Category Archives: on change

perspective

About four years ago, I talked with a random pharmacy grad at the Midyear conference in California who I was interviewing with about my dream about going to Paris. How I’d wanted to go my whole life. How I had a photo of the Eiffel Tower on my wall with Audrey Hepburn’s quote, “Paris is always a good idea.” How I had heard the John Denver song, “A Country Girl in Paris,” growing up and felt it resonate so deeply within me.

Up upon Montmartre when she stops to rest awhile,
all the artists look at her and they long to paint her smile.
For even in her sorrow there’s something in her eyes…

I had Montmartre on the top of my bucket list before I knew what bucket lists were, because I was so confident it would lift my sadness somehow. I pushed myself so hard in school to the detriment of my happiness. And then worse in high school. And then worse in college. So I held this deep belief through all of those years that there was something waiting for me up upon Montmartre that would be so profoundly uplifting, none of it would matter anymore.

Back to the point. The girl at Midyear. She said she shared that dream but felt like a trip to Paris needed to be with someone you’re in love with. It’s too romantic not to. She was right, and I kind of hated her for being right. But Paris would be put on hold. Finishing school and finding a job were more important then to make all the hard work worth it. I was at Midyear to find a future for myself. Besides, there was nobody on the horizon.

And then a couple days later, it was time to go home from California to Massachusetts and I met Ray at the airport. And then I was seated next to him on the airplane. And that was the start of us. Indeed, Midyear made me find my future. All of a sudden, I not only had someone on the horizon, I had the love of my life and my husband.

i can't believe this was a year ago

i can’t believe this was a year ago! look how handsome he is. good god, that smile.

We were going to go to Paris for our honeymoon, but given the fact that our wedding was planned in a whirlwind, we wanted something relaxing. Ray had the perfect idea of going to somewhere with a nice beach for our honeymoon, and Paris for our first anniversary. That first anniversary will be here in three days.

We waited on actually booking the trip. We obviously knew what date and week it would be, but my mom’s health was declining. Quickly. Drastically. And yet she was still holding on. What would happen if she passed while we were gone? But she kept urging us so many times, like her final wishes for me and Ray were to be happy and to travel. “You have to go to Paris.”

I should be way more excited than this. I should be ecstatic and happy like she wanted. We’re going to Paris! And yet somehow, it doesn’t feel right. I’ve had that city on a pedestal for so many years, but I’ve never felt so sad in my life with my mom gone. I’ve mentioned canceling the trip to Ray too many times to count, but he and every other person I’ve talked to said we need the getaway. You need time offYou ought to get away from here. You can always go back. I know, but I just want to feel happy there. I just want my mom here, really.

Somewhere along the way, I forgot the thing I’d always held to feel to be true.

Up upon Montmartre when she stops to rest awhile,
all the artists look at her and they long to paint her smile.
For even in her sorrow there’s something in her eyes…

Perhaps Paris will lift all the sorrow from my mom’s passing. So that the light that has come from my first year of marriage to the most amazing man by my side. There is nobody I would rather share that happiness with by my side, and he is the only person that could hold me together through all the sadness that’s come through my mom’s sickness and passing. Through sickness and in health. In good times and in bad. Whatever the traditional vows are. I vow all of it still. Ray is impeccable and I’m lucky as hell to have him in my life, let alone to be married to him.

I’m going to the City of Light with the source of so much light and happiness in my life, that it’s got to outshine the sorrow of my mom’s passing. Or as dear friend encouraged, instead of mourning my mom’s death, we’ll go in honor of her. We’ll celebrate the fastest year of marriage filled with the highest highs – got married, went to Tahiti and Bora Bora, bought a house, made it our own, became puppy parents, brought my mom to the Grand Canyon, planted her a garden – and lowest low I can ever imagine. And if we made it through that, we can make it through hell, because we’ve already been there and survived it together.

this guy. this guy is the guy i get to kiss for the rest of my life. even when my hair does insane things.

this guy. this guy is the guy i get to kiss for the rest of my life. even when my hair does insane things.

Ray, here is to you, to us, the life we’re building, the adventure we’re making, and every happiness the world can provide. Thank you for your love and support during the worst days of my life. Thank you for the promises you made to me on our wedding day, for the promises you made to my mom, and for keeping them. I love you and hope we find whatever it is we’ve been looking for up upon Montmartre. Even if it’s a new perspective.

Mom, in one day we’re going to make you so proud. You’ll be with us in spirit.

