There are so very many little boys in the world, but this one, he is mine. Perhaps the ownership of a child weights the heart in a way that defies logic or odds or even a semblance of rational love. Parenting is far from all of that and when your little boy is not like all the others, you wrap him up in every fibrous emotion that had eluded detection in the sphere of motherhood of which you are now a stranger. An outsider to the typical and regular life you once called your own and yet, an insider privy to emotions that had never registered before him. An infinite number of them, more like the meteors than the tranquil stars. Millions of feelings whizzing by and rushing through and my role as mother is to protect, ward off, embrace, shield, interpret, meander, decipher, allow, avoid, and yet, it is never enough. A guessing game at its’ very best.

They said no. It’s a no. I read a whole letter from Duke University Hospital to be offered one simple word, simple and quite powerful, no. Did they know how it would feel to get that letter? Did anyone brush away tears or hesitate to press send on the email telling me that my son was not worthy of the program created for families desperately seeking answers? Of course, they have to choose and I am sure there were families needier than ours, as my oldest son said, but I am only responsible for this one little boy. He is the one I call my own and so, I wonder what now. If a no to the Undiagnosed Disease Network, where next?

There is time for that, I tell myself this evening. After all, we have waited four months to hear the word no, though we hoped and wished and begged and pleaded for a yes. I think what hurts the most is it feels I have let my precious boy down. I have done my very best and it was not good enough and I’m so tired of playing this game of which I don’t know the rules, proper strategies, or even the key players. I’m so very tired and yet, I can’t ignore the profound effect of perspective.

I am kinder these days. I am softer and not so resilient anymore, the tough girl gone away for the most part, replaced by a tender hearted daughter, girl, woman and most of all, a so very desperate mother. A mother that has grieved the son that is unlikely to ever apply to Duke University as a high school student and so, for him and maybe me too, the firm no at age three is just too much to bare in this moment. This little boy is worthy of yes, again and again and again.