Monday, April 6, 2015

Escape from radio silence!

Greetings All,

I’ve been silent for the past month, not out of choice, but out of survival mode for the most part.  Going back to work on March 16th was exceedingly good in many, many ways.  The structure, the kindness and goodwill of so many of my students and co-workers, as well as just a sense of purpose was very good for me.

But it’s also hard, in so many other ways.  By trade, I’m a storyteller.  I teach through stories.  I don’t understand how people teach History with worksheets, or with entirely student-driven lessons.  But at the base of my craft as a teacher is forming dynamic relationships with the students in my class based on trust, based on caring, and then telling stories on top of those relationships to connect dots between historical events and their lives.  That’s how I’ve always managed to make history come alive, and make it more than the worksheet-based nightmare that Shelley lived through in HS.

As you might imagine, there is a massive expenditure of energy that goes along with that.  Match that up with the fact that neither Shelley nor I are sleeping very well yet, and you get a very tired Jason.  Very. Tired. Add onto that fact that I don’t really know how to teach at ½ energy, or ½ anything… So, with that, I haven’t written.

Anya is doing as well as can be expected, and has really fallen into reading more than we ever would have imagined.  She’s reading an average of a book a day…and these are decent sized books.  I’d guess she’s reading 2+ hours a day, on average, right now.  When we ask her about what’s going on in the books, with a little prodding as she finds the whole thing tedious as we’re basically testing her to see if she actually read it after all, she gives us a basic plot synopsis…so she’s totally reading it.

She’s lonely, that’s for sure…and we’re doing our best to fill in those gaps wherever we can.  For example, yesterday was Easter, and Shelley got me this crazy little orange monster guy who has a foam eyeball.  If you squeeze his belly really quickly, the air compresses and the eye shoots out.  The monster comes with 4 extra eyeballs as well.



Anya spent several hours yesterday making 3 different sized monsters out of toilet paper, building a backstop, creating prizes, decorating balloons, and making other accompaniments to this game.  Then she asked us to come play.  We did….but what she really wanted was to have a best friend again who would play it over and over and over with her for hours.  We did our best,  but we do get tired after several go-throughs, as anyone would…except if you’re 4-7.


Anya and Shelley also spent several hours up at Uncle Chad's place, near Linden.  She drove a 4-wheeler, and really enjoyed it, once she got used to it (from reports...)


We start at Ele’s Place the Wednesday after Spring Break, and we’re really looking forward to that.  We toured their Saline/Ann Arbor location last week, and talked about the process of healing that they use, and it sounds like it will be great for us, as well as Anya.  We’re really looking forward to that.

Shelley is doing as well as can be too.  She’s been volunteering at Anya’s school nearly every day.  She helps them out with whatever they need, from Spelling tests, reading to kids, filing, sharpening pencils, and a ton more.  It’s helping her fill that silence, and also fill her bucket to be helping out at CSA.  She’s also been meditating, doing yoga at home, and doing a bunch of fix-up projects at home that she’d put off while Amie was sick. 

In the end, I can’t really talk about Shelley’s or Anya’s grief process.  For me, however, the process of grief is so totally, totally strange.  In nearly every conversation that I have, I feel compelled to somehow bring up Amie, but nearly never do.  I want to talk about her to everyone, all the time.  I want everyone to know that she died…..but I don’t.  The look on people’s faces, and the time I then immediately snap to making them feel better about her having died makes, me feel terrible for bringing it up. 

So I’ve been spending a lot of my time either not talking to people, which is fine, or talking about things that I can absolutely not have any way of bringing her up…..or with the people who I’m close to at work, talking about her in my normal, natural way and trusting that I won’t make them cry by doing so.  (Thank you, Tracy, Tracy, Shannon and lunch people!) 

There have been a few times when I’ve been overwhelmingly overcome with emotion, and these are always the times where I’m least expecting it.  For the most part, though, it’s just the undercurrent of things right now, and I imagine that it’s going to be that way for a very, very long time.

A few things that were exceedingly good, and hard, but good that I’d like to talk about…

Firstly, The Howell Carnegie District Library is one of the libraries that Andrew Carnegie decided to build when he realized that he’d lived most of his life as a horrible, greedy, robber baron of a corporate magnate, and decided to give his fortune away near the end of his life.  He did this as a salve to his legacy, but he did a lot of good with it nonetheless. (you might remember this from History class.  Maybe…)  Anyway, Howell got one of those libraries, and it’s this gorgeous old-school brick building that just does not get made anymore.