Tori

the fault is not in ourselves

I read The Fault in Our Stars before it became a movie and fell in love with Hazel Grace, Augustus Waters, their relationship, their wisdom, and their story. I read it despite the fact that my mom was losing her battle with cancer and that it would undoubtedly be a huge trigger for me. I suspected one of the two would pass away before the end. And yet I couldn’t put it down. I was so deeply affected by Hazel and Augustus that I recommended the book to anyone who would listen.

That includes my mom. I encouraged my – I’m going to say it – dying mother to read a very real and raw novel about dying. To show her that she could still live her life, to let her know that life goes on, and to show her how some infinities are just shorter than others.

We went grocery shopping together one afternoon. While pushing her in a wheelchair and somehow hanging a basket on my wrist, I saw it on an endcap display and impulsively added it to our pile for her. It didn’t occur to me until after checkout that it could have been a mistake.

What if it makes her cry? What if it breaks her?

But it was already too late. She started reading it when we got home and got hooked on it off the bat. She was quickly turning the pages and grasping what she read, which was a relief, because her dexterity, vision, and level of understanding were already shoddy. The book makes a very difficult topic seem simple and bearable. And my mom seemed to love Hazel and she wanted to know what happened in the end.

My mom continued to read the novel on our front porch while my husband and I worked in the garden in front of her. We had a picnic on the porch which is one of the few times she actually put the book down. She was able to feed herself yogurt at that point. I think I had a granola bar while sitting on the porch floorboards next to her. It still counts as a picnic.

During the break, she said she didn’t really understand the title, so I tried to explain to her what I thought about it. How I’d read that it was a nod to a Julius Caesar quote. Shakespeare wrote, “The fault, dear Brutus, is not in our stars, but in ourselves, that we are underlings.”

I told her I think that the author is eloquently calling bullshit. I said, “It means it’s not your fault at all, Mom. Nobody chooses to have cancer. You did nothing to cause or deserve this.” She gave a slight smile and continued reading.

I decided it was a good answer. Looking back, of everything I ever did for my mom, making sure she knew that is something I will rest and grieve peacefully with. My mom had confided in me several times already that a family member yelled at her when she knocked things over, spilled her drinks, choked on food, had trouble hearing, and did other things that were a direct result of the tumors in her brain. It was never her fault and I tried to make sure she knew that. I told her she could throw food at the wall if she wanted and that nobody should care if food gets on the floor. The dog would actually welcome that, so have at it.

Anyway, when the summer sun was too warm for my mom’s very reactive skin (a side effect of chemo), she read her novel on the couch and fell asleep with it on her lap often. She was sleeping more often. She took naps frequently. Even while she came in and out of her slumber, I loved being next to her. But when she was reading, I noticed she started missing pages because they were too thin to separate for her fingers and she was rereading chapters towards the end over and over again. Maybe it’s because she didn’t understand them. Maybe it’s because she forgot where she was. Probably a combination of the two. At some point she did claim she finished it though. And she said she loved Hazel. Hazel has the same tenacity as my mom did, so I don’t blame her.

That was the last thing she ever read independently.

What’s my point? One evening just before or just after my mom had finished the novel, the family member who blamed her for things out of her control started putting her down for who she was as a person and decisions she had made long ago. The person said how she wasn’t careful enough around breakables again. I spoke up. I said how she had told me the put-downs had been happening, how she had asked me not to speak up, but how I wasn’t going to let it happen anymore. It’s like she was asking me for help but trying not to get the person in trouble both at the same time.

Anyway, as much as I would have defended her, I didn’t need to. My mom fired back at the bullying family member, “It’s not my fault at all. That’s what it says in the book. Nobody chooses to have cancer. I didn’t do anything to cause or deserve this.”

And for a second, the bully shut up. The comments ultimately resumed and my mom’s new self-assured stance was ultimately worn down again by said comments, but for that one moment, she stood up for herself. I owe The Fault in Our Stars for that. And I’m really proud of her.

This topic might seem somewhat random for anyone reading this, but the novel is fresh in my mind after watching the movie adaptation last night. The movie changed some parts of the book, deleted some characters I’d hoped would be brought to life, and left out some smaller details that were really important to me, but it still made me sob just the same.

It was an ugly cry too. For approximately half of the movie. The kind where the snot is pouring out of your nose, you don’t have a tissue, and there’s so much junk leaking from your face you have no choice but to wipe it on your sleeve. Not that I wiped it on my sleeve. Okay, I wiped it on my sleeve. And then my husband offered me his sleeve and just held me.

I’m really glad I didn’t bring my mom to the movie. I was going to. But by the time it came out in theaters, she wouldn’t have been able to hear it, read any closed captioning, or stay awake through the whole thing. I’m also glad I didn’t see it in the theater, because it would have been one hell of an ugly cry in public. But I’m really happy I saw it last night. Even if it was painful. “That’s the thing about pain. […] It demands to be felt.”

