Expecting their third son to be as healthy as his two older brothers, David and Marie learned that their newborn son, Reid, had a condition called Myotubular Myopathy (MTM), a rare condition that compromises most of his muscles and makes him unable to breathe without ventilator support.
Despite being told Reid would “probably die within a year,” Marie said their goal was “to help Reid be as healthy as possible and live his life to the fullest in his home, surrounded by the people who love him.” They were told “phrases like ‘let nature take its course,’ and ‘we can put a DNR in his file before he goes home and then if something happens…’”
Following are reflections by Reid’s mother after celebrating her third son’s – thus the nickname “Tertius,” which is Latin for third – 8th birthday.
When “Tertius” was born as a floppy baby with respiratory insufficiency, the neonatologist and nurses whisked him away before I could even glimpse his body, let alone hold him. Eager to see him and find out what was happening, I kept attempting to get out of the recovery room bed, but due to the delivery trauma, my legs crumpled under me every time. Powerless and perplexed, I was forced to wait until David could secure a wheelchair to transport me from the maternity ward to the NICU, where I first saw my third son, encapsulated not by my own, loving arms but by a hospital incubator. (If it is possible to be jealous of an inanimate object, then I certainly was.)
The one meager satisfaction of the ache to hold my child was accomplished by reaching through a small window of the isolette and grasping his tiny hand, the only part of him that didn’t seem covered and invaded by alien tubes, IV lines, and wires. I vainly searched for some kind of response from him, softly pleaded with him to open his eyes and “Look at Mommy,” but he didn’t yet have the strength to raise his eyelids.
As I prayed, whispered, and sang, the vision of the sweet hand in mine began to penetrate the sad, surreal daze of my thoughts, like a wisp of clear light guiding me through a fog, then suddenly striking me with their abnormal beauty and gracefulness. Motionless, he moved me. Breathing, he beguiled me. Helpless, he healed me.
His long, slender fingers – soft and silky as rose petals – existed as a sign of perfection in the midst of everything going wrong. A death-defiant vow bloomed on my lips, “Someday, I’ll teach you to play piano. I’ll teach you how to make music. You’re going to do beautiful things with these beautiful hands.”
That these tender, beloved hands, both fragile and resilient, both tenuous and tenacious in their grip upon life, could echo a song of flaming tongues, which declare “When I am weak, then I am very strong,” never fails to woo my soul with wonder.
Our bruised-though-unbroken “reed” makes music with his hands when he plays the keyboard or instrumental apps on his iPad, when he reaches out to express curiosity, trust, and affection. And when he makes visual music with his whimsical creations, his fairy-like fingers dance joyfully through mediums of clay or paper or string, such as pictured here with his…hmm let’s call it a “bunny balloon anchor.”
Marie says, “He may be differently-abled from healthy kids, but he is full of constant wonder and joy!”
When Marie was unexpectedly pregnant again, a geneticist encouraged them to have an amniocentesis because Marie carried the gene that could cause her baby to have MTM like his older brother, Reid. The geneticist suggested they could “keep their options open.”
Marie refused the amniocentesis and declared to all the people in that room, “Our son may have a 50 percent chance of having Myotubular Myopathy, but he has a 100 percent chance of being loved.”
Today, Paley is a bright, happy, deeply-loved five-year-old living with Myotubular Myopathy.
Reflecting on the impact all of her children, especially Reid and Paley, have made on her life, Marie said, “I’ve become more grateful and full of awe of the simplest things.”
LifeNews Note: Karen Cross is the political director for the National Right to Life Committee.