This is the final piece of a four part series of a young mother’s story. We were so captivated by her journey we knew you would be too. Read the first three sections of the series, here: Part 1 Life Before Skylar, Part 2 Life With Skylar, and Part 3 Life After Skylar.
Our life, even with bogus medical bills and special needs, was rich and full. We were so thankful that we had 21 wonderful months with our baby girl before having to say goodbye. Shortly after Skylar died, I remember standing in our driveway waiting for my dog to pee in the grass. It was a late summer afternoon, and I was doing my best to soak up the sun while my dog walked in circles. Vitamin D was supposed to help depression after all… I remember standing there feeling frustrated because not only had I lost my baby girl, but I was starting to feel like I was losing God too.
With Skylar gone, I attempted to enter back into society, which gave me the very false belief that I was regaining control of my life. I was scheduling meetings and work, trying to catch up with friends at coffee shops and going to public places. With each block added to the calendar, I felt like I needed God less and less. It was such a bummer of a feeling. It was like I was losing something special and the only way to get it back was to get Skylar back… and I knew that wasn’t going to happen.
I started to pray silently about how I longed for that closeness again and stopped mid-sentence. In my head I said, “God—I am about to pray something that is really scary. It’s going to sound really awful, but I know you know my heart in this… I don’t want you to take my husband or my other family members. I don’t know what this is going to look like in my life, but I trust you.” I continued to tell God that my heart longed to feel near to Him again and I didn’t like the fact that my life was going in a different direction now that Skylar was gone. In our suffering with Skylar, I was forced to rely on God in order to survive. Now my life was merely an illusion of self-control and I despised it. I missed the days when every second was dependent upon Him… When I could feel God’s closeness and know that He had me covered.
I didn’t know how to fully function in society and focus on God at the same time. How do you keep God as your focus when you’re pulled in a hundred different directions every day? Things seemed to get foggy quickly, and my ability to see clearly was diminishing.
I knew one thing for certain; I wanted to connect with other SMA (Spinal Muscular Atrophy) families now that I had the freedom to travel. I also wanted to take pictures for them. I understood that hiring a professional photographer is the last thing a family thinks about when facing a terminal diagnosis, but it’s also one of the things that can mean the most to you when your loved one is gone. It’s hard to find photographers who understand the limitations and needs of an SMA baby or kid, because most have never experienced it. Plus, photography is the last thing families want to spend money on when medical bills are piling up, so it was my pleasure to gift sessions to these families, knowing how tough times can be.
I ended up taking pictures for two SMA families so they would have moments frozen in time that they could cherish in the years to come. Being able to preserve memories for others brought me so much joy, knowing how priceless photos become when someone you love is gone.
Whenever I heard of someone facing a terminal diagnosis, I longed to do more and offered free portrait sessions. One of the first non-SMA sessions I captured was for a man at my church who had been diagnosed with stage 4 melanoma cancer. Melanoma runs in my family and I’ve been fighting pre-cancerous moles since I was a kid. I knew stage 4 required a miracle for survival. I offered a free portrait session to their family of 4 and they gladly accepted. The evening we were supposed to meet, it was overcast and a light rain was falling. I told them to come anyway because tomorrow is never a guarantee and we would make the most of it. Plus, the rain was actually fitting for the season of life they were in. We captured some really powerful moments together.
Months later, Kevin wasn’t doing well. Rachel, his wife, let me know they were flying to LA for their last chance at a cure—a trial treatment. Before they left, she asked if they could do one last session. We met the next morning at sunrise before they left on their 10am flight, just the two of them. This day was also overcast and was a little more somber as Kevin barely had the strength to stand. There were few smiles, but each frame was full of love. A few months after that, just before Christmas, I got another call. The trial didn’t work and Kevin was in hospice. Rachel asked me to do one more session with their family and flew me to LA just days before Christmas. We photographed their celebrations together. There was one moment I will never forget when Kevin stood, with the help of his friends, and gave Rachel one last good hug. I believe he transferred all of his strength to her, as he collapsed in the chair immediately following. His friends carried him back to bed where he remained the rest of the day and took his last breath later that night. I was there to capture all of it and found myself sobbing on my knees with my face on the floor crying to God and asking him why. Why do so many people have to suffer? Why was I praying the same prayer I prayed over Skylar when she was fighting for her last breath? Why does my heart hurt so much and yet still keep beating? Why am I here?