That’s kind of the point of this entire blog too, honestly. The quote “you know it meant something” came from from Peter and the Starcatcher. Which plays off of the First Noble Truth of Buddhism that says, “Life is suffering.” If something is worthwhile and meaningful, it’s going to hurt when it’s gone. Losing my mom has been devastating to a lot of people, so you know her life meant something grander. So I guess that means it’s an honor to be hurt by her loss. It’s supposed to hurt. Because it means I knew her. I was created by an astonishing woman.

My mom treated underdogs and alpha dogs the same. I think that quality was one of her most inspiring. She was nonjudgmental, respectful, and supportive to everyone. She loved everyone equally. But somehow she didn’t think she deserved the same respect. The evening that I witnessed her stand up for herself the first time in my vivid memory was life-changing. And somehow I’d forgotten all about it until last night.

I owe The Fault in Our Stars for a wonderful memory amidst a devastating time in my life. For helping both a victim of cancer and the daughter she left behind.

I guess that’s my review. Two thumbs up. Go read the book right now. And watch the movie. Cry all you need to. Be moved by them both. And no matter what, keep your chin up.

Tori

things that no one told me

On Valentine’s Day in 2009, I lost my grandpa. My mom and I each held one of his hands as he passed, with almost all of his surviving family members surrounding him too. I lived through the death of my father figure, slipped into a deep depression, withdrew from my passion (I gave up ballroom), and somehow continued going through the motions to survive college. I started seeing birds everywhere, especially when I really needed him. A hawk circling above me when I was walking around a desolate part of campus and I was all by myself. A hawk outside a hospital window. A chickadee that hopped up to my car window when I was lost somewhere in Connecticut and pulled over to find my way. It felt like he was around. And I still had my mom. I still had her so it wasn’t as hard as losing her too.

Losing him was like a dress rehearsal. He had Alzheimer’s and was in his mid-eighties, so it was bound to happen soon-ish. My mom was diagnosed with her highly aggressive brain tumor at the age of 60. I didn’t see it coming. None of us did. Not even by a long shot. If she lived her life expectancy, it meant I had 12 months to prepare for her passing. She lasted 21 months, so I should have been prepared.

But no matter what anyone tells you, no matter how well you think you’re ready, you’re not. Even if you’ve made it through all five stages of grief and come to acceptance beforehand, you’re not going to be ready. You never will be ready to lose them.

There are some things I wish I had known, though. Things that I had to find out by myself through the experience. That I wish I hadn’t had to learn by myself. Like I could have prepared better had I been told.

You will look for things.

Like with my grandpa, I looked for meaning with my mom’s passing. After my grandpa passed, I saw birds. After my mom passed, I saw feathers. Tons of them. After never noticing them before. And a dead lilac bush that my mom picked out that all of a sudden had blooms right after she passed. Some people find pennies, dimes, butterflies, rainbows, orbs of light in photographs, phantom smells of cigars, or visitations from their loved one in dreams. Hope. That’s what they all are. Hope. You will look for hope.

You will also look for and try to hold onto things that meant something to your loved one. A favorite necklace. The newsboy cap he always wore. A very specific photograph. The missing pedal to the damn sewing machine that’s somewhere in the things left behind. Somewhere in their stuff. You’re going to try to hold onto whatever meant something to them, because by extension, it means a great deal to you.

You will not be able to say the words “die” or “death.”

My big sister at work who lost her brother a year before I lost my mom pointed this out after realizing I cannot utter these words. Apparently, she was unable to say those words about her brother too. I use euphemisms alone. “When my mom passed,” “since she’s left us,” “now that she’s gone,” I cannot say “she died” even though she did.

It sounds too final. It means the same, but it’s not. The euphemisms make it sound like she went somewhere. Somewhere better or safer perhaps. I cannot and will not make it sound like her life just stopped. Because it’s got to go on somehow. You have to too.

Driving by yourself will be the worst.

I thought I was alone in this one, but after speaking to several others who have recently lost loved ones, this is a truth across the board. Driving to and from work will be excruciating. Your mind will wander and you’ll have no one there to distract you. For me, I called my mom every single day on my way to work. Every single day. Even when she started losing her hearing and speech, I still called her. At some point I had to stop because her hearing and speech were so bad, so I used that period to try to get used to the fact that soon, I wouldn’t be able to call her. And it didn’t matter. It didn’t prepare me.

