It's so hard to know what to say or do when you care for someone who is living through a difficult circumstance. It doesn't matter if it's divorce, illness, family stress, death, or something else . . . sometimes it just flat out sucks.
As Emily McDowell and Kelsey Crowe, Ph.D., state, "there is no good card for this."
Maybe you are familiar with Emily McDowell's Empathy Cards, which she designed "for the relationships we really have." This book is more of the same - sound guidance from two women who have lived through those sucky times. Reading this book is like sitting down with a trusted friend and getting the real scoop. It's relatable, candid, and as breezy as writing on this topic can possibly be.
Emily and Kelsey write about the three touchstones of showing up: kindness, listening, and small gestures. They share from their own experiences as well as from those who participated in the research to bring this book together. It's heartfelt stuff. It's really accessible. It's not at all intimidating, thanks to the humor and credibility these great ladies bring to their writing.
One of my favorite parts was the guide on page 95 called "What Kind of Nonlistener Are you?" The authors identified five types of nonlisteners and courageously shared their own tendencies.
Honestly, there are so many phenomenal quotes, tips, and passages in this book I feel I'll take in and appreciate something new every time I read it. It's that good.
In short, I think you'll love it and put a lot of miles on it. Please read it before you need it, because trying to figure out how to support your friend who is hurting at the moment she needs help is hard for both of you.
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I borrowed www.angelovolandes.com/the-conversation/The Conversation: A Revolutionary Plan for End-of-Life Care by Angelo Volandes, M. D. from the library. It's now sitting in my Amazon shopping cart, just waiting to show up on my doorstep. It's that good.
The Conversation refers to a discussion about desires for end-of-life care. It's based on four areas.
This isn't an easy discussion for most people and the author offered several tips for starting The Conversation. He also included four additional questions for those who are already ill.
We all need to think about these questions, and the sooner the better. We need to share our wishes with our family. We need to talk with our medical practitioners. We need complete the paperwork to support our wishes and decisions, which may include advance directives, living wills, and identifying health care proxies.
Dr. Volandes illustrated the importance of The Conversation with stories of his experiences as a physician. He shared stories of patients and their families who wanted every life-prolonging intervention available as well as those who opted for comfort care. These real-life examples were vivid and relatable.
One of Dr. Volandes' achievements was the production of a video to help patients and their families make decisions about end-of-life care. This is a topic that is uncomfortable for many people, including health care professionals. The video contains information about the available options and facts related to each. For example, the video explains that fewer than 10% of patients with advanced cancer who receive CPR in the hospital survive and eventually leave the hospital. Fewer than 10%. Dr. Volandes found that so many people requested full code / advanced CPR because they believed their lives would be relatively enjoyable afterwards, even while hospitalized. They didn't know they'd likely be on ventilators with several broken ribs and a steady stream of pain medication that rendered them unable to interact with their families.
Whatever your current state of health, please consider starting The Conversation with your family. Dr. Volandes wrote about a couple who had known each other for 50 years, yet the type of care Dr. Volandes believed the patient wanted, based on his conversation with him, was very different than the type of care the patient's wife advocated. She said, "We never really spoke about this." Take the time to talk about it now.
How do you want to live?
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The room was dark when I walked by. Nurses were bustling in and out, and although it was a quiet scene it was chaotic. I made my way to the end of the hall to take solace in the view of the park while I waited. I was there to photograph the last moment's of a newborn's life.
The floor-to-ceiling windows gifted an expansive look at the old growth trees in one of the city's oldest parks. I could see children playing at the playground. Adults walked with their dogs. Several people in scrubs were walking quickly along the trails to catch a quick bit of exercise and fresh air before returning to the hospital.
Behind me the quiet chaos continued. A nurse approached me to let me know they were taking care of a few more things and she'd come for me when the family was ready.
This newborn boy, who arrived in the world the day before, was releasing the fragile grip he had on life. The chaos in his room was primarily for his mother, who was recovering from his C-section and overcome by the physical, mental, and emotional anguish of this reality. The nurses were doing everything they could to take care of her so she could be cognizant and comfortable during her son's final moments.
