Goodbye, Daddy...I love you.

My father is dying.

Those words are hard to type, even more difficult to say out loud, but they are true no matter how much I wish they weren't.

Last year, at age 54, he was diagnosed with Stage 4 prostate cancer, which had metastasized to his bones. With some aggressive chemo, they told him he could add a year to his life, and my father went full speed ahead, doing everything the doctors asked him to do. He didn't tell me and at first, when he finally did, I remember being so angry because that's how he had always been... stubborn as hell.

We've had our issues over the years but when I found out, I did everything I could in order to ensure I could be around him more. Moved an hour north from where I was living with my husband, until I was only a twenty minute drive from my father, and I did see him more than before. Problem was, life gets in the way. Even with the best of intentions, I didn't see him as much as I wanted to.

And my father, he would talk to me on the phone, tell me everything was good. I believed him. He finished the chemo, they told him it was gone from his prostate and next they wanted to work on his bones. I remember things a little differently than him, but he insisted he had it under control, and as much as I tried to bring up things that would help in case something happened, my dad always acted like he had all the time in the world.

He thought he did. Hell, even I did. Sometimes I would call him and worry, but when I would stop over, he would be talking about how he was working on something in his house he bought last year, or something outside. Talk about his appointments, what was next, and complain about how he felt like he was spending every day of his life in the hospital for one test or another. One issue after another, but he was taking care of it, and he finally did let me get him a will drafted up. I gave it to him, told him to make sure he got it signed, and he promised he would. And not even took long ago, he took a trip with a friend of his to West Virginia. He was walking, talking, driving, and acting 100% his normal self.

Then, Thursday... I had a rider that took me near his place and I decided to stop by. I hadn't heard from him in a week, but before that, he had told me he was taking the trip with his friend, so I couldn't come over like we talked about. It wasn't anything new; he often called me to tell me he wouldn't be home like he thought and we made plans for another time.

How could I have known any differently? I've asked myself that question a million times since Thursday, when I walked into his house to find him laying on the couch, confused and disoriented to the extreme, his ankles so emaciated that I could almost wrap my hand around it and my fingers nearly touched. He had lost so much weight from when I last saw him a couple weeks before and although he was talking to me, his thoughts and words were jumbled, him misunderstanding me enough to get angry because he thought I was arguing with him. My uncle, who my father takes care of because of difficulties, told me other than helping him up to the bathroom, my father had been there for 5 days and had barely eaten.

With the help of my other uncle, who came over to help, I got my father to the hospital, where we were told his levels of calcium and uric acid in his blood were causing the confusion and they would try to get it down. But I knew... I knew the moment I saw him that this was it, especially after he told me not even two weeks before that he needed an MRI because they thought the cancer had spread to his spine, as well as the cancer being back in his prostate, but it never got done.

Friday morning, the doctors told me the cancer was aggressive, now appearing even in his bone marrow, and there was no coming back for my father. They could try to lessen the confusion, but he was going to die, and they recommended hospice and comfort care.

My father is 55. Only 55 fucking years old and right now, he's lying in a bed at hospice, alternating between peaceful sleep and restless time awake where he's barely aware of the world around him. Until tonight, I've spent nearly every moment with him from the hospital to the move to hospice, barely able to leave him for an hour without needing to go back and remain close, but not tonight, because as much as I want to be there for him until the end, things in my life must be taken care of as well -- including my own self.

And I am in so much pain, I thought this being the only way I could express any of it. Because I love my father. As a child, I adored him, despite all the issues between him and my mother. I never saw him as much as I wanted to and by the time I moved in with him at 17, too many things had happened for our relationship to become easier. On and off through the years, when I was actually near home because my running away never let me stay gone long, (and before my diagnosis) I would stop by to see him...and he would hurt me. Never intentionally. My dad didn't think before he spoke. He never knew how much the things he said about my mother (and therefore me) hurt me, although sometimes things were even directed at me, under the guise of "joking."

I just wanted him to love me, no matter how much he hated her.

Lately, I've heard stories from family...all these family stories of how kind my dad always has been, how he took care of his mother (and he did, until the day she died two years ago), how he takes care of my one uncle, and he's always been a good spirited, tough, stubborn man. And I know some of that...but I never saw much of it. My dad told me he loved me more in the last year than he ever had before and while I believed him, it hurt knowing all those years I didn't see him, for one reason or another. Years I can't get back. Years where I've told people about how I used to ask my dad if I was pretty and he would laugh, take a sip of his beer and say, "Yeah, pretty ugly." And now as an adult, I know he wasn't serious, but he never thought about the fact I would take him seriously... literally. How I would internalize that message from him despite the fact he never actually wanted me to think that about myself.

