Cynthia Anne - RIP

grief

As noted in my last post, I kind of fell off the blogosphere due to my daughter's death. I'm coming back first with a post about her, then on to other topics.

For those of you who knew her, her Facebook page is located at Cynthia Anne; some friends and family are posting anecdotes and pictures.

I've been posting to Facebook every couple weeks or so about her. Likely, a few folks have found me depressing and stopped following me. But several have said they have found my postings useful, so I decided to gather them here so they'd not be lost.

This post is quite long. It will get longer as I continue to deal with her death. I don't want the blog to become a grief blog, but do want to keep this all somewhere. So if you want to follow along, you'll need to bookmark this page or friend me on Facebook.

My daughter died in an ER on July 7th, 2014 due to an aortic dissection. My son-in-law was rubbing her back when she died. After unsuccessful resuscitation, he lay across her body crying until exhausted, then went home to sleep. He called me the next day to inform me. She was 30 years old when she died.

Cynthia Anne - 2013
Cynthia Anne Patti
September 10, 1983 - July 7, 2014

day 2

Last night, Cynthia had bad abdominal pain and Todd took her to the hospital. She stopped breathing and could not be resuscitated. She died. The medical examiner does not have a cause of death determined yet.

I realize Facebook is a horrid way to announce this. But I do not want to call everyone, I am not up to it. Nor do I want people calling me, texting, emailing. Not for a few days.

Please leave me, Steve and Todd alone until we reach out to you.

day 5

My heart hurts. There is a Cynthia-shaped hole in it.

One of the cliches about grief is that time heals it. That's a load of shit. My father died almost 20 years ago and I still miss him.

There is no amount of time that will make my heart whole again after this. Well-meaning folks ask me if I'm OK. No, I'm not. I'll never be OK again.

It's like asking an amputee if their limb has grown back yet. No. Today and forever, the utterly devastating fact will be that my daughter is dead.

Other well-meaning folks ask me what they can do. Well, you can't give me my daughter back, so nothing really. There aren't enough casseroles in the world.

Don't get me wrong, I appreciate kindness. Just... all the cliches around a death are so meaningless. This is not some generic death. This is Cynthia. This is the only her in the whole world and she's gone.

Her death does not turn our relationship into some idealized one. I did NOT always do what was best for her. Sometimes I was a crappy mom. And sometimes she was a crappy daughter. We were not a Hallmark card, we were real people. We didn't love each other because we were perfect, but because we loved each other. Anyone can idealize her if they want to, but I will remember all of her: she wasn't a fictional character, she was real.

Of course, I loved her because she was my daughter. You can't spend a couple decades raising a child without loving them, no matter what.

But I also liked her.

From the time she was very small, her viewpoint often made me reconsider mine. She challenged me. She was bright, witty, funny - and brains have always been my favorite toys.

But she was more than brains. Cynthia had a heart as big as the sky. She loved whole-heartedly with a fierce loyalty. And she forgave as easily as she breathed, returning shitty behaviour with kindness. It took nearly unspeakable cruelty for her to turn away from someone she loved. She loved freely.

She also had a type of grace I've never had. I've no idea where she learned it. It made her such a beautiful woman.

She was also obstinate, stubborn, opinionated, outspoken, pushy and sometimes a shithead. Like I said before, she was real.

I did not lose my baby this week. I'd already lost her as all mothers do, lost the 4 year old I adored so. I have often been nostalgic for those magical years, of that beautiful child.

No, this week I lost an adult woman, a woman who was my friend.

I am comforted that Todd was with her as I know they shared a profound love. And I know this loss is devastating to him too.

While everyone who knew her has a Cynthia-shaped hole in their heart, Todd's is like mine, to a depth and breadth and width that encompasses both her amazing qualities as well as her imperfections and cherishes all of who she was.

She was too young. There is so much she didn't get to do, she missed out on so much. I grieve not only for our loss, but for hers. But she did get to experience the love of her life and I am glad for that.

day 7

This came out when Cynthia Anne was 3 or 4, when we lived in Pensacola while I was at UWF. It was our song.

 

day 10

My family is in FL, NC, RI and PA, so there was no better place for a memorial service than TX, where she'd lived for the past 8 years.

Honestly, I was dreading it. I have been very careful with myself. I have only spent time with Steve and Todd and only voiced one friend of mine, Pat. I have pretty much kept everyone else at Facebook or text level. I want to let people in a little at a time as it's too overwhelming.

I didn't really want to go to the service at all. Other than Todd and his mom, I didn't know anyone there. I didn't want to deal with such catastrophic emotions with a bunch of strangers.

But it was good. There was food, music Cynthia loved, people who had different anecdotes to share and everyone was very kind and I only crumbled a couple times. A number of people spoke and it was recorded to share with those who couldn't be there. It was sad, of course, but beautiful.

Thanks to everyone who helped with food, tech equipment and hugs.

Afterwards, a few friends came back and we played games until well after 4 AM, while munching on leftovers and it was all good, laughter and silliness.

I slept until after 2 PM, so my sleep schedule is currently a tribute to Cynthia. :)

day 11

I don't think I like the modern system of dealing with death.

Todd was with Cynthia when she died, so threw himself on her body and cried for hours. I vaguely envy him that.

