It was November 2009, and I didn't think life could get any better after I naturally delivered my beautiful baby girl, Skylar Marie, and went home with a healthy family. Two months later, our world came crashing down as Skylar was diagnosed with SMA type 1 (Spinal Muscular Atrophy). We were told it was terminal, and learned that SMA is very similar to ALS, so Skylar probably wouldn't see her first birthday. Not long after her diagnosis, she lost her ability to swallow and needed her first surgery. I asked a photographer friend to come take photos for us just in case she didn't make it.
Skylar came out of surgery with flying colors, and a few months later, Trey & Lauren Boden gifted us a professional portrait session with Tessa. Tessa, the photographer, has a niece with SMA, and ended up donating the session, gave us a photo book, and came back a year later for a second free session with our family. That's right, Skylar made it past her first birthday and we got to enjoy 21 wonderful months with her before having say goodbye. The photos we have of our family of three have provided so much joy and comfort in her absence and are the only prints we have framed in our home. They have helped through the grief and allowed others to "meet" our daughter since most people just assume that my husband and I don't have any kids yet.
Whenever I heard of someone facing a terminal diagnosis, I offered a free portrait session as a way to pay it forward. My first donated session was for my neighbor, Brooke, who delivered her son at full term, but he wasn't breathing. Skylar was just 6 months old at the time, and capturing Brooke's whole family saying goodbye to their son, knowing that I would soon be watching my whole family say goodbye to Skylar, was one of the hardest things I've ever had to do. Looking through the viewfinder, with tears streaming down my face, we captured some really sweet moments, and I sobbed the whole way home. Being a photographer myself, I saw the value in photos, but it wasn't until Skylar was gone that I understood the depth of what a tangible photo could do for those left behind. They helped me grieve, brought me comfort, and bring me joy now. As her memory gets father away as each year passes, those photos bring her close again. Brooke gave birth to a healthy daughter several years after I photographed her son, and she told me those photos are the only way her daughter is going to be able to "meet" her big brother.
Once Skylar died, I continued to donate sessions for other SMA kids, people with genetic conditions like Cystic Fibrosis, and adults with stage 4 cancers of various types. People frequently ask me how can I do what I do... The suffering and grief I've been through, along with the suffering I've joined others in, is hard, and it hurts, and there's pain involved, but there is great joy and much hope too. I know that this gift can help people through some of the darkest times they will face in life, when many people find themselves feeling helpless and alone. I was so grateful for those who entered into our grief and suffering with us in a world where the natural tendency is to run away. Not only do I hope to pay it forward, but I hope to change the way we look at grief and suffering so that we can love people better.
It is truly an honor to come along side of people who know their time is short to capture and preserve their memory for those who love them. I can't think of anything else in life for which I am more qualified and have a passion for more than this, which is why I created Love Not Lost. Death stings, but it's only because there is great love, and that love is never lost! Everyone deserves to be remembered.