This is a post that originally appeared in July of 2014 on Lilli’s Caringbridge site. It captures how we choose to live with Lilli, even while living without her.
On July 5, 2011 Lilli took her last breath. And just six days later, she would have turned 4. Still, the first twelve days of July are always the hardest, where all the emotions of her birth and her lifelong struggle and her death all come bubbling back, like an uninvited dinner guest. In years past, I wanted to skip the entire thing and wake up on July 13, but this year felt a little different. This year, I wanted to take the time to remember, to be sad, to take time to acknowledge the grief.
Often times, grief swallows parents that lose children. I’ve witnessed it several times myself and it isn’t pretty. It manifests as lack of focus, sometimes so severe that it confers an inability to complete even the most basic tasks. It manifests as divorce, as a complete loss of faith, of strength and, most tragically, of hope.
When Lilli was placed on palliative care, being swallowed is what worried me the most. I couldn’t imagine living without her for even a moment and was sure that instantly upon her death I would curl up in a corner wearing a straight jacket, hugging my knees, wishing, wanting, waiting for a time that we would be reunited. Being swallowed scared me more than the prospect of losing my only child.
And then, one day, we lost her and I was instantly crushed. The night we came home from the hospital without her, I could barely breathe. But somewhere between her death and her funeral, I realized that in order to live without her I had to figure out how to live with her. I had to make sure that every day I deliberately found some specific piece of her to talk about, to think about, to celebrate…..to remember. And to this day, this is how I intentionally avoid being swallowed: I conger hope. Some days I have to dig really, really deep; some days I find it sitting right there in my back pocket like a long forgotten note.
Everyday unlucky parents lose their children. To car accidents and carelessness and cancer. But that’s not us. We aren’t unlucky because every year, people remember Lilli with us. They dress up in pink at String Summit, they wear tutus and pink earrings and feathers in their hair. They sing her song. And every time that someone climbs a thousand stairs or shaves a hundred thousand hairs or raises money or fights cancer in her memory, it reinforces and refreshes that wellspring of hope. It allows us to move through our day with resilience and strength and grace and love. It allows us to grieve without being swallowed. It allowed us to have another child and love her and to have faith that life is indeed livable. And maybe, just maybe, as a big, enormous bonus to the hope it gives, the money it raises will help bring new therapies so that someday, cancer is not the number one disease killer of children and grief has less people to swallow.
We are so grateful to those that continue to make sure her memory lives. Please donate and support them in their efforts. It means the world to us.