Driving is excruciating. It makes me hate going to work and even hate coming home, because it means that I have to spend 30 minutes behind the wheel to think. About her. And it sucks.

You’ll find other weird, unexpected triggers that really aren’t weird at all. Like a certain song, his cell phone, or the smell of her favorite flower. Something inconspicuous will open the floodgates. At unfortunate times too. Like at your desk. Or in the middle of a meeting. Or at Hallmark. Or behind the damn wheel of your car.

People will surprise you.

Some people will disappear on you. Some may even become downright nasty for some reason you will never know. They’ll cast stones for their own amusement with no regard to how you’re already breaking inside. Whatever you do, do not let them hurt you. Just walk away and protect yourself from their negativity. No matter who they are. Because nobody deserves to be treated like dirt when they’re already going through hell.

On the plus side, you’ll find out a hell of a lot of people care about you and your wellbeing. People you barely know. People you’ve never met. People will come out of the woodwork. You may even make new friends like people who share similar experiences and are grieving too. Let them in. Know you are not alone. Even when it feels like you are.

Your coping skills will be put to the test.

Have you had trouble with insomnia before? You probably won’t sleep after she passes. I can’t tell you the last good night’s sleep I’ve had. Dabbled with unhealthy solutions to mask stress before? You will find yourself relying on your drug of choice or at least thinking about it. Like caffeine. You know, to counteract the exhaustion from your insomnia. Have depression? Be prepared for possibly hitting rock bottom. I’ve never felt this sad. Or alone. Even though I’m not. But it still feels like it.

You might have healthy coping mechanisms. Meditating, talking to friends, admitting you need help. Just know it’s okay to take an antidepressant or see a counselor if you need one. It’s okay to ask for help. However well or not well you’re coping, it’s okay. You’re not weak or undeserving. You’re just going through a rough time. And it will get easier one day. I promise.

You will need bereavement days. Ones dedicated to the services and ones dedicated to you.

I took five days off immediately following my mom’s passing. A full workweek, and I thought it would be enough. I had also hoarded PTO prior to her passing in case I needed more than whatever time my company would give me but was too stubborn to use it.

My mom’s wake was on a Thursday evening and her funeral was a Friday morning. Every day before the wake, I prepared for it. I put together her slideshow and photos. We met with the funeral director and the priest. I didn’t really get off the couch. But still. I was preparing for the services.

However, they were really traumatic in themselves. The wake made me paralyzed. Everyone was in beautiful, vibrant colors as my mom wanted. She looked beautiful and somehow a little alive. But it took me almost four hours to be able to look at her. The funeral and the weird reception thing after were exhausting. I was so tired. Mentally and physically. After the services were over, I needed more time to heal and not think about anything far, far away from work. I wish I took more time just for me. It’s okay to need time. Please take a little (or a lot of) time just for you.

You must take care of yourself. Okay, everyone told me this, but I didn’t really listen.

Let that one sink in for a minute. I’ll say it again. You must take care of yourself. Try to eat well, get out in nature, go for a walk, take a fun class, explore your artistic side, get to bed at a decent time, and do whatever it is that makes you happy. Please try to be good to yourself. You will be under an enormous amount of stress and hardship. You must take care of yourself.

Remember that your loved one would never want you to suffer. My mom wanted two things for me: to be happy and to travel. I try to remember that when I’m sobbing hysterically.

Everyone told me this. Everyone told me to take care of myself. And they were right, so I’m telling you. Be patient with yourself. Try your best to get by. Ask for help if you need it. Find things that matter to you. Try to keep living. Breathe in, breathe out. Talk. Listen to the birds first thing in the morning when you can’t sleep. Call a friend. Call me. I’d like to be there for anyone grieving. Just know you’re not alone.

Tori

truth and the bright side

There was a story in the news about a woman in California who battled cancer and passed away at the young age of 61 like my mom. She passed away just three days after her son’s wedding. After dancing with her son at her son’s wedding when she barely had the strength for anything else. She got out of her wheelchair to dance. To the same Hawaiian version of “Somewhere Over the Rainbow” that my family danced to at my wedding.

That hits a little too close to home for me. It’s way too familiar.

I’ve been told by several people that I do not share much about myself upon first meeting others. I pick and choose the safe things to share. I wait until I really trust you. And then I spill. And you’re sworn to secrecy.