While all of this was happening, I stared out the window. I felt very small. Here I was, standing alone in the hallway listening to hurried footsteps that carried bodies and brains that saved lives. I was surrounded by people who every day change lives with the care they provide. They were working so hard to make this last day the best day they could.
All I had was cameras.
I couldn't save their son and yet they asked to see me. I couldn't relieve her pain, and yet she wanted me to come.
It was the first time I felt so insignificant as a photographer and a person. I felt like an intruder.
The nurse returned for me, shared a few words about baby's condition, and asked if I needed anything. The family was ready.
Before I knew it I was standing in that very dark room. The chaos had ended. Dad held his son and Mom sat next to him in her wheelchair. A family member stood against the wall opposite Mom and Dad. They asked the nurses to leave so they could be alone with their son. Alone with their son and a photographer they had never met.
Thank goodness for training and habit. I introduced myself and asked my usual questions of "what do you most want to see?" and "what do you not want to see?" without thinking about it. From different angles and distances I documented this precious boy's hands and fingers, feet and toes, hair, eyes, and everything else that wasn't obscured by monitors or other equipment. Dad held his hand. Mom stroked his foot.
I returned to the window to center myself when I left the room. I couldn't save their son and that was crushing. How wonderful it would be to tell someone that I had been able to perform some life-saving feat. What I could do was save a piece of him.
With photographs I could give these parents a small piece of forever. I could show them everything in the moments I was with them - the moments that were both glacial in pace and passing by in a blink.
With photographs, these parents can save their son. They can save this part of him. They can keep their memories of him and the time they had together strong. If there is only one way he can be with them as they move through the rest of their lives, I am moved to tears to be a part of that. I can give them this gift.
It's not life. It is a piece of forever. I hope that helps.
I see, hear, smell, and feel a lot of things that I'd never wish to be a part of any family.
I can't tell you what it's like to see the crash cart come in for a 19-month-old boy who has lived in the hospital his entire life. CPR is a brutal activity, and it seems all the more savage when a man straddles a 21-pound boy on his hospital bed and performs chest compressions with every fiber of his being. What is it like to watch your child die and be powerless to help? How does your brain even process that? How do you breathe?
I don't know.
And I don't know how I am able to anchor these parents as they bob about in this sea where the currents are constantly changing and yet there is often no land in sight. I can't explain any of it as it's happening and I need some distance to be able to process it days later. It amazes me that in these moments I can do what I am there to do, and that's document life and love. Sometimes that's the end of life. Sometimes it's the very last breath.
What looks like the end to outsiders is a beginning. It's a new normal of living without a child. It is a string of missed milestones - simple stuff like learning to hop on one foot as well as graduating, getting married, and having a family. I'll return to them for his services, graveside and memorial. I'll return to them to tell this story all over again in albums. We will cry, hug, cry, be silent, hug, and stare into space together, because sometimes that's all that can be done.
I watched her lift her precious son to her lap. She sang to him. She told him how brave and kind and strong and loving and smart he was. She told him how happy she was the day he arrived. She whispered these secrets of love as she gently touched every part of his body.
I've held her hand more times than I can count. I've journeyed with this family for 17 months. Tomorrow we come together again to celebrate his life through stories, hugs, and songs.
Through these families and my own acquaintance with mortality I learn how to live. I learn how wholehearted connection and intentional living make a difference. That's what I stand for and that's why I'm here. I truly believe that when we make these connections regularly and muster the fortitude to live our intentions, we expand our own selves by becoming inseparable pieces of others. We leave marks and patterns. What do you want your mark to be?
If you are a newly bereaved parent or grandparent, this post may be a trigger for your grief. Please be gentle with yourself.
Katie is the woman behind Sleeping Angels Bereavement Gowns. She transforms wedding gowns into gowns and wraps for infants. Grab tissues. These are beautiful.
Like most people who dedicate a part of their lives to grief and bereavement, Katie has personal experience. This work means something to her, and she deeply understands the turmoil of dressing your baby for the first and last time. She makes these gowns so parents have something beautiful for their children when they say the last goodbye in person.