As I’ve talked about in the past, the girls and Shelley spent a LOT of time at the library reading books, making friends, going to library school, and generally just loving the place on a level that words do not adequately serve.  Several employees of the place have been fantastic supporters of my family and the girls, and we received a letter from one of them last week.

In that letter, we found a card and a picture.  Amie’s oft-favorite books were the Mo Willems books about Elephant and Piggie, and we would read them over and over again.  They dedicated the shelf for those books to Amie, and it just blew my mind how cool that was.  



That was one of those gut punch moments…where I wasn’t expecting it, and the sheer love and caring that that moment showed to me…how much they got it, how they understood how much those books and those memories meant to Amie, and me by proxy.

Even now, typing that out, I’m sitting in Uptown Coffee in Howell, hoping the people sitting around me aren’t noticing that I’ve got tears in my eyes, all the while I’m doing my “passionate typing” as Shelley would call it.


Because silliness is needed to raise the hilarity level, 
here are Anya and I doing our best Elephant and Piggie impersonations.


The other thing that was both good, and hard, but glad to have been able to do it.

First, a disclaimer…up until Amie got sick, I was not particularly good with accepting help.  I’d been largely raised to take care of myself, and saw others helping me as me not being able to do it for myself.  I’m a work in progress, and had long since come to peace with that.  But once Amie got sick, we had to get used to people helping out, or else we’d come apart at the seams.

Lots of people helped out who were family, and lots who weren’t.  One of the people who helped out a lot, and in lots of different ways, was the Hammack family.  Shelley had met Jennya years ago, while Jennya was employed as a stylist at Simplicity Salon in Howell (which recently closed…) When Jennya left the salon to take care of her growing brood, Shelley continued to see her professionally for her services out of her home.

As Amie’s treatments intensified, Shelley was never one to take very good care of herself, and I reached out to Jennya several times to see if we could get appointments for Shelley at strange times.  She was always more than agreeable, and pretty much said that if Shelley wanted to come over at 2am, she’s set an alarm and style her with a smile…and refused to take payment.

Jennya and Chris also own a catering/meal preparation company, Simpled, and they frequently delivered meals to our house, never asking for any payment, and often dropping off a LOT of food (Shelley ate nearly all of it.  She loved it and hinted at my harm for eating some of the meals.  Don’t trust that smiley exterior.  She’s vicious I tell you. Vicious!)  They also picked up Anya from school when we were in radiation treatments at the end of the school year last year, when I couldn’t get out of work to get her.

I tell you all this because I had the opportunity to give a little back last week, and got to help them move into their new house.  It was really, really good for me to be able to give back, and do it in a way that I felt like I could make a difference in the process.

The icing on the cake for me, however, was getting to play with her two youngest kids for a while afterwards.  Chris had ordered some food for everyone after we were done working, and while I waited for it to arrive, I got to play with Ollie and Vaeh.  They are 3ish and 5ish (if I remember correctly), and it was great getting down on the ground and playing with kids that age again. 

They rode me around like an elephant (both at the same time), played silly games in their room, Ollie showed me how to slide down the stairs on our stomachs, and both of them taught me how to properly leap off the stairs into their new foyer. (oh to have a fully functional spine again!) 

Playing with them made me feel slightly whole again, if for only a few moments, and made me realize that there is a hole there that needs to heal, and is going to take quite a while to do so….but that it will happen, and it can happen. 


Anyway, this has become a book and a 1/2 ,  so I’m going to end it here.  Hope Easter and Spring Break (for my school peeps) is treating you well, and if not that, then Tigers Opening Day! 

Enjoy the warmth!  I will.

Tuesday, March 3, 2015

No whammies, no whammies, no whammies……..STOP!

Greetings All,

Warm is good.  Warm is really, really good.

I will not belabor that point, nor rub it in.  But I will reinforce that it’s way better to be sad and warm and on an adventure than it is to be sad and cold and at home.

I’m not sure exactly how much anyone cares about our vacation, but I will err on the side of “those who don’t care won’t click through, won’t read, will scroll by”, and those who are reading are those who want to know.

Ok, now that we’ve got that covered, the trip!  Hopefully none of you will mind the flood of pictures we’ve been shooting.  