Apparently, TX law requires an autopsy for all patients who die in hospitals within 24 hours. When he contacted us, it took us nearly a day to wind up our lives and get on the road, so even if we'd flown, we'd have not arrived prior to the autopsy.

The medical examiner would not allow me to see her afterwards, and at first, I didn't understand why. I imagined that giant Y across the chest and abdomen, thought they were being too picky as that wouldn't have bothered me.

I've been to funerals where the deceased looked better than they'd looked in the previous several years of life and didn't need that. I didn't need her to be pretty; just needed it to be her. As I said to Todd, she was covered in blood and gore when I met her. This is my DAUGHTER.

When we contacted the funeral home and were told there would be this large fee for a viewing, Todd asked why and was told it was for reconstruction of her face because the autopsy would've included her head. The fee wasn't relevant, I didn't want to see a reconstruction. I have this notion it wouldn't look QUITE like her, something would be off. I had wanted to see her, not a rebuild. I'm sure they're good at their job and all; I just didn't like the idea of putting her together like Tinkertoys...

The advantage of the modern system is that we get the autopsy, get answers, know what happened. There is a degree of comfort in that as when someone you love dies, you want to know why.

But it seems a rather inhumane system too.

There was a time that if a loved one died, you had the viewing at home. Family would wash and dress the body, do the makeup and hair, prepare everything. I would have preferred that system in many ways. Aside from being able to see her, it would have felt like I was able to do one last thing for her. Though I'd have certainly screwed up the makeup as I don't have the elegance she had.

I let go of the desire to see her not just because of the reconstruction thing, but because I realized that what I REALLY wanted was to see her walk into the room. I didn't want a corpse, I wanted HER. I want to hold her, hug her, tell her again how very much I love her. And I will never, ever get to have that again.

Because of paperwork kerfuffles with social security, she won't be cremated until today. It seems inconceivable to me that the last time I saw her was dropping me off at the airport and the next time will be ashes.

Does that seem right to you?

day 18

Leaving TX was sad. Walking away from where Cynthia had lived and all her things was hard. Leaving Todd was also hard, we're unlikely to see him again.

The trip home was good. We stopped in KY and spent Friday and Saturday night with Pat and her husband, then finished the trip Sunday.

On the way home, I had been thinking that my life wouldn't be too bad now. Cynthia and I had been living separate lives for some time. At home, weeks go by when I hardly think of her until she calls, then we'd talk for hours and hours. It seemed to me that there could be long periods where I wouldn't think about her. It's not like Todd whose every day life will be filled with things he used to do with her.

Todd had given me an animal-print blanket and her favorite 2-player game. I thought if I put these things and the ashes aside, I could distract myself and spend hours, if not entire days, not thinking about her.

I walked in and went to put something in the fridge and saw... the magnet she'd made me in kindergarten. I turned around and saw the apron on the wall she and Kathyrn made me 10 years ago. And on the other wall is the wok she bought me this past Mother's Day. I remarked to Steve that I don't know why I'd asked Todd for mementos, my house is already full of Cynthia. He remarked that at least the knives weren't from Cynthia and I reminded him she'd bought my good knife set for me a few years back. Heh.

My HHA, Lisa, had been taking care of the cats, not just feeding them, but loving on them. But they'd not been left alone for years. She'd last been here on Friday and we arrived home on Sunday evening, after an absence of 12 days.

Little Bit cried all over me and insisted I pet her constantly, so Steve had to unpack the car by himself. I figured she had a right to be as annoying as she wanted and she has continued to be so. But then she is a co-dependent kitty even when not left alone.

Kitana was nowhere to be found. In fact, she didn't show up until 11 PM Monday night - 27 hours later. I scolded her and told her how worried I'd been and could almost hear her thinking back at me, "You go away for almost 2 weeks and bitch at ME for being gone too long?"

Another thing I'd thought of on my way home was that I wanted to be alone. I had not been alone since Cynthia died. Lisa had to adjust her schedule this week, so was here Mon, Tue and Wed, so today has been my first day alone.

Lisa and I got stuff done, grocery shopping, other errands, returning the rental, straightening the garden. But we were not efficient. I talked for many hours about Cynthia and cried a bit here and there. She is a good listener. But today is my first day actually alone.

I think people are worried about me being alone. But there is really nothing to worry about. Had anyone asked me prior to her death how I'd react, I'd have assumed I'd be suicidal. But I'm not. My reaction sort of surprises me.

My physical reaction surprises me as much as my emotional one. It's been 8 years since my heart attack. While much research and behavior change has occured since then, stress is a killer that trumps anti-inflammatory action. I don't understand why I haven't had a heart attack yet.

I think some of the fear of me being alone may be that I will fall into a pit of grief and never climb out. But my grief is not a pit, it is a mountain. Let me explain...

There are times in your life when you throw yourself down on a bed and sob until you fall asleep exhausted and get up the next day feeling relieved. Since I became disabled, I cannot do this. The fatigue is bad enough that an emotional outburst like that leaves me physically unable to get out of bed for days. Not that I'll necessarily avoid any incidents like that, but I'd like to.

I am reminded of the saying about how do you eat an elephant; answer: one bite at a time. I see the grief as this mountain I have to get through, but need to get through it in bite-sized bits, not all at once. I can only let so much in at once, and otherwise need to keep myself distracted.

