Learning to Move Forward After a New Diagnosis for My Child

It is a gorgeous day. We even remarked on the way in to the check-up that it was a perfect sunny day. We breathed in the warm air, soaked in the sunshine, meandering through cars on the way into cool, clean, hospital air. I thought the day would pass like any other. Do the copay, be brave through the lab stick — regular visits are my child’s normal. But even our norm gets jolted sometimes.

The doctor was quiet during exam, and it seemed his typing was lengthy too. I found myself already hoping it was nothing, just the usual thorough procedure. My daughter even questioned, “How soon will he be done?” My little star patient. And then he turned to me. Serious. Compassionate. And he quietly told me we had another change, one that requires the neurologist. We already see so many specialists, but oh, this one?

The breastplate of new diagnosis clicked into place, a weight pressed on me, as has happened before. Always a normal day, turned abnormal. A parent with a chronically ill child knows the weight. It isn’t exactly fear, or sadness, not an instant heaving — it is a physical cloud, come to sit upon my center.


As I walk around, parking lot, grocery store, I know no one can see it. So I breathe deeply, wishing the extra oxygen would lift the weight. It is no use. I pray and give my worry to the Maker, but the weight still sits and settles. I call and talk to the nurse. The weight remains.

Maybe it will last only until we have test results. Oh, but maybe it will be heavier then. Not knowing or knowing — either way, an answer isn’t always a cure. And for all the diagnoses so far, there is no cure, only slow acceptance. We’ve learned to move forward, and I am grateful they have been staggered. I could not have managed the weight of all of them at once.

For now, I sit with solitary knowledge. Do I call my husband at work? Do I interrupt his day to bring him onto the team or do I wait until his day is done — protecting his “normal” for a few more hours?

Life before diagnosis… was I light and carefree? No. Many of us live differently only after illness or death — for then we often realize what is most important in the mundane, and what is truly worth worrying about (nothing, unless you want to borrow trouble from tomorrow.) I can only live right now, in today, perfectly sunny and warm. Tranquil, but for the weight on my chest.

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