My great-aunt died tonight.

Or I guess, technically, not MY great-aunt. 

She was my dad's aunt, and since my dad is technically my step-dad, and since I have chosen to limit my interaction with him because he's an abusive narcissist, his side of the family has been pretty scarce in my life for a while.

It's probably not a thing, because they were never super involved in our lives in the first place, but it's definitely been noticeable.  Christmas cards, funerals and First Communions, basically - that's been our interaction in the last decade or so.  I think it actually has more to do with the fact that they don't spend time with him anymore either, because he's a generally miserable human being, and the byproduct has been that they don't spend any time with any of us.  Kind of sucks, but what are you going to do?


But back to the great-aunt: She was scarce, but not in a voluntary way.  She was 96 years old, and ill, and infirm, and after a fall a few years ago, afraid to leave her house, basically.  The house with stairs.  So i don't think I've seen her in person in about five plus years.

Which is too bad, because she was a really sweet person. 

Always kind to me, no matter what.  She wouldn't have given two shits that I choose not to really communicate with her nephew, because her husband was the same kind of guy, and I think she'd have probably cheered, if she'd known that some of us had gotten sick enough of his bullshit not to interact with him anymore. (Of course, there was also the 'what he says goes' element of her personality, so it's probably more 50/50 on which way that could have gone.)

But I kept in touch the only way I really could... through letters and cards.  Every new batch of pictures, I'd make a double or two and send them along to Auntie Lucy, with just a "Hey, thinking of you.  Thought you might to see how un-little the littles are getting." Something held over from living with Grandmother and watching her wait for the mail, or the phone to ring, or somebody to just pop in.  Even at her worst, when she wouldn't actually be so great during the visits, when there weren't any, she'd still be waiting for some.

It was certainly not difficult to drop Auntie Lucy a card every now and then and let her know she wasn't forgotten.  I even sent a card to her daughter once, because she was caring for her at home.  Because I've been in her position - or something close to it anyways - just saying "hey, I know this sucks.  It's so hard, and you're doing great even if it feels like you're messing it all up.  I'm around if you ever need to talk."  She never called, but I hope it made her feel a little bit less alone.  Because that's a lonely, rough road to walk.

So now, I have to figure out about wakes and a funeral.  And rearranging any doctor's appointments and whatever else needs to happen this week.  And try not to feel bad about not calling my dad to say I'm sorry she's gone. 

I am sorry she's gone, and I'm sorry I heard about it on goddamn Facebook first, but I'm not putting myself in a situation where I need to try and comfort him.  That's not my job, not anymore. 

And that feels shitty, to be honest: To say, I know my dad will be grieving, and I know that I'm not even going to do more than barely acknowledge it.  Because he'll be at the wakes and the funeral and everything else, and I'll have to see him and not make a scene, which means say "I'm so sorry," and not immediately run away when he tries to hug me or something. 

Boundaries are hard, even at the easiest of times.  They're definitely not going to be easy to hold right now, when everybody is hurting.  But I'm not opening anything even a centimeter more than I have to.

Because I deserve to be treated like an adult human with feelings, and he is incapable of that, so: boundaries are there to protect us both, honestly. Because as much as I'd like to vent my spleen, it would just wind up hurting the people around us - my sisters and such - so that's just going to stay safely spleened up, and I'm going to nod along and keep the walls strictly in place.


But I'm sad, tonight, because ... she was a nice lady, and she was always kind to me, and I know her daughters must be hurting, and even that he's hurting.  All of those things, and the fact that family is a mess, at all times, even the saddest. 

Deep breaths and strong boundaries.  Goals for the week. 

Here is something from my drafts folder, a piece I started working on the summer I was living with, and losing, my grandmother.  I've been thinking about her a lot lately, about how much she made me feel capable and loved, and how difficult it is for me to make LilGirl feel that way. How it doesn't come as naturally to me, as it must have to her, and how I wish she were around to talk me through it.  So, I've been wandering back and looking at some of the things I've written about her, and about our relationship.  Here is something I think that's worth posting... I don't know why I never finished it, then.  Probably it hurt too much. But, it's a tribute to her, so I want it out there, on this the fifth anniversary of her death.  

-  

She talks in her sleep; probably all sorts of things that she wants to say when she's awake, but doesn't dare.  "Shut up ~ I'll only listen to that for so long;"  "Who do you think is the boss around here, Mister?"  "Well, I'm smarter than that, which you'd knew if you listened to me at all."

But it's not just that: sometimes she opens her eyes and talks to people who aren't really there, except for her.  "What are you doing here?" she'll say, "Where have you been for so long?"

The other morning: "Is that Brian's chin? Do I recognize Brian's chin? I know it's you, because you have my chin, boy: why won't you talk to me?" Her voice is sweet, and cajoling; later it's hurt and quiet. 

Brian is my father, and he's been dead for 13 years.  He was not, contrary to her beliefs, 'necking in the living room the other night with some girl.'  At least not that I could see, and I had a pretty good view of things, since I was sitting on the couch she claimed he was sitting on.

"I'm glad that he has someone;" she reports back, "but did he have to ignore me?  What kind of evil have I done that my own child would pretend I didn't exist?"

When I suggest that he didn't hear her, she gives me a look that says she knows I am not that stupid, and I should know that she isn't that stupid either.  She's right: neither of us is that dumb, but what else can I say?  He's gone: If she saw him in the living room, it certainly wasn't the Brian that either of us used to know, and trying to explain about hallucinations to a person who is hallucinating all the time, is like trying to explain about breathing: you don't do it consciously, therefore you can't think about all the bits and pieces that go into it.  You don't think to yourself "Diaphragm in" before each breath, and she doesn't think to herself "this could possibly be fake" before she has a chat with the person she sees so clearly.

Don't try to convince her that she's hallucinating, all the experts/books/hospice workers agree: so now I've got a woman who's sure she's seen her dead son, and that he ignored her, that he hates her enough to not even say hello, when she is clearly ill and needs his company.

 Even my father, whose memory is pretty tarnished (if only in my own eyes) was never that bad.

She pines for a little boy (sometimes two little boys) who is/are missing, but she can't recall their names or their faces, only that they are her littlest boys and that someone has taken them from her.  My uncle is sometimes cast as the willing accomplice, other times the clueless and cold father, still other times the evil mastermind behind this whole plot: he doesn't know where the boy(s) are, and he doesn't seem concerned enough with finding them, in her opinion.