The trip down is a blur, as you might imagine.  Normal people might split that up into two days.  WHY?  Isn’t it better to enter a fugue state where you barely remember your own name as you drive 19.5 hours straight? 

Back in 1991 (Steve…1991?) a friend of mine and I drove down from Michigan State, and we did it in just over 17 hours.  We drove so, so fast.  We disobeyed every speed limit, held our urine to the point of perilous bursting, and ate a sack of Hot and Now Hamburgers way, way past their due date.  This time?  We had a 7 year old who had to pee, a 42-year old Dad who had to pee, and a knitting wifey who rarely had to pee. Shelley drove Michigan and Ohio.  I drove Kentucky and Tennessee.  Shelley drove a chunk of Georgia, and then I finished it up.  No long breaks, just fuel, food, pee, GO!  As the Beasties might have said (RIP MCA), No Stop Til Clearwater.

The people here have been exceedingly gracious, and welcoming, and regularly saying how the blog has made it so that they feel like they know us.  (Hi Parkwood people!)  Across the board, they have welcomed us, offered us kind things, and then left us to our family time.



First morning there, at breakfast, this fella flew in and joined us.  Apparently, my mother feeds them.  

Driving to the beach the first day, there was a bird on the roof of someone's car.  A bird.  A large bird.


We went down to Clearwater Beach the first day.  The water is painfully cold.  Anya?  Went right in, and spent the next hour collecting shells.  


Giant boots.  Why not use it as a photo shoot.


This is my only bit of bragging.  Man, oh man, I love the heat.


Random commentary about grief:  Tonight, a good friend said this to me, “I don't think there is a better way to deal with grief - just different”, and it got me to thinking about grief.

I am not sad that Amie is dead.  Her suffering was terrible, and awful, and heartrending.  To wish she was alive would be to insert her back into that maelstrom for my benefit, and I’d rather be hit by a bus multiple times a day than wish that.  I miss the hell out of her, out of her laughs and fun and energy and sisterhood, and so many other things.  I miss how she gave balance to our teeter-totter, and post-Amie, we have a radically out of balance life (for now).

But I find that what I am grieving for are the lost dreams, the things I find she will never do.

I think this is the most insidious part of having a child die while you are alive, you are forced into  drowning the dreams that you had, and searching for dry land in the meantime.  When you see a random commercial about teenage acne, about family data plans, about Disney…  you can’t help but reflect on all the things you WILL NOT be able to do with her, and it’s a gut punch of the worst order.

I commented a while back about how you can get ready and used to anything you know is coming.  There’s this brutal scene in the 1st James Bond movie with Daniel Craig (Casino Royale) in which he is brutally tortured.  



However, the torture doesn’t start for several minutes after the scene starts, and you know it’s coming.  Much like Daniel Craig (in my nonexistent experience with torture), I think if you know what is coming, you can get in front of it, get control of it, and master it.  (I’m a guy, of course I think of stuff like this).

But the stuff with Amie is different.  You can’t know what is coming on in the next ad, the next bus stop, the next page of the magazine, and that’s the most bewildering aspect of all of this.

…and here’s where the double whammy (No whammies, no whammies, no whammies……..STOP!) of Amie’s death hits me.  I feel guilty for not mourning correctly.  I know of the apoplectic grief of some cultures, where they cry for days, where they rend their clothes and rip their hair out.  I know about expectations of endless sobbing.  But I don’t have any of that.  I was sure that she was going to die in the deepest parts of my soul as soon as I saw her decline in April 2014 for her 2nd brain surgery.  

Everything since that has been dressing, preparation, and practice for the real thing.  So how screwed up is it that I feel bad that I’m not feeling bad?  Guilt is a vicious thing.  

But in the end, we’re focusing all our time on trying to get Anya to a place where she can be the best version of herself.  She’s pushing out, pushing back, and giving us extreme sass in so many places.  That’s to be expected in this situation where her best friend is now gone…and we need to help her find her new normal in every way that we can. 

When we get home, we’re starting to work with Ele’s place.  We’re going to be reaching out to many of you for play dates, for sleepovers, for adventures to distract, to comfort, and to rebuild her foundation of who she is, what she likes, and that life is good.

Ok, y’all.  I feel like I riffed on all of this for long enough.

For all you consummate carnivores out there. I wrote this entire post at Smokey Bones, in Clearwater, Florida.  I hope you enjoy that.




