Waiting for the New Health Care

This morning my son fell down the stairs, using his eye brow to cushion the blow. The same place where he’s landed twice before, with the scars to prove it. This time wasn’t so bad though, so after a cuddle on the sofa with a bag of frozen peas on his enormous goose egg, a Motrin and a kiss, I loaded him onto the bus.

Throughout the day I heard from his school nurse, who is a wonderfully caring man. He was extremely concerned, and as the day progressed his concern didn’t lessen. Finally he suggested that I pick my son up early and take him to the doctor. The swelling should have gone down by this point, he felt.

For a variety of reasons, I hesitated to say I’d be right there. It was my son’s bus driver’s last day of work. They are great buddies and I couldn’t imagine what it would be like for either of them to end their relationship without a chance to say good-bye. More importantly, while I’m concerned for my son’s health and safety, I’m also concerned about pulling him out of school unnecessarily. He misses lots of school for doctor’s appointments and evaluations. My mother-sensor told me he’d be OK.

I told the nurse I’d get back to him in a minute. I then called the triage nurse at his pedi’s office. She thought he sounded like he’d be just fine. The swelling would take a couple of days; no amount of ice would do it.

I then had the awkward job of calling the school nurse back. I could hear the disbelief in his voice when I told him that I’m not coming. I did my best to explain my reasoning, but I sense that he doesn’t agree with the pedi office nurse’s take on the situation. I’m stuck in the middle of the two of them like a child of divorced parents who aren’t on speaking terms, tossing out phrases like “subcutaneous tissue” and giving him advice on five-minute on/25-minute off icing strategies. It’s not particularly fun or useful for our relationship.

I had asked the school nurse to send me a picture of my son’s bump. At first he told me he couldn’t, but he must have worked hard to get the school to bend it’s policy of not using personal cell phones to take pictures of students (because of course there is no school phone to do this with). I asked the pedi office nurse if I could send the picture to her. She said I couldn’t because they had no secure way of receiving it. They have an electronic messaging portal, but you can’t send images to it, only text. What goes unsaid is that in our current health care payment system, there’s no way for my pediatrician’s office to bill for looking at email, either.

In my mind, I envision the future. Here’s what it looks like:

My son’s school nurse calls me with his concern. I securely video conference in the triage nurse at his pedi’s office, who can see his injury. I let them talk through the medical issues, being present to represent what I know about my son and what’s important to him–staying with his friends in school and saying good-bye to his bus driver. My doctor’s office can bill for this time. Within minutes we have a plan and we all agree about it. We go on with our day. 

Until then, we’ll hobble along with a broken system and without the right tools, missing school and work unnecessarily, losing money and time to learn, or feeling guilty and awkward because we can’t all get on the same page.

Integrated family-centered care can’t come soon enough in my book.

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A gift from the messengers

Special needs fill nearly every thought and moment of my life lately. My mind has become a radio station that plays all advocacy with no commercial interruptions. Health care reform and medical home are in heavy rotation, along with the usual med refills and parent-teacher conference stuff. It’s not universally popular music like the Beatles; it’s complex, dissonant sound that requires effort and courage to listen to. Philip Glass, Rachmaninov and creepy crime drama soundscape rolled into one.

So when I found myself heading to Washington DC (yes, for a health care conference, PCORI), I decided to arrive a few hours early to unplug and reconnect with a passion from my life before special needs—art.

The visual arts have always played a sacred function in my life. Although I love words, I experience an entirely different connection with life when I react to image, line and color. Even when it’s challenging, it feels good.

It was a smart move. Strolling through the National Gallery of Art, I was transported through time and space. All thoughts of accountable care organizations and conference abstracts were arrested for a few moments. But the escape didn’t last long.

The museum’s collection includes a number of fantastic paintings depicting the Annunciation—the moment in the history of Christianity when a messenger angel arrives to tell Mary that she will give birth to Jesus. It’s such a pivotal, rich moment in Christian iconography that there are many versions of the scene in the Gallery’s collection.

The Annunciation is special to me, though not for reasons of conviction. I don’t have a particularly strong faith, more a comfort from stories told and retold throughout my childhood.

The reason the subject is special to me is because this angel, this messenger of peace, is named Gabriel. And so is my son, the one I write about in this blog.

Years ago, when I told my deeply religious aunt that we were going to call our son Gabriel, she replied matter-of-factly, “Gabriel. He will be your peace baby.” She was right. He is one of the most patient, loving, accepting, generous and forgiving people I have ever met.

National Gallery of Art, Washington DC

Even though Gabriel (the angel) is associated with peace, his arrival must have been quite terrifying. No one expects an angel to show up, do they? He’s got to calm people down so that they’ll listen to him. In most of the stories about him, the first words out of his mouth are

Do not be afraid.

So whenever I see any painting of the Annunciation, I first think about Gabriel (my son), his namesake. Then I think: Do not be afraid. And the juxtaposition of those two thoughts always stop me in my tracks.

Much of the emotion I have around parenting Gabriel is fear. Not all, but much. Fear of the future. Fear of not doing or being enough. Fear of doing it wrong. Fear of not feeling the right thing. Fear of being judged for all of it. Fear of never being able to work through the fear.

So there I am, on my little escapist jaunt, riveted by the image of this magnificent angel, appearing before a young woman going about her day. He extends to her a flower of purity, a lily, and reassures her: Do not be afraid.

Looking at one of the paintings, for one moment I am able get my arms around the fullness of my own parenting experience. The terror and the peace. The peace and the terror. It’s there, in oil on board, just right there in four square feet, inviting me to react, to feel it, to stay with it. So I do.

And then it’s gone. I move on, strolling once again. Through the Dutch masters, through the Impressionists, through the gift shop, back out on to the street, back to the conference, back to life. Both the escaping and the embracing of the fear have worked their magic, and even though the music of disability gets cranked back up again, this time it feels like it’s got a beat I might even be able to dance to. At least, I’m not afraid to try. Thank you Gabriel (both of you) for the message.