So I'm already tearing up, here.
Not so long ago, Katie volunteered with a national nonprofit organization that provided infant bereavement gowns. In approximately 18 months she sewed 937 pieces - gowns, wraps, and bonnets. That's an average of 52 pieces each month. She was also in college full-time and she made the difficult choice to step back from the organization and concentrate on school.
When a friend of hers from the organization passed away, she returned to sewing. "It's like therapy," she told me. She said that when she sews, she has no aches or pains. She is completely in the moment.
Katie graduated from college with two degrees (business and accounting) and is once again making beautiful pieces that parents will remember forever. She delivers to Mary Bridge Children's Hospital in Tacoma, WA, and is willing to ship gowns anywhere for people who are able to pay for shipping.
This work is now a freelance labor of love. Katie collects wedding gowns, deconstructs them, and finds the most elegant ways to fit them for babies from under one pound in size to several months of age. Her daughter often helps with deconstruction and packaging.
When I met Katie, she had a delivery of 20 gowns for the NICU at Mary Bridge. I had the honor of helping to pack these pieces.
In addition to the time it takes to make each piece (her most elaborate gown was 15 hours of work), she pays for the boxes and the tissue paper. She relies on donations of wedding dresses. It's difficult to pull all of this together because Katie does not have nonprofit status for her work and intends to keep it that way for the foreseeable future.
Here's what you can do.
If you are a sewer, Katie will share her patterns with you and you can create your own gowns. If you want to learn, she'll teach you.
If you can use scissors, Katie will thank you for your help in cutting the wedding dresses into pieces.
If you can't sew or use scissors and do have a few dollars to spare, Katie will thank you for a donation of boxes or tissue paper.
If you have a wedding dress that would like to have the ultimate honor of being the forever clothing many babies will wear, Katie will thank you. It doesn't matter how old it is or whether it is in good repair. She'll even send you pictures of the gowns she makes from your dress so you can have a sob fest (like I would).
If you have white sheets you can give, Katie will thank you. She uses these to line the dresses.
You can follow Katie and contact her through her Facebook page.
Every piece she makes brings peace.
The last time I saw her, she was pedaling away from me on her way to her best friend's house. I watched her thin legs and frail knees and ankles propel her forward on her bicycle. The wind she created with her speed would have blown back her hair had it been long enough. She looked like she felt free.
Two years earlier, she had hair down to her waist. She shaved it to prepare for her first surgery. After six rounds of chemotherapy, she had another surgery. Then eight rounds of chemotherapy. Then another surgery. More treatment.
The last time I saw her, her hair was maybe two inches long. It wanted to make waves over her head and didn't quite have enough length. Instead it wiggled and stood awkwardly at attention. She was so happy to have it, and it was beautiful.
She was overjoyed to be home from the hospital. Six months prior, she and her family traveled to a cancer treatment facility 1,300 miles away for a three-month experimental treatment. It looked promising.
The cancer returned. For nearly three years she had lived the life of a cancer patient with its grueling schedule of injected poisons and evaluations. She found beauty and joy every day.
Her parents told me repeatedly that her refusal to live anything other than a full life was one of the most difficult aspects of her journey. They were heartbroken to know their daughter was living with immense pain - headaches, joint pain, jumbled thoughts, digestive distress. They were elated to see her embrace as much of the carefree life of a 10-year-old as was possible and simultaneously crushed to know that kind of freedom in childhood would not be hers.
She made it herself. She took it. She owned it.
The last time I saw her was her last day. She visited with her best friend for a few hours. She rode her bike home and enjoyed dinner with her family. She played her favorite board game, Monopoly, with her sisters and parents, while her cat sat on her lap.
She went to bed. Her parents kissed her goodnight.
More than 300 people attended her memorial. It was a moving service with stories from her teachers, friends, and family. They hugged and wiped away tears. They stared at their shoes. They talked about how much she would have enjoyed riding her bike on that day, which was unusually dry and warm for February. They looked at the pictures of her on display and replayed the moments in their lives they were fortunate enough to share with her.