Friday, February 27, 2015

Are you OK?

Greetings All,

Not sure how long this post is going to be as I start it.  Normally, I have a list of things/thoughts I’ve sketched out in my head before I start writing, but I only have one, so this might be short.

As I mentioned in the last post, we officially made the decision to go to Florida, so we’ve been busy planning for that the last two days.  I had a moment where I was channeling my Dad and checked out the weather channel, and saw that there’s a good storm blowing into the region on Sunday, and that’s when we were going to leave.  Not wanting that, we scrapped our Saturday plans and decided to jump on the road tonight (between Midnight and 5am, whenever we wake up.  Yes, sleep is that elusive right now).

A lot of people have asked us how Anya is doing, and we had a great opportunity to really see an answer (not THE answer, just one slice of that answer) today, as Anya had another culminating event.  For you newer readers, Anya goes to a charter school (Charyl Stockwell Academy), and one of the things the kids focus on is presentation skills with the knowledge they have acquired.  2-3x a year, the kids will present the end results of their projects to the adults who are able to visit their classroom during the days of the event.

As we went in today, we got to see the full spectrum of capabilities that Anya’s classmates have learned, as there are both 1st and 2nd graders together in the classroom.  Some are spectacular writers, some are just beginning.  Some can present well, others are really nervous.  Anya was really, really doing well.  She had researched well, written both her persuasive and informative pieces exceedingly well, and did so with charm and energy.  She did all of that within the last 8 weeks, when she was only going to school 1/2 time, and was dealing with Amie’s decline as well.  Yeah.  She’s handling things well, at least academically.

This segues into what I wanted to talk about well, actually.  

A few months back, I wrote a blog post that I got A LOT of feedback on, and it was nearly all positive, so i wanted to do something else in that vein.

Please stop asking people who have gone through something harsh/traumatic  “ Hey, are you doing ok?”  <disclaimer, this is not pointed towards anyone specific.  It’s quite universal.>

People are constantly asking me, over the last two weeks, “Are you doing ok?”

I’m absolutely bewildered on how to answer that question.  No matter what I say, I feel like I’m either being a jerk and dumping on someone who’s just trying to participate in the most basic of social exchanges and not be a total jerk.  I get the fact that the other person wants you to know that they know you’re struggling, and that they don’t really have the correct words to say.  But, just like saying “Let me know what I can do to help” or “let me know if you need anything”, when you say “Are you OK?”, you’re putting the burden of things on the person who is in crisis.

Of course, in this moment, I am supposed to offer up alternate statements.  

If someone was to say instead, “How was this week?” or “How are things going today?”, I feel like I can compartmentalize and say something useful, or take an easier way out and say “ok. ok.”, and move along.

When people ask me if I’m doing ok, it seems like an imposition of sorts, as if I’m supposed to organize and dissect all the completely varying and complicated emotions that are swirling around me right now.  Yes. It sucks. No, she’s not suffering.  Yes, I miss the hell out of her. No, we’re not ready to go back to work. Yes, Anya misses her sister. No, we didn’t sleep well last night. Yes, we wish things had gone a different way. No, we aren’t settled with the way we see the world and the justice of a freaking 22 month old getting cancer and fighting a valiant and glorious and beautiful fight for nearly 3 years.

How does one do that in normal, comfortable conversation?

One does not.  One struggles.

So.  If you have the option, ask something kinder, something more pointed, and something that gives them the option to opt out if they desire.  “Are you OK?”, doesn’t really do that.

Enough preaching for today?  I think so.





Want to know what gluttons for punishment Shelley and I are?  

We went through all of Amie’s clothes on Wednesday.  All of her clothes in the closet, in her dresser.  That was hard.  We also went through all of Anya’s old clothes that she’s no longer fitting in that Amie will never get the chance to wear.  That was harder.

Through this entire process, I was crying.  A was a sad, sobby mess.  Seeing some outfits that she wore is such a tangible reminder of things, a very hyper-specific memory inducer that makes you immediately flash back to those postcard moments, those amazingly great times…and breaks you for a little bit.  Of course, if you go through all her clothes in one day, as we did, it breaks you over and over and over. 


We filled up the car with Amie's clothes, and took them all to Salvation Army, minus the 5% of the stuff that we couldn't part with, and wanted to keep for all the reasons one might want to keep them.  

But, maybe, like ripping off a bandaid, it helped with the healing process.  We’ll see, we’ll see.