We don't know how to search for pretend boys, or how to explain that no one has absconded with any of her children, and so she longs for them, brings them up in every quiet moment, wonders if they are fed and clean and happy and "where could they be?"

"Safe and happy; sound and cared for", we promise, but we haven't got enough details for her. There could never be enough details to satisfy a mother who is looking for her missing children.  What is the address, the phone number, the house like?  Where does the father work, the mother shop, the school bus let off?  Do they ever get an extra cookie at night, does the mother wash their hair with that special lice shampoo, are we sure they don't do their homework while sitting in front of the television?

Obviously my worrying genes did not come from the ether.

But what a wonderful mother she must have been, back then, when her kids where little.  To still worry so now, all these years later, about whether or not someone is making sure the little one brushes his teeth because 'he hates to brush his teeth and will just wet the brush and pretend he's brushed, you know'.  To have in her head that there are little hearts out there that it's her job to protect, and to be un-moving in that conviction - it's both awesome and horrible all at the same time.

Because I can so clearly see her in that mom mode - living through the daily struggles of raising nine children, one with a very severe disability in a time where kids with disabilities were hidden from sight more often than not; in the projects of a city she never liked, close to in-laws who treated her like a slave, and far away from the life she lived with her Grams in New Jersey. 

And yet, she excelled - she knocked it out of the park, if you ask me, even if she made mistakes along the way.

But how horrible, to feel that connection, to feel that pull, and to be able to do nothing about it.  This is a feeling I have my own experiences with, that wanting of a child, that feeling that your child is out there somewhere, waiting for you, but you can't get to them.  Our realities are infinitely different - she's reliving the life she's already gone through maybe fifty or sixty years ago, now and I'm looking forward to the life I want in my future - but that pull, that pang and hollow feeling, yeah: I know it too well.
-

This summer with my grandmother is awful.  It's an endless wait for an end you'd do anything to avoid; like you're constantly slipping towards a great big hole, and you know you're going to go into it face first, eventually, but the fall is taking an eternity and you can't figure out where to put your hands out to stop yourself, so you just keep slipping, closer and closer to the big fall.

She has days where she's fine, mostly, and those days of just sleeping for hours and eating and watching Judge Judy, well they're almost normal, except you can still feel the slide happening, deep down, under your feet, under your skin, in your heart.  It's there in the way that she asks what time it is, again, and you can tell her internal clock has run hours ahead of the actual time, and she's lost again.  The way she tilts to the side while we're watching the news, like a curious puppy who can't quite make out what he's looking at.  The way it takes her 15 minutes to get food onto her fork, into her mouth, chewed and into her stomach: It takes her so much energy to eat, that you want her to eat only the highest calorie foods, to make it worthwhile.  All those little steps, little bumps, all part of the slipping.

And then there's days where she's never here: she eats, but she doesn't taste it.  She talks, but her eyes are empty when she looks at you.  "Where's the mail?" and "What's the time?" over and over again, and they have as little meaning to her as they would to a two year old - all she knows is that those things might happen, and it might mean that something would be different than it is now.  And god, does she want things to be different than they are now.

I can't interest her in anything: the plots of television shows confuse her, peppered with commercials that annoy her.  Movies take too long, and have too many people talking at once.  Books are too heavy for her sore arm, too tiny for her eyes, too confusing if you read them to her.  Puzzles are not her thing, nor are cards - "I used to get berated for playing a card in bridge; your uncle" (my great uncle, actually) "would scold me so for not knowing what everyone else had played." And music is, for the most part, out: I turned on a Pandora station with her favorite song, and she took out her hearing aids and went to sleep.

We talk about a long time ago, but I never know how much of it is true anymore - was there really a woman named Bridgey, who lived above them in the Towers and would shout at Grandmother's misbehaving children as easily as she'd take her own to task?  Did my grandfather lace up his Hessian boots, or was it her father, her grandfather, one of her brothers?

We talk about yesterday, today and tomorrow - who's coming and what's on the schedule, and "does your list make you the boss of everybody?" About the weddings coming up, and how they're not today, or tomorrow, or even next week: "I've missed the bride" she'll tell me at least once a week - but no, Grandmother, it's alright: The wedding isn't until the end of September.

 "I need silver shoes," she shouted as she woke up this morning, before even hello, "add it to your list and we'll go shopping for some on the next nice day."

Never mind that we don't go shopping - that the doctor's appointment she went to last week wiped her out so badly her skin was grey - or that her feet are two different sizes due to the swelling.

 "Silver shoes to match my dress.  And a petticoat, with lace."

The West Wing is never wrong.

There's this episode of The West Wing (see below), where President Bartlet says to Josh Lyman "I want to be the guy. You want to be the guy the guy counts on," and I think it is the piece of fictional dialogue I have most related to in my entire life.

Because that's me: I want to be the guy (or girl, in this instance) that people count on.

And I think I am, to a pretty large extent.

But the thing about being that guy/girl, is that it's fucking hard. And lonely. Frustrating. Anxiety-producing. And, for me, at least, it's really really difficult to stay on the side of the line that equates with uber-dependability, without crossing into total, unselfishly-selfish martyrdom. (Because, honestly, is there anything that winds up being more selfish than a person who can't think about themselves in any situation and starts feeling taken advantage of by everyone in their life? Probably not.)

So, it's a difficult line to toe, and I definitely feel like I have fallen, head first, over it in my current situation, which has created this atmosphere where I find nearly everything my brother does upsetting, and I can't figure out if I'm overreacting or not. I feel like all of the sudden I'm realizing that everyone else has been right for the past year and a half; that he is definitely taking advantage of me, and that I'm enabling all sorts of inappropriate behavior on his part. That I've somehow wound up in this relationship with him where I can't be honest because I feel like he takes offense so easily, and the kids are the ones who wind up getting hurt.

For examples - he cancelled my nephew's birthday party the night before because his other aunt (my deceased sister-in-law's sister) overstepped and tried to change the times like it was her right. I get that she overstepped, but he completely overreacted, threw a tantrum and we all just had to go along with it, because they're his kids, and he is in charge of them. He overreacts about 95% of things - in a way that I find aggressive and overwhelming, because it reminds me so much of our dads, and their bad behavior, and I usually back down, because it's the kids who are in the middle. I wind up having to act as interpreter for him to everybody - "he meant to say" or "he's really hurt about" or "he's just tired tonight". So many fucking excuses that I heard as a kid and told myself I would never tell, and here I am slinging them like I'm reciting back my ABC's.

