I’ve always been intrigued by parallel worlds and alternate universes. Although I did love TNG (Star Trek: The Next Generation) and Voyager, and read my share of Ray Bradbury, I was more drawn in by the mythical/fairy tale type of alternate world than the sci-fi. Somewhere, surely there is a portal to Narnia, or a history that really does include Middle-earth. For me, any really good book was one that brought forth a world entire, peopled fully, so after Lewis and Tolkien, and much, much after the Grimm’s fairy tales that intrigued and horrified me as a small child, I found Faulkner, and his Yoknapatawpha County in Mississippi was as much a separate, but complete world as anything more obviously mythical.
What I have come to believe is that this world in its complexity offers many parallel universes, no time travel required. They are real, not just between the covers of a book, and you may well not want to go there. I began to enter such a parallel world, a reality that fully exists but most people never see, in late June 2008. The portal was this concise piece of information: “your infant son has a malignant, inoperable tumor”. My baby had cancer. (I tried capitalizing every word, but came so short of reaching the enormity of that simple sentence that it seemed a farce to try.)
It’s called by some “the loneliest hour”. It’s when you are told, and try to process, and are overwhelmed by the attempt, that your child has cancer. For almost all of us who hear “neuroblastoma” from the doctor’s lips, it will be the first time we ever hear the word. The reality behind that word will rock our world forever, and this news is the portal into a different world. It exists, all around you, yet you never see it.
Like all good alternate worlds, it has its own language, from the decipherable to the totally new words (CT, MRI, MIBG, VMA, HVA, MYCN, 11q LOH, carboplatin, vincristine, doxorubicin, catecholamines, etoposide, AGC, ANC, so many more but let’s not forget the ever-fun npo). There is an evil being to defeat—not the Borg, Sauron, or the White Witch, but the beast within your child. We have our wizard-doctors, who employ their magic arts to mixed effect. There are good wizards, the compassionate, competent, and respectful, and the bad, those who arrogantly give you bad information, who are inconsiderate to your child and disrespectful to you as the parent. There is the hero, who Frodo-like, is seemingly the weakest character, but who proves to exhibit such remarkable strength that everyone watching marvels. It’s your little child. So you, of course, the parent, are your child’s Samwise. You carry your child, but you cannot take his burden on yourself. Your role is the helper, strategizer, worrier, the one helpless to take on the burden itself.
But, ahh, the fellowship. There is that, too. The other families in this world become an extended family. You read their blogs and updates with breath held in hope, and cry along as well. Because the hard part is there is no benevolent author writing this story, and many many little Frodos die. That’s it. The bitter truth. And when our visit to Mordor was just that, and we walk out with only scars, our little warrior marked only by a drooping eye, mismatched pupils, and a soft, hoarse voice, I am left with huge relief and thankfulness for every day, but also many questions.
After all, don’t I believe there is a Benevolent Author? Was our little Frodo written out of Mordor because our prayer list was long enough, because he is to do something really great in the world, or because we are just “such good people”? These are all things that well-meaning people say, but all lies because of what they imply and ignore. Other families have even more praying for them, are even better people, and who would have the horrible crass heartlessness to say that their child would not have done great things in the world? No, there is a mystery to suffering that no amount of reason can unravel. Attempts to explain why some are healed and others die end up simplifying the truth to the point of completely negating it. Don’t try to explain it; you can’t. But, and this is a “big but”, this acceptance of the mystery does not denigrate the importance of faith in that Benevolent Author. I am amazed by how faith keeps the parents of the dying from being beat by bitterness, how the habit of hope that they have nurtured during the long battle does not die when the end is near, but just keeps hoping, if not doggedly for a cure anymore, for something beyond this suffering and a better tomorrow for their child. At the end, the beauty of those who hold tightly to their God is stunning; his faithfulness shines through them. This does not make it all “OK”; I don’t know the pain they are living with. But the beauty is true, too.
I have been loving a song I have just discovered. It is a great song for my new year, and captures what I believe.
Cardboard cutouts on the floor / People wish that you were more like what they wanted you to be / Eventually they won’t have much of you at all in their theology / The walls are closing in on you / You cannot be contained at all.
I don’t want to make you small / I don’t want to fit you in my pocket / A cross around my throat / ‘Cause You are brighter than the sun / You’re closer than the tiny thoughts I have of you / But I could never fathom you at all.
Broken moldings all around / Broken people hit the ground / When they discover that you’re not here for our benefit / You love in spite of us / You use the least of us to prove the strong aren’t really strong at all.
I don’t want to make you small / I don’t want to fit you in my pocket / A cross around my throat / ‘Cause You are brighter than the sun / You’re closer than the tiny thoughts I have of you / But I could never fathom you at all.
Small, JJ and David Heller
(song starts at about 3:24 on clip)
No, He isn’t here just for our benefit, but He is here. And, oh how the least, the “little Frodos” demonstrate his strength! So I start the new year, praying for the little ones and their parents still in Mordor . . .it is true that as light shines so much brighter in the darkness, joy is more palpable in the presence of tangible loss, and I am filled with admiration for those who hang on, tightly, to that joy.
