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Autism: Change of Perspective

Speaking of age, my husband said something to me one day that caught me off guard.

We were talking of things that need to be done around the house: water heater, window, passports… I said the passports weren’t exactly a rush as we had no plans to go anywhere, and the earlier we had them done, the earlier they would expire.

I mentioned that I thought they only lasted five years (as that is how long we had our last ones.) My husband said he thinks we can get them for ten years now and “that’d be my life.”

Ten years.

Ten years ago my youngest ‘foster’ daughter was sick and falling over. Ten years ago we were told about ‘our’ children’s youngest brother, and were asked to adopt him.

Ten years before that my cousin died from complications with her Cystic Fibrosis, and my grandfather had a heart attack and cancer, and died a few months later.

Ten years is nothing.

I focus on the idea that the world might end in a few months – just to keep going. Anything I do, however, is with the consideration that I have as long left as I have lived so far – so renovations, and even habits, are important considerations for carrying me through the future.

When I get overwhelmed with the renovations that need to be done, or the skills and habits I would like to form (all of which I fixate on often) I get a strong impulse to move to a home that would make these things easier for me.

My husband’s statement sent me into another perspective which I haven’t seen before.

It isn’t so much that I thought he would live forever, but… the idea of his death was in how it would affect me – and such thoughts placed a sense of urgency on getting things in place that would help me and my son to endure it (for thoughts of him dying bring me to a place of panic – how will I keep going on my own?)

But this thought, spoken from his mouth as such a fact, transformed that perspective to what he might be considering as a result.

With ten years left, there is no benefit to moving (even if he were someone okay with change; which he isn’t.) With ten years left, what is the point of altering his diet or his habits and thereby making his life harder and less enjoyable?

And the things around the house? Some – like the window (which has cracked in many places and is held together with tape) and maybe the water heater are necessary. Others – flooring, paint, decluttering, updating, or even getting a wood stove – I suppose would not be so important at this point in his life.

They matter to me, but of course they wouldn’t matter so much to him: Ten years is nothing.

Obviously he could live longer, and that is the hope – but it isn’t like he will pass a certain date and the danger will be gone. Instead things are likely to become less important to him with time.

A complete change of perspective in just a few words, “that’d be my life.”

Easter 2015

 

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Autism: Morbid Humour

Most of the time I guess I would agree that I don’t have the best sense of humour. I don’t ‘get’ jokes; I hardly even like them. I am too anxious or depressed most of the time to be anything other than serious; the world scares and hurts me. Every once in a while however, I get this uncontrollable urge to laugh in what might not be the most appropriate of circumstance.

Like the other day when I went to get my license renewed.

“Are you an organ donor,” the person asked, “Would you like to sign up for that?”

“Yes,” I told her, and suddenly got flooded with many thoughts about this. Not so much that I wanted to die in an accident or anything, but if something happens to me, and my husband has me cremated (his family does that, mine doesn’t) at least parts of me might still be around for… Okay, I am not sure about cremation, though I did have my dog and my son’s cat… done.

I have buried so many of my pets – rabbits, guinea pigs, and a couple of cats – here in my yard. Not only did I feel I was running out of room, but… it kind of traps me to this property. It really is the only hesitation I have at thoughts of moving. Kind of morbid, really. Cremating makes it… easier, somehow – as anywhere we go, they could come too.

Not that I exactly believe they are tied to their bodies or their box or… the thing is, I really don’t know what happens to animals when they die. That lack of knowledge has been painful for me. The problem with cremation, though, is that DNA is destroyed, and… I think a lot about these things. I probably shouldn’t. I am sure it can’t be healthy. Still I do.

So if I was cremated, and I was an organ donor, parts of me might not be cremated – and therefore when the resurrection came, there might still be something to resurrect. So I signed.

Of course, while I was signing, that is what I was thinking of: “What if the resurrection comes and my ‘parts’ are made suddenly into a ‘new me’ standing outside of the person.” I pictured this and had to fight really hard not to start laughing hysterically in front of this complete stranger – who would not understand.