I saw all these things, and photographed all these moments. I captured the confusing emotions people struggled to find ways to express. I made art of their love.
This family invited me to be a part of their journey shortly after her diagnosis. I was a part of their "after." I attended family events and celebrations. I was there for school plays. I came to doctor's appointments and visited during treatment. I saw her last bike ride. I photographed that, not knowing it was her last day.
It's been two months since her death. Her mother called me this week and asked me to visit. She and her husband were ready to look through her final photographs - from her last day, funeral, and cremation.
I wish I could find a way to describe how it feels to sit with parents in this way. I wish I could find a way to describe how much it means to be to be invited. I wish I could find a way to relieve the smallest bit of suffering. I wish I had a number to count the tears that fall.
I wish this place didn't exist, and yet I can't imagine myself anywhere else. I know from the backbreaking hugs I received that I am in the right place. I know from the clammy pressure on my hand that my view of their lives means something to them.
I wish I didn't know, and yet I am grateful I do.
This week the subject of work came up while I chatted with a friend. We traded a few stories about the things we loved about what we do and then she became uncharacteristically quiet.
"Your job must be really hard," she whispered. "Why? How can you do this?"
These questions happen in nearly every conversation about what I do. Death is culturally taboo for most Americans. It feels weird and perhaps naughty to talk about it.
It's difficult to explain without many long stories, so I'll give you the abridged version. Adversity calls me. Mortality practically has a finger in each of my nostrils and leads me around. I am compelled to do this. It's hard. Some days I feel like I just can't . . . it's too much.
Then I show up and see the people who are living with this new reality. It doesn't matter if it's illness, death, or a significant change in capability . . . it requires the creation of a new normal. For these families, life is forever changed.
Whatever I experience as the companion during these times I can manage. I know that because I need to do this for these families. This intimacy with mortality, whether it's sudden or gradual, is a state that leads to the need to reflect and connect. Through photography I can give these families a little of both.
Death comes for each of us. It comes to us all. In avoiding the topic or seeking endless euphemisms we cheat ourselves the opportunity to really get to know mortality. It doesn't make sense to deny it. How much better would the end of life be for someone who was not afraid? If we could learn to make peace with that sooner in our lives, I believe it would change not only how we prepare for the deaths of our loved ones and ourselves, but how we live.
Documenting someone's last breaths is an incredible honor (and a tremendous amount of pressure). Observing the customs and tradition of many cultures in caring for their sick, dying, and dead and in celebrating and mourning their losses is eye-opening. I've experienced so many amazing things of which I was previously ignorant.
With mortality a part of my daily life, I connect more closely with how I want to live my life. Being with death strengthens my resolve to live. When my body is no longer able to support my adventures here, I will go. Until then, I am living. I know death will come, and when it does I expect it will be much like old friends reuniting.
Last year I donated more than two feet of hair to Pantene's Beautiful Lengths. This is a sacrifice for me (and my husband) every time because there is so much about short hair that just doesn't feel right. My hair can look quite a bit different in five months of growing and trimming, and this weekend it was time to update my headshots so people recognize me.
I am a deeply compassionate and empathetic person. Truly seeing people is one of the things that comes naturally to me and I believe it saturates my photography.
I am also known for my enormous laugh and wry sense of humor. It's hard to represent all of these things in a single photograph.
For a long time I've carried the expectation that in order to serve families living with grief I needed to be . . . someone a little different from myself. That part of me who is joyful was getting stuffed away by the part of me who is nurturing and compassionate. The big-hearted, loud version was told to shush by the big-hearted, quiet version.
Today, they shake hands. They will be working together from now on.
This won't change my behavior. My work is to serve families as they need me. I match the energy and the vitality they need to experience in someone, and I am really good at doing that.
This does change the way I see myself, and in this view I feel like I can breathe. I feel like I can be authentically me without apology. I am goofy. I'm also pretty polished about it. I know that in order to be the most connected I can be with my client families, I need to feel that way about myself.
