Monthly Archives: July 2014

consolation

I debated on sharing this. I considered keeping it to myself but slept on it and decided it might help someone else grieving feel less alone.

This essay is being written with my left thumb only. I’m typing it on my cell phone, actually. And I am writing it from my mom’s hospital bed, snuggled up next to her and holding her hand as she sleeps.

i want to hold your hand...

i want to hold your hand…

That’s the news I debated sharing: I am laying in her hospital bed.

I thought that truth might be met with a level of horror or disgust, but as my mom taught me, the only opinion of myself that matters is my own. I found it necessary to lay here. It’s not just comforting to her, but comforting for me to feel her and feel her breathing.

Yesterday at this time I was on her other side doing the same thing but crying to the point I was convulsing. Her right sleeve was soaked with tears. My right arm was slung over her to hold her left hand (the only part of her with feeling left), and despite the fact that she cannot move much anymore, she used her thumb to pat my hand, like a hand rubbing someone’s back to console them. A universal, “It’s okay. It’ll be okay.”

I started telling her the stuff I’ve told her a million times but need to make sure she knows for certain. “You are the best mom and best friend I could ever hope for.” Things of that nature. But then I said, “I need you. Please don’t leave me.”

With her left hand, she very slightly but obviously enough signed, “I’m sorry.”

There is nothing for her to be sorry for, and I know it is only a matter of time before she must leave me. I cannot keep her or save her, and I know that. But from her hospital bed, despite her lack of speech and movement, she was trying to console me as she has for the last 27 years of my life. The truth is that I will always need my mom.

She signed “I love you” and finger-spelled “the” which meant she was saying, “I love you the mostest”. I repeated it back to her to confirm I understood and reciprocate the feeling.

She started getting tired, confused, and frustrated by trying to sign as her hand is starting to lose strength. But she nevertheless comforted the breakdown that I had tried so hard to prevent in her presence. And then she ultimately slept forba very long time.

I have been laying in bed with her for the last two hours talking to her and holding her hand. She hasn’t woken up for a second. The hospice nurse was also unable to rouse her. But I will continue to hold her hand and be here just in case she wakes.

My mom has always been there for me, even with her minimal time left on this earth. I’d like to think I’ve returned the favor and the love. I hope she heard everything. She’s somewhere in there. And her heart is in mine forever.

In the end, that’s the consolation prize.

Tori

P.S. If this essay is ridden with typos and autocorrect disasters, my cramping left thumb apologizes. I will correct them at a better time.

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an ode to a pup

Dear dog,

You are a maniac more often than not. You like to bark incessantly for reasons we cannot see, hear, or know. You still pee and poop on the rug in the master bedroom. You refuse to go the bathroom outside when you need to and demand to go outside when you don’t need to. You steal things and shred them. You are persistent for chicken, apples, and carrots. You have thousands of toys but always want the one out of your reach. And your tears stink.

But this is a love letter.

the little goober who brings me joy

the little goober who brings me joy

You have taught me the importance of patience with others and with myself. You remind me that we all make mistakes and that accidents happen. You encourage me not to sweat the small stuff. You demonstrate love and exuberance for every single person you meet without judgment. You’re still a kid at heart. Well, you’re technically still a puppy so you’re still a kid in general but you get the point.

You bring me on walks and I find peace in the dog park you adore. You remind me how important playtime is. You’re willing to try everything. (By the way, please stop eating the flowers on my squash plant and licking the lotion on my legs. The squash plant is dying and the lotion is not safe.)

You let me hug you all the time and you give me kisses when I’m crying. You’re always excited to see me even when I don’t feel lovable. You clean out my nose when it’s running. I still find it gross but oddly helpful. You keep me warm, as tiny as you may be. You make me laugh by the ridiculous noises you make when you’re playing and ruffing in your sleep. You warn me when you hear something that doesn’t sound right, even if it’s Ray moving around plastic bags. You preferentially love your nana. I know how lovable she is, so I don’t blame you, but I also think you realize she’s dying and needs your love.

You are making me a better person. You’re such a good girl. So thank you. Even if your tears stink.

Tori

surprises

Happy birthday to my best friend and the best mom on the planet! Yes, I may be partial. But I’m also honest and unafraid to say the truth.

Last year at this time, we threw a huge surprise party for my mom’s 60th birthday. Turning 60 is huge. Turning 60 despite a terminal diagnosis is huger. That doesn’t sound like it’s grammatically correct, but apparently “huger” really is a word. Regardless. Every decade or even every five years requires a gigantic celebration.

pictures and memories always make good gifts

pictures and memories always make good gifts

Anyway, she had no idea about the surprise party last year, but it made her incredibly overwhelmed and happy. We went over-the-top just in case it was her last one. Never in my wildest dreams did I expect for her to hold on for one more year to celebrate her 61st birthday.

She specifically requested “no party” this year. She meant, “Please don’t do anything elaborate for me.” I don’t think she’s ever believed she has deserved the love and attention of others, but I also know that she is genuinely too tired for a crowd now.

My mom had a few visitors today. She received a magic wand that changes color that she played with for a while. She had (was fed) half of a chocolate peanut butter cupcake. But first, she made a wish.

happy thoughts

happy thoughts

Last year was a huge surprise for her. This year was a huger surprise for me. But really, every day has been a celebration.

By the way, Mom, your wish was mine.