I know he's hurting, and I know he's grieving, but I also know that he's kind of an asshole, and, under any other circumstances, I would tell him so. I call him out when it's stuff with the kids - or at least try to, I'm ashamed to say how often I find myself retreating into the intimated girl I used to be when faced with slamming doors and stomping feet - but let everything else go with a "I am just to tired to fight this fight today" mentality. I just don't know why everything has to be a fight, why everything has to be so tense all the time. 

His sense of responsibility and mine are completely different: I have been putting those kids first - before  my own health, even - since they were born. Not full-time, until now, but definitely in a way that has been unhealthy for me, even. He thinks he has been doing the same thing, but, it's different.  He thinks working and feeding them and not exploding every time he's pissed off about something is something that should earn him kudos and cookies.  I think you're doing the bare minimum that is required of you as a father, and you just need to get on with it and act like a grown up.

There was a lot of talk, after she first passed, about letting him sink or swim on his own.  Just... going home and letting them all put the pieces back together as best they could. I knew then that that just could not happen, because he was as checked out as he could possibly be, while still being physically present. And those two kids needed more than a father-sized shape walking around, especially with the big gaping mother-sized hole they both will always have. An auntie who is trying her best-sized block isn't good enough: it's never going to be. But if it's what we've got to work with, then I can't take that away from them. I can't imagine leaving, of my own free will.  I can easily imagine him making me leave by being so much of an asshole that I can't deal with him anymore without losing my mind. (Because I lived with one of those already, and - as hard as I try not to draw comparisons, they are there to be drawn.)

He's not always an asshole. He can be sweet.  He plays catch with them sometimes, or surprises them by going out for breakfast. He lets me buy whatever the hell I think we need grocery shopping online, even if I have to order every other day. He doesn't care about paying for things, except when he does, and make a big deal out of those things.  He worries about me, when I'm extra/normal people on top of chronic sick, even if he doesn't actually do more so I can do less.  He has said the words "You don't need to contribute more than your presence to stay here - I don't expect more from you than what you do." But I also don't feel like he gets what I do, the extent of it or the import of it, at all. 

I guess I just feel really underappreciated right now, since he just took a night off the other night - just went out and didn't come home, and told me at like 3:30 that that's what he was doing, and didn't even tell the kids, and left me to deal with the fallout, and then got pissed the next morning when I told him there was fallout about it from the kids.  And then the kids were all fine when he was here, and he didn't have to deal with any of their anxiety at him not being home or their anger that they didn't know, or their terrible, horrible, no-good, very bad days, and I did.  I took care of them, and I keep taking care of them, and I love it, because I love them, but.... it is so hard. And he just doesn't see.  He doesn't worry about Lil Girl's back, or NephTwo's broken heart, or MCAS or the stupid fish that hides in its filing cabinet, or why nobody can fill up the whole goddamn dishwasher instead of 9/10ths of it, or if that one's wearing the same dirty shirt she wore three days in a row, or if this one is coming home late and is all giggly, and now I have to google what the signs of pot use in teenagers are, even though I didn't smell it, but I have a stuffy nose, so let's just double check.

 He loves these kids as hard as he's ever loved anybody else, I KNOW it, I can SEE it. But he SUCKS at making them feel it. At showing it in any meaningful, past this one specific moment, kind of way. He worries about them too, but I know it's not the same way I do. I worry about them first, and I don't think he does, because he couldn't act the way he does if he was thinking of them. My grandmother always said fathers were like that, that mother's hearts were different, and fathers never really understood, but I hope that's a piece of generational sexism that doesn't prove true.  I mean, no: they are different.  But I don't think that means father's can't put their kids first.  I think he may even believe that's what he's doing. I just don't know how to get him to see that his behavior is as harmful as it is. To all of us.

And I really, really, don't want those kids to come up to me, 20 years from now and say: Why couldn't you just tell him he was being such a jerk, why did the house have to feel like that? Because it's what I sometimes want to say to my mum, still.  And I know these issues predate SisterNc's death, because their relationship was rocky and had a lot of the problems I'm banging my head against right now, but it's different, bc he's my brother, and they're not technically my kids, and I'm supposed to be helping.

That's the real problem - I'm supposed to be helping, and I just don't know how to do it right now, so I feel like shit. 

Probably I'll just start rewatching The West Wing.  That seems like a good idea.

“In my closest circle of friends — you know the ones, the ones who are the family you choose instead of the one you are assigned — when someone is having a difficult time, we will remind each other that there are as many paths as there are people, and that while none of us can walk another’s path for them, we can all raise our lanterns a little higher, and let some light spill over to make the going less difficult and scary and lonely. ”Commenter, Teaspoon, via Kate Harding's Blog

Hey guys!  I know it's been forever (only five months, but who's counting?), but can we just agree to put aside the awkward part where I say how sorry I am, and you all read it and forgive me anyways?  Agreed? Good.

I can't make any promises about writing going forward, as things here are even less settled than they were the last time we spoke, but I miss this.  I miss you, and our weird conversations, and having a place that nobody I know in real life ever comes.  I miss the words - so much - and I think, just maybe, that my brain may be turning that light bulb back on a bit, which is a relief, let me tell you. (I don't think you ever get over the fear that the words just... won't come back this time.  At least, I don't think it's a fear I'll ever get over.) 

So anyways ~ how's about a quick update?  Next week, my brother, my mother, his kids, his sister-in-law and I are off for a quick jaunt to the Happiest Place on Earth, and it feels so incongruous to where everybody's actual feelings are that it may just be the most ironic trip ever.  -- Excepting the nine-year-old, who has a countdown on, and can't hold any non-Disney related conversations, and it's adorable and annoying in (nearly) equal measures.  -- We're nearing the anniversary of their mother's death, and it's definitely being felt: there's so many other anniversaries on the way to that one - her brain surgery date, her last hospital admittance, the day I came to stay 'for a bit' - and each one is a little dig in someone's heart, a little pinch they can't seem to ignore. 

