Tuesday, February 2, 2016

Thinking, wishing, waiting

Is February over yet?  Could this month be any longer?  Oh, wait, it's only day 2 of February.

I've been thinking about the past year; where we have been, where we are now and what lies before us.  I've been thinking about part of the conversation I had with Dr. S last week.

She reminded me that I can't become casual in the care for the kids.  I can't just let things slide.  I have to be better at advocating and following up.  The fact that we no longer have a team of doctors and here we are three weeks into this disaster with Shelbie and no doctor with an established protocol, not long term relationships...nothing.  What we did have became weird.  They didn't want to bother with us anymore.  They didn't want to bother with me.  So, instead of standing my ground, I let it slide.  When they accused me of being dramatic and worrying over nothing, I believed in them and trusted in them and I let my hunch to follow up, go. I let it go at the expense of my kids because I didn't want to be THAT mother; because I know people look at me like the crazy mom.  The Munchhausen by Proxy mom.  I have always been that to people.  They look at me with pity in their eyes, not because I have sick kids because I just perpetuate it in some way.

And now, I'm angry and upset.  I should have done more.  I should have continued to bug them and taken them to another doctor until we were listened to. I should have not cared.  But, I did.  I care about what people think of me.

But, at the same time, it's not like I just have one kid with issues.  I have three.  For me to be following up on everything that comes up, it would literally be a full time job.  It would take moving away from here or taking the time to travel to other cities with more resources.  It would require me to be a full time mom and caregiver.  And even if I did have the time and resources to do all that is required, what quality of life does that leave for them?

So, now I find myself in a bind that is most uncomfortable.  I am already two months behind on Cardiology follow ups.  Three or four months behind on Pulmonology.  Shelbie hasn't been to Rehab since October and you can tell.   Spencer hasn't gained anything in the weight department to speak of since losing more than half of his body mass last Fall and GI wanted to see him in December but then Shelbie had a stroke.  I had an unplanned surgery and now this.

I no longer know how to manage my kids.  I don't know where to start to make up the lost time. I am lost in the struggle and no medical support to speak of except for one kind, hardworking woman in Boston who goes to the ends of the earth for my children.

That's what I've been thinking about.

Wishing...wishing that things were different today.  Wishing I had a better handle on this situation.  Wishing I didn't have to watch Shelbie suffer with the unknown.  Wishing we had answers.

Waiting...Still waiting.  I did receive an email this morning that a conference call did happen between Dr. S in Boston and Dr. K in Seattle at Fred Hutchinson to discuss this rare situation.  I did submit the insurance information requested this morning.  Then it hit me, that Obamacare could very well stand in the way between this plan working out.  And then what...

So, now, I'm thinking...I better just put this back in God's hands for today.  Wishing I could actually do this better than I do and waiting for the day when I have finally figured these tests and trials out!

In other news...When I get lost in things I can't control, I do extreme things to my hair.  It's now red and chopped...as in shaved the back and just to the bottom of my earlobes.  There's no way the little one inch hairs are about to fit in a pony tail...but, I like it.  I really like it.  It's a fun change and will be easy peasy.

In one more piece of news...I ran into a teacher at the high school yesterday, we were talking about how chocolate seems to be the answer to all of life's rough roads.  I told her chocolate milk from Reed's Dairy was my new muse...her reply has left me laughing, "Chocolate milk is liquid courage!"

Ha ha...If you need me, I'll be in the corner rocking with my flask of chocolate milk!

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