But as I was fighting laughter, it turned to sadness as I realized the tragedy of this – the person who had my ‘parts’ would probably need those parts to survive, and what would happen to them if they were suddenly removed?

I wonder if the worker perceived any of these struggles in my mind as I was signing the card, and thought there might be something not quite right with me. I kind of wonder if she might have been right with that perception.

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Autism: Overrated Sanity

And then the days come when I am once more interested in learning and growing. This both surprises and saddens me – how could life go on after such pain? It often feels that when my heart breaks, it actually does break – and there should be nothing after it. No life. No laughter. No joy.

Perhaps death. Death feels like the appropriate answer to a broken heart. And in the moment only death holds hope that peace and joy could ever come again. I am not suicidal, but there are frequent moments in my life where I long for death. This is not the same thing. One is an action, the other is a prayer.

Mostly I pray, when things hurt so bad (and for me I get to that spot several times a month even on a decent month, for my past holds many painful memories, and my mind frequently forces me to relive the trauma) that God will take me home. Please take me home. Please don’t leave me here any longer. I can’t do this any more. I don’t want to be here anymore.

And in those moments I realize that I am absolutely no different from the child I was long ago, lying in my bed, praying for the same. I don’t belong here. I never have.

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This world is not my home, and this is a truth I can never alter – but there are some things that help me to hold on just a little longer.

I suppose for other people it is family and friends – and I do hold on for them. I pray to stay when I long to go because of what my death might do to other people… not a lot of other people, but there are some. What would happen to my son? To my girls (dogs?) To my mom?

I pray to stay for them, but make no mistake – this is a sacrifice for the ones I love. For me the sacrifice is in living, for death means home, and home is what I long for.

The other day I was watching Sherlock and he said something that I immediately had to go and type down (though I may not have it quoted word for word.) He said:

“Your death is an event that happens to other people. Your life is not your own; keep your hands off of it.”

I am not suicidal, but to stay is a sacrifice – and there are many days when I am lying in bed thinking I can’t keep holding on. I just can’t.

There are some things in life that make it easier to stay for a little longer – and that usually comes out in hobbies and events, such as learning to can. I can’t learn when I am struggling; my mind shuts down and won’t let any new knowledge in.

So when I got up in the morning and decided that this was the day I would make my first attempt at canning, I knew. I knew that whatever it was that I used to convince myself that what was real really wasn’t was worth it… is that too confusing?

Perhaps my grip on reality isn’t strong – but it isn’t strong on purpose. My reality threatens my sanity, and it is only… ONLY through letting go of the truth a little, and accepting the possibility that there is a way to escape the confines of the natural law – only then can I get up and live again.

However I do worry about where the line is, and how much more I can take before I cross it. Then again, there are days when I think that sanity is highly overrated.

 

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Autism: Powerless to Help

There was a Facebook post: A 13 week old puppy, who carried a stuffed toy with him wherever he went was at a shelter. He loved the toy so much, the workers would have to take it away from him so he would eat.

But the shelter is a high kill shelter, where the animals are given just weeks, sometimes even days, to find a home – before they are ‘humanely’ put to sleep.

No one showed any interest in him, so he was moved to the back – to death row.

He took his stuffed toy with him. His only source of comfort as he sat in the cage waiting to die.

I don’t know what happened to that puppy. I know there are many young and old in a similar situation. I can only hope the word got out on time, and he was saved.

I cried when I read about him. I am crying still. The world is a cruel and evil place, and I feel powerless in it – nearly as powerless as that puppy, sitting in that cage, holding his stuffed toy for comfort.

I cannot save them all. I couldn’t even save that one. And it destroys me.

Maybe that is why it is so hard for me to live in this world: I can’t block these things out. I can’t NOT see – and I am powerless to help.

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Autism: 365 Days

The day… I was aware of it. Of course I knew it was coming, only… I expected the sadness. I expected missing him. I expected that I would think of him a lot, and wish he was here, and wish he never died.

But he did die.

And as the one year anniversary of that date quickly came upon me, I did feel sad. I did think of him a lot. I did miss him. I always do.

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What surprised me was the panic. The irritation. The feeling of being completely overwhelmed and powerless in this life.