Some grief has been processed inside of hugs and it works well, especially when it's someone else who loved her. But it seems to me some of it is mine alone.

But probably not much today. I have lots of stuff I've procrastinated on and can use those chores to procrastinate on my new grief diet.

day 18

While we were still in Texas, I explained to Steve that this is THE nightmare. Scores of times over the years, you have the nightmare your child has died. It's simply the most awful thing you can imagine and you start having those nightmares even before the child is born.

"And this is the longest, most convoluted version of the dream I've ever had and I just wish I could wake up."

day 19

It is a cliche, I know. But the funeral had way bigger more elaborate flower arrangements than she'd recieved while hospitalized. Though they were her favorite flowers, she didn't get to enjoy them. It seems such a stupid thing that we look at flowers that were for HER and she can't see them, smell them, enjoy them.

If you love someone, send them their favorite flowers NOW while they can enjoy them. A big, ridiculous, oversized bouquet. Be extravagant, be stupid, love to an embarassing degree. Just love those you love like crazy while you can.

Years ago, I'd flown down for a visit. And while I'd known Steve would hate Houston, and I don't like it much myself, we discussed doing a visit together. But the time wasn't right, we couldn't afford it, etc. But somehow when she died, we were off to Houston immediatly, in less than 24 hours, we were packed, had cancelled work and the milkman, had made arrangements for the cats and were off to Texas in a rental. And it was good to see Todd, and I had fun with her friends, especially playing games. But it would've been so much more fun had she been there. Why didn't we do it before? Even 2 weeks earlier would've beat being there after she'd died.

I have major fatigue issues and postpone a lot - phone calls, emails and visits - all can exhaust me. But screw the fatigue, I can rest when I'm dead. I invited 3 friends and some family to visit before the end of this year, all invites sent before we even left Texas.

I don't want to miss anyone else. If I love you, I need to see you now, NOT after you die and I suddenly find I can manage the visit after all. I want to love you in person while you're here.

I want to give you flowers NOW. Unless you're Pete, in which case I want to give you beer now. ;)

day 20

It seems utterly bizarre that no one will ever call me Mom again.

day 23

Days are not so bad. I can choose how much to talk about Cynthia and how much to cry. I'm letting it in just in small bites. For example, I'm crying as I write this. It's OK, it's not too much.

Otherwise, I can distract myself with gardening, writing, research or TV. I have this notion I will process the grief in bite-size bits and otherwise stay distracted.

I have much less control at night. I have to fall asleep reading or watching a movie so as to prevent my mind going there. My brain tends to "float" at night and is pretty determined to float to Cynthia, which causes sobbing, not sleep. My phone, with Netflix, is more comfort than the cats lately, as it keeps my brain busy until unconsciousness occurs.

Going to sleep is not so bad as actually waking from sleep. Unfortunately, I have reached the stage of life where I have to pee several times a night. And the waking is hard, confusing and kinda awful.

Last night, I woke and my first thought must have been from a dream, though I can't recall the dream itself. But my second was from hard, cold reality, which just sucks.

"I have to save Cynthia..."

"You can't save her, she's dead."

I didn't choose to cry while peeing, which seems sorta disrespectful in a way.

Yeah, crying while posting to Facebook is so much better.

day 25

How I've been dealing...

The very first day I found out, I couldn't speak to anyone, not even Todd. Steve made the notification calls. I posted on Facebook mostly to get people to leave me alone.

Then we went to Texas. And at first, it was just Steve and Todd - everyone else just on Facebook. But then we had the memorial service and that was good. And I contacted a few people to arrange visits in the near future.

We had one of those visits on the way home and then when I got home, spent time with Lisa, my HHA, several times a week. And I've told her lots of stories about Cynthia. I've reached out to local friends for other visits too since I've been home. I also located a bereavement support group I'll be joining; they meet twice a month.

I've mostly kept myself busy. Errands, shopping, gardening, cooking... last night, I wrote letters to each of the people I'm sending a keepsake with ashes to. Today, I strained the chicken broth out of the crockpot and the ham broth out of the stockpot, then started some more. Tomorrow, I will make bread and butter pickles.

One of Cynthia's friends said I was amazing and when I asked why, she said because I wasn't curled up in a ball on the floor.

I cry, nearly every day, sometimes several times. And I sob sometimes too. But most times, I don't. Even most of the time when I'm telling a story about Cynthia, I don't cry. Maybe 5-10% of the time, tears come, and I let them. I just keep telling myself, there is nothing I HAVE to do, I can do WHATEVER I want to do, I will just be kind to myself. Just live and let the grief be whatever it is each day.

I have not KNOWN what was driving me, just known somehow that I was making good decisions. But last night Steve and I discussed how we're each doing, and I figured out what I've been doing instinctively and why it is good for me.

It'd be the easiest thing in the world for me to go to bed and stay there for 6 months or longer. No one would blame me. I'm a grieving mom, I could do it. I could push people away and be miserable and alone as long as I wanted to and everyone would respect that choice. I have an amazingly supportive husband and a great HHA, they would keep me fed and watered until I came out. Like a sort of depressed, slightly wilted houseplant...

And if I did that, every single memory I have of Cynthia would be tainted with pain forever. The depression would become bigger than her. I'd avoid thinking of her, people would avoid mentioning her, and she'd be even more gone than she is already. She would become a horror to me.

