proud gusto

August 17, 2015

OH hiiii there…

I’m okay and even good sometimes. But yes, I’m doing too many things. No, I have not been taking care of myself. Yes, it’s catching up with me. No, I’m not really doing anything about it. Yet. Sometimes I don’t until I do. When there are fight or flight stressors for months on end…well, I don’t know. It’s just a lot.

Last week I did almost nothing other than to try to keep us all in survival mode. Doctor appointments, calls, hurry up and sign up for preschool, babysitters, work, appointments. You get the idea. I sure get the idea.

I have the anxiety much.

I’m working on it. Sort of. Okay not really. But I will. Soon.

I hope. I really do.

First, the appointments. On Friday Elsie and I chilled with her good doctor at U of M Riverside Children’s in the big city. He is the doctor of baby hearts, the one that already fixed hers. I cry when he talks, it’s quite embarrassing. But he’s the dude (I’m sure he would really love being called dude, on a blog) who can speak doctor and then fix things and act all confident about it. Have at it, I say. So long as you safely secure the beating vessel in my daughter’s chest, you can speak whatever language you choose, with proud gusto.

SO anyway, Elsie has been very fatigued ever since her procedure. That was two months ago. It’s weird. She is just so so (SO) tired. She is back to napping, and can go down by 11 or 11:30am and sleep for two hours and then go to bed at about 8 that same night. She tires when we go for walks. She takes these deep breaths and says, Mommy! I am just so tired! (Which we all know is strange for any four year old. They like to say I AM NOT TIRED, with proud gusto.)

We had had everything checked and everything seemed fine, but I had had it. The fear started snaking its way through every part of me and after a series of events it was time to go back to the cardiologist.

ElsieWindow

Her echocardiogram looked good (phew), but her pulse is abnormally high. So the good doctor wants her to wear a device for up to two weeks. (It may let loose before then because it’s taped on and will eventually fall off). He wants to know if her pulse is always so high, like it was each time it was checked today and other times recently at other appointments. And if not always, when? What triggers it? How often?

Currently, Elsie Jane has a rapid-fire beating heart. If you know her, you know this suits her well. But it means her little body isn’t really able to get oxygen dispersed fairly. So she’s tired. Very tired.

This is what my friend Christa typed to me the other day:

“I know it’s been a tough year. But you always have some wise take on everything, some persistent reframing of the difficult and the gloomy so it is meaningful and valuable. I hope all that isn’t too much for you.”

I do have acceptance and surrender, of Life and Others, and even Myself, at some point, I always do. And you know what? It IS hard work. I don’t give it over all the time. I end up curled up and/or crying or checking out or…until I don’t.

OhthankGod for a program of recovery and the people in it who remind me what to do, or not do. (i.e. DON’T freak out, ruminate, resent, freak out, blame myself, freak out…DO ask for help, repeat sayings that seem trite but are really quite powerful after all, go to a meeting, tell your head to shut up, remember that it is not all up to me, stop…sit down…get quiet…breathe…)

Most things are

what we make of them

and some things make us.

Or both.

Yes, I’m worried and I want Elsie’s heart and body whole and healthy. I want that rapid heartbeat of hers to chill out, slow down, go easy on her. So after her monitor comes off, we will mail it to a place and then they will upload the information and then the good doctor can get online and scrutinize that information. I need patience in the waiting. Again. And we need your thoughts and prayers.

{ 2 comments… read them below or add one }

Arnebya August 17, 2015 at 8:23 am

Thoughts and prayers, absolutely. And hopes and wishes and pleases and everything else I can muster so that your girl is good, you are good, life is good, as deserved and needed.
Arnebya recently posted..Book Review: Open Boxes

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steph August 17, 2015 at 8:29 am

Stay strong, mama <3

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