My brother's grief continues to be overwhelming.  He's made some positive steps since last year, but as the anniversary approaches, I can feel a lot of them sliding away.  His mood vaciliates between pissed off, checked out, and maudlin, and the kids and I seem to often be at the mercy of them - it's hard to help a kid through their tough day, when their dad is upstairs slamming doors and ignoring people.  I'm cutting him as much slack as I can, because I DO get that some days are harder than others, but... tantrums in front of your children are a line I am dragging him back across, some days to both of our peril.  The thing is, I can see how hard he tries - on the days he's trying - and I guess I know him better than anyone else does, because I can SEE how much he's hurting, all the time, and I can feel what an accomplishment it is that he even gets out of bed most days.  And I wish he had the space for his grief and the time for his grieving... that's what I'm attempting to do here, anyways, is make it a little bit easier on everybody else, but... when you have kids? You just don't have the luxury of grieving the way you want to.

He can't afford to bury himself in a hole, or hide himself in his room.  And neither can these two kids. 

Both of whom are doing exceptionally well - with various issues here and there: The little one knows a lot more about anxiety now then I wish she'd ever have to know, and the older one walks around some days as if it's his responsibility to... do everything.  Which, at 15, I do not want him to feel, but I'm unsure how to prevent it.  Everybody's got stuff they're working on/out, and November 10th is fast approaching. 

So why the Disney, you might be wondering?  Well, a cousin is getting married in Florida, which normally, would just require us to send a card.  But between my brother's regrets that he and Nancy didn't just spring for the Disney vacation they might have taken a few years ago, and the 9-yr-old's puppy dog eyes, my brother decided that they had to go.  So: from Tues - Saturday, we'll be hitting up the parks, and attempting to draw out as much of the happy when can for some kids who could desperately use it.  (Although the 15 yr-old is not onboard our happy train - AT ALL - he's upset about missing school, and thinks he's too old for Disney (ha!) and all sorts of other cliches about sullen teenagers that get dragged off on their family's vacations.  I may as well be living in an 80's movie, honestly. )

This is going to be very difficult, spoon-wise, and health-wise for me, but they need me, so off we go.  Wish us luck.

In other sad news, SisterS's mom passed away - suddenly, of a heart attack - last week.  She's understandably shaken, as is my Oldest Nephew, and my heart breaks that I can't be more there for THEM right now.  Not that there's anything you can say when your mom dies (as I have learned quite extensively over the past year), but not even being able to just sit at her table and let her cry or rant or whatever she wants to do is making me feel extremely guilty.  I am doing what I can by text message, and I have to hope that it will be enough.  That I can help, in any small way.

Two of my other sisters have relocated over the summer - SisterCh to her mother-in-law's basement, which is not optimal, as you may have guessed, and SisterK to a far superior apartment out in Berkley, California, while her beau does some graduate work & she works for a literacy non-profit. 

And our best news of all is that SisterJ and her husband are expecting a new little bundle of joy to add to our hoard!  (Let's be honest: we all know if I was a dragon my horde would consist exclusively of books and babies.  Like: for real.)  The baby will hopefully making his arrival in February, which means a baby shower is in the works for the next little while as well. 

So, I'm apparently full up and bursting with news guys - a real mix of who knows what. 

But the light bulb - while still slightly dimmer than one of those energy efficient ones - has clicked back on.  So hopefully, we'll all be around when it hits full strength. 


 Thanks for hanging in, you guys. 

Literally a 5 tissue post. You've been warned. (YMMV)

There's a lot of things I'm in charge of here that I could not care less about: Making sure NLYNephew (now 14.11 yrs old, thank you very much) takes out the trash is one of these responsibilities.  I hate Thursdays, because it is a constant refrain, from the time he comes home after school until he finally takes the trash out (tonight he did it about 10 minutes ago, a little bit after 9 pm). Not from me - I really only remind him the once, or - if I feel like he's closing up shop for the night and it has slipped his mind - maybe right before he goes to bed (which always earns me a huge groan, no question). He knows it's trash night; his dad knows it's trash night; EVERYBODY knows it's trash night.  Why it has to be a big battle every week is a mystery to me, but somehow it always is.


--

I don't know why I started this post that way.  I really just wanted to say that sometimes things here are still really freaking hard.  Hard in ways I didn't expect - I really miss the jokey, sweet relationship that my nephew and I had before I became the one he has to check with to see if he can run to Dunkin Donuts with his friends after school.  Before I became the one who puts corn on his plate and expects him to eat it. 

Before I became the woman-shaped-person who's taking up space next to the giant gaping hole his mother left behind.

--

Do you ever write other people's stories in your head and try to figure out how they'd sound? Especially ones that include you? I've been doing that a lot lately, trying to look forward and backwards at the same time for the kids so suddenly in my charge.  Trying to use our experiences as predictors for theirs, when I know that won't work, but I don't have any other grand ideas.  Trying to see into the future and prevent their damaged hearts from being crushed, as if by magic.

 I wonder, sometimes, what role they've casted me in, or will cast me in, in their eventual memories.

  Is that a normal thing to wonder? I don't even know.

 But I can't help it: sometimes snippets of things pop into my head and I wonder: Is that the truth of how they see me now? Is that the story playing in their head?

 Recently, I had this moment of - I don't know - disconnect and not deja vu but an equally awkward "how is this my real life?" kind of feeling that left me off balance. And when my niece and her cousin walked in at half past eight, tumbling in all loudness and loopy from their grandparents' house down the road, I had this piece of narration that just popped into my head, as if I were seeing the scene from the outside.


"We were a few minutes late, and I could tell by the look on Auntie's face that she had noticed. She always noticed things like that, especially when you hoped she wouldn't. She was a constant looming presence now, with Mum gone, and seeing her there - usually spread across the couch with her laptop at a right angle, or twisted up as best she could to squeeze into our one, lone armchair: three pillows, a heating pad and the laptop's glow on her face - gave me the jolt every time I walked through the door. It wasn't her fault, really, but she wouldn't have been camped out at our house otherwise, and we all knew it. If Mum were around, she'd be back at Grammy's and our twice monthly sleepovers would still be something to look forward to, a nice change of pace where we played games all day and ate tacos. But here she was, and here Mum wasn't, and just like a switch, I remembered it all over again."



I realize the scene itself isn't particularly charitable to me - although I don't feel it's unjustly harsh either - it's just that sometimes I can see it on their faces, the re-realization, and I h a t e being the impetus for that, the thing that highlights their loss all over again.
 --


 I'm having a rough couple of days here - It's not just me: there's a lot going on in our family that's good and bad and horrible and up-heaving and life-altering.  And I feel a little lost, sitting here on this couch, with my charges in bed - one of them upset with me because I'm making him do chores, the other listening to her TV because she finds the quiet unnerving, even all these months later. My brother, snoring away upstairs as he's been since right after supper, and he'll probably be awake at three in the morning, and off to work, and another day will start all over again.

