Monthly Archives: February 2016

What to Bring

bagIf you are ever the person I was, packing a car to drive to the hospital for your daughter’s seventeenth time under general anesthesia (this time, to move her aorta away from her esophagus), you will need to bring many things with you. Take notes. I know exactly what you will need, if you are ever the person I was.

First of all, you need clothes for you. You need soft pants and a roomy shirt to sleep in on an uncomfortable set of cushions by the window, cushions whose ill-suitedness for restful sleep you will not notice as you sink, delirious with exhaustion, in and out of a black slumber twenty times a night. You need thick socks and slip-on shoes so that you can perch on the edge of the bed and then jump off quickly to skitter across the room and grab the emesis basin, the phone, the nurse’s call button. You need more hooded sweatshirts than you would have predicted. You will be far colder than one would expect.

You do not need clothes for your daughter. Though you may have thought ahead to the incisions and the need for button-down as opposed to pull-over pajamas, you have somehow forgotten the snaking tubes and lines and leads and wires that would need to be disconnected in order to manage something as complicated as sleeves. She will only need hospital gowns. The pajama bottoms, while a nice touch, are only an impediment to quick bathroom trips, of which there will be many.

Perhaps, just bring her some socks. 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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What My Children Don’t Know

debi“Becoming a parent will change you forever,” popular wisdom tells us. Pregnant or waiting to adopt our first children, we are told all sorts of things about who we’re about to become. Our parents tell us, or our friends who already have children, or our friends who don’t already have children, or grannies at the supermarket, or obstetricians and midwives. They all have so many things to tell us about all the ways we’ll change.

They tell us we’ll never sleep the same way again. We’ll never watch the news the same way. Our life goals will change, they say, and we’ll come to laugh and cry over things that didn’t seem funny or sad to us before children. We’ll eat differently, shop differently, dress differently.

It’s all going to change now, they say.

The reality is that, as true as this is, some things about me never changed when I had children. After all, I had nearly thirty years on this earth before my older daughter arrived, and some things became ingrained. As a human being, the circumstances surrounding me changed, but at my core, I believe I did not. I believe that none of us really change: not with children, not with spouses or life partners, not with jobs or homes or communities. Continue Reading…

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Terrible Conversation, Part II

conversationGiving a child bad news hurts on every level. Integrity tells us to be honest, realistic, straightforward. Nurturing tells us to soften the blow. Getting the combination right means compromising both.

When we had to tell our daughter Sammi just before her fourth birthday that she had been diagnosed with an inflammatory disorder called eosinophilic esophagitis, we did it in an age-appropriate way that, thankfully, also forced us to simplify the problem for ourselves. The new diagnosis meant a host of food restrictions that would change over time, but we focused on the first six weeks that would exclude dairy, eggs, soy, nuts, and wheat. I wrote about that conversation in a previous post:

We explained that we had good news; we now knew why Sammi’s food kept coming back into her mouth. Her esophagus was sick! We drew a body on paper, showed them where the esophagus was, drew a frown on it. We talked about allergies, about our friend’s daughter with celiac disease, about feeling crummy and then feeling better. We brought out the list of allowed foods and cheered along as favorites were listed.

At that young age, she was hardly able to comprehend it. Sammi ate what we gave her, followed the rules, and over the course of the next three-and-a-half years, endured more than a dozen endoscopies. She did everything we asked. She even participated in a barium swallow study and a strange and very uncomfortable CT scan without ever asking us why.

Sometimes, I feel horribly guilty that she never asked why. Continue Reading…

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