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.
The expenses of final arrangements for a loved one are often overwhelming, and this is almost always the case for parents who bury a child. Children's graves are the ones I most often visit to photograph for parents, and often these resting places are unmarked in conventional ways.
We think of a burial as something that involves a headstone or marker that recognizes and honors the person's lifetime, often with some personalization such as a quote or a picture. These stones range from hundreds to thousands of dollars. After paying basic burial costs (and especially when death punctuates a long illness), stones become financially out-of-reach.
This is heartbreaking. It's heartbreaking for anyone who grieves. In the community of bereaved parents, there is a colorful, vibrant, and unique solution.
Resourceful parents without the financial means to provide a stone make grief homes for their children in other ways. This young girl's family embraced her love of horses and created a stable for her. A pink stable. The stable has a modest fence, a beautiful and bountiful garden in the back, and Anna (from Frozen) lovingly tends to the four horses.
She had asked her father for a pony for years, and he was seriously considering making that happen for her when she received her cancer diagnosis. She was ten years old. He knew she wasn't physically able to ride between the rigors of treatment and the ravages of cancer. He began to promise her the pony she asked for, and shortly after her burial he delivered.
She has no stone. While I look at her place and wish she had a beautiful granite marker that will help to tell her story for generations, I understand and admire her family's alternative. This is beautiful, and this says so much more about who she is than any stone could.
Many nonprofits exist to help parents in this circumstance and offer financial assistance for final arrangements. Little Love Foundation, which assists parents who have suffered the loss of a baby, put together a fantastic online reference of resources. Help is available. And sometimes the alternative can be more comforting in the short-term.
There isn't an easy time of year to be hit with a wave of grief and outside of triggering events like birthdays and anniversaries it's impossible to predict when the next wave will hit. The holiday season is a challenge for most of the families I meet. It's full of good cheer, good will, and love for family and friends . . . and when someone you love isn't there to share that with you it can feel exactly the opposite.
I asked Sairey Luterman, a Certified Thanatologist with a grief counseling practice in Massachusetts, a few questions about how to grieve through the holidays. She is a thoughtful and compassionate professional who encourages people living with grief to honor themselves during this new way of being. I share her wisdom with you in the hopes it can bring you or someone you love a smidgen more comfort this holiday season.
How do we include meaningful traditions in our family's celebrations when a key person is no longer here? Do we start new traditions? Do we keep the old ones and struggle through them?
After a loss, holidays can take on a looming and threatening nature for a family trying to navigate traditions, memories, and feelings. One of the biggest gifts a grieving person can give themselves is to anticipate a holiday and try to plan for it, well in advance of the actual holiday. What might feel good? What needs to be tossed? Work with your loved ones to develop a plan and ideas for how the holiday time might be best and most comfortably spent. Then, don't feel like those ideas and plans are a lock step formulation. Be willing to switch gears int he middle if something that initially felt comfortable and wonderful isn't working. Surround yourself with family members and friends willing to support and be flexible with you at this time. Some folk are able to work with the old traditions and simply call out and remember and perhaps symbolically include their dead loved one, while other may decide to radically depart from the old ways and take a cruise, go on a hike, or observe a holiday in a way that is entirely different than what they may have done previously. Some find a more comfortable middle ground.
In my experience, this can be about trial and error, and after a few holidays have been approached and celebrated, what may or may not work for a family will begin to emerge. Be thoughtful, refine, adapt, and change as much as you need to, and be kind to yourself.
When does it get easier?
Loss is particular and individual - there is no algorithm for this. Loss is hard and it must be continuously acknowledged. A person who has had a loss is deserving of big doses of love and support. Having good support in place and learning what that support looks like for yourself and your loved ones can help make traveling the road a little easier. There can be an enormous amount of comfort in being with individuals who have also suffered a similar loss, as in a bereavement or loss group, or if that isn't comfortable, one-on-one support may help someone who is really struggling. Seek help and support and be as kind to yourself as you would to someone else who has suffered a loss.
How do I politely decline invitations when I just want to be left alone?
There is a thread of educating others that seems to run through the experience of enduring the loss of a loved one. It is a role one can choose to take on, or not. I believe a polite and simple, "I appreciate the invite, but I am not up to it right now," should suffice. If you feel uncomfortable being that succinct, you could say, "When I feel more up to it, I will be sure to let you know," as it will generally stop the invitee from insisting. There is a lot of clumsiness in what is offered to us in the wake of loss, and a lot of good, too. Listening carefully to your own internal signals and defending the space to grieve and exist the way you need to is your right and a profound need that must be honored. It is okay to defend that space for yourself. If you are not leaving the house for long periods of time or the person making an inquiry or request of you is someone quite close and that you particularly trust, you may ask them, "Why the insistence?" Remember that sometimes our loved ones can feel apprehensive and want to help, but they may also see something distressing in your behavior that is worth listening to - for instance, prolonged withdrawal from family and friends may mean you do need more support, perhaps from a professional.
I feel horrible for wanting to forget about this loss until the holidays are over so I can enjoy the holidays. Does that make me a terrible person?
Taking time to reevaluate and explore how holidays are spent (and enjoyed) in the wake of loss is an important self-care activity. There is a lot of judgment about how we choose to grieve and do things sometimes when we have had a loved one die. If it is more comfortable to proceed with the holiday "the old way" then it should be so - and not having different traditions, memorializing our loved one, and calling them out during this time are absolutely acceptable. What matters in the new normal is that the holiday feels as you and your loved ones desire and need it to be.
I especially like how Sairey mentioned the clumsiness of grief. It is awkward. It is both delicate and tough, and that seems to be so much of the clumsiness of it. In being honest with ourselves about how we feel and how we'd like to spend our time, we can politely and firmly help to set the expectations of others. As Sairey said, defend the space you need to grieve.
Sairey works with clients in and around Lexington, MA, and works with clients via the phone/Skype all over the country. She provides excellent resources online through her site and social media accounts. Her addresses are below if you like to follow her.
May the holidays bring you moments of peace between the waves of grief this year.
When I visit graves and niches to photograph them at the request of families, I often bring my assistant. He's spent more hours in cemeteries and memorial parks than most adults, and yet he's three years old.
My son came with me today as I documented a new marker for a young woman. She has a place that reminded me of a backyard, under the cover of a large tree with a small bench for long chats. An angel stands nearby with a bowl of flowers.
In this particular memorial park, the children's area is nearby. I visit the little ones when my schedule is flexible. I think they call me to them. I find myself with the children in every cemetery I visit, even if it's my first time and I have little idea of the layout.
My son and I walked through to talk to the children. Earlier in the week I photographed an infant's funeral and visited the little boy in his new place. I visited with the other children I've come to know and introduced myself to others. I tell my son what I know about these children in ways that make sense to him. He gives me lots of hugs.
We walked by a little boy's space who had a car engraved on his marker. A kindred spirit for my son! I pointed his out to him and told him this was another little boy who really liked cars. My son squatted down and admired the granite.
"Mommy, may I play with him?" he asked.
I didn't know what to say. I didn't know exactly what he meant, so I asked him to explain.
"I have cars in your truck, Mommy. I can share and we can play."
And so we walked together back to my truck. He stuffed his pockets with vehicles and carried a few more in his hands. On the way back to the boy's marker, he shouted, "I'm coming! I have cars!"
He laid in the grass and played with his new friend while I wandered the grounds, meeting new people and imagining stories. I'm sure he had stories of his own to tell. He chatted nearly the entire time of his visit. I'm not sure what he saw or felt.
When it was time to go, he packed up his cars and said goodbye to his friend. I believe we'll be back to visit and play again.
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.