To the Parents of a Child Waiting for a Diagnosis

by julia Fisher

"Never in my wildest dreams did I realize it could take so long to have a specific medical diagnosis. Or that a diagnosis may never be clear. Or that the “gray area” of science would lead to the possibility that the diagnosis is “unique to your child.” Or that the diagnosis doesn’t even have a name yet.

We can’t be the only ones. We know there are countless other children and parents across the medical spectrum waiting for a clear diagnosis just like us.

Just like a diagnosis, every person and family has their own story. We’ve learned more than we ever imagined we would through the past 20 months and counting. Our journey taught us these 11 things while we wait for a clear diagnosis for our child:

1. Treat the symptoms. This is the best advice we ever received from a doctor. Although our child doesn’t have an overall diagnosis, he has a unique set of symptoms, some of which could be treated. Some of the treatments were a result of trial and error and couldn’t be easily explained — but worked. So, we treated the symptoms despite waiting for a diagnosis that still eludes us completely."

Click here to read all of the 11 things we've learned waiting on The Mighty.