Below are a few excerpts from an incredible article written by Emily Rapp etitled "NOTES FROM A DRAGON MOM." It's a truly poignant article. One which must be read.
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...
I would walk through a tunnel of fire if it would save my son. 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. What I can do is protect my son from as much pain as
possible, and then finally do the hardest thing of all, a thing most
parents will thankfully never have to do: I will love him to the end of
his life, and then I will let him go.
You can (an must!) read the entire article HERE.
What I find extra moving is that I have often described Jillian's life in a similar way as the article defines these parents. At our annual remembrance day walk, the t-shirts we don with her picture on them say...."Live life with a fierce spirit, huge heart, and grand sense of humor" This describes Jillian quite well, and I think parallels the attitude of these dragon parents. To this I simply say, ROAR ON.
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