So here I am.
In color, because that's how you'll see me in person. With zero retouching, because that's how you'll see me in person.
In fact, I can see I have a little something stuck on one of my teeth right at the gum line.
I'm gaining more wrinkles by the moment. These are lines of a life well lived. I think it's fantastic that my smile lines from my eyes and mouth overlap at my cheeks because my smiles are so big and so frequent. I am grateful for my grey hair, which is one more sign that I have the privilege of aging and with people I love.
This is a photograph of someone who lives, laughs, loves, cries, and struggles. This is someone who sees beauty in life, until the very last breath.
This is someone who sees you and your family in the best ways. This is someone with whom you can celebrate life and love. I look forward to meeting you and sharing in your story.
In 2016 I was fortunate enough to have the opportunity to share my work through interviews. Iconic images came up in nearly every conversation.
"What was your favorite moment this year?"
"Is there a picture that has stuck with you long after you took it?"
To honor 2016 I thought I'd share my 2016 Image of the Year, and I'll also publish a small report of the number and types of shoots I did this year. People are so curious about what grief photography looks like, and because I do not share many images online I have limited opportunities to covey what it's really like.
For me, grief is like this.
It feels like too much.
This boy is three years old. You can see he's in the hospital. At this moment, he's been in the hospital for a few days. He doesn't yet have a diagnosis. He is in excruciating and sporadic pain that morphine doesn't help.
He was hardly able to rest because there was no position that was comfortable. His mother was with him during his entire stay, which was ten days long. She snuggled with him in his bed, read books with him, sang songs, and played with cars. She explained each of the procedures he would have for diagnosis and evaluation. All of them hurt and added to his pain.
This is a boy who had had enough. In this moment I saw that.
I saw how his fingernails were holding on to dirt that he played in just a few days prior. I saw him writhe in bed, even while sleeping, because the pain was too great. I saw a little boy who was confined to a bed and wired for evaluation who ordinarily would be outside running and jumping.
This is my son. Over the summer he was in the hospital. This image breaks me a little each time I see it.
That is what photography is meant to do. This picture I took on my humble iPhone camera tells a story in a way words cannot. It connects me with how I felt over those days in July. It renews my gratitude for his health. It evokes emotions I can hardly describe.
This is why I do this work. I have lived these pictures. While I cannot understand every circumstance I experience through the eyes of my client families, I can have heart for them because I can relate to the grief, anxiety, uncertainty, pain, anger, sorrow, and helplessness.
I see you. I want to help you see yourself and your family.
In my role as a NICU photographer I photograph many moments I want to share. I hear many stories I want to share. Alas, they are not my moments and not my stories. I am also bound by contract with the hospital not to share pictures or identifying information. Sometimes, though, there is a moment or a family that really hits me. While I cannot share images the way other photographers do, I can tell you about my experience.
This is for the young NICU father I met last week.
I have this picture of you gently caressing your tiny daughter's foot through her incubator. Every bit of your right arm and hand that is visible in this picture is covered with ink. It's a beautiful juxtaposition of toughness and gentleness.
I have other pictures of you holding your daughter, just barely five pounds. She looks especially small in your arms. Your face is so soft and tender. It looks as though your heart lives outside your body in this tiny person.
I know from spending time with you that you are tender and compassionate. I saw that when you were with your daughter and her mother. I saw you surrender to both of them in this experience. I saw you allow yourself to be vulnerable. With a stranger (me) in the room.
I also noticed that you look like a total badass.
You have the appearance of the kind of person popular entertainment suggests is not worth of trust. I don't know anything about you beyond what I saw in the NICU during the short time we were together. From that I can say that I've seen the best in humanity. You were completely connected to your daughter. You were kind to and supportive of her mother. With me you were gracious and grateful.
Thank you for having the courage to show your true colors. Your little girl is fortunate to have you in her life. I know you will be behind her in every challenge she faces.
I see a lot of incredible moments of the human experience while being with families in love and grief. From each family I learn, and those lessons and points to ponder are what I wish to share with you here.