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.

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.

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

borekjennings.com

(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.

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.

Once again, we’re not there yet….

Greetings All,

Once again, we’re not there yet….

Last post, Amie was still tangentially with us, still able to track you with her eyes, and had minimal responses.  She would give you little hand hugs, and would grunt at you if you were making her upset.

We’re now in coma-ville, with zero reponsiveness, starting late Wednesday night.

We were awoken early Thursday morning (1am-ish), with Amie making a noise (and I’m not being a jerk here, just for descriptive properties) that was exactly like the zombies on the Walking Dead.  We were absolutely sure that she had come to her end, and we were ready to meet it.

But she calmed down, and fell back asleep, and we did as well.  Hospice came in on Thursday morning, and we transitioned into IV morphine, every 2 hours, for pain control.  Yes.  Every 2 hours.  As you might be imagining right now, this swings us back around to the very first days of having Amie in our bedroom, with Shelley breastfeeding.  Only now, she’s taking care of her on the way out, instead of the way in.

So, we’re now in day 4 of coma-ville, and Shelley is giving her all the meds, as she has since diagnosis.  I offer to help, but to quote Shelley, “You’re pretty much worthless in the middle of the night, and you’re going to wake me up anyway, and I’ll be worried about Amie.”  So, this process is pretty much grinding her to bits.

Hospice came again today to deliver more morphine, as we were running out.  Kathy said that Amie could realistically go any second, but then again, she could last for a bunch of days.  We really have no idea.

I don’t think I can possibly explain how strange, and heartrending, this situation has been over the last 4 days. Amie lays on her mattress in our room.  She breathes, and then she stops.  Sometimes her pauses last for more than a couple minutes.  You say to yourself, “Ok, that was it.”  …and then she has this ripping gasp, and breathes again.  And keeps breathing.  For hours.  You convince yourself that everything is good, until she stops breathing again.  Rinse. Repeat.

It’s so surreal too.  She’s Amie.  But she’s just not moving, not her, not what I expect, and not responsive.  (If I was to say she was like furniture, that would be a really poopy comment, so I shall not make it.)

But through all of this, Shelley has been amazing.  She’s been sitting with Amie for hours and hours a day.  She cleans her, rocks her, hugs her, and is just present with her as much as possible.  Me?  I am doing my best.  But any time I spend with her is like getting beaten, emotionally.  It. Just. Hurts.  …and I know that’s about me, and not about Amie, but I am really doing my best.  Shelley is too.  We all are.

So.  That’s where we are, and that’s whats going on for the moment.  We’re in neutral, waiting to go to the next stage.

The thing that no one tells you, and you’re not supposed to talk about, is there is an upside to this end stage.  Your life has been hijacked for X months, and you’ve dedicated every cell, every moment, every thought to how to help make your daughter survive this.  But you lost.  Suck it up, and move along.  But you’re free to go home, lick your wounds, and figure out what comes next.

Except we can’t.  It’s like we’re stuck at baggage claim, waiting as the same suitcase goes round and round, and hoping that you’ll see yours poop out any second.  Yep.  We’re still waiting at Baggage Carousel #14.

Anya has decided that Amie's friends need to be watching over her.  This is Cardinal and Bianca.

Anya thought that having Amie hold some of the hearts was a good idea.  We've been having her hold hearts for a few days now, so a certain few of them have certified Amie juices on them.

Of course, Amie's constant companion has been Baby Jumping.  So. Good.

More than anything else, we've been holding her hand.
We didn't want to post other pictures, because that wasn't going to add to anyone else's positive experiences.  But Amie's hand is still warm, and maybe she can still gain some semblance of comfort from holding our hands.

OK, y’all.  Enough playing with words for me, and time to wade back in to my reality, instead of riffing on my thoughts.

NOT THAT POST...we're not there yet.

first things first:  We’re not there yet.

Amie’s still alive, at least physically.  I thought it best to do an update, as that’s where my brain was, and if I have the words, why not let them spill.

My last post was on Saturday, and talked about how Amie was slipping away.   Well, she’s gone, and yet she isn’t.  She’s physically alive, but no longer responding to us much.  Yesterday, she told Shelley she loved her twice, and she gave me a few minor squeezes with her left hand.  I like to call those ‘hand hugs’.  I’m good like that.  

Today, she hasn’t really responded much, and just has the glassy ‘1000 yard stare’, where we aren’t really sure how to meet her needs. As Shelley said today, she’s trapped between this space where she doesn’t want to be agitating Amie with her presence and wants to let her rest…but then again doesn’t know if Amie is lonely and scared, lying in our bedroom by herself.  So we vacillate between hovering and cuddling, with leaving her alone.  Lacking communication, there’s no real way to know, so she does a lot of both.

For me, this has been a really, really rough week.  Much harder for me than any other week, and that’s a strange thing.  It seems like weeks like brain surgery should be much harder….but after each of the surgeries, and after each round of chemo, or blood transfusion, she was just Amie.  She was funny, she cracked jokes, she wanted snuggles, she asked for things.  She was a vibrant kid who shined like a beacon to others.  

But all of that is gone.

She’s just a shell of herself, hanging on.  And that’s just so damned hard for me to deal with on a daily basis, that the kid who was an epically passionate kid has descended into this place where she’s literally on pause.

Part of the reason I am having such a hard time with all of this is that I’m aware that my postitive memories are being sublimated by these new ones, and I’m sickened by the thought that this is what I’ve got as the last slide in my slide show (Kids, slides were these things we used to display pictures before we had digital, and the internet.  Ask your parents.)  I know we’ve documented things incredibly well, but damn it. damn it. damn it, I hate that these are my last images that are going to sit in my mind, and it’s not like I can help that process.

ok.  I’m going to stop that now, as I don’t want to go any further down that lane.

Anya has been amazing through all of this, as many of you have been asking.  She's fallen into reading suddenly, and has been reading at least a book a day for the last 2 weeks.  She's destroying the Magic Tree House series (I think she's done the first 20 books already), as well as the Junie B. Jones series.  She's still doing art projects all over the place too.  

Her classroom is the Narwhal classroom at Charyl Stockwell Academy, and is just such a healing sanctuary for her (Narwhal fo lyfe! Right Ms. Churchill and Ms. Simon?)

Shelley had a great (pinterest?) idea of doing some watercolor painting on snow, and crafting really cool snowscapes.  This is part of what Anya worked on for hours and hours last night.  If I can get more pix from Shel, I'll share them in the next blog.  So, so creative that little girl.

Shelley has finished her mission with the hearts, and as you can imagine when it comes to Shelley and crafts, they are amazing.  

She finished over 2000 of them, and probably has some stress to her arm from repetitive motion in doing all of that. 

I wanted to finish up with a video of Shelley singing Jingle Bells to Amie the other day.  SO. GOOD.  I’m crying the entire time I’m capturing this, by the way.  Amie LOVES Jingle Bells.

Shelley really wanted to cuddle Amie, and feel her close, at least one more time, so we moved her into the girl's bedroom to do that.  For those of you not intimately aware of my house layout, this is the chair I bought for Shelley to nurse Anya in, as she was pregnant with Anya in the summer of 2007....so it's got a lot of memories.

As a last note, as I feel bad for just puking my emotions all over the internet with this, thanks for the consistently positive stream of messages and kindnesses that have been sent our way over the last weeks and months.  While we don’t respond to every one, we do read all of them.  We really appreciate it, and it’s always amazing knowing how many of you are with us on this grand (unwanted) adventure.