| Sean Egan |

Stephanie Myers halts the chaos of “another day,” by briefly pausing during the demands of a schedule consumed by her enduring commitment to her 2 year-old, Brayden. Hers is a lifelong commitment to her loving family, a solemn oath to everyone in it, a selfless promise to tirelessly pursue her young son’s health.

Stephanie inhales deeply and, unflinching, exhales the emotionally-rich narrative that she describes to me as “the story of our lives.” The story of this family’s life, the trials and tribulations through which Stephanie, Brad and Brayden have persevered reads like an unpretentious advertisement promoting the power of the human spirit. Their story, Stephanie is eager to point out, necessarily makes reference to friends, family, doctors, nurses, therapists—even a Chiefs running back. The story of Stephanie’s family is the story of community. It is understandably important to Stephanie that the family’s story never be advertised as a separate, independent enterprise. Doing so would threaten memorializing the type of isolation and loneliness that Stephanie fought so hard to finally, after 3 years, overcome.

“I want to share our story,” Stephanie confesses, “because it is so very important to me, and to our family, that parents who are experiencing—or who have experienced—similar circumstances understand that it is perfectly normal to feel and share the type feelings and emotions that we experienced throughout these trials of our life.”

Brayden is light-heartedly referred to by his mother as a “million-dollar baby.” This is in reference to the medical bill they discovered nestled inside their mailbox the day the family was finally able to bring Brayden home. Telling his story requires reliving painful events, events that inspired Stephanie and Brad to create a magazine explicitly intended to speak to parents who find themselves in the situation they themselves lived through in the late months of 2007.

Stephanie’s family hopes their effort to broadcast the intensely personal details of their struggles to cope with the hardships of birthing and raising a child with special needs will permit those similarly affected families to escape the unnecessary hardships they experienced. She is passionate when describing that, “I am doing this [work], juggling the needs of my son, of my marriage and our family, because it took me so long to get here…to finally understand that there is nothing wrong with us. My work is validation of our family, of our struggles.”

“I want mothers and fathers, and the families and friends of these parents, to understand that there is nothing wrong with them…to be open to and unafraid of telling their story. There is no shame in asking the community around them for help. There are caring people out there, and they will do what they can for families if only they are aware of the need to help.” And without hesitation,

Stephanie embarks upon our journey.

“Our story began with great news,” Stephanie says “we were trying to get pregnant, and we got pregnant. We went in for our first sonogram…and when we went to find out…that he was a boy, the sonogram technician noticed what he thought was an enlargement of the kidneys.”

Just five short months after Stephanie and Brad Myers began planning for the arrival of their first child, they were introduced into the exhausting—and expensive—world of specialized medicine. Stephanie’s OBGYN referred them to Midwest Neonatology. During their first visit, Stephanie and Brad were given the news that neither wanted to hear: the follow-up sonogram confirmed all that was feared after the initial sonogram. “They really know their stuff,” Stephanie recounts, repeatedly emphasizing the quality of care she and her son received from the medical professionals who have compassionately guided them through every stage of their distressing journey. “The second sonogram revealed that there was definitely an enlargement of his kidneys. The thought initially is that, normally when there is an enlargement of the kidneys in the sonogram, that it is a sign that your baby has Down syndrome.” Stephanie underwent an invasive procedure, known as “amniocentesis.” The process required the extraction of the amniotic fluid to enable doctors to test hypothesized reasons for the engorgement of their unborn son’s kidneys. The tests revealed that by her 20th week of pregnancy, Stephanie’s amniotic fluid was dangerously depleted of her amniotic fluid. She and Brad promptly followed up, but in the two short weeks between tests Brayden had swallowed, and retained in his kidneys all of Stephanie’s amniotic fluid.

The fluid Brayden swallowed was blocked from exiting his body through urination and returning to the womb as amniotic fluid. Because the fluid was trapped in his body, his kidneys became the destination, threatening development of these and other vital organs. With dilated kidneys and the development of his lungs arrested, “we were given a 50-50 at this point” Stephanie says.