No.

Listen, Cynthia was nearly my entire life for two decades. Less so for the last decade, but still in my top ten of kewl people; it was a privilge to be her mom. Cynthia brought incredible joy and pleasure to my life. She was WORTH it, every iota of pain I have to go through now. No matter how awful the grief is, I can't indulge in the particular way that ruins her memory forever; she is worth more than that to me.

I miss her so, so much and it hurts so, so bad.

But that "life goes on" is not a cliche, it is the only thing that keeps a part of her alive inside of me, allows me to cherish the joy.

day 32

One month ago today, my daughter died. I am still in the "denial" stage. She was not part of my day-to-day life for some time, so if I stay busy enough, I can pretend it never happened.

But sometimes I can't pretend. Last week, I filled a bunch of little ash containers that go inside charms to send to those close to her. Futzing with ash is very creepy. No matter how careful you are, some spills. And then there was having ash on my actual hands and having to wash it off...

I sent the ash-filled charms along with some mementos I collected in Texas and letters to her closest friends.

At some point, I want to write about my experience with her during her illness this year, but I don't think I'm up to it today.

day 52

"There's no tragedy in life like the death of a child. Things never get back to the way they were." - Dwight D. Eisenhower

day 53

I cried all over my bereavement group this evening. Luckily, I had brought my own kleenex.

A lot of the folks have lost spouses and talk about how bad the loneliness is. Part of me thinks I'm lucky because I have Steve and the two furry sociopaths. But then they talk about their children and grandchildren being supportive, and I'm just at a loss.

Though we are not going through the official 5 stages of grief in the group, I think I am in denial. I hadn't cried since the last group meeting, 2 weeks ago. I think about Cynthia, I talk about her, I tell anecdotes. But when I think of her being dead, I push that thought far away and just go on with whatever I'm doing.

Since the last meeting, I planted a bunch of brassicas, dug some potatoes, helped with fencing, played Pandemic with Steve a lot, watched a bunch of cop shows, made blackberry jam, put up tomatoes, dried parsley and oregano, baked bread, blanched and froze many pints of sweet corn, harvested peppers and eggplants... anything that distracts from the idea that she is dead.

Previously, I had said I'd take the grief in bite-sized bits, but it seems I'm not taking any at all, just postponing it. I'm not sure this is entirely a good thing. I realize everyone experiences grief in their own way, and maybe this is mine. But I also feel like... maybe this is like the eye of a storm, and when it hits, it'll be devastating.

This is simply the most horror-ific, awe-ful, terror-ible thing that has ever happenned to me. It's the nightmare you have before the child is even born and throughout their childhood and especially adolesence and then they are safely and sanely into adulthood and BOOM! All your worst fears realized...

The hurt is just unfathomable. I can't face it. I'd rather think about tomorrow, I thawed bacon to cook for Gabby and Cristina in the morning, I'll dig more potatoes with Lisa once they've left, plant the Danish ballhead and Amazing cauliflower seed that arrived in the mail today, make a risotto for dinner unless we just decide to have the leftover chuck roast, I shall go read more about tiny houses.

day 57

My baby, I just miss you so much, I can't stand it.

day 64

I was a bit braced for tomorrow, what would have been Cynthia's 31st birthday; I had a notion in my head that it might be a sucky day. I wasn't expecting it today though, so was blindsided.

Times around sleeping are bad as it's harder to steer one's thoughts in directions that don't hurt; when fully conscious, I can aim away from pain even when sharing about her. But before going to sleep or just after waking, stream of consciousness can lead to a bad place before I realize I'm going there.

This morning before I got out of bed...

"I really enjoyed being with Pete. That was a great visit."

"This is what life is about, spending time with people I love."

"I will never spend time with Cynthia again."

I melt into a puddle of tears before I have even gotten out of bed. I grab the kleenex on the way to the john and once I've peed and head to the kitchen, my first sip of coffee is tainted by the flavor of salt in the back of my throat.

Some interpretations of quantum mechanics imply multiple universes; I am obviously in the wrong universe because Cynthia is not here and there's entirely too much snot.

day 65

Apparently, dates are meaningless as I am not broke down today. Steve said to text him at work, or even call if I needed to. But yesterday was a bad day and today is not.

Originally, I thought I'd make a cake, but all I have on hand is chocolate cake and frosting, which Cynthia didn't like. Plus we have most of a gingerbread cake baked Monday leftover so don't really need a cake.

On my way to the farmer's market after a quick shower... buying fruit and veggies is probably a better tribute to Cynthia than cake anyways.

day 71

So last bereavement group, the topic was food. I felt it was too broad a topic for a daughter who ate with me daily for almost 2 decades, who took all my recipes and changed them and introduced me to new recipes.

But I got to thinking about my distractions since being home and it's been about the garden and processing incredible amounts of harvest. And while I'm sick to death of my food processor, mandolin, pressure canner, water-bath canner and dehydrator and honestly just groan when I come in with another 3 or 4 gallons of produce, it has kept me busy. Being overwhelmed has been good.

But pretty soon my freezer and shelves will be full and the garden will stop producing and there will be a long winter ahead of me with no food processing to distract me.

Steve works 12-14 hour days, so it will be a long, lonely winter.

