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Children With Chronic Illness Need Opportunities to Celebrate Too

The pediatric patient in the adult-sized body stands in the middle of the hall crying. He is surrounded by singing nurses and doctors.

“Ring that bell, get out that door. You don’t need treatment anymore.”

A nurse shoots off a confetti popper. Red, yellow and blue tissue paper flutter over the festivities.

Kneeling beside the recliner nearby, I try to coax my son into cooperating with the nurse. She needs to wrap a sensor and small piece of tape around his finger to check his oxygen levels.

“I wish there was a bell in our life,” I say, half under my breath. The nurse and I move on to another body part. Our joint attention focuses now on the blood pressure cuff and my son’s small calf.

We are coaxing: “It’s OK, buddy. It will be quick.”

We are encouraging: “Hold your leg still now.”

We are lying: “We’re almost done.”

We’ll need to check vitals again in 15 minutes. And 15 minutes after that. And repeatedly long into the afternoon. My son quit believing “we’re almost done” years ago in a different clinic with different people in different scrubs. Or maybe it was in the middle of a therapy session. I don’t know. But adults go on saying the same words. We go on expecting the words to be persuasive enough, or the child to be naïve enough, that the result is cooperation.

The confetti nurse moves the curtain and comes into our cubical. From across the space she aims the popper at us and releases colorful tissue paper. My son tries to hide behind me. He isn’t easily persuaded; he doesn’t find the celebration comforting. At the end of the day, I will remember this as the saddest moment.

Hours later, a nurse practitioner is in our cubicle. She explains Plan B — because an allergic reaction to the antibodies infusing into my son’s veins stopped today’s dose and the whole treatment plan. Plan B is less of the same drug given more frequently, but into the fatty tissue of the stomach area instead of the bloodstream. Plan B means the patient has less chance of a severe allergic reaction. Plan B is administered by parents at home. She explains Plan B. But I hear loudest what she doesn’t say.

“I have 50 children doing this…”

No, you have 50 sets of parents doing this to their child.

“The needle is very small. You can apply some numbing cream to the skin first. Think about it and call me… we’ll want to start next week.”

Does this woman have a child? Does she put a very small needle in that baby’s body weekly and monitor for severe allergic reaction? Surely not. She would not be so rehearsed, so removed, so repetitive if she did what she was asking of me.

I try to keep the tears in my eyes, but they leak. I gather our things. I try to keep fear contained too, but it escapes as frustration toward the nurse who wants to talk about small needles, specialty pharmacies and limits of support to one training session. I put an equally frustrated child in his stroller. He kicks me. He cries. He wants to play the video game promised in exchange for getting today’s IV. I want to leave.

“Skip the bell, there’s the door, you won’t get our help anymore.”

There was no gathered circle of singers. The confetti has been swept up.

Fleeing pauses for an elevator. We are both crying. Mine — dread. His — disappointment. Mine — dismay that I disappointed him by not taking time for video games because there was no longer a medical reason to be in the clinic.

For a brief moment, I am mentally in the waiting room of the therapy center my son visits three hours a week. I am observing another ceremonious placement of a painted hand on the wall. Handprints and accompanying signatures surround me floor to ceiling. They forever mark the graduation of children who run out the door with a commemorative t-shirt.

Bells and confetti. Handprints and t-shirts. I long for such commemoration. Yet I too have bought into the belief that it is the finishers who deserve celebrations. I missed an opportunity to celebrate my child’s success in tolerating an IV and mark it by allowing the video game. Like new therapy goals that quickly replace accomplished ones, the allergic reaction moved the “we’re almost done” target and changed the expectation of child and parent cooperation. For now, I try to believe the “we’re almost done” lie.

But we’re not almost done. We are chronic illness. We are complex medical conditions. We are not finished, graduated or celebrated. There is not room on the handprint wall to laud the accomplishment of the child expected to return for years. There is not singing in the bell hall to extol the parent and child who will start plan B next week at home.

And so my son hides from confetti.

Getty image by goodgraphic