Saturday, January 31, 2015

Yeah…she’s good stuff.

Greetings All,

I like to be the deliverer of happy witticisms in my posts, and I’m going to do my best to do that with this one as well, but there’s just no hiding the fact that this will most likely be the last post I make before Amie dies.

Let’s back up since the last post I did on Wednesday.  When I was last checking in, Amie was vomiting every 90-120 minutes.  She was really uncomfortable, and had started reporting what we knew to be both tumor pain (head) and nerve pain (extremities).  Remember what I was saying about things getting worse in the last blog post?  We were starting to really see it.

We called hospice on Wednesday night, and they came in on Thursday morning.  After consultation, and seeing in just how poor a shape Amie was at the time, they called Dr. Pittuch to consult.  They decided that the vomiting was most likely due to the brain tumor growth, which was affecting intracranial pressure.  

As a relatable point, if any of you have ever had a really bad migraine, and became nauseous because of it, you were suffering what Amie was suffering…’cept hers was stretched over 36 hours.  

Kathy (our hospice nurse) accessed Amie through her port, and then we gave her a large dose of steroids every 6 hours for the first day, and then have been giving them to her every 12 hours.  This immediately stopped the vomiting.  I cannot possibly explain how much more comfortable she was, and relieved we were, to see her vomiting stop.  I think she puked 15-20x that day.  So. Awful.

As we were giving Amie super frequent doses of Oxycodone for her pain, they also increased her dosage of methadone.  She is now comfortable and resting, which is beyond helpful to our mental state.

But she’s also slipping away.  She rested and dozed for around 22 hours yesterday, almost entirely in her bed in our bedroom.  Today, she woke up this morning around 7:30a, and wanted to come with us out to the living room, and that’s where she’s been all day.  

She talks occasionally, but mostly just sleeps and gazes at things when she’s awake.  We keep her warm, and comfortable, and talk to her when she’s awake…but mostly she's just floating.

I hope the next bit doesn’t come off sounding overly-jokey or minimizing, but it’s so damned strange to be playing a computer game, and look over and wonder if your daughter has died.  You stare at her for 20 seconds, don’t see a breath (or at least it’s shallow enough you can’t see it from 8 feet away), and wonder if that was it.  Then you see her take a breath, or move her eyes, and think….”Well, I guess not”…..and then repeat that a few times an hour, all day long.

Shelley and I are both ready for it to happen.  We’ve prepared ourselves as much as we think we can, and made a bunch of phone calls/texts/emails to close family to let them know that time is short, and last goodbyes are ready to be said.

Ok, now that I’ve done that, I wanted to share with you Shelley’s quest.  Her mission.

When we went to Borek Jennings (Thanks again to Noel for doing all the prep work for us!)  to do all the preparations a while back, we both said we weren’t interested in the traditional Catholic prayer card.  We wanted something a little more personal, a little more appropriate for everyday life for people.  That was the last I thought of it.

Shelley, however, thinks all the time about crafty stuff, and has been plotting out a way to carry out her awesome plan.  She wanted something that she could make a LOT of, and have available to everyone who came to the visitation/service…but wanted them to be something that people, both religious and not, could keep with them to think about and remember Amie.

What she came up with are these small fimo clay hearts, with a small A pressed into them, with a metal punch A.

She searched for several weeks for the correct tool, and found it at Wal-Mart of all places.  

Here’s where things got difficult, though.  How many to make?  We would love as many people to come to her visitation and service as would feel comfortable coming (seriously…if you want to come, then come.)  But we also imagine that there’s a lot of people who might not be able to handle coming, which we also understand.  Should we make 200, or 2000?

Shelley decided on the more the better.  She is aiming for making 1800 of them, and all the ones we don’t use, we’ll leave for people across the world, as we go about our journey in the years to come.

Anya is always willing to do the silliest stuff with me in pictures.  So, so much love for her.

She was getting hungry.  She started trying to eat them.  I had to stop her.

Here’s what I love about Shelley (ok, not the only thing, as that would be cruel), is that she is the eternal “lemonade from lemons” kind of person.  As Neil Gaiman said in the best graduation speech ever, she just wants to Make Good Art.

Give her the worst thing that a parent could be hit with, and what does she want to do?  Make Good Art, and share the love, share the memories of Amie, and share the experience that she’s been going 

Yeah…she’s good stuff.

OK, y’all.  I promised Shelley I wouldn’t take too long on this, and I want to hold myself to it.  Be ready, friends of Amie, we’re almost home.