Seeking A Diagnosis
I have awaited many invitations in my four decades, but none that stirred up emotions quite like this. I thought the time of awaiting invites was nearing an end for me. Gone are the days over excitement for word of a birthday party, a sleepover, a college acceptance or even the magic marriage proposal. No more jittery self waiting to hear, or so I thought. I was wrong, once again. How was I to know the biggest invitation would be looming on the horizon? I should have known; if only I had screwed my eyes shut in an effort to remember, but I did not.
I can go back so quickly to twenty five years ago and remember the details with admirable clarity; I know this because recently a third party offered his perspective and it was nearly identical to my own recollection, surprising for a mind that I feel is not quite up to speed these days. No, I shall never forget the urgency in my father’s voice, the pleading in hushed tones to the physicians, the yelling in a tense meeting behind a nearby heavy wooden hospital door, the faces of parents who clung to hope and thought, if only we can find answers, a diagnosis, get him to the National Institute of Health (NIH). If only we get the coveted invitation, the formal acceptance to a program that specializes in the unknown.
How had I forgotten these invites were available? I hadn’t really but thought they were restricted to the very ill. My brother was growing sicker by the day and by the time he received his golden ticket to the premier research institution, he was too sick to go. A few months ago I wrote a story detailing the unknowns of the journey with Amos, our nearly three year old son. It was quite detailed and in hindsight, was a plea for help, for Amos, for me, for my family, desperate to know the story behind his medical anomalies and severe delays in development. I worked hard on that piece and wanted it to be quite accurate but never did I think that it would become part of an application to receive a precious invite for my son.
Today I emailed a lengthy application and referral letter to the Undiagnosed Disease Network, of which Duke is a participant. It is one of several prestigious hospitals in the country that has teamed up with NIH so that more families can be served or assisted in finding a diagnosis in the name of research. We all know it is more than that; to me, it is hope or the light at the end of the tunnel that may not change things, but we will know and I want to know. If accepted, Amos and I will travel to Duke and spend a week with an incredible team and have every test they think would be helpful. No arguing with BCBS, all extensive testing paid for by the research grant from NIH. Extensive genetic testing, MRIs, hotel and meals, you name it and this time it could come without a fight. The one unknown is will it come?
We shall wait the next two months with baited breath and will likely be anxious as I check the mailbox each afternoon in hopes that Amos’ golden ticket will be waiting. Until then, we have more than we can possibly do, oral motor exercises, school schedules, all the stuff that travels with moms and so, I will try to be patient. I have a good feeling about this and so, I take that token of grace and will wear it as a badge of encouragement. We will hope and smile and we will believe that the plan for Amos is magnificent. His story is not the one I envisioned but it is one I would never trade, the journey of a life well-lived, a little boy enviable in the light he offers and the joy he radiates.