It was December, 2013, when we had that awful conversation, the doctor and my husband and I.
It was cold out, and my body wasn’t ready for it yet. That’s why my chin was quivering as I sat in the upholstered chair next to the window, cradling one phone while my husband stood alert in the next room with another extension in his hand. It was cold outside, and I didn’t have my winter metabolism running by then, so my hand shook. It shook so much that the paper in front of me was blank the whole time. I never wrote anything. At the end of the conversation, when the doctor’s excitement oozed through the phone because the missing piece might really fit in the puzzle this time, my paper was blank and my toes were tucked under my bottom in the chair, holding me tightly into the space where I was curled now, so cold, so cold because I was near the window, the winter window, on a frigid day. That’s why I shook. That’s why I shivered.
How many people had to love this child for this picture to be here, bright and beautiful and nearly bleached-out with sunshine?
The grinning child in the center has been home from the hospital for five minutes, five minutes that followed forty in the car; forty minutes in the car that followed six days in the hospital; six days in the hospital that followed three hours in cardio-thoracic surgery; three hours in cardio-thoracic surgery that followed five months of knowing it was coming. Continue Reading…
Between June of 2010 and May of 2011, my daughter Sammi progressed through the six food elimination diet for a rare inflammatory disorder called eosinophilic esophagitis. In an effort to determine which — if any — of the most commonly allergenic foods might be irritating the tissue inside her esophagus, her gastroenterologist asked us to remove dairy, eggs, soy, wheat, and all nuts from her diet, which was already vegetarian. One by one, we added foods back in as endoscopies and biopsies guided us as to the foods that seemed to be safe for her.
On this blog, the most popular post is called Practicalities of the Six Food Elimination Diet. It was my first effort to write the content that I wish I could have read while Sammi was on this diet — a lot of empathy and even more practical, straightforward advice on where to start. So much information on elimination diets online focuses on adults who can, for the most part, understand that what they’re doing is for their own good. Adults can sit in front of uninteresting, repetitive meals for weeks on end and make their peace with it. Children often don’t have that same ability.
As I’ve seen how popular that original post of mine has become, I’ve wanted to add to it, to provide more information to families who are struggling to feed their children with both attention to the restrictions of the diet and with love and compassion. To that end, I wanted to share a typical day for Sammi — who was five years old at the time — when she was on the full elimination. Continue Reading…
In December of 2014, I had my first meeting with Deborah Siegel of Girl Meets Voice, a consulting firm helping women get their thoughts and world-changing ideas out into the world. Deborah looked with bright, interested eyes over the table at me and asked, “what’s your idea? what do you need to say?”
I had walked into that meeting thinking that I knew exactly what I wanted to say, but when she asked me so directly, I wasn’t sure. I stammered out that I wanted parents to feel empowered to push against doctors who weren’t listening. I added that I wanted those parents to feel less alone, that their worries were shared and that they had more in common with each other than their distracted glances in crowded hospital waiting rooms.
Within the community of families with special-needs children, there is a well-known poem/essay called “Welcome to Holland.” It became famous in this community because some loved it and felt it really spoke to them, and some found it galling and infuriating. In “Welcome to Holland,” the writer, Emily Perl Kingsley, compares life with children who have special needs to a flight she expected to arrive in Italy, only to touch ground permanently in Holland. The rest of her life is filled with experiencing all the real, tangible beauty of Holland, even as she has to hear all the stories of Italy she will never experience firsthand.
It’s an obvious metaphor, and certainly simplistic, but it’s easy to see the comfort it might provide. Few pregnant mothers dreamily stroke their stomachs and imagine the beauty of the metaphor in which Holland stands for a life of health struggles and emotionally draining paths to seeing one’s child’s basic needs met. However, once they stand in on the tarmac in the strange land they’d never considered, it’s only human to peer into the distance and seek out the tulips. Those tulips are real, at least some of the time. Continue Reading…