So here’s some truth. I loved Ray before we even went on our first official date. I think I actually fell in love with him on the airplane when we first met. I’ve never felt so giddy and calm, nervous and confident, scared and hopeful at the same time. I’m not talking about lust, although Ray is beyond handsome. I’m not talking about puppy love, although we were both kind of still kids at the time. We kind of still are. Regardless. I’m talking about real, down-to-the-core, feel-it-in-your-gut, crossing-your-fingers-and-toes-it-will-last, honest, and pure love. The first time we met we talked about the future, we learned we want the same exact things in life. And I’m talking very specific things like getting married, having a family, living on the water. Important stuff. And scary stuff. Within hours of meeting. The stuff you don’t typically spill upon first meeting someone. Looking back, I have never trusted someone so immediately and fully as I trusted Ray with my truths and secrets.

Anyway. Fast-forward about two years of dating, moving closer to each other, then basically living with each other. Sure, we talked about the future. I think we talked about getting married around our third date. Someday, we’d get married. But at the beginning of November 2012, we weren’t actively discussing marriage; it was just a truth for us.

And then my mom got diagnosed with her brain tumor. She got diagnosed November 6, 2012. Ray couldn’t have been more *there* for me. For my family. He brought refreshments. He tried to calm my mom down and explain things to her in a not-so-scary way. He had to work while she went in for surgery, but he got there just in time for the surgeon to deliver the news. That she couldn’t get all of the tumor, that some of it was touching a blood vessel, that it looked “diffuse” which was a term I remembered from school that actually meant “not well defined” which meant “very bad” as far as tumors go. He just held me as I had a visceral reaction of retching and puking into a trash can in a library holding-cell where they keep families. He couldn’t have been more there for me.

A very wise friend once told me that tragedy makes us more of who we really are. At the time of my family’s tragedy, my boyfriend became my knight in shining armor. He became more him: more comforting, more assuring, more positive. When my mom had finally come home that month and I was sleeping at Ray’s apartment, I remember sobbing that one of my biggest fears was that I would never get to have my mom at my wedding someday. That I never really dreamed of my wedding as a little girl, but that the one thing I was certain of was that I needed my mom to walk me down the aisle. That I had one year left with her per statistics, and none of it would happen.

I don’t think Ray intended on making marriage a reality at that point in time. Okay, that statement is a weak version of the truth. Ray did not intend on making marriage a reality at that point in time. And I know that times are modern and I know that I could have proposed too, but I wanted to hear it from him. That night at the apartment, we talked, I felt like I was pressuring him into proposing, I felt like a pathetic and whining little girl, but my unprecedented and compassionate boyfriend said we would get married by the next fall. It was already the end of November. Spring would be too soon to plan a wedding, summer might be too, fall could work, winter would be too cold, and the following spring might be too late. We’d get married in fall of 2013. And that was that.

We picked out the engagement ring in December. Ray sat on it for a couple months to “surprise” me. And we got married in October, just under a year from the time of my mom’s diagnosis. We got married, as planned. With a full-on dream wedding as planned. Just sooner than planned. And my mom was there. She walked me down the aisle and we even danced together. And we never told her that we planned the wedding as quickly as possible so that she would be there. She asked why we were planning it so quickly, and we said we just really wanted to tie the knot as soon as possible. For no other reason than that.

The wedding day was perfect. Everything I ever could have asked for and more. I think Ray feels the same. But it was also incredibly bittersweet. Celebrating one of the happiest days of your life with the worst day of your life looming in the near future. A race against time, to be sure.

my mom was my something blue

my mom was my something blue

That was almost a year ago. My mom has passed since, as we kind of knew she would. Ray was even more supportive during her passing. He held her hand on car rides, helped with her activities of daily living, permanently invited her over our house for a vacation to the beach, and spent every single weekend with her with me. He even promised her that he’d take care of me before she left us. And Ray and I are approaching our first full year of being married. I’m married to the unprecedented, compassionate, comforting, assuring, positive, handsome, and wonderful man I met on the plane. I could not be more happy with him. My secrets and my truths are safe with him. Being able to marry him with my mom present was more than I ever could have hoped for, but especially when her diagnosis was a constant reminder of time ticking away. Ray fast-forwarded his life plan to help my dreams become reality. And I am forever grateful for him and his love.

If tragedy makes us more of who we really are, it just means I am more in love with my husband. And I’m talking about real, down-to-the-core, feel-it-in-every-fiber-of-your-being, uncrossing-your-fingers-and-toes-because-you-know-it-will-last, honest, and pure love.

Tori

tear-jerk reaction

I’m having a hard time missing my mom. Today was a particularly rough day. I’ve been having a lot of them. So I finally finished this video for my mom to do some good instead of crying. Although it also made me cry…

Please enjoy and then go live!

Tori

to cope

My big sister (my coworker turned friend turned “we’d like to be roomies” 40 hours a week) lost her real life brother unexpectedly just over a year ago. She sits a foot away from me now and I shimmy behind her chair when she’s not looking. And we talk a lot.

