David’s recent hospitalization was filled with endless painful invasions despite his very articulate protests. He begged us over and over to stop changing him, and now the surgeon is planning far worse. David needs a series of surgeries to correct a serious anatomical problem that he cannot feel and that he cannot see. The diagnosis and course of action is now clear, but explaining it to a 4-year-old is not.
“Please don’t change me.”
We don’t want to change him at all. We have no choice.
Who is David? What makes him the individual he is?
Is David the voice calling to us in the middle of the night? The soft footsteps crossing the hall before he climbs into our bed when he wakes up before us? The requests for more books, more songs, more television, more food, more anything to avoid going to bed?
Is David the sum of his smiles and hugs and tears and screams, with every moment so intensely felt?
What defines him? Is it his curiosity about the world, tempered by his need to carefully observe situations before jumping in? Is it his focus on an obstacle or a need that can persist for hours? Or his quick frustration with one task mixed with his long humming concentration on the next one?
We see the physical. We hear the words and the tone of voice. Those change over time, of course, and we both see the continuity and learn him anew.
We feel his body struggling with ours, holding onto ours, relaxing too seldom into beautiful moments of calm. He is all energy and need, all questions and contradictions and desire for connection. Those aspects are fundamental.
He is not fundamentally his medical history, nor the necessary surgeries that are coming too soon. Those do not define a person. They are parts of his present, like his baby teeth or his hair that he will not allow us to cut. The wounds may take too long to heal, but we need to do our best to focus on anything and everything else.
He is the stories he chooses, the stories he remembers, the stories he holds close and refuses to tell. He is the people who love him, and the people he loves. He is the joy he finds in time with his best friends, and the joy he finds in learning a new skill.
He is the light of our world. We have chosen that for ourselves, and the choices we make for ourselves do define us. The mystery is that the myriad choices we make for him now shape him and change him, as do the growing number of choices he makes for himself, and yet he both becomes and remains himself. And I pray he can forgive us in time.
David, you will read this someday. Know that we love you with all our hearts. Know that the doctors are all doing their best to help you grow up big and strong, and that we are fighting for you and advocating for you and learning everything we can. Know that our hearts are breaking every moment that you feel betrayed and scared. Know that you are strong, that you have triumphed over adversity, and that we are right here with you. And know that you are you, and you get to decide what that means for yourself.
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