Defining death. To a child.

I love words. I love reading and writing and hearing peoples’ stories, and telling them, myself. Anyone who knows me will freely say that I’m not often at a loss for words. I’m finding, though, that as a parent of a nearly three-year-old child, ¬†attempts to describe or define the meaning of words and actions often leave me without the means to accurately convey a concept. To be sure, some of it is developmental; small children are not the most abstract thinkers. But beyond that, there’s a desire to shield him from the ugliness of the world, at least for now, while still making good on my values to raise him in honesty and reality.

As we walked through the cemetery in our neighborhood yesterday afternoon, I thought of my mom, as I often do, and that I should visit her grave. It’s been awhile; I have a hard time ascribing meaning to that space. I asked D if he wanted to visit Grandma Patti’s cemetery, and he said yes. He immediately started chattering as we walked home, about seeing her, bringing her some of the chocolate strawberries his dad had made for me the day before. We talk to him about my mom a lot, show him photos, tell him stories, to help him understand her importance in our lives. It broke my heart to listen to him, knowing that I needed to try to explain the reality of the situation.

We got to her grave, and he smiled, recognizing my mom and dad on the etching in the headstone. “Is Papa Steve coming here, too?” he asked. I told him no. A car pulled up, and he stood, wondering aloud if that was Grandma Patti. He really believed he was going to see her. I took a breath, and asked him to sit with me. I said, “Grandma Patti isn’t with us anymore.”He asked where she was. Knowing that he attends church with his other papa, I tried to use terms that he might have some concept of; “She’s an angel now. She’s all around us. She watches us.” He just looked at me. I finally decided to try to level with him, as leveling with a three year old is always the smart choice (ha ha). I said, “Honey, Grandma was really sick. There was something in her body that made her very, very sick, and it made her heart stop working. We need our hearts to live-so we can breathe, and play, and be with other people. She can’t do those things anymore. Her body didn’t work, and now it’s here, in this ground, to be kept safe. This big stone helps people to remember who she was, and lets us come visit her and think about her.” The entire time, I kept telling myself to stop talking, to stop being so pseudo-biological and blunt about it.

He listened, looking at the ground and running his fingers through the thick grass around him. “She’s in heaven?” he said. “Yes, baby.” “Oh.” For a moment, he looked like he might start crying, and I regretted all of it. Enough of us had shed tears over her loss, and I didn’t want him to take on that burden. Not yet. He never even got to know her, just being held by her once, when he was three days old. And then she was gone. But, I think he understood, as much as his three year old abilities would permit him. “You miss your mommy, Mom?” I blinked back tears. “Yes, I do.” He gave me a little smile.

We started to get up to leave, and I said my goodbyes aloud to my mom. He followed my lead, and said, “Bye, Grandma Patti. I love you and miss you. The doctors will come and fix your heart to work again, and you will come back to life”, blowing her a kiss. More blinked-back tears. That innocence over the permanence of death, the desire to make someone else feel better, made me both incredibly sad and happy at the same time. He’s trying to understand how others feel, while learning to manage his own emotions within those contexts. That’s a hard thing, something that most of us struggle with well into adulthood.

As I drove home, him watching a show on my phone, I thought about what happened. Maybe it was OK that I shared what I did; after all, life does not exist within an absence of conflict and sadness. I want him to grow with the understanding that it’s OK to display emotion, to communicate pain in a constructive manner. Maybe he can’t really grasp the concept of death, but he can understand sadness and hurt and love. Something that my mom instilled in us was empathy, and to truly see people and their complexities, even if they aren’t on full display. This experience with D yesterday made me hope that perhaps I am starting to lay the same foundation for him, to help him intuit what is in other people’s hearts, even if he can’t fully know what has hurt them.


Wherein I ask for a favor from you guys.

Whether you know me personally, or a reader of my blog, you know that I lost my mother to cancer, in 2013. It was a horrific ordeal, and honestly, it’s the only thing in life that truly was as awful as I imagined it would be. Actually, it was even worse.
My point is, no one should have to experience that. As a patient, or as a loved one, watching someone waste away. Cancer is insidious, and non-discriminatory, but there are incredibly significant strides being made to combat it. But that requires funding. Funding to continue research, trials, and preventive screenings, among other things.