 And I wish that the end of the day felt like I'd accomplished something more than surviving.  I wish that I was able to make them happier, or healing, or at least not argue with them about stupid shit that neither of us really cares about except Oh My God Why Do You Have To Act Like A Teenager Right Now??? Could You Not Be Jerk To Me For 10 Minutes, Please???

And the thing is, my nephew is a sweetheart, and I KNOW that. And most of the time, he continues to be that - he's a good kid, with a good heart, and he's doing so great and trying so hard.  And neither of us really understands my role here or our new boundaries and ... it's fucking hard.  It's hard for me, and I'm a grown-up woman, who lost her sister-in-law and misses her, but who won't ever understand what it's like to be 14 and have your mom taken away from you so brutally. 

I know he doesn't blame me, but he kind of also does.

Because I moved in when she got sicker, and she just never got better, and I just never left, and I'm the one who told him it was never going to get better, and I'm the one who made him understand that that was her last day and he'd regret it if he didn't say goodbye, and I'm the one who's STILL HERE and his mom is NOT.  And sure, he's 14 and he's smart enough to know (in his brain) that that doesn't make sense, that I wasn't a cause for that effect, but I also know it doesn't feel wrong, because sometimes he looks at me like he hates me, and it breaks every little piece of my heart.

And I can't show it, because I know that grief doesn't make sense, and I know that he doesn't like feeling it any more than I like seeing it, but, god, what I'd give to go back to a time when looking at me didn't hurt him.

 I know he loves me, and I hope - with all my heart - that this is one of those things that time can fix - because I've loved this boy with my whole heart since the day he was born, and yes: I'm the one who told him his mom was gone, but I'm also the one who snuggled with him through every nap-time and sick day; the one who taught him about the joy of pretzels dipped in fluff; the one who showed him the miracle of bubbles; Who gave him sink baths and solar systems and learned the name of every maritime disaster in the last 100 years; the one he used to call when his parents were fighting and he was frightened. 

I know, eventually, he'll remember those things too, but right now, on a night when he looks at me and sees all that he's missing, what I wouldn't give to trade places with his mum, to let him have her back, to let her fight with him over the damned trash.


---
Well, now that I've bawled my way through that... I gotta go turn on the dishwasher, and lock us all up safe for the night.  Hope whoever is reading, wherever you are, that you're safe and sound tonight too. 

 

 

 

 

 

 

 

2:41 AM, 10th November, 2014

If you follow me on Twitter, you know that my sister-in-law passed away on November 10th.  She died peacefully - I saw her breathe her last breath, open her eyes, and then, just... never take another one, from the same exact chair I am sitting in to write this post, 12 days later.

She fought so diligently and so hard, for so long, even though she really only had a short time. Her cancer proved to be super-aggressive, and ... towards the end, there wasn't much we could do for her but keep her comfortable, and wait.

That last Sunday was horrible, with last rites, and a house full of family - hers and ours, and theirs - and her being unresponsive by dinnertime. 

That morning, early - like 4:30 in the morning, early - I smelled the sharp scent of urine, and had to feel to see if she'd wet the bed (mostly because, at this point, she was sweating through her clothes so much that she was almost always damp). It was her first bout of incontinence, and - although I knew it boded ill, I did not realize how quickly things would go downhill from there.  I had to wake my brother up to help me change the sheets, and then she took her pain meds and went back to sleep.

A few hours later, she'd woken up in extreme pain, couldn't seem to settle at all. Just kept shifting from one end of the bed to the next, every 5 minutes or so.  She took more pain meds, but was just super uncomfortable and couldn't find a spot that worked for her. She told me her pain was 10/10 and she was crying, almost incoherent.

I woke my brother up again - from the couch this time - and he called the hospice nurse. Who came and different meds were administered, and we - the nurse and I resettled her on the couch, to try to help her find a way to sit with less pain while she waited for the meds to kick in.

It was during this transition that she was last semi-lucid, at least in my presence, and as I sat her down on the couch after yet another 'I'm so uncomfortable, I just need to move' attempt on her part (wordless, though - that's just the impression I got), she leaned over and gave me a kiss on the forehead.

I don't know if she knew who I was then. I don't know if she meant that for me, and I feel guilty that I was the person who got her last kiss. I haven't told anyone in our family that she did it, I don't think (although ... things were pretty intense there for a while last week, so I may have told one of my sisters without thinking about it), but it felt like a "Thank you" and a blessing and - now, knowing it was her last, and she didn't get to give it to my brother or their kids, or even her sister who showed up moments later? Almost a torment.  I still feel gifted by it, always will, but it hurts my heart so much that she's not here to give out anymore.

Shortly after that, her sister came, a family friend who is an actual nurse and knows what the hell she is doing (as opposed to me, who just spent weeks caring for someone I loved and watching them slip away, AGAIN, but was just doing my best and making it up as I went along, and following directions) also arrived, and I moved into a much more peripheral role.

She continued to get worse and worse, becoming unresponsive to everything besides pain, relatively quickly (within a few hours). I let my brother and her sister, and the nurses, be in charge of what they could be in charge of, and I made sure the kids got fed and my parents & sisters got called, and that her sister knew she needed to call her parents and brothers as well. I learned all about the new, liquid meds from the hospice nurse, and gave doses of morphine and ativan and hyamax as the day wore on.

I called the priest, and the funeral home, and the priest again. (And we all know how much I hate making phone calls). We cried, and waited, and held hands, and helped the kids. Gave them a chance to say goodbye, then let the little one curl up into my lap and sob when she walked away. Watched her big brother comfort my big brother as they both sat in tears by my sister-in-law, SisterNc's side.

Watched as her nieces and nephews filtered in and out. Approved as my sister and her husband ordered a regiment's worth of pizzas and made sure everybody got fed. Comforted and cried, and just sat around rubbing smooth patterns into backs, and backs of hands, and anywhere I could reach, really.

Later, her parents and brothers, and my dad and sisters, all cleared out.  We were down to my mom, her sister, the family friend who is a nurse, my brother and I, and a friend who had known them both since the moment they met, some 16 years ago.  Around midnight, it seemed to get dramatically worse, and the med levels increased and the hospice nurse came out again and told us "a matter of hours."