It was as if God whispered, “This is what your life of suffering is going to look like without losing all of your loved ones… You can enter into suffering with others and walk with them through their pain.” I swear a light bulb started shining on top of my head. I lifted my head and sat up on my shins, drying my eyes for a moment. Really? Would my heart be able to handle it? My heart was already broken for Skylar, and now it was breaking for Rachel and her family. How much could one heart take? I decided to find out.
I’ve learned that there is a time to weep and a time to laugh, a time to mourn and a time to dance. Sometimes, those times overlap. I had just witnessed Kevin’s death and photographed his last moments, while also helping Rachel make arrangements, and yet I was somehow trying to celebrate Christmas.
Just weeks before all of that, I found out one of our dear neighbors, Jim, had been diagnosed with stage 4 lung cancer. Jim & Ed were some of our favorite neighbors on our street. They were a huge support when I was home with Skylar, so I was so happy when they accepted my offer for a portrait session. I photographed them in 2013 before Jim started chemo and made prints of every picture we took. Every day, I would leave a printed photo on their front porch to give them something to look forward to during treatments, which lasted for 60 days. I would sit with Jim when he was too weak to be by himself and Ed had meetings he couldn’t miss. We would talk about dying, being scared of what’s after, and what faith brings. We would also talk about flowers, a neighborhood book share project he was working on, and other happy things. I was in Nashville at a workshop with Donald Miller last summer when I got the call that Jim had passed away. Again, the sobs came and my heart ached in my chest.
But I was learning that with every pain, there was healing. Each time I opened up my heart to love someone who was dying, I became more compassionate, more empathetic, and learned to love people better. It didn’t quite make sense, but with every heart break, I became more full. After photographing about 10 families, I realized I could survive being a part of hard situations and losing people. It became clear this was my next purpose in life.
I’ve learned that there is a time to weep and a time to laugh, a time to mourn and a time to dance. Sometimes, those times overlap.
I set out to create Love Not Lost, a non-profit organization that photographs people facing a terminal diagnosis, capturing and preserving their memory for those they love. I wanted to build an organization that offers support, because whenever there is a terminal diagnosis, people tend to disappear. Fear can cause friends to fall off the face of the earth, and sometimes even family too. I understand it’s a tough road to walk with those who are suffering. But when someone is facing their darkest days, that’s when they need support the most.
Don’t let the fear of not having the right words keep you from calling. Don’t let the fear of pain keep you from showing up. Spoiler alert: It’s going to be difficult. But it’s not going to be as hard for you as it is for the person dying. They need your support. Be present. Give hugs or a shoulder to cry on. Lend your ears. If you need to say words, you can say, “I’m so sorry—I am here for you. I may not know what to do to help you, but please don’t be shy to ask me for specific help. I love you.” If you can’t show up in person, send a card every month and don’t stop. Send a gift card for dinner. Find other ways to show support. In doing so, you will make a huge difference that is truly a rare treasure.
I hope that Love Not Lost will be a place that people can turn to in grief. I don’t want to see anyone suffer alone. We are giving free portrait sessions and free photo books to our applicants who are facing a terminal diagnosis. We are also building a community full of meaningful relationships to help people through grief. To learn more, please visit our website lovenotlost.org.
As I wrap up this guest blogging session, I want to share one last thing… The driving question of our organization is, “How can we love people better?” Whether it’s the people who apply for sessions, their loved ones who will grieve their loss, our volunteers, our donors, supporters, or others… It is the question we use to measure our programs, operations, everything.
So I challenge you to ask the same of your life—how can you love people better?
About our guest writer: Ashley Jones of Love Not Lost.
Ashley is mother to a daughter in heaven and wife to Kyle. She is a lover and a helper. She is known to brake for squirrels, stop on the side of the road to save a turtle from becoming roadkill, and can cuddle with puppies all day long. Coffee would make her mornings so much easier, but she just can’t bring herself to like it. She’s a friend of grief and an ambassador of joy. She feels honored to have this opportunity to share her story with you.
Photo of Ashley courtesy of Janet Howard Studios