Thirty-seven weeks into the pregnancy, Brayden entered this world through an emergency C-section, ordered after a failed attempt to induce labor despite the dangers of a dry birth. Before his mother laid eyes on him, he had blown a hole in his right lung, and by the time doctors had reached the elevator, standing by to rush the newborn upstairs to the intensive care unit for nitric oxide treatments, he had blown a hole in his left lung.

Three hours into her own recovery from injuries caused by the emergency C-Section, Stephanie was advised by both her tearful husband and her concerned doctor that it “would be in her best interest to proceed directly to the intensive care unit,” where her newborn son was not expected to live more than 24 hours.

“A week and a half after he was delivered, the doctors came to me and said ‘you really have a stellar boy, and I am running out of reasons to keep him here on the breathing apparatus any longer.” Though Brayden’s recovery outpaced doctors’ expectations, it wasn’t until a full month after his delivery that Stephanie and Brad were able to introduce their son to the comfort of being “home.” Like any other first-time parents, Stephanie and Brad will always remember bringing their baby home from the hospital. Also like any other first-timer, Stephanie will remember with a smile how, after placing Brayden in his bassinette, she turned to her husband and asked, “What’s next?”

What came next were a rapid succession of major surgical procedures that had Stephanie and her husband living at hospitals for weeks at a time. What came next was the accumulation of unrelenting and unrealistic medical bills. What came next was daily treatments, food through a tube, paralysis and chest tubes. What came next were worry and conflict, uncertainty and isolation. Yet through their strength, with the family persevering, there is little doubt they will grow even stronger as they together will their way through the ongoing injections, feedings, and tubing required daily for Brayden. With Stephanie as the anchor, there is little doubt that her son will survive the rigors of his imminent kidney transplant in much the same way he will conquer the remainder of his major surgeries.

Brayden has routinely beaten long-shot odds to overcome life-threatening illness. “He’s 2 years old now,” explains Stephanie, “and he is almost potty-trained.” Recently he’s started growth hormones, which is a huge struggle.” And there are other struggles the family must yet endure, like when Brad’s job, after 10 loyal years of service, slashed his salary and, with it, the family’s capacity to meet the mounting medical costs.

“Right now I worry for my son’s future” Stephanie says.” I hurt when he is in pain. I fear for the teasing and bullying that is sure to take place in high school if he cannot ever overcome his ‘failure to thrive.’ Girls will reject him and boys will tease him if he is as small for his age in high school as he is now. At 1 year, he was developmentally identical to a 6 month old. How is that going to affect him? How are we going to afford all the procedures he will need just to survive long enough to be teased and rejected in high school,” she asks, showing a fear that is clearly more prominent to her now than are the others she has mentioned. Yet throughout these worries, there is no doubt they are the type of loving parents who realize their many blessings, their little miracle.

The most significant lesson Stephanie gleans from her family’s experience is that it takes a community to guide families like hers through the times of loneliness and despair. The desperation of going-it-alone once had Stephanie phoning every conceivable charitable organization in the Kansas City Metro during one afternoon. Each time a complete stranger whom she begged for help answered her call. She was in desperate need of formula for her sick child. She needed someone to care, as she cared. She received no responses for more than two days. Not one the numerous organizations she had approached had called her back. Yet, there was one unsolicited, inexplicable phone call she received two days later as she sat alone among the toys in Brayden’s closet.

In all likelihood, the Myers will never learn how it came to be that Chiefs running back Kolby Smith even heard of them. That they will forever be forced to speculate as to the reason why this complete stranger did what he did is beside the point. Smith invited the Myers to dine with him at P.F. Changs, where he simplified their complex lives by promising two cases of formula a month… every month for a year.

The “story of their lives,”  embarked on a new chapter that day with the charity of a stranger who will always be remembered for inspiring in Stephanie a newfound purpose in life. Families in need should not be forced to cry over the phone to the insincerity of a stranger’s voice; they should not be forced to hide in their children’s closet awaiting a phone call from a guardian angel. She and her family believe this; they know it to be true.

Stephanie’s favorite quote says it all “Some people just believe in Angels, we get to kiss ours goodnight.”