So, that’s why we formed a Relay for Life team. If you’re not familiar with Relay for Life, you can learn more about it here. Members of my family, friends, and extended circle are working to fundraise for the American Cancer Society.

And this is where you come in. We are seeking donations for our team, and I am hoping that you, dear readers, can help us out. Every little bit helps move us closer to our goal, and closer to better treatment and support services for those living with/affected by cancer.

If you feel moved to contribute, you can do so here. Thank you in advance for helping us out!

For my mom.

I lost my mom last week. Fifteen months of battling lung cancer that spread to her bones and kidneys, and it finally became too much for her. I knew on the very day of her diagnosis last year that this would take her, and the manner in which it would do so, and so I began to prepare. We all watched as she dealt with the side effects of her chemotherapy, losing a startling amount of weight, her hair, as well as her normally endless energy. We almost lost her last year after her first round of chemotherapy left her so weak with pneumonia that I still don’t know quite how she survived it. I often felt frustrated at the universe for giving my mom so many “sick days”, when I would see other women out shopping with their friends and daughters, clearly battling some sort of cancer, but healthy enough to enjoy life regularly. My mom didn’t get that. I remember telling her that, and her getting upset, having taken what I was trying to say the wrong way. She thought I was blaming her. I wasn’t, I was trying to communicate my sadness for what she was experiencing, but that was the nature of our relationship. Contentious, edgy, misunderstanding each other around every corner.

I never understood who she was, thought she had no interests or hobbies, wondered silently throughout my life why she didn’t “get a life”-go out with friends, cultivate interests, be her own person. In turn, she often felt that I was uptight, had self-absorbed interests and ideas, and I believe that she often thought that I believed I was smarter than her. In fact, she said as much to me, a few years back. During what I thought was a pleasant conversation, she suddenly erupted, “You think I’m stupid, that I’m not as smart as you are.” I remember confusion being replaced by shock, and my dad quietly suggesting to her, “That is your thing, not hers. She’s not implying that.” Our conversations were frequently a near-miss.

In all the horror of her illness and death, there was a beauty in learning about who she truly was. My mom DID have interests, joys and hobbies-her family and friends. She loved my dad with her whole heart, and never wanted to be a day without him. And each of us, even me-she worried endlessly about our happiness, even if it came out wrong sometimes. “Call or text me when you get there”, she say to me as I left town for work. I would roll my eyes, and say, “No, Mom..I’m a grown woman, I’m not going to do that.” I wish now I had just appeased her anxiety, and said, “OK, Mom”. Her passion and caring often erupted from her in a loud voice, and I would shut down, feeling “yelled at”. She was just trying to convey how much she felt what she was trying to communicate. In the last few months before her death, I spent many days caring for her, and while it broke my heart to have to remind her multiple times about why she was taking medication, or to wash her bald head with “that soap that smells so nice”, I feel so lucky that I had that time alone with her, for us to really connect for the first time, to talk about life and what her greatest joys were, what she would miss. She worried endlessly that she wouldn’t meet Dempsey, and it made me so happy on the day that she was able to rub his little head and kiss him. I feel at ease knowing that she died knowing how much I really did love her.

In the days after her death, there was an outpouring of stories from my mom’s friends, family, co-workers and students about her impact on them. The common thread in all of them was that she made them feel cared about, accepted, worth something. Despite all our differences, I always knew that my sense of social justice, of inclusion, of doing the right thing came directly from her, but I was humbled at the far-reaching impact this seemingly simple woman had on so many people throughout her entire life. I can only hope that I’ll have half the impact on others that she did, that I will raise Dempsey to be a man of strong moral character, with a heart of love to offer the world. Those were her gifts to the people that she loved, and even now, I can feel those things all around me.

To everyone that has shared their love and support with our family over the past year and a half, and particularly in the past week-thank you. You will never know the gratitude that we feel. Each of you has been a beautiful tribute to my mother, and her life.


A bit of gratitude.

