Chasing the name
I spent a lot of time this spring chasing a diagnosis for Oscar. I mean, not just any old diagnosis, because he has a ton of those already. I mean THE diagnosis. I wanted to know, conclusively and concretely, the thing behind the symptoms. Why is Oscar the way that he is? What is the name for the thing that he has, this singular constellation of freaky malfunctions? What are its borders? How is it different from this known syndrome, and not quite that known syndrome either?
The question boils down to being known. I love this kid so much that it sometimes hurts to breathe when I think about him for too long. I want to know him, every particle of him, every cell of him, every micron of his DNA.
I want to know him the way God the Father knows me, because that kind of knowing is the love that knits our bones together.
But somewhere along the way, I got lost. Instead of contemplating my beloved son as he is, I settled into a pattern of chasing and seeking, of breaking his being down into its component parts for analysis. I spent hours, then days, then weeks looking into undiagnosed diseases programs and weighing their relative merits. Should we choose one specific to epilepsy? Focused on genetics? Cast the widest net possible? I looked as far as Boston, New York, Washington DC, Los Angeles.
It’s funny how much the testing, questioning, and referrals can become a job that causes you to miss your actual everyday life. On the one hand, yes, I am leaving no stone unturned, because I want the best for all my children. On another level, slightly less selfishly, I want to contribute to the base of universal knowledge. Oscar’s is an interesting and unusual case, a ripe source of new data. But at the end of the day, I have to ask: Am I putting my energy into the most effective thing?
It took a pilgrimage, and then a metaphorical door slammed in the face for me to see the answer to this question.
Before I formed you in the womb I knew you,
and before you were born I consecrated you;
I appointed you a prophet to the nations.
– Jeremiah 1:5
Oscar is already fully known and fully understood in all the ways that matter, by the One who made him. It was never my job to find The Ultimate Answer to his bodily disorders. I need to know only what is necessary to take care of him and love him, and no more. Straining beyond that is not only a grievous misuse of the limited time allotted to me on this earth, but it is a grievous instance of the sin of pride. It is the sin of Adam and Eve, of grasping at knowledge reserved for God.
There is an intricate balancing act here, of course. I DO have a responsibility to get my children the help they need to thrive, so that they may grow into the people God created them to be. Oscar needs more help than most! But there is a fine distiction between diagnosis for the sake of tweaking treatment protocols, and diagnosis for the sake of Having All the Answers.
That long journey I began back in January hit its final dead end this month, when a months-long study of his entire genetic sequence failed to turn up an explanation. Oscar’s multi-faceted collection of tiny diagnoses, when added together, equals… a multi-faceted collection of tiny diagnoses. The sum of the parts is just a mess of a million parts. He doesn’t fit any known or previously described syndromes. But I refuse to become a slave to the monster of finding an answer. For some kids (like Oscar?) there may never be an answer to be had on this earth. Or the answers, once found, may not actually answer anything — may not change the course of their lives in any appreciable way.
My son is here to be loved, not studied. He is to be known for himself, not known to be categorized. He is a prophet to the nations about the beauty of brokenness. He is a call to deeper love, a herald of miracles, a sign of contradiction.
What’s in a name? A rose by any other name would smell as sweet.