Ok, enough for me today, as I’m a bit raw.  We’re headed to Florida in t-minus 12 hours or so.  Updates from the warmth, if I’m focused.

Tuesday, February 24, 2015

Slow steps towards new normal...?

Greetings All,

For all of you who have been inquiring if I’m going to continue writing, the answer is yes.

I was considering starting a whole new blog, and writing there, but in the end, as Shelley and I said tonight, a blog is a blog.  So, yeah.  Hi!

A recap of the last week seems to be necessary…  

We had the funeral home visitation on Monday night, and it was beyond overwhelming to see so many people come out to say goodbye to Amie.    Shelley, Anya, and I arrived at just before 1p, and had a half hour with Amie.  Once 1:30p came, people started arriving, and we were talking and greeting people until just about 9pm.  I think I sat down twice, and never stopped talking to people.

We didn’t count the number of people who signed the book until after the memorial service, but we’ve figured out that roughly 1000 individuals came to say goodbye and pay their respects.  Wow.  WOW.  

The memorial service itself was great, with Amy valiantly reading a book we asked her to read (The Fall of Freddy the Leaf) and Sarah giving some remarks, which ranged from poignant to funny to tear inducing sincerity.  All in all, it was a truly great farewell to Amie.

The time since has been….quiet, and full of activity.  Let me explain.

I’m not returning to work until March 16th, and Shelley currently has no work to return to, so we’ve had a lot of time to be with each other. We’ve been doing lots of things together, such as….


This is actually a bit of cheating, as it was before the funeral, but it's still a great picture.  We sent Anya to bed with her hair still damp, and she woke up like this.  So, so looking forward to HS graduation.


The full deal, had to share.


This is Shelley's new hat for me, with a fleece liner.  I have several hats to wear, but they're all quite thin, and now that I have no hair for insulation, I needed something more industrial.  She let me pick out the colors.  Of course, it never occurred to me that these are also the Tiger's colors (sorry Amy Q!), but people have been complimenting Shelley's knitting like mad, so the public approves!


We've been playing lots of games with Anya, to make her feel as special as possible.  I like this game quite a lot.  It's called "Put all the blankets in the house on Anya".


Shelley prefers to do more standard things, like painting nails.  How boooooorrrrring.



Anya has been giving horse riding lessons as well.  Baby Jumping made sure to wear her helmet.  Safety first, right?


But we’ve also had a lot of time for quiet togetherness, and lots of reading.  Shelley is reading books, I’m reading books, and Anya is reading books.  Reading, reading, reading.  As Amie one said to Shelley, “Momma, you know what Anya is?  She a REEEEEEEEEEAAADER.”  (we never got that on video, but man it would have been perfect had we done so).


It’s a strange mix of loss and freedom, this last week.  The funeral was one week ago today, and in those 7 days, I get gut punched at least once a day, in some way.  

Last week Wednesday, it was standing outside Anya’s classroom door, listening to the happy chaos of an elementary school building, and taking a moment to soak in the fact that Amie will never get to Charyl Stockwell, and know the joy that Anya knows in her time there.

Yesterday it was getting a phone call as Shelley culled down Amie’s clothes, and took them out of her dresser, and coming home to comfort her, as she was having a really hard day.

But those moments are tempered by the freedom we now have to do things, unencumbered by worries about stamina, bacteria, lack of immunizations, communicability of others, etc…  We can take Anya anywhere and do just about anything (that’s legal) to give her experiences that she was lacking the last two years.  There’s joy in that too.  Twisted, strange, and surreal joy…but joy nonetheless.

One of the things we got to do was go to the Detroit PuppetArt Theatre....


Shelley discovered the Detroit PuppetArt Theatre a few years back, and has gone to several performances thus far.  I've always had to stay back with Amie, so this is the first time I was able to go.

The performance was about Ananse, the basis for what some of you know as B'rer Rabbit.  He's the West African trickster God who is the storyteller.  The performance was about how he came to possess all the stories, and it was really, really well done.



Afterwards, for a few extra dollars and time, they host puppet making craft workshops.  Anya always thinks this is about the best thing ever.

We think we’re going to skip town and head to Florida later this week, but not altogether sure when.  It all depends on Shelley’s root canal today, and how that goes.  She’s getting the consult on it right now as I type.  

Shelley does not like dental work.  'Nuff said.

