Our Family Story
A letter from Soul Parents, Jeff and Rachel Danforth
When we found out we were pregnant with our first child we expected to write thank you notes for gifts received at a baby shower or when people came to meet the baby for the first time. This is a thank you note we were not expecting to write.
We entered our 20-week ultrasound expecting just to find out if we were having a boy or a girl. At the appointment, we found out that it was a boy and he had congenital diaphragmatic hernia (CDH). As part of our doctors’ appointments they were very upfront with us about the potential outcomes and gave us information for Soulumination. We took the pamphlet and did not do anything with it because we wanted to focus on having our son rather than having the pictures to memorialize the time he would spend in the hospital or to remember our son. We had no idea how powerful and important those pictures and Soulumination would be to us.
On December 28, 2016, our son, Matthew was born. He was taken straight to the NICU at UW and then transferred to Seattle Children’s. Once at Children’s they evaluated him and found the CDH was too severe for them to be able to help him. Matthew passed away December 29, 2016.
Even though we did not contact Soulumination to schedule or plan for Matthew’s birth, an emergency photographer for Soulumination, who is a nurse at Children’s, came into our room to take pictures. The pictures taken were candid shots of our short time with Matthew. He met his grandparents, aunts and uncle, he was baptized, we read him stories and we had skin-to-skin time. The photographer also took pictures of Matthew after he passed away without all of his tubes and medical devices. Throughout the day our family took pictures on their phones. However, as we looked through some of the pictures they turned out how we saw him, like he was a little blurry through the tears. Thank you Soulumination for letting our family and us focus on our time with Matthew and capturing it beautifully.
The team at Soulumination was so good to us, getting us our pictures quickly so that we could display them at Matthew’s memorial service before family left town. Displaying these pictures allowed all of our friends and family, whom had not gotten to meet him, to see our beautiful baby boy. When we asked for the pictures quickly we hoped to receive some of the digital images to be able to look at and print; however, they sent us a whole package of prints, a framed picture, wallet sized pictures, and tri-folds of images to display for both sets of grandparents and both of us. The photography, pictures (digital and print), and gifts were all given to us free of charge.
Thank you Soulumination for being the bright spot in the most challenging time in our lives.
Why I Photograph for Soulumination
A letter from our Program Manager & Volunteer Photographer, Jodi Rosen
I am a Soulumination Photographer because I know the healing power of photographs first-hand.
Thirteen years ago, we lost our second child, Alex, at birth due to an undetected cyst in his brain that had grown so large it prevented his brain from developing. Finding this out at a routine doctor’s appointment two weeks before he was due was one of the most difficult, challenging, and heart-breaking experiences I hope my husband and I will ever have to go through. The choices we faced during the five days before Alex’s birth seemed nearly insurmountable, yet together we were able to tackle impossible decisions despite their unwanted and painfully inevitable outcome for our son.
Alex was born via C-section in an operating room setting filled with what I can only imagine to be some of the most remarkably loving doctors and nurses in their field. The five days prior to this moment had been filled with so much fact-gathering, decision-making and grappling with these unexpected turns of events in my otherwise perfectly normal pregnancy, that taking pictures of Alex at his birth never even once crossed my mind. Such was our state of sadness and exhaustion that when just moments prior to being wheeled down to the operating room for my C-section our nurse carefully asked us, “Would you like me to take some pictures of Alex after he is born?” My protective mother instincts immediately took over and my knee-jerk reaction was a resounding, “NO!” Thankfully, I realized that the, “NO!” I yelled had only been in my head, and I paused for a moment, took a breath, and heard myself instead saying to her calmly, “Yes, that would be fine”.
These photos are everything I need to survive his death.
It is because of the photos our nurse took of Alex that I am a Soulumination photographer. These precious, beautiful, not even a dozen photographs of our darling son, Alex. These photos are everything I need to survive his death. It wasn’t an easy road back from Alex’s birth. We had not planned on coming home from the hospital without our healthy newborn nestled in his car seat in the backseat of our car. But the photos we have of Alex are my lifeline. They solidify his existence and honor both his life and his death. As his mother, I am so proud to have borne witness to his short journey here.
With time, I realized the important impact these photos of Alex had not just on my own recovery, but for the rest of our family as well. They allowed for our living two-and-a-half-year-old son to work through his own grief in dealing with the strangeness of us not bringing his brother home from the hospital. He asked to see pictures right away and quite often, for many months, I would find him sitting next to the box which held small mementos of Alex looking through the little photo album I made from the pictures our nurse had taken. Our subsequent children, having heard about their big brother who had died, were also able to see him and connect in their own way, building an understanding and appreciation for life and death I could not have imagined any of them displaying at their young ages. And to this day, when I am asked in public how many children I have, if I falter or stall I am always given a gentle reminder by our youngest that, “There are FIVE of us Mom, and it’s okay to say it!”
