Wednesday, February 11, 2015

Nope. Still not that post. I know..

Greetings All,

Just to start...we're STILL not there yet.

Just saying that sentence is a bit tiring, and a bit...horrible, too.  We never want to seem ungrateful for any of our time with Amie, but to be brutal, our time with Amie is over, as she's not really there anymore.

We are in Day 7 of her in a coma, and it's been 9 days since she was talking to us.  She's taken in no fluids in 7 days, and no real meals in 2 months?  The sustainability of a little body that doesn't want to quit is truly, truly admirable, but also truly tiring.

We added a morphine pump to her regimen this past Monday.  It's done wonders for Shelley's rest.  They put her on a traditional pain pump, delivering 1 mL of the morphine solution every hour, with the option of delivering a bolus of 1 mL every 15m if needed.  We give her that when she seems uncomfortable, which is surprisingly not that often.



For the most part, Shelley sits with her for the grand majority of the day.  She knits, she reads her books, she watches shows on her computer, or she just sits with her.  I do the same, but in far more limited doses. (more on that later).  Her patience, her caring, her endurance.....is beyond amazing.  As many of you keep saying, Shelley is a mother of a calibre that is admirable, commendable, and a little intimidating.

We've chosen not to show you any more pictures of Amie.  She's still our little girl, but to be honest, she looks quite awful.  Showing you a picture of her, in her current state, is not going to add anything to any of your lives, and will quite possibly make your day very worse.  So.

My sister came today, and visited for a few hours, as did Shelley's Mom yesterday, and Amie's favorite nurse, Rita.  It was nice, in the sense that they all sat with us, talked about Amie, their memories of Amie, and took our minds off the grinding monotony of watching her breathe, or not breathe, or not breathe, or not breathe, and then breathe again.



A bit of backstory that I felt like talking about, as it connects direly to today.

Between Amie and Anya, in 2009, Shelley was pregnant with our 2nd child.  At 18 weeks, she miscarried.  The pregnancy was too far along for other methods, so we were told we needed to deliver, or other more invasive measures would need to be brought to task.  We chose to deliver.

St. Joe's had a fantastic process in place, and from the first moment we walked on the Labor and Delivery floor to our exit, we were treated with kindness, respect, and deference towards the process that we had just went through, both with the loss of our expectations, and the loss of our child.  We named that little boy Nathaniel.  (there's a good story on why, but not right now)

At that time, I told Shelley that if I had the choice, I would not want to see him....as that would be the last and only thing I would remember about him.  However, I told her, I wanted to know what she needed, and what she felt, and I'd go with that.  She was the one who had carried him for 18 weeks, and I had yet to "meet" and bond with him.  St. Joe's offered a wonderful process for us, where they took his footprints, took pictures of him, and let Shelley hold him for as long as she wanted.  It validated her process, gave her closure, and overall, helped the healing process.

I bring this all up because it has been weighing on me heavily this past few weeks, seeing Amie.  I have been quite worried that I wouldn't be able to see Amie at her funeral without imprinting her final moments on my slide show permanently, and with more weight than I wanted.

However, this week has been a good test of that...because, honestly, I think she'll look better at her funeral than she does now.  I won't describe the specifics, but for those of you in the know, you know how poorly a person can look after a week of not eating, not drinking, not shutting one's eyes, or moving.  It does not do a body good.

I sat with Amie for a time today (not super long, as I'm still wont to turn into a weepy, weepy ball of mess), and could really look at her for the first time without being torn up.  It's absolutely amazing what a person can get used to seeing, get used to feeling, get used to getting used to.  I'm not sure if this is me growing up a bit, developing emotional callouses a bit, or just being so damned numb to the experience that it's no longer a punch to my soul.  But I think it's also more adult of me, stronger of me, and better of me to sit with her for longer periods, as Shelley is.


I had a former student tell me something this week that was utterly true, but she felt hesitant to say it, and had disclaimers and apologies after she said it. (right Chelsea?)  She said that there is relief and freedom in the ending.  Yes.  Yes there is.  I don't want Amie to die in the bigger, metaphysical sense...but I really want her to be done with the process she's in right now.

I feel awful (honestly awful, not in the fake awful that people say and then launch into how good they feel) that I am so looking forward to this summer.  I want to wander the country, wander Michigan, do so many things with Anya and Shelley.  I want to spread our wings and show Anya how many amazing things there are in America.  I want to visit every major art museum from here to the west coast and back.  I want to show her the mountains.  I want to take her to the ocean. I want to break free of the stasis that we've been in for the past 29 months. Once again, I feel awful for this, because it makes me more aware of how I'm not in the moment, which I am when I can....but I also have all the above.

Some fun pics to end the post:


A wonderful woman who greets Anya each day as she enters school told Anya that she had an extra American Girl horse, if Anya wanted it.  
She gave it to her today, and she couldn't have been more happy.  


Anya is ever my silly girl, and always willing to go the extra mile with me to take the best picture.  This is one such case.  She's never seen the Addams Family, nor does she know who "Cousin It" is.  But we had fun with that this morning.

Every time I write a post I keep imagining this is my last...but I truly hope the next one that I post will be the post I've had written for a while.  It's time.