I don’t know why it surprised me. These emotions are nowhere near abnormal for me, but…

May of 2017 was a good month. A really good month. Better than any I have probably had. I had energy. I was (mostly) calm. I was content. I was happy.

As June 8 approached, I expected to cry a lot. Instead I shook. My mom is still here. I am thankful she is still here. But I haven’t been visiting well. It has been hard to talk. When I am so anxious, I retreat inside myself. Inside my head it is so loud, that I forget the sound doesn’t carry forward into ‘real’ life.

I have been so quiet, and I feel bad. “It is a hard day,” I explained to her (even before the day arrived.) She acknowledged the words, and we remained mostly in silence.

And then we reached the day before. I was washing the breakfast dishes, and she came in to talk to me. Her words were ‘off.’ She seemed ‘off.’ She sat down on the dining chair and I kept looking back.

“Are you okay?” I asked her.

“Just dizzy,” she answered – but her words were slurred. Slow. Like she was answering from a dream. Not like her.

The panic grew, but I couldn’t figure out what to do.

So I asked again, “Are you sure you’re okay?”

“Just feeling really dizzy,” she answered. Still ‘off.’ Still ‘slow.’ Still not like her.

I finished the dishes, and left her there to deal with her dizziness. I shouldn’t have left her, and worried about leaving her – but I really had to go to the washroom, and couldn’t wait.

While I was in there, there was a huge crash, and my dog started barking excitedly. I thought maybe my mom had tried to get to her bedroom, and had knocked over the baby gate leaning on the wall in the hall. That happens often.

I got back to her as quick as I could, and found her on the kitchen floor, covered in spilled cappuccino. She was just starting to get up, and seemed highly disoriented. Our guess was that she had fainted – a mix of Gravol and Valerian she had taken during the night before seemed not a good mix for her. It was the first time she had taken the two together, and only the second time she had taken the Valerian at all.

Maybe that was it. She didn’t want to go to the hospital to be checked out. Instead she rested, and I worried for the day.

364 days. Three hundred sixty four days before, my Gryff also started falling over in the morning. I also looked at him in concern that morning. He fell, and I rushed him into the vet (well… I rushed, they left him waiting in the waiting room for his appointment, though they could see he was in obvious distress.)

He fell. I worried. He died anyway.

A year later, my mom fell. I worried…

Am I sad? Extremely. I absolutely did not want to lose my dog. Who does?

A year later, I was reminded once again how quickly everything could change – and that sadness grew to panic that has been with me ever since.

 

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Autism: Birthday Triggers

This weekend held the birthdays of both of my (foster) daughters. The eighth of each that I have missed since the adoption failed. For a time I thought I was doing okay this year. On both of the days in question, I spent the majority of the day outside working on my garden. I enjoyed myself.

As I looked closer, however, I realized that I was still triggered – it just looked different from other years.

For the last week or so, I have been experiencing panic attacks. They have been random in that I have had nothing going on to set them off. They have been unpredictable. True, each night as I was trying to fall asleep during this time, I have been panicky – which has kept me awake – but there have also been times during the day where I was fine, and suddenly was panicking (despite being at home and doing something I was enjoying.)

Above that, though I have been in a relatively good mood, all of a sudden I would be overcome with sadness and tears. Like pouring rain out of a sunny sky.

Other years, the days were hard, and my thoughts were ALL about my girls. This year, however, while I did think of them, the thoughts around the sadness were more focused on my dog and grandmother – both of whom died in 2016.

I guess that as time goes by… it isn’t that I’ve forgotten my girls, or even accepted the loss, but… the losses seem to pile in together like a snowball growing larger and larger as it is rolled along the ground. It is all sad, and it all hurts – but when the days come, though the timing is specifically about them, the thoughts are more generalized. I didn’t know that would happen.

So I got through another year – for all four of my children had their birthdays within less than a two month period. It wasn’t as hard, maybe, as I’ve experienced in previous years – but it is far from better.

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Autism: Shattered

In a moment, everything can change. This is true of life, as it is true of my mental health. One comment, one moment of awkwardness, one memory, and I can be plunged into despair.