About 2:30, my brother and her sister both decide to go upstairs to get some rest. The nurse-friend, the work-friend and I are sitting in the living room, my mom has snuck outside to get a cigarette.

A quick text from my brother asking me to bump the heat up because it's freezing upstairs, @ 2:37. As I settle back into my chair, I glance over at Nancy, see her breathing is very strange, but I check the book and it is nowhere near time for more meds. So I sit down, and the work friend says to me that she gets an inspirational text every day on her cell phone and starts to read it to me. It says something about "new pathways and being open to new challenges," And that's when I see SisterNc's eyes open, and I notice that she hasn't taken her next breath.

The nurse-friend has noticed too, and is getting up, checking on her, fussing with her. We both know - I can see she knows - that there is no reason to fuss.

It is 2:41 am, on Monday, November the 10th, 2014, and my only sister-in-law, the beloved wife of my brother and mother to two of my favorite people in the entire world, the only sister I ever made instead of came with, has died.

I send my brother a text that reads "you need to come back down, honey", and he must know. He wakes her sister up and doesn't bomb down the stairs. Takes each step, heavily, I can hear it even now. They are both crying as soon as they see us. As soon as they see her.

My mother comes in from the kitchen, seeing us, and begins crying too.

And that was her last day, her last actions, her last minutes, to the best of my recollection. I do not want that kind of thing to be forgotten, even if I am the only one who remembers it.

The past twelve days have been torturous for my brother, and difficult for his children, and so heartbreaking for all of us. I don't know how to help any more than I am, but I fear that it will not be enough.

I am - we all are - doing the best we can.

But it's hard to keep swimming with a broken heart, and hard to hold the pieces together while you wait for even the tiniest bit of it to heal.

My Space; My Experiences

So, I know I've been largely absent from here for a bit. I'm rethinking my whole blog thing, lately, since it's been so semi-abandoned, but for now, I'm just going to jump right back in as if we've only stopped talking briefly.

Because I've somehow, yet again, found myself in a dim room, in the early morning hours, listening  to the rumble, rumble, whoosh of an oxygen machine and watching the chest of someone I love (as discreetly as possible, of course) to make sure it's still rising up and down. I'm somehow, once more, a keeper of someone else's med and meal schedules, daily logs, VNA appointments, doctors binder, and various other illness-related pieces of flotsam and jetsam.  I'm struck, one more time, by how unfair life can be; by how easy/hard it is to pause my own life and help grip the ragged edges of someone else's; by how often I want to hug people; by how excruciating it is to feel both completely useless and optimistically helpful at the same time. By how much of my own illnesses I can cover up, and how much just won't let me even try. By how much I would give for just a couple days off, for all of us.

At least this time, I can be thankful that the couch I'm 'sleeping' on is brand new; that my brother and I somehow managed to make it through all the stages in our youth that would have insured our mutual destruction; that some days spaghetti and meatballs is the meal you've been waiting three weeks to watch somebody eat.

My sister-in-law's cancer came back.

Viciously, and without warning. It came back; it attacked; it took over a lot of places it had no business being; and (in a day I hope is much farther away than it feels right this minute) it's going to take her away from us.

And this is Not About Me.

And I think that's partially why I haven't been writing here: because this blog is about me, and my feelings about things that are going on, and about what kind of mess my brain has conjured up for us on any particular day. But all the stuff that's happening right now, is decidedly Not. About. Me., and so that left it pretty muddled in my mind; pretty difficult to think about, talk about, much less write about.

But I'm on my second week of overnights here, and while today had a bright spot that many of our other recent days have sadly lacked, I feel like if I don't give myself permission to use my words SOMEWHERE, it's going to be bad news for all of us, so... here I am.

Talking about what's not mine, but also what is.

Like memories - still too fresh - of having done this so many times before, and the heavy feeling that settles into my shoulders at the thought of ... well anything, to be quite honest. Staying. Leaving. Helping. Hurting. Waking her up to take her meds or letting her sleep through a dose. Reprimanding her daughter for being late, because I know rules are important, especially now, even though she looks as though I broke her heart for doing so. The taste in my mouth that's dry and bitter and coppery and won't go away.

Of the kiddos I sit here watching - one of them trying to pretend he's not constantly watching his mom out of the corner of his own eyes, as if to reassure himself that she's still there. Who's stressing out about football practice and hockey games and missing CCD and getting - God Forbid! - Bs this semester (his first in high school) in subjects he knows he could master if he Just Tried Harder!!! Never mind that his body is constantly coiled and he tenses up and quiets down when the grown-ups are talking about medical stuff, in the hopes of learning something he thinks might be being withheld from him. As if I can't see how sad he is already, and how hopeful, still. As if I could pick which one of those hurts most.

Or his sister, as she sits and reads her required reading aloud to us each night (Ramona Quimby FTW!), snuggled as close as possible to someone, ANYone, some nights; other nights tucking herself into the lonely corner of the sofa and evil eye-ing off all trespassers into her personal space. Who pouts more and preens more and pretends more and escapes more and seems so god damn confused about everything right now that I just want to secret her off to an abandoned island where she could be safe, and free, and P L A Y without being shhh-ed for making too much noise or reminded, by my mere presence, that the rules are different right now, and she doesn't know how they work. How anything works, because mama is sick and daddy is a mess and all of these other people are 'helping' and she doesn't know why.

Of their mother, the only bonus sister I'm ever going to get, (I assume: my single sisters seem to be set in their straight orientations, but you never know), who sometimes pisses me off and mostly just fit in as best she could/can amidst our crowd of misfits, troublemakers and complications. Who sleeps away another day, and laments her lack of energy, focus, clearheadedness, ability to participate in anything at all, even as she's aware that the meds that are making her that way are supposed to give her more time to stick around and participate in the 'long run.' (and oh, how that phrase chafes and means new things now.)

Of their dad, my original only big brother, who has all the high emotions that run in our family, but none of the healthier release valves some of us have been able to find. So he chaws his tobacco, and I watch the pill bottles closely. He isolates himself in the cellar, and I make sure to send a kid down every now and then to fetch him, so I can feed him up and send him to bed. But he surprises me. He says more open, honest things - to her, to me, to the lovely nurse who helped us on a day when we were sure things were taking a tragic turn - in the short time I've been here than I've probably heard him say in his entire life. Who walks around like he's got an open wound already, even though his wife is still with him. Even though.

