I took my younger daughter, Sammi, to the pediatrician’s office today for some routine vaccines. While we waited for her turn, I noticed a woman across from me with a preschool aged daughter, sitting in front of an infant carseat. The baby in the carseat began fussing, and the woman said — tenderly — “Oh sweetie, you’re fussing already? You haven’t even had your shots yet.” Then she reached down and lifted a bundle of pink into her lap.
Remembering those early days, I smiled at her and said, “If you need a hand, I’m happy to hold her for you. It’s been a long time since I had to bounce a fussing baby. I’m not tired of it anymore.”
She smiled back and said, “Really? If you don’t mind…”
“Not at all!,” I interrupted, making my way across the room to her.
She continued, “…you could take him. He’s starting to squeak too.”
That was the first I had noticed the second infant car seat. A delicious baby boy smiled at me from within it. I unfastened the distantly-familiar shoulder straps, pressed the button to release the buckle, and slid one hand each under his round head and his diapered bottom. He gurgled at me, and I sat him in my lap facing his mother, my arm across his bared stomach.
When the mother was called by the nurse, I carried my new little baby-friend back to the exam room, nestling him in his car seat and waving goodbye. Then I returned to my nearly-eleven-year old, who just this morning had looked like a little girl next to her teenaged sister, and now suddenly looked like what she was: a preteen, just a hint of changing skin and growing limbs and, indeed, puberty easing its way across her path.
In the years since my daughter’s medical mystery was solved, I’ve struggled to silence the what-if voices that whisper to me in quiet moments. What if we’d figured this all out when she was two? What if we’d figured it out when she was four? What if we’d figured it out at five? What if her care had been managed by a multi-disciplinary team from the very beginning?
These what-ifs serve no purpose. They don’t change anything about the moment I inhabit right now, a moment in which Sammi, my resilient, remarkable kid is currently riding an enormous horse with her best friend after gobbling pizza with her last night and sharing pancakes with her this morning. Her legs fill in her jeans, her cheeks are full and bright and sun-kissed, and I am truly, honestly, not worried about her. The what-ifs can’t touch that. They can’t touch her future.
When my medically complicated daughter was only a few years old, a close family member said something that I’ve never been able to forget. I’ve thought about it often, especially as I’ve been writing about my daughter so publicly.
This family member was a new parent with a fussy, unhappy baby. He was complaining that nothing he and his wife were doing to soothe their baby was helping, and I asked if they’d asked any of the parents in their new baby group for ideas.
“No,” he said, “we’re just more private.”
“But maybe someone knows of something — a product or a position or something — that might help,” I countered.
“Look, that’s not how we are,” he answered. “That’s more you. You’d tell any random stranger in your kid’s kindermusic class all about her medical problems no matter what they’d think about you.”
At the time, I felt slapped. I felt hurt, and I felt judged. The tone with which this was delivered was so derisive, as though I was indiscriminately blurting out the story of Sammi’s first cardiac surgery to anyone who didn’t run away when I opened my mouth. It made me feel like an embarrassment. Continue Reading…
Here’s the crazy thing about taking my 8 year old daughter to feeding therapy: no one important really knew we were there.
There was a complex set of circumstances that brought Sammi to the cheerful basement office suite forty minutes from our house. Unaware of this were a host pediatric medical specialists: an office of gastroenterologists, a cardiothoracic surgeon, an otolaryngologist, an endocrinologist, and her general pediatrician. Though all of them examined her, declared her capable of eating, and recognized that she did not, in fact, eat well, not one of them had recommended feeding therapy.
They didn’t recommend it when, despite the compression on her esophagus having been surgically relieved possibly for the first time in her life, she failed to eat any meal in under an hour — including a simple bowl of cereal at breakfast. Continue Reading…
This Ted Talk was produced in 2011. While Dr. Goldman was speaking eloquently and so bravely about his humanity as a physician, my daughter Sammi was in kindergarten. That is, she was in kindergarten when she wasn’t on an operating table or in the gastroenterology clinic at our local children’s hospital, being treated for eosinophilic esophagitis, a condition with which, we would learn three years later, she had been misdiagnosed.
Dr. Goldman’s talk gives me hope. My bitterness about the lost and wasted years we spent engaged in the fight against the wrong enemy has not resulted in a lawsuit, not because I am not furious and not because I am not heartbroken and not because I don’t believe we could win. We haven’t sued because Sammi’s doctors are human beings. Continue Reading…