She said something hugely profound a week or two ago when I was upset about my mom. I was saying how I felt like I had been prepared for her passing, but it hasn’t been the case at all. It hurts too much.

She said how it sucks, but one day in the future, it will be easier than the day before.

Is that what coping is? The process of getting to that day?

Apparently cope is from the Latin capa, meaning cape or cloak. My husband was a Latin scholar. His name in class was Romulus. Adorable per usual. I’ll pick his brain on this sucker when he gets home from work, but I’m going to try to work this out. I refuse to think coping is just covering up the underneath, however messy it is.

The psychological definition is “to deal with and attempt to overcome problems and difficulties” and variations of that sort. To deal with problems. In the medical world, we talk about coping skills, defense mechanisms, stressors, the stages of grief, and more. So it’s a little bit of all of that. But there is definitely a wide variation in the stressors and problems we must face in the world. Is coping after the death of a loved one the same as coping during small, potentially good changes?

Maybe. Maybe getting over the loss of a loved one can be easier than it seems right now.

In architecture, coping is defined as “the top layer of a brick or stone wall that is usually higher on one end than the other to allow rain to be carried off easily.” I am not an architecture buff or even a novice beyond the fact that I think that the Eiffel Tower is heaven, so I looked up pictures of this one. The capping off of a wall to allow rain to be carried off easily. Think about it. It’s kind of poetic. Protection against the storm.

It makes me think of the song called “I’ll Cover You” from the musical Rent. It’s sung between two lovers about protecting and loving the other. “Live in my house, I’ll be your shelter…” But what if it wasn’t sung between two people and instead it was between good coping skills and well, you? And what if you didn’t have that shelter over you or the storm got too intense?

I think my big sister was spot-on when she said that one day it won’t hurt as much. One day, my coping skills will be stronger than the storm. Or maybe one day the storm will pass with time alone. I hope that day comes soon.

Tori

P.S. Kathy, I apologize for shimmying behind you. I do it out of love. I don’t know what I’d do without you.

the greatest plans

It’s no surprise that my mom has passed. I posted a lot about it any chance I could, always with an optimistic spin. Photos of her doing the best she could at communicating from her hospital bed. Photos of her beautiful smile that clearly showed how skinny she had gotten on chemo or how swollen she had gotten on steroids. Mentions of proud I was of her for how strong she had been doing despite the circumstances. All of it was true. She did the best she could, she was beautiful (inside and out), and she was strong. But I also meant for every photo and post to serve as a heads up to those who didn’t really know her story about her decline. A literal status update that she wasn’t doing so well. And also a way to trick myself into believing it was all okay. I wanted to be okay.

The reality, of course, is that I was mourning deeply inside from the day she was diagnosed. I still sobbed at her funeral, but a lot less than I expected, probably since I had cried for the 21 months before that. But I am so tired of crying.

I want to be okay, but keep getting caught up in the cry, “It’s not fair. This wasn’t supposed to happen.”

And I finally realized something.

Things happen every second of every day that weren’t “supposed” to happen. We can try with all of our might to plan and control the future. Our hopes and visions of the future may keep us motivated and moving forward, but life tends to get in the way. Deaths of loved ones, unplanned pregnancies, life changing injuries or illnesses, meeting right people at the right time. Some may think that’s an odd combination of bad and good, but really, they’re just types of change. The label you slap on each as “bad” or “good” is subjective.

My mom passed, and that’s bad. It’s unfortunate. It sucks. And it wasn’t supposed to happen, at least not in my grand view of the future. I always thought I’d have kids and she’d be the most awesome grandmother to them. I promised her I’d never put her in a nursing home. That she’d taken such amazing care of me, that I wanted to be able to return the favor and have her move in with me. I held onto this hope and was so excited about it for my 27 years on this earth. Perhaps it kept me moving forward a little, but the fact that she isn’t here anymore to fulfill that hope doesn’t mean I can stop moving forward towards the future. She’s not in my future anymore, but the impact she made on my life will always be with me. And just because she’s not here anymore doesn’t mean my future won’t be wonderful.

I keep forgetting the quote the title of this blog came from: “It’s supposed to hurt. That’s how you know it meant something.” As long as we live, love, and have deep meaningful relationships, one day, we will also hurt and miss the people we loved tremendously, because nothing can last forever. None of us do.