Anyone want to come over and play Pandemic for about 3 months? ;)

day 83

So again I had a meeting of my bereavement group last Thursday night. I came apart during it. Unfortunately, Steve had to go to bed for work the next day, so my coming undone was finished up alone except for kitties.

A topic I discussed was that some people seem uncomfortable when I share casual anecdotes about Cynthia. I think... they are afraid of me breaking down like I did at the group. When I speak of her, they get all solemn and quiet, and I'm vaguely left with the feeling that I farted loudly in church.

For me, the vast majority of the time that I speak of her, it's the same as before she died - she was a huge part of my life for the majority of it, so it's normal and natural to discuss her. Sometimes, I get misty when I talk about her, as I am writing this post. Rarely do I break down like I did Thursday night, which is OK too, I have lots of grieving to do.

In any event, I am going to keep talking about her whether people get uncomfortable or not. For two decades, she was my primary priority. For another decade, she remained one of my favorite people. And when she got sick, turned out she was still a priority and I was still a mom.

Her death doesn't undo who she was to me. Only my death or a complete frontal lobotomy could change that.

day 88

The only people who think there's a time limit for grief have never lost a piece of their heart.  Take all the time you need.

day 95

Last night was bereavement group. I pretty much cried through the whole thing, so didn't talk much. Various things I wanted to say... well, I knew I'd go from ordinary crying to sobbing and be incomprehensible anyway.

It kinda started the night before. I woke up to pee around midnight and started crying and pretty much kept it up for many hours off and on...

There's also a tinge of depression showing up. Maybe because the days are shorter. I took a bunch of cod liver oil, fish oil and vitamin D today in hopes that it'd stop. I've been inconsistent about supplements for a while, so hopefully it'll help.

The thing about depression is... you don't have to have something to be depressed about. There's just a pattern of seeing the worst in everything and feeling it's all futile. I recognize the thought patterns and try to push them away. I can't afford depression on top of grief, it'd just be too much. I just don't need to be depressed when there's actually so much to be depressed about... it's like a pit I'd get stuck in.

day 102

Woke up with this song in my head. I'd never seen the video before. Also never heard Gwen Stefani sing it by herself. The duet with Cynthia Anne was better.



day 106

The sun will rise again.  Weeping may last through the night, but joy comes with the morning.
created by Toby Mac

I shared this with a comment: "I don't know. I'd like to feel hopeful, but it's just not there yet. On the other hand, this is the first shiny-happy thought I've seen since Cynthia's death that hasn't made me flatout angry."

day 117

Missed the last bereavement group cause my car was in the shop. Turns out that I get thoughtful even without a group.

So one of the things people in the group and the DVDs we're watching talk about a great deal is the deepening of their faith and becoming closer to God and so forth.

It seems to be working the opposite way for me. I called myself an agnostic before Cynthia's death; I used to joke I didn't have enough faith to be an atheist. While mostly of a scientific mindset and not having very specific beliefs, I've had a vague belief that there is something more than strict materialism. And without really examining the belief in any detail, I had a notion that the universe was generally benevolent.

So as vague as my faith was, it has kinda evaporated. It's hard to believe there's any rhyme or reason to a world that doesn't have my daughter in it.

I think that these folks who see some meaning in their loved one's deaths just... sort of need to. They need to think there is some profound reason behind it all. The thing is, from my viewpoint, there is no possible reason.

I'm a mom. If I could've chosen between my daughter and the entire rest of the planet, all you suckers would be long gone. There is nothing that could possibly bring purpose or meaning to such a devastating loss.

So... there can't be any reason.

Even the notion of ethics is shaky; it continues to exist in me purely out of habit rather than anything deeper. I don't think I believe in goodness anymore. A world without Cynthia can't possibly be good.

Half of her ashes sit on my piano. That is just so terribly wrong. Nothing could possibly ever make up for that.

day 128

I generally write up something after my bereavement group, which is every 2 weeks, and gives me a sort of time table to think and post. This time I'm writing a day before my group.

To start off, I am 52 years old and don't give a damn what anyone thinks, except those I really, truly love. Thus either of my cat's opinions matter more than most of those reading this. :) So when I talk about "shoulds", I am not talking about how anyone else deals with grief, or thinks I should, or what the stages are, or any of that.

But I'm not sure how well I am dealing. I have been trying to deal with the grief a bit at a time as it seems too overwhelming to even see all at once, let alone feel. The vast majority of the time I think of Cynthia in a sad way, I push the thoughts away. I do allow all the positive thoughts in as I am fiercely protective of her memory. But I only do the sad, crying thing maybe once a week.

It's not just about the grief seeming overwhelming, but still dealing with my disability, which includes a lot of fatigue. I simply can't cry several times a day if I'm going to get out of bed on a regular basis.

I realize I can't NOT deal with it. I mean, I can't push it away all the time. That way lays madness.

But I'm not sure I'm dealing with it enough either. I've become very fragile. I overreact to the tiniest things.

I don't mean overreact like hormonal stuff. I don't think I ever learned to deal with that sanely, but luckily menopause happened and the cycle of crazy stopped.

I've also sometimes had adrenaline surges while getting my adrenal insufficiency under control. Now THAT makes girly hormones look like nothing. When a serious fight or flight reaction kicks in, you're REALLY batshit crazy. The smallest thing seems all life-and-death - you feel so incredibly threatened that feeling murderous isn't far behind. That I have learned to deal with, just with a mantra reminding myself that it is just adrenaline, it'll stop soon. And a bit of a hint aimed at the husband that this is NOT a good time to tease me.