Who asked for my help and somehow thought I'd be able to say no.

So here we are - heading into another NaNoBloMo/NaNoWriMo, I might add - and I'm giving myself permission: no REQUIRING myself to stop just letting it soak my brain and hope it'll get better. I'm using my words, about a situation that sucks and is scary, and is too big and huge and makes me want to build a pillow fort (or, even better, just move into a previously constructed pillow fort, with no muss or fuss) in order to hide away from all of this "being a grown-up" bullshit.

I'm determined to be helpful, and if what I can do is sit on the couch and play guard dog so my brother, who really should be sleeping, does a 1am-10am shift to make up for the fact that he has to miss so many days of actually working; than that's what I'm going to do.

And that's were we are, on the eve of this November, on this scariest of nights. Wishing I was five again, when the scariest thing in my life was that creepy as hell mask my dad bought and then decided to jump scare us all (as many time as possible, of course). But confident that even though the illness is Not Mine, and the sum total is Not About Me, I can still have this space to talk about the things that are happening, because the experiences, those are mine. The feelings - the fear, the frustration, the anger, the trepidation, the wanting to, NEEDING to help - those are Mine.

And so is this space, so I'm bringing them together again. As much as I can.

    My Grandmother's birthday is this month.  This week now.  Sometimes, when someone dies, the anniversary of their birth or death just sneaks up on you, or (if you're lucky) right by you. As someone who's lost (I was going to say a 'fair' number, but 'fair' doesn't enter into the conversation when you're talking about death, so I'll stick with) more than one person I loved, I've lived through loss long enough to know that it (mostly) does fade enough so that some years a birthday or death day will come and all I'll feel is that tug of longing, that twinge of regret that I no longer have that person in my daily life.
    But firsts?  Firsts of anything are ripe old bitches - and I know that I have been not been doing particularly well with my grieving process in the first place, this time around.
    Mostly I feel like everybody else moved on, and I'm still stuck in last summer, holding the hands of a woman whose face I'm trying to carve into my memory as I watch my face fade from hers. 
   I can't explain how powerfully & profoundly that experience has changed me, and yet - nothing else has changed! She's still not here, and I still am: stuck in my bed, in this house, in this life that I don't want or recognize, but lacking the ideas, strength (physically & mentally), and just plain energy to do anything about it. 
    And now her birthday is coming up, and I'm hyper-aware of it.  As in, I usually have no idea what the actual date is, unless I have a doctor's appointment in the near future, but ever since July 1, the calendar has been mocking me.  It's been a constant, in my face, reminder that JULY IS HER BIRTHDAY and HER BIRTHDAY IS COMING, PREPARE TO CRY. The date has been getting closer and closer, and my mood has been getting darker and darker. 
    I think about how, for most people, Friday will have no meaning at all... even in our family, Grandmother's actual birth date was always one of those "Is it the 17th form 1919 or the 19th from 1917 or maybe it's the 21st?" kind of deals. (My family is bad at dates. Also time. Also lots of other things that matter to me a lot, which you can see would be kind of frustrating.) And for me, Friday is a huge, looming, taunting thing that I'm trying desperately to avoid, knowing it's going to come and suffocate me anyways. 
    Because, as I said, I'm no amateur at this whole grieving thing (even if it feels like I am, every. single. time.), I've done my best to keep occupied, knowing that distraction is one of my best coping skills.  I've tried making plans for the actual date - my best friend is in New York, all my siblings are working, Mom says she is up for anything, but lately it's all she can do to not melt into a puddle every time she ventures out into the hot - and I think I've wrangled myself into a kiddo sleepover, finally, but - like everything else this summer - it's complicated too.  No Longer Youngest Nephew (soon to be by the power of two, come to think of it) is 13 now, and .... while he's up for games and stuff, it's as if when his voice cracked, his preferences for spending time with me did also. It's not that he doesn't love me, or that we can't still have a good time together every now and then, but he'd rather be with aunts who drive cars to New Hampshire where he can hang out with his older cousins, or aunts and uncles who let him watch R rated movies and take him to hockey games.  The largely sedentary Auntie NTE is no longer first (or even, honestly, second or third- which would be sitting at home playing video games) choice and, wow does that sting.
    Still, I'll be glad to have them here on Friday, to give me something other than my own gloom to focus on. And - even though I know it is, in part, because of the overwhelming upcoming birthday - Holy Jupiter has this month (/season/past 9 months) been full of gloom for me. Let me just mention this one other thing, real quick, that kind of explains why I've been avoiding this space and writing in general for the last little (ok long) while:
     Along with the gloom, which I recognize as both a normal part of grieving and a truly hideous part of grief, I've also been experiencing something a little bit more troubling, because it dabbles its feet in the "how close are we to the edge of depression here, really" pond, and that's terrifying to me.  It's something that has been growing since before she died, when I felt like it was just me and UJ in the trenches and everybody else was sending care packages every now and then, but had no idea what it was truly like to be waging war against a disease that made you a stranger to the person you loved so much.  And it blossomed once we lost her, and then my sister & her husband were forced to move out, and my mom's depression spiralled downwards, and everybody I knew was fighting their own ridiculously hard battle, and asking for my help, sure, but you can't tell people how alone you feel when they're crying on your shoulder.  And somehow, even though I've tried reaching out, I am left, once again, feeling forgotten and outlived.
     Which is not the kind of thing you can say to your pregnant baby sister, or your other baby sister who moved to the middle of nowhere again, or your other baby sister who you're so fucking proud of you could burst, but miss more than air sometimes - but it's how I feel.  And even though I know that my family is not, in fact, "leaving me behind" (and also that it's not their responsibility to make me feel better about feeling left out, really), but it's kind of hard not to feel that way when you've experienced it so often, just by virtue of being the sick one. First with my high school friends, then when all my college friends started getting jobs and getting married, then when they all had their first round of kids, then their second (and some are now on their third), and this may sound weird, and horrible and selfish, but it recently just occurred to me that this is the first time that I have been the only one living at home, and it makes me feel (ancient and weak and useless and pathetic) a whole boatload of things that I know I am not, but still am feeling. 

And, oh my god, so fucking lonely.
   
