Tiger v. Dragon

Last month Emily Rapp published a piece in The New York Times about how to parent a child you know will die. Her family's story, entitled "Notes from a Dragon Mom", touches on both the tragedy of knowing you will lose a child and the freedom that knowledge gives you. It is a freedom to focus on each day, to love your son or daughter without becoming needlessly fraught over all the inconsequential nothings so many of us find ourselves perseverating over.

Should we be more strict? Should we have chosen a different preschool? Should we have allowed more or less play time or television or juice? Do these things matter? Not, Miss Rapp tells us, if your child will not survive the first few years of life. It is impossible to read her thoughts without feeling both incredibly moved and incredibly grateful. There is a purity in her tale, a peaceful acceptance, that I believe is only possible because her child's diagnosis, Tay Sachs, does not come with any ambiguity. I do not pretend this is a place the families of children with Tay Sachs do not come to without a great deal of pain. Unimaginable pain. But there does seem to be some degree of comfort in the absolute, the impossibility of treatment or a cure, the lack of shades of gray.

It seems to me much harder, on the other hand, for those families I meet who do not have that certainty. How do you parent a child who may live for five years or ten or fifteen? The article does not tell us. No doubt Miss Rapp would do anything to have that extra time to spend with her son. But would she have written the same article then? I very much doubt it. She would have found herself in that horrible in between that the parents of children with chronic illness find themselves, struggling to balance the needs of today with the hope for tomorrow.

There is a new drug hotly anticipated in the treatment of Cystic Fibrosis that has found itself in the news of late. Children who once died in grade school may live to attend college. The decisions their parents make about bedtime or schoolwork or being grounded for using a swear word will have a very real impact on the kind of adults they grow up to be. But not all of them will grow up. Even with the incredible advances in treatments, the gene therapy research that gives hope that someday there may be a cure, children still die from CF. Entire families are devastated by the loss of multiple siblings. The fact that a disease is treatable is still not a guarantee.

Is this worse? Is it better? Does the extra time you have to spend with your child outweigh the pain of knowing that they will die with more self awareness, more fear? I cannot pretend to know the answer. I cannot pretend even that there is an answer, a single yes or no that applies equally across the board to those brave families who face CF or cancer or congenital heart disease so resolutely and with so much grace. It is a question, nevertheless, that is worth asking. Simply by looking, who knows what we will find?