Tori

this is what glioblastoma looks like

This is what glioblastoma looks like:

this is good i can talk      tvo dad vpattcccccicccceerybodyi lbgoveyouthemvvvvvvvvvvbostest

iloveyou xthe  mbvvbovvvvvvvvvvvvvvvvvvv

i love you the mostest

It took my mom ten minutes to type that. I had to get the computer for her, as she is bed-bound. I plugged it in for her, opened up this blog to find a scratchpad, made the font size as large as possible, got her glasses, retaught her where the backspace, enter key, and letter “L” were, and waited. She used the pointer finger of her left hand, because her right, dominant side no longer works. She hit lots of wrong keys. She got frustrated, and she didn’t stop. I knew what she was saying, but she wanted it to be perfect. She was persistent.

She’s found workarounds every step of the way. We found a new way to communicate. She taught me the ASL alphabet when I was little which became our secret language as she lost her voice. She can hear, only if you speak slowly, loudly, and make the letters exaggerated with your lips. You must face her, because she has learned to lip-read. She had the “ah-ha” moment today that perhaps she could use the computer. And that’s what she typed.

patience and persistence

patience and persistence

I am so proud of every little victory she makes. I am so proud of her for kicking statistics in the dirt. The average life expectancy for patients diagnosed with glioblastoma is twelve months. Twelve. A year left on this earth if you’re lucky. And that was twenty months and two weeks ago. Tomorrow will be her 61st birthday.

Glioblastoma will try to rob my mom of every faculty. My mom cannot stay awake for long. But she was awake for a little and typed that.

So I typed this. I am sitting next to her hospital bed watching her drift off to sleep, but I had to type this. I am so proud of her. I cannot tell her enough.

I love you the mostest, Mom!! I always have and I always will. I am so proud to be your daughter and to be able to call you my mom.

Tori

letting go

There’s this notion in Buddhism about impermanence: nothing can last forever. I think that’s not only true but necessary to accept, whether or not you’re a fan of Buddhism.

I write this entry as a rambunctious puppy named Coconut (or Coco-nutso) currently lays sound asleep across my lap, preventing me from sitting upright without squishing her a little. She’s snoring-snorting every now and then. When she sleeps, she’s heaven. Silent, peaceful, at ease. But at some point, she wakes.

She requires constant attention, and if she doesn’t get it, she barks until you give in. Her favorite toys are those that are loud. Extremely loud. Or toys that don’t belong to her at all. Playthings like my underwear, tissues and other assorted paper goods, the vegetable plants that are beginning to flower, and so many other seemingly safe objects. Anything at her short puppy-height stature is irrevocably hers and at her disposal.

She’s ruined plenty of things. My husband’s leather wallet that probably tasted like a bacon-flavored treat which now has a corner of bite marks. Our rugs, which she believes to be pee pads since they’re softer on her derriere. Mail which we never read and never will be able to again.

And as a former perfectionist who took immaculate care of every item in my possession, I can say truthfully and happily, it’s all okay and I accept it.

None of these things would last forever. They came from something that was impermanent and became something else that was impermanent. The cattle that became the leather, the cotton that became the rug, the tree that became the mail… And when they’re recycled, reclaimed, or reused by the earth, they’ll be something else again.

The things Coconut has destroyed are minimal, but they serve as a metaphor for something a teeny bit more important but no less impermanent.

DSC_6701

my mom with coconut, or coconut with her nana, both happy

My mom is dying. She has Stage IV glioblastoma that resides in the right hemisphere of her brain and over half of her brainstem. She has lost her ability to move, speak, hear, feel, and live without multiple people assisting her at all times. She has hospice to make her transition as comfortable as possible.

And now I realize something: they call it a transition for a reason. She will not just cease to exist. She will become something else, in something else, in body, and in mind. Her heart is a big part of mine, and if I am so lucky to have a family one day, her heart will become a part of theirs too. One day, her body will be a part of the earth and become something new. A flower on a farm in Pennsylvania, a mourning dove by our bird feeder, and a piece of coral on a beach in Bora Bora, perhaps.

She is not mine to keep. She is not even hers to keep. To think that any of us could prevent her from transitioning would just be selfish. The truth is that all of us are dying a little bit everyday, not just her. I know I’ll transition one day and I hope more than anything I come back on a shore in Bora Bora with her.

Tori

here we go

I finally made a blog. A lot easier than a novel. Maybe people will read it. Maybe people will enjoy it. Maybe not. It’s too soon to tell, but my fingers are crossed.

I considered majoring in journalism, but I chose a career in healthcare like so many in my family had before me. I wrote poetry privately in college and shared it with two people total. A guy friend who also liked poetry and my mom. She said I was a good writer, so I didn’t believe her obviously. My husband knows I like to write and claims I’m good at it, so naturally I didn’t believe him either. He claims my cooking is good yet I often burn dinner, so he’s got a way of putting things in a positive and partial (and he’s just too nice to be true) light.

One day at work, my coworkers and I entertained ourselves by writing fake love letters (well, emails) to one another to spoof a seemingly creepy suitor-flirt’s interest in one lovely lady in our department. From that, they claimed I should write. I thought that was code for that email was funny but I’ve decided to cave to the encouragement.

Look, Mom! I’m writing! This post is going into the Neverland of the internet, and I hope to the high heavens (or nirvana or Elysium) that someone out there likes it. Someone beyond my mom or my husband. Or my coworkers. Because I’m starting to think they’re just being partial too. So here we go…

DSC_1429

one little buddy at a butterfly house on a good day with my mom

Tori