Some people avoid intimate relationships out of the fear of being hurt. I was one of them. I don’t think I trusted anyone enough to let them in and potentially break my heart. Meeting Ray changed that. He has the heart of my grandfather, so I knew I was safe with him. I am safe with him. I am grateful for him for helping me let my guard down and so much more. Regardless, one day, one of us will pass first unless we’re the adorable old couple at the end of “The Notebook” that pass together. One of us will pass first, and the other will have to cope and carry on. One of us will hurt. And that’s a good thing.

I don’t need pain to know that I loved my mom deeply, but it definitely validates just how much she meant to me. She made me and is the reason I am the person I became. She was inspirational to me. My role model long before she became a warrior against glioblastoma.

She’s not here anymore, but I am. I may hurt, but I need to keep going. During her life and especially during her decline, she always said she wanted two things for me: to be happy and to travel. So I’m going to try and do just that, even if she’s not here to see it.

Ray and I are finally going to Paris in October, Mom. I hear it’s beautiful.

Tori

it’s getting late

I won’t pretend it’s been easy losing my mom. I have uttered, “It’s not fair. I need her,” countless times. But I would have said the same if I lost her when she was 100 years old too.

I’m not the first person to lose their mom, their best friend, or someone they love with every fiber of their being. I will not be the last. I am not special with regard to the fact that I just endured my mom’s passing, wake, and funeral services. I am not a professional at loss, grief, or coping. I actually kind of suck at all the above. Or maybe not entirely like I thought I did. I’m going to make a bold affirmation here: I am really proud of myself for how I have handled my mom’s sickness and death.

I’ve spent a good chunk of the last 21 months since my mom’s diagnosis trying to figure out which is harder: knowing you’re losing someone or losing them abruptly without warning. Knowing how much time they have left or being obliviously and blissfully unaware. I’ve gone back and forth with the pros and cons too many times to count.

On one hand, you get to say what you need to say and help your loved one check some items off of their bucket list, while carrying the burden of knowing they only have limited time left each day. In November 2012, we thought my mom would have one year to live after her surgery because the average life expectancy of patients diagnosed with glioblastoma is 12 months. She obviously did better than that, but it didn’t change the fact that I had a countdown going in my head of how much time I had left to spend with her. This April, we were told my mom only had weeks to a couple months max left, and I spent every day worrying even more than before it would be that day. Quite honestly, at some point I actually hoped it would just be over already. Not because I ever wanted to lose my mom, but because I hated her being scared and knowing her end was near, a nightmare looming over her days. I have cried more days than I haven’t, I have had far too many panic attacks that became asthma attacks, and I still wailed at the funeral home even though I thought I was prepared for her passing.

On the other hand, you go blissfully unaware through your days and all of a sudden, the person you love just isn’t there anymore. You fear they were terrified, you worry they were in pain, you regret the things you said or didn’t say, you ruminate over the things you did together or didn’t get a chance to, and one day you just have to get used to life without them. Like a bandage being ripped off of a wound you didn’t really know you had before. (I must post the disclaimer that I have never lost someone in such a manner, so I don’t actually know how it feels. I think I’d crumble, feel regret, and cry either way though.)

Anyway, after weighing the pros and cons, I think the answer is that both options suck equally for the people left behind. Either way you will lose someone that meant the world to you and you will have to live without them. No matter what, you will grieve. You will cry. You will wish you had more time. You will wonder if you said the right things, did enough, and showed your love enough. You’ll probably deny the truth, get angry, bargain, get depressed, and come to acceptance just like Elisabeth Kubler-Ross said you would.

Expected or unexpected, their deaths will one day come, as will yours. So why not just keep that truth in mind and start living whatever time you have left fully. If you love someone, tell them, tell them how wonderful or beautiful or hilarious they are, tell them how you don’t know what you would do without them. Show your love, give your time, and make every second count starting now. Be a better friend, partner, parent, child, and person, and don’t wait for a terminal diagnosis to start doing so.

That way, expected or unexpected, when their time comes, you will have no regrets. You will still cry over their loss, but you will also be able to smile at their memory, sleep with a clear conscience, and know you did your best. A short life may not be an incomplete one and a long life may not be a full one. Quality and quantity are not the same. But we’re all the same. We all have expiration dates, and some of us know them, while some of us don’t. Yet, we’re made of the same stuff and the same baggage. We all go through trauma and fear and crap. And none of us are special in that regard.

So let’s hold each other tight and enjoy however long we get together. Go give the closest person to you a hug. And if there’s nobody in the room, call a friend and tell them how much they mean to you. Before it’s too late.

sunset at the grand canyon, a trip we helped my mom check off of her bucket list

sunset at the grand canyon, a trip we helped my mom check off of her bucket list

Tori

somewhere over the rainbow

I write best when I’m reflective. Now would be one of those times.

