hard profession it must be, to be at the service of people who wish they weren't there at all. But I am not sorry.

I'm frustrated that there aren't accommodations for the in-betweeners like him. The chatty, cheery nurses mean well but they need to read the room once in a while. We don't want to be there. And it's no offense to you. We legit just don't want this to be our life right now.

So the small talk gets you in trouble, then we feel like we have to make you feel better because you feel awful now for asking if he was in FIFTH GRADE? He's a junior in high school. Surely nurses are aware of invisible disabilities like Crohn's and growth delay, etc etc. Out of some form of privacy I won't get into what the other nurse assumed. I still feel like crying. And we're paying lots and lots of money for this. What a sucky deal.

So what if, instead of assuming, instead of judging by looks, size, shape, clothes, how much makeup... we allow the human to reveal their story in a way that is most comfortable to them? We come up with ways to hold a conversation that have nothing to do with age, grades, size, gender, looks? Things with value and substance? Or maybe we just say nothing at all? Quiet is always good. It's way better than making me and my kid feel like crap the rest of the day on top of being stuck in a childish infusion room for hours until we can finally go home.

I don't have any good solutions tonight. We are being very impatient patients. We have no choice. This is our reality and apparently it was high time for a good old fashioned pity party. I want us to not be in this situation in the first place. I want a different story for my kid, one where he can be typical in the ways he wishes he was typical. Of course he's awesome and amazing and special (see also: how does my heart continue to function while shattered?) and because of that he deserves so much more, so much better than this.

I've got to do something to make this better but I'm so tired, it always feels like starting all over again, looking like the difficult parent, expecting more than people are able to do, every time. And I'm just so tired. But I'll never stop. Because it never ends.






8 comments:

  1. Hugs to you sweet mama! So happy to read your words again!

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  2. I am in tears for you and our sweet Noah. Lots of hugs coming your way next week. Yes, Quiet is always good. Love you so much, Mom

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  3. You are entitled to be so wary of people that should know better and should act better and don't. As tired as you get in fighting these battles, I'm sure from reading your blog you do realize when it comes to your child you will never quit till your last breath being a Mama Bear. ((Hugs)) and may you have some gentle days ahead. Your children are so lucky to have you there and always fighting for them. Continue...............♥

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  4. Of course you are tired, and I'm wishing you so much ease. Your anger is just as righteous as your love...but it is so ridiculous that you have to experience that in a care setting. You are such a beautiful mama.

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  5. *HUGS* You are amazing! I know you just keep putting one foot forward at a time...so sorry that this is your reality. It is a tough one :( I think of you and your family often.

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  6. I love you so much, and your reaching your limits and imposing/insisting on boundaries is right on time. You are both doing such hard work--painful work--and like Deb said I wish you ease wherever you can find it. Even if it means kicking in a few doors/heads (METAPHORICALLY FOR THE HEADS LOLOL)

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  7. Sending you love. And quiet thoughts.

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  8. Ugh I’m so sorry, Steph. Wish I could hug it all out of you. Love you.

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Your comment is gonna totally make my day!