I feel better when I write. I’m not always the most verbally articulate person when it comes to naked displays of emotion or concern, so I put pen to paper (or fingers to keys, as it were) to try to make sense of things. And I wrote about my mom’s illness yesterday, because I needed to lay it out in front of me, to take time to put my thoughts into conscious, organized words that did justice to what we’ve experienced thus far. As I expected, it released a lot of the frenetic energy that has set up shop in my spirit. What I did not expect, however, was the outpouring of love and light and good thoughts from those who read it-my family, my friends, and acquaintances whom I may not have spoken with or seen in years. So, to all of you, I extend my deepest gratitude for the kindness you have shown my family and me. It’s in these moments, that I am reminded of how connected we are to one another, as a people.

In keeping with that, I also feel the need to recognize the staff at University of Rochester Medical Center/Strong Memorial Hospital for the care that was provided to not only my mother, but to my father and me. From admission to discharge, the level of skill and care and support that was given was nothing short of exceptional. And I am not merely talking about the physicians, mid-level providers and nurses. I am also talking about the therapists, the environmental services team, nutrition staff, transport, and every other staff person we encountered during my mom’s time there, who may have offered a smile, small talk, directions, or a laugh. Strong is where I began my nursing career, and I have always been proud to have worked for such an amazing institution. Our time and experience there on the other side of things only reinforced that pride. My approach to nursing practice has always been that one should provide care for patients and their loved ones in the way they would expect themselves or their own family to be cared for, and I am infinitely grateful that my mother received that sort of care from everyone. It definitely made the difficulty of the time there a bit easier for everyone. I am always humbled by the graciousness of strangers.


“It’s cancer.”

There sat my mom, on her hospital bed, digging through that overstuffed purse of hers. After two weeks of having a hard time breathing, she was admitted to the hospital. That morning, she had a bronchoscopy, which revealed a tumor in the airway leading to her left lung. I had just walked into the room to see her, and out it comes, very first thing. “It’s bad. It’s cancer.” Like she was saying something as simple as, “It’s Monday” or “It’s so nice out.” Matter of fact. No tears, no real discernable fear, just those three words. Even though I had been steeling myself for this all morning (and really, for the past few days), it made me dizzy. In typical Patti fashion, we were being no-frills about this. “I’m just going to fight this as hard as I can, and that’s it.” Back to digging through her bag. I looked at my dad, who was looking at me, presumably trying to gauge my reaction. Nodded my head. I went into the bathroom and cried, grateful for the loud fan that was muffling the noise. It struck me as almost laughable that after quitting smoking nearly five weeks ago, this is happening now. What horrible luck. Now can’t be the time to ruminate on such things, though. My parents need as much of their stress absorbed as possible, I have three younger sibling that, while adults, I feel the need to support and guide through all this, and everything is about to get busy. And difficult. Maybe it’s the nurse in me kicking in, to help me refocus my energy from fear, to action.

I went back out, and I asked my parents if I could tell Kate when I met her in the lobby, and they agreed, so I went down to wait for her. The anxiety that surrounds having to tell someone such a horrible thing is unbearable, but I was glad to shoulder that burden for my mom, maybe it would make it a bit easier for her. I can imagine that when you’re scared and still processing information yourself, sharing it with others is probably nearly impossible.

Katie came, and I asked her to sit down. I explained the events of the past few days, and told her that our mother had lung cancer. She stared for a minute, and then began to cry into her hands, her tears sneaking through her fingers and dripping onto her pant legs. In that moment, my heart hurt, because I saw her as she was at nine or ten, not as she is now. We went together back to my mother’s room, and I think being able to see her, and see what great spirits she was in made her feel better. The four of us had a good afternoon together. My dad stayed the night at my house, and all night I slept fitfully, constantly listening for his horrible snoring, to know that he was actually asleep, and not up worrying.

My mom is back home now, and despite the addition of oxygen, is getting back to her regular routine. She will find out next week where she’s at in terms of staging, and her treatment options. It’s difficult to wait, but there’s also an odd comfort in at least knowing why she hasn’t felt well. I’m not sure what the road ahead will look like, but I do know that this illness has one hell of a fight to come up against, in my mother and the medical team she has in her corner.

And if you could offer up a kind thought, good energy, a prayer, whatever it is in your heart, it would be greatly appreciated.