   Which is why tumblr has been great, because: So many spoonies! and some of them are old like me! (Because holy jebus, the teenagers.  Talk about feeling ancient.) So, less lonely: here I come.  And a lot of them feel left behind too.  So I don't feel so ridiculous about both loving the sight of my sister's gorgeous baby bump (Seriously? She's one of those adorable pregnant people who glow so much they nearly sparkle.) and still being so sad that it isn't me.  One of my other sisters recently lost a ton of weight by eating healthy and doing an exercise program, and I was so glad for her, and at the same time, I kind of wanted to punch her in the face. Because I've eaten nothing but cardboard for a year, and I've eaten 3/4 fruits and vegetables for the last 2 years, and I still can't stand up without wanting to die.  I miss moving my body and feeling good about it and not resenting everything it took away from me.  I miss trusting it.  (That's one of her big things, this hippie-crunchy sister of mine, "trust your body, it knows what it needs" which is almost so naive as to be cute, except for how my body apparently knows that it needs to lay on the floor a lot and never move, and make me feel like I'm constantly being crushed by the air? my clothes? gravity? So yeah: hilarious.  And rage inducing.) 
    So, yeah: it's been a rough couple of months - not without its rays of sunshine, of course.   In the forms of a family wedding and house guests who like to chat; a baby shower in the making; a couple of kids who grow like weeds having birthdays; a trip to the movies; a birthday trip out for me that included chocolate fondue and a book signing (which - heaven, right?); and even little things like a couple of really good books (a new JK Rowling under a pseudonym? Must acquire immediately!); coming up on finishing a really large (3+years) project; starting some new crafty things; making sisters laugh when they feel like they never will again; a pining Robb Stark (I'll post a picture this week); and learning how to apply makeup correctly for the first time in my life, via Youtube videos.
   
  But this is going to be a hard week, and I'm going to need as much sunshine as possible to make it through, so if you have any, please feel free to share in the comments.  Hope your weeks/months are going a little bit cheery-er, and even if they're not, at least you know you're not alone.  {God everything I'm writing today is like a therapy session: I'm sorry internet.  (I'm not really sorry - it felt kind of good to acknowledge that shit.)}

Hi Again

I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things.  But I don't seem to have any happier things, right now.  Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams.  Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again. 

I don't even know where I am or what I'm doing,  at this point, besides making it through the next fucking minute without falling apart.  And I'm not always doing a bang up job on that, to be honest.  I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here.  I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly).  I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.  

My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral.  Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other?  I don't know.  So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me. 

My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him.  This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going.  I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out. 

My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully).  My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that?  They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong.  And let's be clear - they didn't do shit, he just took it out on them.  I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it}  My mother told him she was leaving too, although it would be better for everybody if HE just left.  He refused/refuses to leave.

So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up).  She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that.  She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.

My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it."  Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways.  What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.

Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that.  But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am.  Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.

Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have.  Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government.  It's so much fun so far!

But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months.  I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking.  And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it.   I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.

Being a grown-up sure does suck, you guys.  

A tree that looks at God all day, And lifts her leafy arms to pray*

I started this post a week and half ago.  Here's what I wrote last Sunday, immediately after a moment of Grace ~

In the middle of transitioning her from her wheelchair to her bed after this morning's bathroom break, she suddenly stopped what we were doing, looked at me and said "Goodbye dear."  I wanted to hurry her along, get her safely in bed, so I started to joke, would normally joke "where are we going?" because lately she'll say just about anything at anytime, but something about her tone was different, so I looked up from what I was doing.  I looked right at her, and she was there.  She was in there, somehow, in the midst of enough drugs to be hot air balloon-high, she was lucid enough to offer me this.  "Have a good life", she told me, reaching for a kiss.  "And no matter what, no slander from you, no slander from me.  We'll just be happy for the life that we had these three months."  I swallowed back my tears and said "Yes ma'am. Never: I love you."  "And sometimes say a prayer for me."  "Always," I said.  It was all I could say, even if I could have managed more (and there was so much more I wanted to say: I have nothing but good things to say about you, forever.  I'm not going to let these last few months smear your memory, and I know in your heart you know how much I love you.  I'll miss you.  Don't go.) she had closed her eyes again, and you could see the cloud was back. 

Now this is not miraculous, you might say, but you would be wrong: for days, in the rare moments that she hasn't been completely knocked out, we've been talking about eating butterflies and dinner parties that happened in 1969; she's been (her version of) cursing out my Uncle and I for holding her prisoner here, when she just has to "go or I'll scream"; she's been in near coma-levels of sleep for the most part, waking only when her anxiety or pain levels break through what the meds can control.  She hasn't really been lucid in over a week, hasn't been aware like she was for those three minutes, in weeks to months, really.  So those three minutes?  More miraculous than any other I've been lucky enough to live through.   

Tiny miracles: I'll take them. 

Especially now ~

 My grandmother, a great lady, wonderful mother, open-hearted, strong-willed, surprisingly versatile woman, passed away on Saturday afternoon.  She had been having some trouble breathing earlier that afternoon, so I adjusted her oxygen, gave her her medicine, offered her a weak smile: "Don't give me that fake smile", she whispered in her all of the sudden raspy voice, "You look exhausted."  "So do you," I said "Get some rest."  And then she went to sleep and I laid down on the couch maybe 5 yards away. 

A half an hour later, my uncle went in the room and called out to me: "She's not breathing; I think she's gone."  Her hands were cold, but the rest of her was still warm, that's how recently she had passed.  Within a half an hour from the time I had been holding her hand, getting scolded, giving her a kiss.  She went quietly - I never heard even the tiniest gasp - a peaceful end after all these months of drama and unrest. 
 
 Thank you all for all your support these past months: I can't express just how much it means to me.   For listening to all the ranting about dementia and how much I hate it; about the pressure and the heartache and the loneliness.  I know it's been a dark blog as of late, because I had very little else to talk about, and I appreciate all of you who said even the smallest words of encouragement - I needed them more than I could say.

I don't really know what happens now: I'm feeling such a mixture of relief and sadness and numbness that I can barely get the simplest of tasks accomplished... I know that'll wear off as the days go on.  Her memorial is Thursday & the funeral on Friday, and I'm trying to get everything organized for all of that: it's good to have things to focus on... a project to complete.  I'm going to do that for now, and think about how lucky I have been to have her in my life, for as long as I did, even through these last hellish months.  To have held her hand right before she left this world, well, that's not something I'll ever forget. 

*Trees Joyce Kilmer: a line from Grandmother's favorite poem.