November 14, 2017

Skelly’s gone

Jeff mentioned that he hadn’t seen Skelly the last few times he’s driven past the curve down the street but sometimes you could miss him in the trees, surely he was still there. But today I stopped for a parade of turkeys to cross and I looked and he’s not there. Maybe they took him down with the Halloween decorations. Such interesting timing, though, now that I’ve made some “living” friends here... did he feel like his job was done? I wish I could have said a proper goodbye.

It was opening day for the Cougar Cave and seemed to be a huge hit. I’m worried I didn’t order enough mesh stress balls and mini Rubik’s cubes. We sold mostly those, and lots and lots of slime.

I dropped Carter & Gray off for haircuts while I ran into the grocery store for a few things, and it felt like the closest experience I’ve given them to the Stranger Things kids kind of freedom. Not even close, but it felt so free range of me.

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.

November 12, 2017

No Probllama

I spent this afternoon shopping with Molly and we bought wrapping paper and odds and ends and when we walked into World Market the first thing I saw was a llama pillow I just had to have. It would match my living room for the holidays oh and also it says "No Probllama." 

But it was $29.99 and not on sale and I just can't spend that much on a pillow with words. So we went about our shopping and learned that special golden llamas had been hidden in the store and we if found one we would win a gift card. Well then. I think we must have searched that store for a good hour. We gave up like three times. But we couldn't bring ourselves to check out yet and finally there was a gold llama waiting for me, hidden on the floor. It was worth $50! Yes I bought the pillow.