My perspective (which is always the correct one, absolutely, no matter what, right? RIGHT?) is that we’re going to be sad no matter where we are at, so we might as well be sad and WARM right?  


That's Clearwater today.


This is Howell. Which would YOU rather be in?


We're doing ok for now.  As I've said before, not sure what the other options are, all considering.  Not sure if I'm doing ok because of who I am, or the time we got to spend saying goodbye, but we really are, to be so presumptuous to speak for Anya and Shelley. 

Not sure of the frequency of my blogs for the time being.  I figure when I have something to write, I will. Sound good?


Thanks all.

Friday, February 13, 2015

Funeral Arrangements

Greetings All,

No real words tonight, just funeral arrangements.


ok, that's not totally true, as I want the post to have a picture, and not the map, so I will include my favorite picture of Amie from 2014.


Firstly, we encourage any of you to come who want to say goodbye to Amie.  We really mean that.  If you feel called to come, then come. Anyone who wants to come is welcome, whether you've met her or not.

The arrangements are going to come in 2 parts; the visitation and the memorial service.

Visitation: Monday 2.16  2pm - 8pm

Borek Jennings Funeral Homes & Cremation Service
312 South Michigan Avenue
Howell, MI 48843
(517) 546-0100

The visitation will be held from 2pm until 8pm on Monday February 16th.


The parking lot for Borek Jennings will fill up FAST, however there are several lots you can get to quite easily.
  • The parking lot for the Centerpoint Church is just below and to the right of the funeral home (SE).
  • The parking lots behind Mr. B's and the bank, on Grand River to the right and above the funeral home on the map (NE).
  • On-street parking on the surrounding streets.
We do not recommend parking in the bank parking lot, or the Post Office parking lot, just in case.

Memorial Service:  Tuesday 2.17  
10am Gathering, 11am Service.


Centerpoint Church
214 E. Brooks St.
Howell, MI 48843
  • Visitation and gathering at the church will start at 10am.
  • A memorial service is going to be held at 11am.
  • There will not be an open mic to speak about Amie.
  • Same rules go for parking.  I believe it will fill up quick, and if you are arriving nearer to 11am, you'll probably need to seek overflow parking.



There will not be a burial following the service.  

Any questions?  Email me.

Night all.  Been awake for way too long and need to sleep.

Friends...this is that post.

Greetings All,

Amie did it.  She finally did it.  She decided that being here wasn't worth the trouble and all the fight she was putting up.  She passed in her sleep tonight, some time between Midnight and 3am.

It's strange, the mix of sadness and relief we're both feeling.  Sadness that this little ball of energy and eloquence and joy and delight will no longer be with us.  Relief that she is no longer shot full of pain and discomfort.

I wrote this post originally on the 5th, and it's been sitting here since.  When I originally wrote it, I was really worried about what I was going to remember (hence the pictures that will soon follow these words).  But, I'm strangely not so worried about that right now.

Someone mentioned the other day on one of the blog comments (which we always read!) that maybe this time period, the week+ in a coma, was a way for Amie to let us down easy, to get us ready for the time period to come.  Shelley said the same thing to me as well, without reading the comment.  I think this time period, as hard as it was (and it was excruciatingly hard), was a very useful way to transition us from where we were to where we needed to be, all within a week.

Arrangements will proceed later on today, and we'll announce them here once we have them.

In order to start the process of crafting the memories in our permanent mental slide show, and bringing much more positive ones to the fore, here's a few pictures from happier times, all from the past year.


Shelley and Amie loved spending time outside, and where better than the peony gardens right outside Mott.  For those of you who haven't been there in the spring, they're a sight to see.


Amie at Mott, once again, but looking fierce and silly, for me.  


Amie with her precious pigtails, that she was so proud of growing back.


Amie wearing her favorite dress of the summer of 2014, which she called her "Syrup Dress", because she got syrup on it the first time she wore it.  As soon as it came out of the laundry each day, she asked to wear it. 

In this picture, she has "braid across" the hairstyle that she enjoyed seeing on Anya, and wanted so desperately to wear again for herself.   She got that wish by the end of the summer, for just a little bit, before she started losing her hair again.  She's also wearing her Hawai'i hair accessory that she and Anya got so that they could be twinsies.    So much memory all packed into one little snapshot.

As I said, more to come in the days ahead.  

Good job, Ams the bombs.  You did it.





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.