It has been nearly twenty years. I would consider the summer of 1997 to be the hardest one of my life – though the summer of 2008 would come in a close second. Both contain memories that nearly destroy me every time they come, and they overcome me often.

That summer, my cousin got sick. She had been doing well, when suddenly she caught Pneumonia. With her Cystic Fibrosis, that was especially dangerous. The Pneumonia set off a virus that had lain dormant in her system for many years, and in six weeks, she was dead. She was 21. I was 20. She died on Canada day.

Most of my life all of us cousins had known that she and her older brother didn’t have a long life expectancy. It worried me, but that was always sometime in the future. Suddenly the present and the future collided, for the first time in my life, and it shattered me.

During the time my cousin was struggling in the hospital, our grandfather had a heart attack. When she died, he was in the hospital having a triple bypass. He survived the surgery, but had cancer, and died of complications just before Christmas that year.

My grandfather, my cousin… these were my family, and I loved them more than life. I don’t deal with any pain or loss well. That summer was impossible for me to well survive.

In the summer of 1997, my son was just over a year old. I was at home (on welfare, having never been able to even get an interview let alone a job, and being far too intensely anxious to live with my family,) so my aunt asked me to babysit her infant son while she went back to work. I had always loved children, and I had always been good with them.

Babysitting that summer, though, was a huge mistake. My functioning was extremely low that summer. I couldn’t think well. I didn’t respond well. I was so exhausted that I was literally crawling, unable to stand, much of the time I was watching the children. I didn’t know I was Autistic. No one did. I thought if I tried hard enough… but I failed, and in twenty years, I have never been able to overcome the failure of that summer.

That summer my son’s birth dad and I had split up. He hadn’t wanted us around, so I moved to an apartment across the street to give him space. Because I ‘left him’ he broke up with me.

And then there was my childhood dog. My parents were divorced. My dog went with my mom until I left home and she moved into an apartment where she couldn’t keep her. My dad took her to the townhouse where he and my older brother lived, until he moved to an apartment where he wasn’t allowed to have her. He gave her to a friend, who (without a word) dropped her off at the SPCA.

My dog (for good reason, though this had always been true of her) had bad separation anxiety, and couldn’t be left alone. She would howl, and tear things apart, and… My dad ‘rescued’ her from the SPCA, and my mom (being at home most of the time) took her despite the complaints she got when she went out.

Then my cousin died. And my mom decided (mostly because my dog had a lump that the vet said might be cancer) that she would be ‘put to sleep.’ Murdered. My mom asked me to come along – though I don’t remember the wording in that. It is the only bad thing I can ever remember my mom asking me to do – and I guess I went for my dog. I guess I went because I couldn’t think that summer. I guess I went and accepted it because that entire summer was surrounded in death and loss. I don’t really know why I went, but I did.

We walked her into the vets office a day after I had watched my cousin die. She was wagging her tail, full of trust for us as we went into the office. The memory is so traumatic that at least a dozen times a year for the past twenty years I have spent hours, often days at a time, crying for my dog. I never overcame it.

I was shattered that summer, and twenty years of striving, and counselling, and faith, and new relationships… twenty years and still the pieces won’t go back together.

Last night, after a decent day, I walked into the bathroom to get ready for bed when suddenly I was hit with this memory as if I had walked into a brick wall. I cried myself to sleep, with deep sobs of overwhelming pain, and woke up feeling much the same. My dogs and cat came to soothe my tears away, and I thought, “I don’t deserve you.”

Twenty years of being shattered, and everyone I have touched in twenty years has been hurt by the summer I have yet to overcome. Every failure. Every loss. Every struggle. All of it tied to the summer of 1997.

Twenty years. I should have lived it in isolation. I should have lived it alone. I do not deserve the love or the friends I have had, for always it ends in pain. I have tried. I have strived. I have worked so hard to heal. Yet twenty years later, I am still the same broken person that summer brought out of me.

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Autism: Future Plans

It has always been a struggle for me: planning for the future. Though it is something I think about often, it is not something I am able to see.