While the unpredictability of my current emotional state is comparable to the crazy of both PMS/pregnancy/perimenopause and adrenaline surges, the reaction is entirely different. Rather than fear and anger, an outward type of reaction, it's an inward thing. It's a collapse into incredible loneliness and grief.

This happens when I'm not even thinking of Cynthia, but just about any small disappointment. I collapse completly into myself, out of nowhere, just into loneliness and despair.

And this makes me wonder if maybe I should be dealing with it more directly or something. Not a "should" based on anything outside, just not sure if how I've been handling this is the best thing for me.

day 143

Before I woke up today, Steve told me Cynthia was on the phone. Made sense as she calls holidays she's not here. I was briefly irritated she'd called so early, figured she'd been up all night and was calling before she went to sleep. I roused myself to take the call and realized Steve was not in the room, had not said she'd called and remembered she is dead.

day 148

So bereavement group meets the second and fourth Thursday of each month, which means we missed our last meeting due to Thanksgiving. The time before, we discussed the upcoming holiday, but I had little to say.

Literally, I have lots to be thankful for. I have an awesome husband. I have loving friends. I have two wonderful cats. I live in the most amazing place, that is both dead cheap and has room for chickens and a big garden. I have nearly a year's worth of food put up, with the exception of coffee, some meat and dairy. I have a new-to-me minivan that is the nicest vehicle I've ever owned.

But I had a bad attitude. As we discussed the upcoming holiday at the last group, I just kept thinking I wasn't grateful for a damned thing cause I don't like a world without my daughter in it. I just don't and there is nothing that can make up for that. I don't give a damn if I win the lottery; I'm not going to be thankful without my daughter.

But over the couple weeks between the last group and the holiday, I found something I am thankful for. I am thankful Cynthia was so sick last year.

That sounds like a horrible thing to say and I certainly wasn't thankful at the time it was happening.

To begin with, we had an agreement with Cynthia and Todd, that one year they'd come for Thanksgiving, the next year for Christmas. But last year, we largely cancelled Christmas due to financial problems. We couldn't afford to get them from TX to PA and as it happened, Todd was working a new job and couldn't take time off. So we all agreed that they were not coming.

Just before New Year, Cynthia was hospitalized due to diverticulitis. At the time, her biggest concern was missing partying with her friends. She told me she was going to have surgery and I was initially opposed to the idea. I have known folks who've had various GI surgeries and wound up malnourished because they could no longer absorb food properly. But I looked it up and saw it was a surgery at the end of the large intestine, so most nutrient absorption has already occured. And it made the most sense given her issue. There's two ways the surgery can be done.

In an emergency, they cut out the infected area and put in a temporary colostemy bag for a couple months, then a second surgery is done to knit the bits together and remove the bag.

The better surgery is where they cut out the bad bit and knit it together right away. Obviously, that is the preferred method.

To do the preferred surgery basically requires a whole bunch of antibiotics and several weeks symptom-free.

Cynthia never had several weeks symptom-free. She'd go a week or two at home, then wind up at the ER again. Every time she was hospitalized, they took her off food entirely and put her on IV fluids only. They upped the interventions, sending her home with a PICC line and daily nursing care to give antibiotics through it. They put in a drain, which apparently was hitting a nerve and was horrifically painful the entire time it was in.

This went on for 4 months, she kept going back to the hospital and getting the surgery postponed. She was in the hospital again as they discussed a new drain and she was seriously considering the emergency type surgery just to avoid the drain again.

She was also stressed because she is neater than Todd and she felt the house was chaotic and she couldn't face going home again. I tried to talk her into waiting for the easier surgery and she asked me to come.

I told her 3 things, first being that given that I am disabled and have a home health aid myself, I would be of limited practical help. Second being that I couldn't afford 2 trips and it'd be better if I were there for the actual surgery. And finally, that I felt she just... wanted her mommy. Not that there's anything wrong with that, but her reason for wanting me wasn't cause I would be useful, but just cause I'm her mom.

She still wanted me to come. Todd asked his dad to pay for the second trip so I could afford to go both then and later for the surgery.

So I rented a car and drove to Texas. I spent almost 2 weeks there, long hours talking with Cynthia every day, doing some useful stuff as I could, including doing the PICC line stuff so I could relieve Todd of the late night shifts a bit. Some housework, some shopping, some cooking. But the talking was the thing.

Cynthia and I had a very tumultuous relationship during her adolesence. About the time it began to improve in her young adult years, she moved to TX. And after that, we pretty much only spent much time together when other family was present. During this visit, we had a few conversations that were very healing for both of us. We really connected.

When I left her, we expected the surgery to be several weeks out, but she called me to tell me a date had been set before I left Texas - only a couple weeks out. I was overwhelmed and realized there was no way I could drive back that soon. Though I despise flying, I didn't have time to rest up for another drive. I planned to fly down about when she'd be home after surgery. But Todd called in the meantime. Cynthia had been delirious for several days and awake the entire time and he was overwhelmed caretaking her.

