Somehow They Grow

grownI 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.

“Mommy?” she said, watching me watch her, “What?”

Continue Reading…

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Oversharing, Awareness, and the Muddled Middle

http://mamalode.com/story/detail/how-blood-dancesWhen 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…

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Feeding Therapy in a Vacuum

cerealHere’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…

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The Second Time Is Different

Sending a baby into cardiac surgery is hard.

I brought Sammi to the hospital that morning in 2006, and she was wearing fleece pajamas covered in frogs. She was 13 months old and had a light layer of soft duck-fluff hair that stuck to my face when I cried, but she had perhaps a word or two in her vocabulary, neither appropriate for anything approaching real communication. She was beautiful and soft, and she smelled wonderful, and I could trace the shape her body made on my torso as she laid there, but had I lost her that day, far more of what I would lose of her was in the future and amorphous. Our experiences together until then were primal still — nursing and holding, touch and smell, fear and love.

It was all uncertain then: who would she be? what was she like when she was not sick? how would her voice sound when she learned to sing? 

She was a mystery, yet, and grieving a mystery is still grieving, but it’s fuzzy and intangible. I would never know quite what to miss. Continue Reading…

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Handouts for Doctors

Have you read my chart?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 a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

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…

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