Actual, Real, Helpful Help

Swallow, My Sunshine: Bridge

A family in crisis, if they live in an active community of family or friends or both, will find themselves fielding regular offers of help. This is so many orders of magnitude better than the alternative of living in isolation, surrounded only by one’s own panic, but offers of help are not nearly as good as actual help, delivered while requiring as little as possible from the people who need it.

Article after article have been written about “ring theory,” the idea that, using a map of concentric layers around a person or family in crisis, support and comfort go in and complaints and requests go out. At the center of the circle is the person with the core issue; in the example of a family with a sick child, the child is at the center. While a parent might find their child’s howls of pain excruciating to hear, she would never dream of complaining about them to the child himself; more appropriate would be to complain to a good friend.

from story at http://www.latimes.com/nation/la-oe-0407-silk-ring-theory-20130407-story.html#axzz2kF8iBw9U

Illustration by Wes Bausmith / Los Angeles Times

This is common sense, but sometimes, the farther out from the center, the harder it is to remember.

Everyone knows not to complain to the parents of a sick child about how much work it is to support them and their child during this crisis, even though it is indeed HARD to be involved in a crisis, however little it really touches your own life. Being around fear and anxiety is, itself, traumatic. Still, we know, as ring theory tells us, to “dump out.” It becomes trickier when it’s not so much “dumping” our complaints as it is “dumping” the hard work of finding out what our struggling friends really need. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Summer and What to Do

summer chair at the lakeIt is summer here in the midwest, and like nearly every summer for the last nine years, I’m balancing conflicting impulses: to work as hard as I can in every moment my children’s schedules and propensity for all-day-tv-watching will allow, and to spend as much quality time as possible with my children while they still want to spend time with me.

We’ve had memorably difficult summers, of course, like the summer when Sammi, the sunshine of this blog’s title, began the first and most restrictive phase of her six-food-elimination-diet for eosinophilic esophagitis, and the summer after her aortopexy surgery, when I took her for feeding therapy every week. Those were sunny days with metaphorical thunderstorms always looming.

This summer, though, is as perfect a summer as I can imagine. Everyone is healthy. Both my daughters have just the right amount of independence and connection, and I am writing this from the window of a coffeeshop where Sammi left me on her way to day camp. She’ll pick me up later. I have a full slate of work, a hot latte, and not a single doctor appointment on our calendar for the foreseeable future. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

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…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Dear Weary, Frightened Mom

raspberriesheartDear Me, Two Years Ago,

I can see you, standing at the kitchen counter, packing up another lunch you’re sure you’ll see again, nearly intact, in seven hours. I see you cutting that tortilla in half a little too angrily, putting cookies in a bag in a ritually delicate way, hoping that if you don’t break them, she’ll eat a whole cookie instead of the half that breaks. I see you counting raspberries, asking yourself how many she can eat during her snack time so that, by lunch, she’ll only have more calorie-dense food left to fill her up.

I see you struggling not to ask her if she ate her lunch when you greet her after school. I see you handing her a banana right there on the playground, too distracted by waiting for her to peel it to really hear how her day was. I hear your teeth clenching. I can feel your toes curling in your shoes as you chant, in your head, take a bite take a bite oh my lord take a fucking bite, NOW. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Unlearning the Body

chocoAfter six weeks on a fat-free diet and a week on a low-fat diet, my eight-year-old daughter Sammi was officially released from all her food restrictions by her cardiothoracic surgery team. Her chylothorax — a leak in the thoracic ducts that process fat — had completely healed.

The two of us had decided to spend the day together in downtown Chicago, starting with a visit to the Hershey Store. After all, it had been nearly two months since she’d had free rein to eat anything she wanted. I thought that surely she would gorge herself on candy while I watched gleefully.

Instead, she nibbled timidly and said, “I’m full for now.”

It was heartbreaking to realize that, as far as she’d come — years of false diagnosis with reflux, then eosinophilic esophagitis, then a revelation that her swallowing problems stemmed from a structural obstruction in her chest, culminating in major cardiac surgery — she still had more hurdles to jump. Of course we couldn’t undo eight years of her experience of eating in one day at the candy store. Why had I been so naive? Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather