Dragon Mom Gives Insight into Life (NY Times)
| October 20, 2011 | Posted by under blog, culture of life |
Someone pointed me to an op-ed in the NY Times by a ‘dragon mom.’ Her son, born with Tay-Sachs, is not expected to live beyond three years old. And yet, despite this- or is it because of this?- the joy she has with him is immense and incalculable. Our society bends over backwards to ‘spare’ children and mothers of this joy, offering a quick and easy termination. But if you read this article, you see that even in the face of impending grief, joy prevails every time.
Of course, if we’re honest, we understand that we all face certain griefs. First of all, we know that death awaits all of us, eventually. And yet we continue to build friendships, have children, and otherwise ensure that someone, somewhere, at sometime, will experience grief and suffering. We do this because we know that the joy of relationship does in fact triumph over the griefs that follow us throughout our existence.
It is a gift to be able to see a mother and child experiencing that joy where its time is bounded by a known, short, time frame, when grief is expected to visit. It helps us put our own problems in perspective, as the only real difference is simply that we do not know where the boundary between joy and grief lies, and how long we come to the point where they meet.
Having a daughter with spina bifida, I can appreciate many of the sentiments expressed in this op-ed. When she says, “Our goals [as dragon parents] are simple and terrible: to help our children live with minimal discomfort and maximum dignity.” I feel the weight of it. We take things like dignity for granted, but in the case of my daughter we have to actively advocate for it. And ironically, the fact that my daughter does not experience discomfort has its own problems- would to God that my daughter could feel her leg being stressed so that she would stop doing what she’s doing before she breaks it!
Having a child with a disability truly does change our parenting perspectives. But the goal of op-eds such as this brave woman’s is not for us all to try to see how we measure up as parents to her experience, but to catch the main point: in the end there is always the joy, and nothing more. As it has been said: “Don’t sweat the small stuff; and its all small stuff!”
But some people continue to argue that life’s varied and often difficult circumstances justify and even require us to simply… end the lives. I do hope they do not meet the Dragon Mom in an alley in the dead of night.
The Dragon Mom speaks:
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
