It’s challenging to bring awareness to something that’s terribly heartbreaking and downright depressing, but we must. All people share the need to be loved and understood, and I hope these stories of love, loss, and redemption inspire you to continue sharing stories to help raise awareness too.
It was springtime in Atlanta. I was enjoying my beautiful baby girl, Skylar, not knowing how much time we had left with her. You see, when she was two months old, we were told she had a terminal condition called SMA (Spinal Muscular Atrophy) and might not see her first birthday. We were sitting outside enjoying the lime green leaves starting to poke out when I got a phone call. My next door neighbor, Talitha, called to let me know our other neighbor, Brooke, had just delivered her son and he wasn’t breathing.
He had been active and showing strong vitals all during labor, so the medical team rushed him to a children’s hospital to do everything in their power to save him. He was intubated, but all attempts were unsuccessful. Since they had him on life support, Talitha asked me if I would come take photos. The whole family was there to say goodbye. My heart sank.
Just thinking of it made a lump fill my throat. I quickly referred her to other people who might be able to do it, but she said she felt God ask her to call me. Crap. How do you get out of that one? You don’t. I packed up my photography gear and headed to the hospital, knowing it was going to be one of the hardest things I’ve ever had to do.
Like most people, I wanted to run from grief, but God led me straight to it. I had tears streaming down my cheeks as I watched everyone shower this little man with love. He never got to open his eyes, but I have no doubt he could feel. His heart was strong like the rest of theirs.
I held it mostly together until I got in my car to drive home. I was ugly crying driving down the 75/85 connector—and if you know Atlanta, you know that six lanes of heavy traffic is not the best place to blind yourself with tears and snot. I was sobbing for this family, for their loss, for their grief, and for their shattered hopes and dreams. I was crying for my own grief, for the loss I knew was coming, and the brokenness of this world where babies die.
The next day I sobbed all over again as I edited the photos for the memorial service. A few weeks later was Mother’s Day. My husband and I walked some potted herbs and flowers over along with a six-pack of their favorite brew, knowing that it was probably a really rough day for them. It was then that I realized the power of photographs.
Brooke gave us a tour of their home, and we got to the room that they had intended to be the nursery. She had the photos I took of her son hanging on the wall, dedicated to his memory. She told me that the photos validated her as a mom that day even though she didn’t have a baby in her arms… The photos let her hold her baby in her arms even after he was gone. It made me pause. “Wow, that’s powerful.”
Not long after that, we had a friend gift our family a professional portrait session. Tessa, the photographer, took some incredible photos of my husband and me with Skylar. Our family pictures were treasured and put on our mantle. Tessa came back almost a year later to capture Skylar one last time.
A month after that session, on a sunny August morning, Skylar died. We had 21 months of celebrating life together, fighting against death, and unconditionally loving each other. The photos we have together are absolute treasures. They were an amazing gift to help me through the grieving process and bring me so much joy now. (Photo courtesy of Tessa Marie Photography)
Once she was gone, people would look at me like I was an alien from another planet, or avoid me completely—as if losing my child somehow made me unrelatable in every way. Even during Skylar’s life, I lost many friends who “couldn’t handle it” or simply didn’t know what to say, so they disappeared. The more I have walked with people through grief, the more I hear similar stories.
Even worse, I would hear things like, “It’s all in God’s plan” or, “Everything happens for a reason.” Regardless of your belief if that’s true, it’s not comforting at all. The worst was when someone said, “God just needed another angel.” I swear I almost punched them in the throat; it made me so mad. I wanted to yell, “If He needs another angel, I would be happy to send Him you!” But I kept the rage inside, tried to find grace, and gave people the benefit of the doubt that they were completely ignorant and didn’t know what to do with grief, even though they tried.
We must do better. As a society. As neighbors. As friends. As family. It’s not easy to enter into the suffering. Grief is something we all experience at one point or another, so why do we run from it? It’s scary because it’s unknown, but we must be brave. We must choose love over fear.
I am grateful that even though we had many “friends” disappear in our lives, we had many more show up. They knew how to be brave and love us well. Sometimes, it didn’t require words. Other times, it was a simple hug and, “This sucks so bad. I’m sorry, friend.” Some people showed up every week to bring us dinner. My mind was blown, and my life was forever changed by their generosity and love.