As a child, I prayed every night (I wasn’t raised Christian, but at that time we did say the Lord’s Prayer at school each morning, so I followed that example) that whoever ‘abandoned me’ to this world would come and take me home. When every night you go to sleep fully expecting to be ‘taken’ in your sleep, it is difficult to plan for tomorrow. It wasn’t a fear, but a hope; one that dulled over the years, but has still stayed with me to some degree ever since.

When I was a teenager, I was struggling so bad with post traumatic stress disorder that the majority of my time was spent trying to survive the moment, and to block out visions of the past that came every time I closed my eyes even for a moment. ‘Calm’ only meant I was able to block out the past to remain in the present for a while. During those years, there was no future (though my hope to remain was in having a child – not likely the best goal for one struggling so very much, but I am thankful for the child I was able to have.)

Then I entered my adulthood during the time of Y2K, and the movies “Armageddon” and “Deep Impact.” There was talk that the world’s end was imminent, with dates set any time from 2000 to 2014. Since I had a young son, I didn’t feel ready (he was to graduate in 2014 – which seemed far off since he hadn’t started Kindergarten at the time, but I wanted to see him grow up.) Most of my decisions – including where I would relocate to were based on this fear and surety. I would live to see the world end, and that was my future.

During those years, I was surrounded by a lot of death. Two of my cousins, my grandfather, and my father died so close together that though it was not planned, their graves are all together at the cemetery where they were buried.

The year 2000 didn’t bring forth the end of the world, but my cousin and my maternal grandmother both died shortly after, so the danger for me never really seemed to pass. That was also the year that I moved away from my family and across the country to a place I had never even visited before.

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It may seem to others that I was forward thinking to move across the country for work, but in reality I was running away. I was running from pain, and from fear, from failure, and from trauma. I ran from a large city in very close proximity to a major city, to a small town most people had never heard of where I was from. My options for work included Vancouver and Victoria – and those places are beautiful, but… tsunamis, and earthquakes, and terrorist attacks, and people. The place I chose was far from all of these, and not even close to a medium size city. Perhaps the ‘safest’ I could find – yet in all the years I have been here (nearly 17 now) I have never really gotten past the thought that the world could end at any moment, or that I might be ‘taken’ in the night, and not wake up here the next day.

So you see, before I even get into my Autistic struggles of seeing tiny details, but never seeing the big picture, thoughts on where to go from here are nearly impossible for me – and the thought that I might be here for a long time scares me more than the idea that the world might end tonight. So instead of making plans for the future, I surround myself with anchors that will tie me to the present, and make it easier to stay for another day, or another year, or…

But when the question comes to what I will do, or be, or become… to what job I could do, or where I see myself in a year, or in five years… There is nothing but fear. Nothing. And when I do get into a position that something might change (going to school, or getting a new job, for instance) the fear is so intense that I find comfort in the thought that the world might end tonight, and I might not have to go back

 

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Autism: Triggers

It was a Saturday afternoon, and we were sitting in the waiting room – my son and I. His small kitten meowing loudly in the crate on his lap. The appointment had been set. It was just a routine post adoption check up, coming just days after we brought Nicholas home. The day was snowy, the roads scary; so different from that hot summer day eight months ago (has it been eight months already?)

We sat in the waiting room at the vets office, and it was not lost on me that my son and I (by no preconceived decision) were sitting in the exact places that we had been on that day – and I looked to the floor where my dog had sat struggling on that day; that horrible day when I brought him in to save him, and went home in tears without him.

I looked at the floor half expecting to see him there still… and I did as my memory placed him back there. I did, but I couldn’t go back and save him. It wouldn’t have done any good – they couldn’t save him then. I looked at the floor, and expected to see the fluid from his lungs spreading out in a pool on the floor. It was an emergency – didn’t they see it? Why did they make us wait?

Trying to bring myself back to the present, I turned to my son’s kitten and spoke to his cries. “It is okay Nicholas.” It is okay. But it wasn’t. My heart was breaking sitting there, and I wondered if that place would ever bring hope for me again. I cried for my boy that I miss so much, despite the beautiful girls who have come to fill the gaping hole that he left behind. “I didn’t mean to leave you here, Gryffindor. I didn’t want to leave you.”

