When we think of autumn, we conjure up so many images that bring warmth and comfort. But for some, these months are a time of deep grieving and fierce advocacy. September ends Childhood Cancer Awareness Month and October begins two important awareness efforts also near to my heart, Down Syndrome (DS) Awareness and Child Loss Awareness months. Today, October 15, families across the world will light a candle in memory of their children. In honor of this important season, I’d like to share the stories of two little girls who continue to influence Little Light of Mine (LLOM).
Anna, my spunky daughter who happened to have DS, died when she was only two and a half due to complications of pulmonary hypertension. She, like many kids with the extra 21st chromosome, changed the way people around her viewed disability. She didn’t know she was supposed to walk and talk at a year of age but she knew that listening to music and dancing with her big sister made her happy. One of her first skills was to pull herself up to the radio and push the back button so she could hear her favorite song again. She didn’t know that she was sick because she didn’t know any other life than the one including hospitals and blood work and echocardiograms and medication. I often lamented that we hadn’t gotten photos since her very dramatic birth, so friends bought us a gift card to a local photographer, which we didn’t manage to use in time. It will always be one of my biggest regrets.
Even for families with resources and excellent insurance, having a child with special medical needs is a drain on finances and time. Having professional photos often becomes a wish unfulfilled. When you pay hundreds of dollars and carve out hours from the schedule, you think things have to be perfect. You don’t realize how much you would cherish a picture of your baby with a bruise on her face because she took a typical toddler tumble, or swollen with steroids because that is reality, or sitting on your very pregnant lap, or just one shot of the entire family together, even if everyone isn’t looking at the camera.
This is how grateful Stephanie and her family felt when LLOM provided photos of Julia. Those pictures are now in frames hung throughout the home, on phones, on mousepads, and etched in their memory. She will tell you that it’s true what they say about cancer, that when a child is diagnosed the entire family is as well. What follows is a roller coaster of rises toward hope and falls toward despair. But all the while, in spite of neuroblastoma, Julia took care of her people and showed them how to laugh through the pain. How to get dirty and wet and messy. She marked her pain literally by coloring and painting her body. She nurtured her baby sister, played with her big brother, comforted her parents, and thanked her hospice nurse sincerely. Julia was love.
At one of the Little Light photo sessions, very near the end of Julia’s life, her mother remembers feeling the joy of watching her family together mixed with the fear of knowing that it may be the last time they would all be photographed together as a family of five. I remember finally having those gifted photos done after Anna died and our twins were born, sitting with the emotion of knowing I would never have a photo of my family of six. My involvement as a founding board member stemmed from the desire to help families compassionately preserve those last days, or document the days in the trenches of childhood illness. What LLOM does for a family in one day will remain priceless through generations.
Julia’s young cousin, Caroline, was undergoing cancer treatment at the same time as Julia. Caroline’s father (and Julia’s uncle), Charles Gallagher, was so moved by Julia’s experience with LLOM that he has since joined our board of directors. Given his intimate knowledge of a family’s journey coping with childhood cancer, it’s his wish is to see the mission carried out for as many families as possible. Like six degrees of separation, everyone reading this story has a connection to a family with a child fighting a life-threatening illness, and likewise, everyone has a connection to LLOM. We all either know a family to refer, know a family who has survived the trauma of childhood illness or loss, have donated or volunteered to our cause, or will in the future. You see, we need everyone in our community to know these children, speak their names, and support their families. Bearing the unbearable is better done together.
For Julia and for Anna, and for all the children who have had lives too brief, we will be lighting a candle tonight and thinking of how we all have a lot to learn from them.
Little Light of Mine, Inc. is funded entirely through individual donations. Please take a moment to consider making a donation so that one more family can have a glimmer of light in their otherwise dark days. http://llom.org/donate/
Little Light of Mine Board President