“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.” -Anne Lamott
Between December of 2013 and April of 2014, my husband and I method-acted our way through parenting. As we waited for what we hoped would be life-changing surgery for our eight-year-old daughter, Sammi, we knew that no good could come of either her or her eleven-year-old sister knowing what was ahead. We told our adult friends and our adult family members, but we let nothing slip through the age barriers we’d set.
For our children, those five months passed with an innocence we protected only slightly harder than we coveted it. Continue Reading…
Over and over in my head, I dissect what went wrong with my advocacy for my daughter.
When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.
When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.
We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed.Continue Reading…
Between the December day when we received news of our daughter Sammi’s impending cardiac surgery and the surgery itself were nearly five fragmented, breath-holding months. During that time, life went on as usual: school, work, meals and concerts and the usual patterns of life with two children.
My days, already naturally broken into small chunks of varied activities, crumbled into bite-sized pieces of work and daily chores mixed with anxious Google searches and conversations over phone and email. In the autopilot that clicked on during repetitive activities like cooking or walking my children to school, I sometimes found myself unable to remember what had been happening in the previous ten minutes. How had I gotten to this corner? When did I add the onion to the pot?
Throughout, I was honest with friends and family about what was happening. Many had been with us for the Sammi’s entire medical journey. They had prayed and visualized a pink and smooth esophagus on each of her many endoscopy days. Some had arranged a spot in their pantry for a new, unused cutting board and disposable baking pans so that they could invite us for dinner during the hardest weeks of the six food elimination diet. These people were experiencing this with us, many of them nearly as deeply in love with Sammi as we were. They deserved to be in-the-know, and so I held very little back. We talked openly about the surgery and what it would entail; we shared whatever we knew and accepted their promises to hold us in their positive thoughts, whatever shape those took.
But some of them — more than a few of them — asked us the multimillion-dollar question: are you thinking about a lawsuit?Continue Reading…
In late December, we received decisive word from the cardiothoracic surgeon that he could fix the tangle in our daughter’s chest. I was standing in a hotel lobby overlooking an indoor waterpark, crouched against the heating vents, waving on my family and our friends to go ahead without me. I pressed the phone to my ear, memorized the surgery date and, with all the time in the world, ended the call to begin the wait.
We had decided to wait nearly five months.
The surgery was both crucial and not-an-emergency. It had to be done, but it could be held off until a convenient time. Putting aside the sarcastic question of when is it a good time for you to risk your daughter’s life?, it seemed wiser to wait for the next school vacation, which was spring break. I sat there in the lobby for a moment, staring at the Christmas tree. It was impossible to picture the next months, how they’d spread out in front of us: both the last sumptuous buffet before a fast and the last ten miles of a triathlon’s bike ride before the marathon begins.
With no other choice before me, I put my phone in my pocket and made my way to the waterpark. Continue Reading…
The story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?
That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.
But there is another story in the periphery. We have another child.
I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. Continue Reading…