I talked him through trying to ger her admitted to a psych hospital, but turns out they won't take you with either a PICC line in your neck or a drain in your abdomen. He took her to an ER, but at first they wouldn't admit her cause it wasn't medical. I stayed on the phone with her most of the night, talking to her like she was about 4, with stories and lullabies and such so Todd could get some rest.

Someone at the hospital had attended a seminar on delirium and contacted the doctor who'd given it. She was admitted and he began treating her. Meanwhile, I flew down and met them at the hospital. The meds allowed Cynthia to sleep finally. She still had periods of delirium, but also periods of lucidity. Todd and I took shifts, 24 hours at a time, at the hospital.

Since she was admitted anyway, they moved the surgery up. After a few days, she went home and Todd and I went on 12 hr shifts.

During the delirium, I mostly continued talking to her like she was 4. During lucidity, we talked about life, the universe and everything; her hopes, dreams and fears.

Thus during this visit, I got many hours of conversation both with my baby and with my adult daughter. She panicked about me leaving, so I rescheduled my flight a couple weeks out. All told, the second trip was about a month.

Her illness was horrible, painful, embarassing to her and caused huge amounts of stress on me and utterly exhausted me. And I am so grateful for the 2 weeks in April and the month of May.

After several months of recovery, Cynthia died of an aortic dissection, apparently unrelated to her illness. But her illness, which seemed so horrible at the time, has turned out to be something that was a goodness to me since it gave me so much time with her.

So while I was unable to summon up any gratitude for the normal goodness in my life this Thanksgiving, it turns out I am grateful for something that seemed rather horrid at the time.

day 161

Last bereavement group, we discussed the upcoming holidays.

I have an image in my head of a particular ornament. I had Christmas photos done of Cynthia when she was 3 months old and the set came with cheap, plastic ornaments to put the photos in. I have this image of the one infant picture in the ornament clearly in my head.

I'm pretty sure this ornament is in Texas. Several years ago, Cynthia asked for our Christmas stuff, and I'm rather certain I gave her that, as well as all the ones she'd made through elementary school and such. Also a lot of those one-of-a-kind toy ornaments from her childhood.

I am not much for Christmas decorations and only did them the past few years if she and Todd were here. I kept a few sets of generic balls, some garlands and lights. But it is frankly a bunch of work and given my fatigue issues, not worth it unless she was here.

But I've been thinking about that one ornament with her baby picture lately. I don't really want it, cause we don't generally do a tree anyways. Besides, I can clearly see it in my mind, so the physical object wouldn't add anything.

Similar things... I have two trunks upstairs, one of photographs and one of other mementos like her baby book, school book, concert tickets, various things. Steve and I plan to start building a tiny house come spring and I had planned this winter to sort through this stuff and give Cynthia most of it.

All these things are not in boxes. There is a magnet with googly eyes on my fridge that she made in kindergarten. There is an apron she and Kathryn made for me when she was 18 on my kitchen wall. My home is full of reminders of her.

Here is what is weird about all this... if I were to die tommorrow, it would all just be trash. There is no one who cares about the mementos of her childhood but me.

These are things you are supposed to pass on. But there is no one to pass them to.

My parents and grandparents are dead. My only child is dead. I am a lone branch on my family tree.

The pruning was pretty damned bad.

day 172

From Sourcery by Terry Pratchett:

Ipslore relaxed a little. In a voice that was nearly normal, he said: "I don't regret it, you know. I would do it all again. Children are our hope for the future."

THERE IS NO HOPE FOR THE FUTURE, said Death.

"What does it contain, then?"

ME.

"Besides you, I mean!"

Death gave him a puzzled look. I'M SORRY?

The storm reached its howling peak overhead. A seagull went past backwards.

"I meant," said Isplore, bitterly, "what is there in this world that makes living worthwhile?"

Death thought about it. CATS, he said eventually, CATS ARE NICE.

day 173

So again no second bereavement group this month cause the day it would have fallen on is Christmas.

I had all our shopping and shipping done fairly early.

We'd discussed what to get for Todd, but I was at a loss. Cynthia always told me what to get him, so I was clueless. Few days before Christmas, we got a huge box from him. The really sweet thing was... it was pretty much what Cynthia would've got us, so it was like getting gifts from her. Except some guilt attached since we hadn't reciprocated.

We've gotten a ridiculous number of gifts this year. As a general rule, both our families had agreed to just buy for the kids. This rule has flown out the window this year as box after box arrived. Also, a ridiculous amount of cards - and I haven't done cards for almost 2 decades. I am presuming it is because Cynthia died; people feel bad for me and want me to know I'm in their thoughts. So I get loot like a kid.

Anyone who feels guilty for not sending gifts should feel free to buy us a gooseneck trailer in the 24-40 ft range. ;)

On another topic, a while back, we were watching a TV show in which a man woke up to find his wife of 50+ years had died. The husband refused to leave the funeral home and wound up being found there dead himself 2 days later.

Steve said that was a good thing and I was startled and asked him because the notion that dying immediately after your spouse doesn't seem a good thing to me. I have diabetes and heart disease and am likely going to die first. He said yeah cause why would you want to live after your reason for living was gone. While sweet in a way, it was also disturbing.

Cynthia was supposed to be in charge of him if anything happened to me. She was supposed to call regularly and make sure he ate a vegetable now and then. I told him all this, that I had made arrangements for him like he was one of the cats, to have someone look after him. Course those arrangements are gone now. He went to bed shortly thereafter so I didn't finish my conversation with him. But here are my thoughts...

