All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground.
And there’s this: parents who, particularly in this country, who are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."
Those words are from a woman named Emily Rapp whose son has Tay-Sachs disease. I pulled pieces from an article she wrote because I can related to a lot of it, and she states it so well that I couldn't have described it better myself. It gives some insight into what it feels like to have a child that faces a life-threatening or terminal disease. Thought I would share.
For Macy, we try to stay positive and hope that new treatments are found everyday. Even with a successful bone marrow transplant the average life expectancy of someone with FA is 24 years old. Many children don't make it to adulthood, and there are more and more making it into their 30's. There is no way to know now what fate she will have since at this time there is no cure for her disease. I wanted to share this just because a lot of times it feels as if we (parents like us) live in a different world than everyone else; I guess in many ways we do.