As his child, I have always loved him regardless of how hard things became, but I didn't want to be around him a lot. He drank a lot, and he smoked like crazy, something that contributed to my avoiding him because the smoke gave me migraines. We disagreed on a lot of things, but when I found out he had cancer, I wanted nothing more than to be closer to him. My sisters, they got a different father than I did. They lived with him, while I saw him a lot less, and I think I've spent most of the last year trying to make up for something I had no control over... something that really hurt our relationship going into my adulthood because there was a precedent of not enough contact already, compounded by my issues from autism and the abuse I had experienced.

My memories of him are colored by my life and relationship with my the snippets of time I can remember being around him. I'm sure I hugged him as a child, but I don't remember. I'm sure he told me he loved me, but I don't remember. What I do remember is the moment when my mother came to pick me up after I had gotten "run over" by a truck (well, my legs did) and my dad stood outside the van with the police officer, who asked him if he had a license and when my dad produce his driving one, the police said no, a medical license. All because my dad had listened to me, crying my eyes out about going to the hospital in the ambulance, and didn't make me get in, but he also hadn't taken me to the hospital as he should've (something that's made me wonder, since my diagnosis, of perhaps my father being on the spectrum, which I will never know for sure now). I remember my dad giving me a sip of beer when I was younger and I spit it back in his face. When I close my eyes, I can see him through the years, sitting on the couch with a cigarette in one hand and a beer in the other.

All those and more, imprinted on my mind, and none of them mean anything now.

Instead of focusing on my grief, I've been trying to get a handle on his affairs, as much as I can without power of attorney, and that means my eyes tear up, but I can't give into it. I have to take care of my uncle, I have to make sure my dad's house is taken care of because he wanted our uncle to live there, and I definitely can't break down because I've got my own life with bills to pay that won't wait even in the face of my pain.

Not even as I stood by my dad's bed earlier today, where he doesn't even recognize me when he opens his eyes, and I ran my fingers through his hair, telling him how much I love him. Trying to keep him calm; answering his mumblings even though I don't really know what's saying. Promising him I'll take care of things as he would want them taken care of, doing my final duty as his daughter that will carry on long after he's taken his last breath, even though he left a bigger mess than he intended because my father never signed his will. He got a life insurance policy last year but the short period of time means, despite his best intentions, we'll never see most of the money; I'll be lucky enough to have enough to get him cremated with.

Although it will make things more difficult, none of it matters. Not as I've been watching him waste away in front of my eyes and feeling utterly powerless to stop it, to do anything as one of the men I love more than anything else in this world slowly leaves me behind with a gigantic hole in my heart that will definitely never be repaired now.

But other than the small amount of times where I can't be by his side, I will be there holding his hand until the very end, giving him all the love and attention I can while hoping he knows somewhere deep inside that I'm still with him. That all his family is there for him. And I hope he knows how much we love him, how much he'll be missed, and how despite my own pain, I'm so glad he won't suffer any longer.

Every time I think about how he will soon take his last breath, I'm nothing more a little girl once again, crying for her daddy as he leaves her behind. Only this time, it's for good, and this ache in my chest won't ever go away.

Update: my father passed away on September 10th, not even 7 hours after I made this post. RIP Dad.

The Exhaustion of Autism

One of the hardest things for me to deal with as an autistic person is people not understanding what life is like on a daily basis. Nobody has any idea how much energy goes into ensuring I don't mess up too badly or that I "get things done" when they need doing. Well, they might, but many people in my life didn't until I received my diagnosis, and even then, it's hard for them to understand sometimes.

In 2016, I wrote a blog post called The Exhaustion of Autism, and today, I'm sharing the post again (with some slight edits to make it more general audience appropriate!) because this is one piece that really means a lot to me. I've also added a bit to the end. This expands on what being autistic can be like for someone. I hope you enjoy and thanks for reading.

Ever been so tired after a busy day that you sit down and before you know it, you’re waking up out of nowhere and it’s the next day already...when you weren’t even finished with the day before? This has been my reality since I was young. A few hours of an activity that didn’t involve being at home, and for the next day or even two, I’m so tired I can’t do anything except lay around and sleep. The exhaustion of autism is real and tangible in my everyday life.

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I am not perfect...

These past couple of weeks have personally been hell for me.

I don't tell you any of this for your sympathy or pity. In fact, I write this blog for me and share it because if something I write helps even one person, I'm glad. Overall, though, this is where my feelings about things go, and yes, it's about my writing and my personal life and anything else I feel like including at the time I make a post.

But, back to the hell.

For the most part, I spent the week following my emergency surgery lying in bed. Okay, I kind of had to for some of it, but otherwise, I didn't get out of bed unless it was to go to the bathroom or shove something resembling food down my throat. I cried, I raged internally, and I even probably picked fights with my husband. (I did.)

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