Cynthia had not been my reason for living for some time, but for 2 decades there, pretty much every decision in my life was weighed against how it would effect her. The entirely selfish bit of me resents the hell out of that, having spent nearly half my life with her as my primary priority and it all ends up for naught.

I don't feel suicidal, which I've previously noted surprises me.

But I also don't feel the opposite (searched but couldn't find an antonymn for suicidal, guess I'll go with life-affirming).

I don't feel... like there is a future. I look at all these boxes this week and think we have pretty much killed a whole tree and I don't care. The environment isn't relevant to me cause there is no going on.

I don't know why my daughter's death should make me feel this way. I cared about the future of the planet before I had a child. I have childless friends who care. But for me, the earth is going to cease to exist when I die, so what does it matter? It's not just the entire planet, but also personal. I don't care about me. Again, not suicidal, just not life-affirming. I don't want to end my life, just don't particularly want to prolong it. I don't care either way.

This makes the whole eat right and take supplements thing difficult to stick to. Also makes it hard to get to the Y. I'm not excited about my seed catalogs and even vaguely considering not having a garden next year. Cause what's the point really?

So one night I'm in bed, half asleep, unsure if I'm dreaming or not and I feel minor heartburn. I think that is interesting, maybe I'm having a heart attack. I think I should get up and take some aspirin and fish oil, which I've been quite lax about lately. And then I think - why? Maybe I won't wake up tomorrow. And maybe I will. And I don't much care either way. So I just go back to sleep.

I've never experienced such utter apathy before. It is tied into the thing I said earlier, having spent 2 decades of my life focused on one person and having that ripped away from me. It makes me feel like... what's the point? Of anything?

Get up, have coffee, watch TV. Do stuff with my HHA if it's one of those days. Nap. Fix dinner, spend an hour or two with Steve, watch TV or play a game. Fix lunch for him, set up stuff for juice the next day, do dishes. Cuddle cats and sleep. It's just... maintenance of life, which doesn't have any point.

The world without Cynthia just doesn't make any sense.

200 days

Bereavement group is tonight. Missed the last one cause I was just too tired to go, and the one before was skipped due to Christmas so it's been a month since I've gone. I've several thoughts to write up before I go; maybe I'll have more after.

  1. My thought on the new year was it had to be better than the last because my daughter wouldn't die in this one. And then I was superstitiously afraid to voice it! There are others I love that I don't wish to lose. There's this weird feeling that if I SAY that out loud, that Steve will drop dead suddenly or something.
  2. I keep seeing/hearing people who say/do stupid things to the bereaved. There are 2 mistakes they make. First is to have never lost anyone themselves, so to have no idea what it is like. Second is to have lost someone they love and assume everyone feels the same way they did.

    Grief doesn't work like that. Heck, even relationships don't work like that. My relationship with Cynthia was a mother/daughter one - and unique from every other mother/daughter relationship in the world. Even those who knew her and loved her did not know the same Cynthia I did.

    I am told my posts about her are useful to others. However, I am not expressing anyone else's anguish; only my own.
  3. I bought "A Grief Observed" for my Kindle; hadn't read it in years. As most bereavement material, it is full of stuff about God, which is somewhat irrelevant to me. But also utterly expected when one buys a C. S. Lewis book after all. I love Lewis, always have. I loved him before I was a Christian, while I was, and since I ceased believing. He wrote this particular book after his wife died of cancer and it was never a favorite, but seemed fitting for me now. This bit particularly spoke to me:

    "Getting over it so soon? But the words are ambiguous. To say the patient is getting over an operation for appendicitis is one thing; after he's had his leg off it is quite another. After that operation either the wounded stump heals or the man dies. If it heals, the fierce continuous pain will stop. Presently he'll get back his strength and and be able to stump about on his wooden leg. He has 'got over it.' But he will probably have recurrent pains in the stump all his life, and perhaps pretty bad ones; and he will always be a one-legged man. There will be hardly any moment when he forgets it. Bathing, dressing, sitting down and getting up again, even lying in bed, will all be different. His whole way of life will be changed. All sorts of pleasures and activities that he once took for granted will simply have to be written off. Duties too. At present I am learning to get about on crutches. Perhaps I shall presently be given a wooden leg. But I shall never be a biped again."
  4. The loneliness is almost unbearable. I do not know why it is so bad this year. I mean, every winter since I became disabled has been sort of depressing; we live remotely and getting out in winter is often more trouble than it's worth. And yet I've been getting out more than usual as I go not only to the bereavement group but to a gaming group. So I'm less isolated than usual.

    Cynthia's death ought not effect my loneliness much. She lived in Texas and was not part of my day-to-day life. We spoke every month or two, usually for several hours at a time, but entire weeks went by without me even thinking of her. Why her death leaves me so unspeakably alone is hard to fathom.

    Steve works 12-14 hour days, so is barely here during the work week, just enough for life maintenance stuff, have some dinner, pack a lunch, shower, how-was-your-day convo, etc. And my HHA is here 12 hours a week. And of course, the kitties are here 24/7, so I'm never entirely alone.

    But the anguish of loneliness is just heart-breaking; it often physically hurts. I have quite simply never been so utterly alone.