CHAOS AND CANTICLES

By John Thomas Tuft

Christine and Robert met in college. In the world of contagious delusions known as social media, it was not a particularly auspicious beginning. He liked her post about a puppy who liked to watch trains and left the comment, “Pup-pup enjoys choo-choo.” Christine checked out his profile and saw that he liked the Jason Bourne movies and invited him to a midnight showing of The Bourne Legacy. One thing led to another, as they so often do, and by the time they graduated the two were engaged. As of yet, neither was aware that they carried a ticking time bomb deep inside of them and besides, what are the chances of such a thing occurring in two people who meet at random, fall in love, and make a life together?

Christine and Robert found employment, got married among their friends and family, and saved up to buy a house that they dreamed of turning into a home for the family they would create together. After they had been married for some time, the two decided to start that family. Everything seemed fine, but no matter how hard they tried and no matter how much they desired it, no pregnancy resulted. Finally, they decided to go with invitro fertilization. Six eggs were successfully fertilized and frozen in suspended animation. One was implanted in Christine and the two are joyful when the pregnancy proceeds along normally. Bobby Jr., or BJ, is born into the welcoming arms of his parents. After breaking in his parents for the first two years, they decide to implant another of the embryos and to their everlasting joy they receive a daughter into the world in good order. Chrissy is their little angel blessing from above.

Christine and Robert are so delighted with their family that at first they take little note of the fact that BJ seems to have developed a clumsiness that was not there earlier. They put it off to growing pains, but the clumsiness grows worse. BJ becomes increasingly listless, but they hope it is only due to possible embarrassment at the clumsiness. It only grows worse. Then the seizures begin, frightening to behold. Doctors are baffled and refer them to specialists. By the time the doctors can figure it out, BJ is approaching complete helplessness. Genetic testing reveals an awful truth. BJ has Juvenile Tay-Sachs disease. The horrified parents are numb as they are told that their son will only become increasingly helpless and not live past the age of ten.

Christine and Robert consent to genetic testing for themselves and their daughter, Chrissy, by this time approaching her first birthday. The testing reveals that both Christine and Robert unknowingly carried a recessive gene for the disease. And, sadly, Chrissy is developing full-blown disease, as well. She, too, will not make it beyond childhood. There is no treatment, no cure. It is so rare that less than 100 people are diagnosed out of the over 330 million in the United States. The two parents are devastated. Their two babies that they hoped and longed for will only become increasingly dependent on them for all of their care. For their all too short lives. Gone by the age of ten.

Christine and Robert love their children with all their hearts. The odds of their situation developing the way that it has are astronomical. But real. They sit on their back patio in the evening coolness trying to make sense of it. They talk about BJ’s smile and delight in life, even as it now fades away. They both cherish Chrissy’s curls and impishness. In short order, she will also be completely dependent on them again for her total care as the mysteries attacking her body do their fatal damage. Robert holds the letter that arrived earlier in the day informing them that the rest of the frozen embryos have tested negative for the disease. It is little comfort for the fear and pain that they feel today for their children asleep inside their home. Their children that occupy spaces in their parents’ hearts as only they can.

One of the curses of being a human being is the desire to find meaning. It is the reason we career drunkenly between chaos and canticles. Perusing the different manifestations of social media platforms, it is impossible to miss the plaintiveness of the ever-recurring insistence: I exist. I am lovable. I mean something. It is utterly glib emptiness to tell Christine and Robert that they can and should have more kids because they will be “normal.” Or that their suffering and the suffering of their children is instructive and adds meaning to their lives. They may choose to love the two children that they have and not put themselves in that position again. They may choose to secret their pain within their hearts and use it to inform the lives of their next children.

I don’t know. What I do know is that the only good human is a loved human. And that the measure we give will be the measure we get. Think on this. Live like this. And your being, our being, will mean something…

Words are magic and writers are wizards.