Two weeks ago, we began the day mourning the loss of David Bowie. My husband busted out the Bowie vinyl and we spent the afternoon listening to Changesonebowie and taking funny pictures of the cat sitting next to the album cover to post on Facebook. A loss of an artist of that stature is felt by the whole world. It’s strange to mourn someone we never knew personally, but losing an artist’s unique voice affects people in a very real way. We’ve lost something from the world that can never be replicated.
Later that evening, I finished teaching voice lessons and walked into the bedroom to ask the hubby what he wanted for dinner. Before I could say anything, in a voice devoid of any emotion besides complete shock, he said, “Kate relapsed.”
Kate is the daughter of one of Chris’ closest friends, Mike. At the age of two, she was diagnosed with Pre-B-Cell Acute Lymphoblastic Leukemia (ALL). A very treatable form of pediatric cancer, but cancer nonetheless. For two years she and her family endured grueling treatments before she was declared in remission in September. Her mother Lindsay is the most organized person on earth (sit down, Martha Stewart) and kept detailed records of every aspect of treatment, every medication, every reaction, etc. Cancer treatment is agonizing physically and emotionally but Kate made it through without the major setbacks that a lot of kids have. We knew that there would be lingering effects and issues to deal with post-chemo, but I don’t think anyone who knew the family considered for more than a passing second here or there that Kate wouldn’t make it through. My best friend’s brother had leukemia when we were kids, and he’s all grown up now with a good job, a new wife and a pretty good life. Kate had the odds in her favor, along with rockstar parents and grandparents who were doing everything they were supposed to do in order to get her well.
Kate passed away the next morning. 4.5 years old. After only 4 months of normal. 4 months of family trips. 4 months of preschool and new friends. 4 months without tubeys and pokies and steroids. At her last doctor’s appointment just a few weeks earlier, her counts were “perfect.” The leukemia just came back with a vengeance, and as strong as she was it was just too much for her little body.
To sit with parents at the worst moment of their lives is as raw and real as it gets. Most of the guys who were groomsmen in our wedding (including Mike who was Chris’ best man) have been a close group since grade school, yet Chris couldn’t remember ever seeing Mike cry. As another of them put it, this was “uncharted territory.” They have seen each other through weddings, divorces, issues with parents, children, illnesses, etc, but this…..What do you do to comfort someone who means so much to you when you can’t give them the one thing that would make it better?
You sit. You cry. You laugh when there are no tears left. You bring food, paper products, wine, not just for the grieving parents, but for the many, many people coming to the house for the same reasons you are. To offer what little support they can. To try to find the right words, or perhaps even harder, to try not to say the wrong words. To show them how much they and their little girl are loved, because at a moment like this love is all there is.
The week leading up to Kate’s funeral was gut-wrenching, awful, painful in ways that I could never imagine even in my most empathetic moments. And yet, there was so much that was beautiful. We spent as much time at their house as we could, and I fell absolutely in love with everyone I met because of the pureness of the love and grief and sincere desire to mitigate the pain in any small way they could. There were friends new and old, there was family, there were co-workers, there were “mom’s groups”. The “ninja” friend who throughout Kate’s illness would leave little care packages on the front stoop without anyone knowing she was there. The nurses who become like family after seeing their little patients week after week, who are somehow strong enough to keep doing this work without losing their kindness and empathy even after witnessing indescribable grief and suffering. Two of Chris’ friends sat in Kate’s playroom scrunched up at a child’s table with a Mac for over 8 hours designing the program for her service because “Kinko’s isn’t good enough.” Lindsay’s company took care of the whole reception for them, complete with Kate’s favorite treats. It was a tidal wave of love and caring that reminded me in the sweetest and most painful way that there are some really amazing people in the world. And then there were my own friends who don’t know Lindsay and Mike, who joined the Facebook page dedicated to Kate, who contributed to the online fundraiser, who lent me an ear so that I could pour out my own grief to them and then go back to be present in any way I could for Mike and Lindsay and my husband and all of their friends.
At times I feel as though the talent that I have spent my life developing is frivolous and useless, and I wish I was better at thinking of gift ideas or domestic tasks or cooking meals that are far more practical life skills. But it is also an honor to play a small part in making a significant life event a bit more beautiful and meaningful through music. Up to this point, those events were almost all weddings. When Lindsay and Mike asked me to sing at Kate’s service, at first I wanted to say no. Not because I didn’t want to do anything I possibly could for them, but because I felt it was too great a responsibility and I was in no way confident that I would be strong enough to sing around the lump in my throat and the pains in my chest. But in the end I could never say no to them. I would have to lock myself in my studio and practice the songs over and over until I could make it through them without breaking down in heaving sobs. I’m not the praying type, but if there was any divine help offered I asked for it. And somehow I was able to sing for them at this most precious time – not my best, but well enough so that the music could do what music is supposed to do. One of my favorite quotes is from Aldous Huxley – “After silence, that which comes nearest to expressing the inexpressible is music.” There is truly no real way to express the pain and grief at a loss like this, but it was the most precious honor to play that small part in the celebration of this far too short but hugely significant life.
I used to believe that everything happens for a reason. I don’t necessarily think that’s true anymore. Sometimes really shitty things happen to really good people and there is not a single fucking good reason for it. People can try to do everything right, and still are left with wounds that will never completely heal. We are not always changed for the better after experiencing pain. But after reflecting and trying to process this most heart wrenching loss, I do believe that we can find purpose in tragedy. Through Kate, I have become aware of other parents who have dealt with losing their child to pediatric cancer. Many have started their own foundations, either to raise money for research, or raise awareness through various campaigns, or provide support to other families. Right now, Lindsay is writing. Her writing is beautiful. A true gift. Kate’s Facebook page has gained over 3000 followers in the past few weeks, and it’s all due to this beautiful child and her mother’s achingly poignant honesty. One day, when she is ready, I hope Lindsay continues to use this gift to provide comfort to others struggling with loss, or to inspire people to get involved in the cause. She and Mike and Kate have already inspired me and countless others.
I have been in the music business for so long that I lost faith in people. I’ve grown to expect that most will be out for themselves, that most don’t care about you as a person but just for how much money you can make them or what connections you can provide them, and I’ve learned to keep my guard up so as not to get hurt or take things personally. So many people posted on social media how sad they were about David Bowie, when that grief doesn’t even begin to compare to the loss of this child to those who knew her and her family. Being on the road takes so much time and energy away from so many people I care about. I had forgotten how many good, kind, unselfish people there are in the world who will come out of the woodwork to help in any way possible when it counts the most. They proved that there can be beauty in the pain.
I’ve been struggling over the past few months trying to decide whether it’s worth continuing full time as a performer. On one hand, it is silly, frivolous work compared to a pediatric cancer nurse. They are truly heroes. On the other, it can give me a platform to draw attention to causes that I care about. And I, like so many others, want to do SOMEthing. For Kate. For her family. For other families. SOMEthing that can help in any small way. Maybe organizing a benefit with other musicians, or wearing gold ribbons while I’m performing, or keeping a picture or trinket on stage that someone may be curious and ask about, and then I can tell them about a perfect, beautiful baby girl who affected so many people and is now gone because of a stupid, scary, wretched disease that should have a freaking cure already but with only 4% of cancer research funding going toward pediatric cancers it’s not enough.
It’s not enough. It’s just not enough.