Involution of mom

C says he didn't give Little T aspirin on Sunday. One frigging day. It comforts him and makes me feel things are balanced by a hair.

I hope that he's bigger and stronger and won't need steroids this time and certainly not chemo.

Last night Special K was talking about Pokemon "involution" meaning evolution. Involution is the mysterious process by which the tumor starts shrinking again. I hope involution has started and its brief evolution or growth was just a day. That's never how it's worked. But then this tumor has never worked the way "it's supposed to". I've heard "it's not supposed to do that" so many times. Can't it work the way it's not supposed to and suddenly start involuting again with just going back to aspirin. You don't need steroids.

Little T understands much more this time. Far more than I probably know. He was extra snuggly this morning.

I just have to dump my fears and worries here and live in the present.

Red monster returns

This morning Little T's teacher called and said that Little T's left arm was red swollen and felt hot. This teacher is always matter of fact and patient and delivered this news calmly but she called first thing.

I called Hematology and told his doctor the news. I said I'd bring him in if the teacher's description was correct. I hoped anyway that somehow it was Opposite day and the teacher was exaggerating. But no Little T had hot sausage arm. And was fussy in that way he has when arm hurts.

The Hemo doctor wanted to rule out a fracture and so his arm was x-rayed. I have never hoped for a fracture before but I did and knew it was futile. Bone structure is fine. Swelling looks like blood vessels. A pause as the doctor tries to hope too.

The swelling and redness looks all too horribly familiar. The start of Kasabach Merritt Syndrome again. It's too early to say for sure and nothing is being done. Well okay another MRA which means another round of anesthesia. Seeing him go under is a terror that never dulls.

But back to the Hemo clinic where now Little T can play the Ninetendo. Kinda. Hermione was there and was helpful. I want to whine that Hermione was supposed to make things better. My magical companion.

I said at the Hemo clinic "I have a bad feeling about this." I still do. I want desperately to be wrong...for once.

We take photos of his left arm. Another familiar thing which we will go back to doing everyday. New twist is now Little T hates it and protests.

I want to shout "Can't the kid grow and not have this red monster grow too?" I want to cry but I don't because that would confirm my worst fears.

So let's have it be Opposite Day where I'm wrong and everything will be just fine. I hold on to that hope.

And new thing. We will now all go for walk with Hermione. Maybe that will be the spell that will break the red monster's hold. His arm grows slightly cooler and I hope and then heats up again. Walk to cool down. A walking spell. A walking meditation. It's all I have new. That and cod liver oil imported from Norway which he asked for yesterday. It must be new and different. Not the same.

My new life with Hermione, my service dog

Sorry I've not updated in so long. My whole life changed the day before Valentine's Day when I received my new partner service dog Hermione. She brings magic into my life everyday. We go out everyday by ourselves and I walk faster, because I don't have two kids in tow and because Hermione matches my steps, so if I stumble I have an area where I know to go.

I hadn't realized how much subconsciously I avoided going out without my adorable kids. But now I have a pretty dog. People smile at me and open doors for me and Hermione instead of getting impatient with me for being slow or dropping things or worse make rude remarks as if I can't hear. Hermione also opens my fridge door, pushes push plates and picks things up for me.

I thought I was getting a dog to help me. The organization I got her from is called Canine Companions for Independence (CCI). I've also thought of myself as an independent person and spent the first few days I was at CCI wondering if I belonged there with folks in wheelchairs. Then I got really discouraged as my spatial issues became profoundly clear. Then I actually worked on them instead of spending that time kicking myself for not for example understanding how a door opens without actually seeing it open.

One of my LJ friends put it best I've spent most of my life trying to "pretend I was a defective normal person instead of a "ok person with a disability." As one of my classmates said to me "I embrace my limitations rather than fighting them so I can do more." I am still exhausted from my training and my increased physical activity of exercising a dog and walking more. But my whole outlook has changed. I don't fight to get by. I try to figure out how to adapt conditions to improve my life with my disability. Already I'm doing more. I can't wait to see what future brings.