I am writing to you from the window of a coffeeshop. I sip from my hot mocha, listen to my headphones, and look out at the cars going by. Where I live, there has just been snowfall, and the pedestrians are like me on my walk here: bundled, hunched against the cold, hurrying. Inside, people surround me, but I’m trying not to engage with them.
I’m thinking about you. Who are you? Why have you come?
For years, I spent countless intent hours searching for information that would help me solve the mystery of my daughter’s health issues. Even when we thought we had a solid diagnosis — laryngomalacia when she was an infant, repaired double aortic arch when she was a baby, reflux when she was a toddler, eosinophilic esophagitis when she was a little girl — I wanted to know how to handle it. I wanted to know how other parents made their children’s lives easier despite the diagnoses. I wanted to know how other parents made their own lives easier despite the diagnosis.
I was hungry for connection and knowledge. I was desperate for validation, advice, and other parents to either assuage my fears or tell me how they made their peace with the same ones.
What do you need?
As I try to imagine you and what has brought you here, I am mostly shooting my imagined support into what looks like a mirror: me, years ago, needing what I needed. That might be what you need, and it might not be.
What brings me to write to you is an article I read today. Last year, my friend Kelley Clink published a shatteringly beautiful and utterly heartbreaking book about her brother’s suicide twelve years prior. I actually remember the day that I heard her horrific news, and how my husband and I sunk to the edge of our bed and simply held each other’s hands and tried to shoot love into the universe on her family’s behalf. Her journey through the grief of the years that followed is well worth reading, but what makes me bring up her story here is this article Kelley published on Huffington Post last week. She had been asked to talk to a book group who had lost a member to suicide. They asked her how to move past survivor’s guilt, and she writes:
I wanted to be the hero, the sage, the one who knows where all the land mines are buried in the field of grief and, most important, how to dig them up safely. Then I remembered a quote that one of the other women shared at the end of our meeting, from the author Marianne Williamson.
“Something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor.”
And I realized, “Who am I to stop anyone’s knees from hitting the floor?” The intent — to decrease someone’s suffering — is pure, but the action robs survivors of the validation their grief needs. The most powerful, most helpful thing I know to do is to tell the truth, even when it isn’t what I want it to be. I also remembered that when you stop trying to chase away the guilt and the hopelessness, they have room to become kindness and compassion. When you give them space, they can lead you to empathy and love.
I know, writing all that I do about our journey from diagnosis to misdiagnosis to what lies beyond the proper diagnosis, that many people may be coming to this site without that same future ahead of them. Some of their children have eosinophilic esophagitis and always will; it is not a misdiagnosis for them. Some of their children will have a vascular ring repaired and never need medical attention again, and all our fraught years will not be repeated for them. Some parents may be coming to this blog terrified and leave relieved; some parents may be coming here feeling calm and leave quite frightened. But, as Kelley says so eloquently, having come through it the way we did left the space for a larger purpose. There is room for me to give this path meaning — for me and for you.
What can I give you?
As I wrote in my first blog post, “…I write this blog — for me, hit over and over again in a fight to parent my children according to my instincts, and for you, who may be where I was and have been: alone in the dark, searching for someone who understood. If I understand even a piece of what you are experiencing, and if you’re anything like me, I’ll be glad to know you.” What I didn’t say then, but I want to tell you now, is that this odyssey is like so many that parents of medically mysterious children face. I want these words to capture the fear, curiosity, joy and devastation that accompany the experiences we’ve had, but I also want to add as much value as I can for the people who come to share the path.
Tell me, please: who are you? why are you here? what do you need?