One month after Alex was born Soulumination began, as Lynette had borne her own witness to the healing impact of photographs with the life and loss of her newborn niece. She realized immediately that all families deserved to receive photographs to help shelter fear, survive grief and heal. I knew I had to bring the same peace and healing I experienced from Alex’s photos to others. I was determined to give others the life-affirming, healing gift of photographs just as I was given. I asked to become a part of this beautiful legacy work and graciously, Lynette allowed me to become a volunteer photographer. My gratitude for getting to be involved with this loving and important non-profit is immeasurable.
I am filled with an incredible peace from the first-hand knowledge that the photographs I am taking could be someone’s lifeline for conquering their fear or their grief, just as Alex’s photographs were for me.
Soulumination photoshoots span an array of health issues from healthy and in remission, to extremely medically complex with very little ability to move, to end-of-life shoots which carry the sacred weight that encompasses death. In every circumstance, I am filled with an incredible peace from the first-hand knowledge that the photographs I am taking could be someone’s lifeline for conquering their fear or their grief, just as Alex’s photographs were for me. The photographs will help family members and friends treasure this beautiful person’s journey however long or short. And most importantly, the photographs will honor the human being whose life was thrown out of balance by a challenging and sometimes life-ending medical diagnosis.
Please tell everyone you know about Soulumination and offer our services to all who have the need for photographs which honor life, dignify death and help heal. Photography from Soulumination is a life-changing experience and an opportunity that should never be missed, so please extend our free-of-charge services whenever you learn of the need and give families the incredible gift of the opportunity to say, “YES!”
Soulumination provided 328 photography sessions to families in need in 2017.
Families are gifted all rights to their images with the option to release them to Soulumination for use in bringing awareness to our work.
Thank you to the incredible photographers donating their time & talent to our mission.
Diane Ahern, Danielle Barnum, Korbi Beck Ashton, Renee Bergeron, Cassie Bergman, Lydia Brewer, Jennifer Bugbee, Erin Burk, Randell Carmer, Karen Carter-Schwendler, Kelly Chandler, Martha Chaundry, Carolyn Coffee, Bryce Covey, Stephanie Cristalli, Ana Day,Stephanie Dodson, Natalia Dotto, Susan Doupe, Lena Eivy, Michelle Enebo, Adair Freeman Rutledge, Pierre Frevol, Michael Good, Annie Graebner, Carol Harrold, Wenmei Hill, Deena Hofstad, Robert Hood, Lynette Huffman Johnson, Neal Johnson, Kendera Kerscher, Leo Lam, Sarah Landa, Jen Lavallee, Nick Leung, Libby Lewis, Dawn Lucrisia-Johnson, Mary Maletzke, Crystal Malta, Sarah Mattingly, Corinne McNeely, Fairon Minshall, Carrie Nelson, Kim Preston, Jeanna Rice, Jennifer Richard, Elizabeth Robinson, Jodi Rosen, Sheila Ryan, Josh Samson, Jennifer Sandmeyer, Luc Schoonjans, Katie Simmons, Kurt Smith, Lynette Smith, Cindi Soderman, Ruby Somera, Agnes Szuberla , Julie Templin, Fischer Wallace, Stephanie Walls, Teddi Yeager, Anne Young, Carrie Yuan, Brian Zamora
Soulumination serves families at Camp Agape NW
Camp Agape NW provides an all-expense-paid week-long overnight camp for the whole family of a child with cancer. Camp Agape NW gives children with cancer a chance to feel normal, siblings a chance to feel special, and parents a time to be together. Soulumination has been working with Camp Agape NW for 13 years. In those 13 years, we have provided 204 photography sessions to families fighting cancer.
Soulumination serves families at the National Tay-Sachs & Allied Diseases Conference
The annual NTSAD conference empowers, supports and connects families coping with Tay-Sachs, Canavan, GM-1 or Sandhoff. Soulumination offers a photography session to each family attending the conference with an affected child. Since 2007, we have provided 235 photography sessions to affected families.
Soulumination serves families at the MLD Foundation Conference.
The MLD Foundation serves families throughout the world affected by metachromatic leukodystrophy (MLD), a terminal genetic disease. For the second time, Soulumination provided photographs to families attending the conference.