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I held it together until I got home, and then I fell apart. It took days to get over it… not really over, but to block it out again so it didn’t hurt so much. I used to be good at blocking things out – as a child – I had to be. The skill was dulled along the way, yet no less needed today. In order to live, I must be able to block these things out, but the triggers come. The triggers will come.

There was another winter day. I was working. The highways were closed in both directions due to accidents. Many people were trapped in town as they were attempting to drive through. The motel was filling up quickly. The entire town was filling up quickly, for there was nowhere else to go. I was alone at the front desk, with a lineup of people asking for rooms. Online bookings were closed, and I was given orders not to take phone reservations – there wasn’t time. First come, first served, and they had to be at our door.

I answered the phone only to tell people we had few rooms left – they had to show up. One phone call, a woman – “we’ll be there in five minutes.” Five minutes. Okay, I have a couple of rooms, and there was a moment of quiet. Five minutes. I can do that. “Good, I’ll have the social worker call to book it,” she said. “No! I am not able to take online bookings.” No time. I have my orders. I can’t do it. Dishonest.

Another call. “Are you going to leave these people out on the street just because of our little mistake?” Not mistake. I was clear. Manipulation. Lots of people being turned away tonight. Hate! I hate social workers. Hate them. So manipulative. Triggers. My father was manipulative, too. Really manipulative. As a result, all manipulation triggers me – even my own – and social workers, I have found, are the worst.

Tears, all night. Anger. Trauma. Two separate incidents (my childhood, and the loss of my children) that I still fight PTSD because of – and manipulation triggers them both.

Phone calls. Certain smells (like the smell of cigarettes on the clothes of smokers). Places. Moments when I feel overwhelmed (that happens a LOT!) Feelings of hopelessness, helplessness, powerlessness (like seeing videos of factory farming and animal cruelty.) Stories of evil. People dismissing my activities as not having value because I don’t get paid for them – judgment, criticism. People dismissing my struggles as unreasonable. Places that remind me of pain. All triggers.

And as I experience life, the triggers grow. I am less able to deal with life now at 40 than I was at 15, though I was being abused then – and my husband, though he does not understand, and though he dismisses my pain as unreasonable, is not a cruel man.

The triggers come, and I am overwhelmed with pain, and sorrow, and fear. It takes me days to block it, and I am only successful when no other triggers come. Just trying to hold on. Hoping I can hold on. Fearing I won’t survive it this time. Just trying to hold on.

 

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Autism: Inappropriate Response

My husband brought home China’s ashes last Friday. He handed me a paper bag, like a gift bag. “What is this?” I asked him. “China’s ashes,” he replied – but he let my dogs out when he came in and I had to go out and get them (they don’t go out alone.)

I carried the bag down the stairs, and was suddenly overcome with a desire to laugh. “What is wrong with me?” I asked myself as I stood outside of my son’s living room door holding a bag, containing a box, holding what was left of my son’s best friend – and trying to suppress a smile.

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Finally under control, I walked through the door and handed him the bag. He took out the box, and I took out the envelope, and read the “Certificate of Private Cremation.” “I never got this with Gryff,” I said – even though he had been privately cremated, too.

As I looked at the box, it suddenly became real that she was gone… in a box, a tiny box, and as with Gryff it didn’t make sense that one who filled so much of our lives could just be gone; all we are left with is a tiny box.

It didn’t make sense, but it did make it real – and that inappropriate urge to laugh was drowned in a downpour of pain. And the pain was overwhelming, but it would not come out – so I searched for a sad movie to watch, and I watched sad music videos on YouTube, and I cried: for I loved China for so long. I loved her so much, and I never wanted her to go – and that first week where I cried some, but laughed too much, has not made sense. China is gone – and it should hurt.

For the entire weekend between that moment and now, I have been in pain. It is right that it hurts. It all hurt this weekend – the loss of China, and Gryff, and my grandma, and my grandpa, and my cousin, and… the list grows, and the pain builds, and it should be that way. It should be. For this pain is the cost of loving them so very much – and I would pay it again to love like that again (but please, don’t let it be soon.)

 

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