Honestly, those people kept us going. Our hearts were so broken over loss, so exhausted in the fight, and so overwhelmed by death, that we weren’t capable of loving one another (or anyone else for that matter) for quite some time. At the end of the day, we were both just trying to survive. My husband and I grieved so differently. I had to remind myself that it was our grief that was going in two different directions, not our marriage. We both were doing the best we could, and we had to find grace to acknowledge that even our best wasn’t good enough. And it was only for a season.
I was on a journey of rediscovering myself in the aftermath. I had been a mom and full-time caregiver for almost two years, putting my career on hold. I knew I was too depressed to go back to the corporate world, so I committed to starting my own photography business to help get me out of bed every morning. I poured myself into learning how to run a business and quickly figured out through trial and error what worked and what didn’t.
A year later, I learned about Kevin, a guy at our church who was facing stage 4 melanoma cancer. I reached out to his wife, Rachel, and offered their family a free portrait session. I knew how powerful photos were for Brooke and for me, and I wanted to give that same gift to others.
Long story short, they took me up on the offer, and I photographed them several more times before Kevin died. In fact, I captured his last day on earth and was with him when he passed. It was in praying through Kevin’s last breaths that I realized suffering is not something to run from. If we are brave and show up to love people, our hearts will grow softer and stronger with each break.
After Kevin’s death, I continued to offer free portrait sessions any time I heard of someone facing a terminal diagnosis. I knew that medical bills pile up, your priorities are on survival, and photography is an afterthought, often when it’s too late. I was pleasantly surprised that most people took me up on the offer. I was doing free sessions and giving away prints, books, and artwork, and felt like I had found my purpose. However, my husband lovingly brought up a good point that we too have bills to pay, and I am actually losing money by giving it all away. Charging money was not an option in my mind.
The idea of Love Not Lost was born: a nonprofit to photograph people facing a terminal diagnosis to preserve memories and support people in grief. After a year and a half in paperwork (incorporating, writing by-laws, and applying for 501c3 status), we were ready to bring Love Not Lost to life.
What better day to birth Love Not Lost than on November 19, Skylar’s birthday. I struggled with her birthday more than any other day because it was supposed to be a celebration of life and she wasn’t here. But that all changed in 2015 when our closest family and friends gathered together for a special birthday party to honor Skylar and hear the vision for Love Not Lost. We raised $6,000 on her 6th birthday to bring Love Not Lost into the world.
We launched our website on January 1, 2016, and that same month received our first application. Stephanie, a mom pregnant with a beautiful baby girl who had Trisomy 13, asked for a portrait session. With a focus on celebrating life, we made sure to have a maternity session first to capture the joy and love shared as a family. Stephanie was due in June, and her baby wasn’t guaranteed to survive.
Stephanie and her family ended up getting to spend 1 hour and 23 minutes with their precious daughter at the hospital. We were able to capture Elannia’s sweet little extra toe that was joined on her pinky toe, shaped like a heart. We took photos of her brother giving her a sweet little kiss. We photographed Grandma’s hug with smiles and tears. These were powerful moments that we were able to freeze in time.
The photos we took that day at the hospital preserved her memory and allowed people to “meet” her at the memorial service and even today. As with every Love Not Lost session, we create a beautiful hand-crafted photo album with the best memories to serve as an heirloom keepsake. Stephanie told me she carries around the book to share Elannia with the world.
You can read the stories we’ve captured on our blog, www.lovenotlost.org, if you want to meet more brave families facing death together.
As we’ve photographed moms, dads, children, infants, and unborn babies in the womb, we know that grief is hard. The driving question at Love Not Lost is, “How can we love people better?” It’s the foundation of every decision we make because I know love is what got us through the darkest time of our lives. Love made the difference.
I think we can do a much better job of loving people who are hurting and supporting people in grief. If you’d like to join us on this mission, please follow us on social media @lovenotlostorg, sign up for our email newsletter on our website www.lovenotlost.org, and support us in our crowdfunding campaign so we can keep growing to serve more and more people. Thank you for caring!
You are loved.
Pregnancy and Infant Loss Awareness Month is in October, and it’s so important for those who have lost.
To read a four-part series about Skylar’s life, death, and legacy written by Ashley, click here.
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