My husband’s mom, dad, and brother came to visit yesterday to help us get out of the house and be here for us. They couldn’t have come at a better time.

We got the news that my mom had one or two days left and to visit quickly. We rushed right over. My mom hadn’t opened her eyes in over a day, stopped eating and drinking, and was breathing erratically despite the oxygen pumping in from her nasal cannula.

I got to speak privately with her and say everything I needed her to hear. My friend and coworker who happens to be a former hospice nurse had told me hearing is the last thing to go, so I firmly believe she heard every word. I reminded her of the great times we’ve had, how strong she’s always been, and how it’s okay to rest now. I told her I’ll be okay and I will try to live a happy life, because I know that’s what she’d want. I told her my husband will take good care of me and his family will too. I guess he told her the same thing; so did his mom. I told her we will go to Paris this autumn. She kept insisting we go there and have a croissant for her.

As a side note, I have to admit I have kept Ray’s family at arm’s length while my mom’s been sick, especially his mom, and I apologize deeply for that. I have been afraid his mom would take my mom’s place, because deep down I knew my mom would pass soon, and if Ray and I ever had kids, they’d never know my mom, but they would know her. I shared a lot with Ray’s mom before we got the news yesterday: the baby clothes my mom and I picked out if we should ever have kids, the baby blanket my mom hand-sewed for me growing up, good stories, and more. And I realized she loved my mom too and just wanted to be there for me. She told my mom, “I know I can’t be the mom you have been to Tori, but I promise we’ll take care of her.” I can’t thank her enough for promising that. To my mother-in-law: I love you and thank you. You’re an incredible mom and person.

Anyway, the oxygen converter was incredibly loud and there was too much stimulation in the room. I talked with my mom and told her I was going to make it more comfortable, something I’ve been trying to do since she’s been sick. I grabbed a photo of us in New York City for her to hold on to until I came back and slipped it under her hand. Then I got to work.

I asked Ray to come back in to help me. The tubing and electrical plug for the converter luckily reached outside the door, so we got it out of the room. I turned the TV off and hid the remote control so nobody would disturb her. We dimmed the lights. I asked Ray if he could find some soft music, but then decided the sound of the ocean would be best. He found an eleven hour stream of the sound of waves crashing on the beach which we left next to her. I told her, “We couldn’t bring you to the ocean, so we brought the ocean to you.” That’s her happy place. I mean, that was her happy place. I still don’t know the right tense to use here. She looked so peaceful.

Ray suggested we go home to get some sleep, as otherwise I’d be hovering over her all night. We grabbed some Asian takeout food on the way home, although hunger isn’t something I feel anymore. I nabbed a fortune cookie and hoped for a good one. “The greatest meditation is a mind that lets go.” Remembering the truth of impermanence, it couldn’t be more fitting.

I needed to go to sleep soon after we returned home. This has all been emotionally exhausting, and I don’t have much energy anymore. Ray’s parents and brother apparently cleaned our house spick and span while I was passed out. I am so thankful for his family and their being here yesterday. For hugging me yesterday especially. Everything happens for a reason.

At some point in the middle of the night, Ray woke me up and delivered the news. My mom stopped breathing around 11:45pm. She had passed. I wasn’t there when it happened, and that’s okay, because I don’t think she’d want me to see her like that. She was protecting me still.

I think I cried a little when Ray delivered the news, but right now it feels more like disbelief and detachment. I knew this time would come and I have grieved and cried ever since she was diagnosed in November 2012. I’ve tried to keep her happy and comfortable since then, and I can rest easy knowing that.

As I told her last night, she has fought so hard for so long, it’s okay to rest now. I promise I’ll be okay. I love you the mostest, Mom. Always have, always will.

You earned your wings.

Tori

In loving memory of Margaret Mary Baczek, July 23, 1953 – August 2, 2014

“Somewhere over the rainbow bluebirds fly…”

I do not have wake or funeral information yet, but I can tell you a few things. When talking about my mom’s final wishes, I told her how in some cultures, they consider passing a time of celebration for one’s life, not a mourning of their death. They even wear bright colors. She loved that sentiment and wanted it for herself. She would like everyone to wear colorful clothes, not black, to her wake and funeral and to remember the good times.

Also, in lieu of flowers, she wanted everyone to consider making a donation to the National Brain Tumor Society in her memory. Here is the link to her memorial page: www.braintumorcommunity.org/goto/MargaretBaczek

Thank you, everyone, for your continued happy thoughts, prayers, kindness, and consideration.

the most beautiful person in the world, inside and out

the most beautiful person in the world, inside and out

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.