People often tell me that I need to write a book. Maybe one day when all of this is “over” I can think about that. Right now I have enough seemingly insurmountable tasks ahead of me, I don’t need to add any more, plus, where would I even start? 

I may never write a book, but soon, in a city a few hundred miles away there will sit a group of people I barely know deciding what happens next in my story. I truly believe whatever they decide will be the right thing for me, because since the very start that has been the truth. Somehow even against all the odds, from the very beginning things have just always kind of worked out. My bread has always managed to land jelly side up and leaning heavily on the five-second rule, I have always been able to dust off and move on. 

I guess that if I were to write a book, the beginning is where I would start. I think it is hard for anyone to know with the memories of times before they can personally remember anything, what is true, and what is family lore. Like most things, I would guess the truth is somewhere in the middle of the facts and the fiction. The story I am about to tell is the truth as I know it. I will do my best to tell it free from as much hyperbole as I can manage though you may find parts of it hard to believe, I know there are times I still do. 

June 23, 1982, was a truly beautiful day in Dodge City, Kansas. I didn’t arrive until late morning and even then didn’t make it outside, but thanks to my friend the internet I can see the high temperatures that day barely broke 80. What a lovely reprieve from the scorching late June heat in western Kansas. My mom couldn’t have planned it better, and for the record, my arrival was planned. I didn’t know that until today. I knew I arrived via c-section like my sisters but I didn’t know if the day was planned or would be whenever I started knocking. I have always liked my birthday, the date in particular, not just the fact I get presents. June 23, 1982, 6/23/82, do you have any idea how many times I have had to confirm my date of birth? So many interactions in a hospital require a person, to confirm their date of birth, 6/23/82 rolls off the tongue, and if you’re OCD like me you like that two multiplied by three is six, and eight minus two is six. Brains are weird. What was I talking about? Oh yeah, I was born, well extracted by appointment, the morning of June 23, 1982, at St. Catherine Hospital in Dodge City, Kansas. 

It was obvious pretty quickly that unless Papa Smurf was real and my biological father, there was something not quite right happening with me and my cerulean skin. I don’t fault anyone for the things that transpired over the next 24 hours. It was 1982, we were in a tiny hospital with fewer than 100 beds in southwestern Kansas, and only about 1,100 babies are born with my specific heart disease each year. In such a rural area it is unlikely that they’d ever seen a baby with TGA before. Even if they had, it had only been in the last 10-15 years that doctors had been routinely able to operate on these tiny hearts and increase their life expectancy. So no, I don’t blame anyone for the events that took place over the next 24 hours, because I don’t think my life would be different if things that day had moved any faster, though I do know things could have been devastating if they’d moved slower. 

Obviously, the cobalt cast of my skin was concerning to the doctors. They may not have known the why, but what was pretty obvious, this baby was not getting enough oxygen. My mom was told that some time in an oxygen-rich isolette with some warming lamps should do the trick. It did not, dear reader, do the trick. I’ve spoken to my mom recently about how things went that first day, and it is hard for her to remember all the details. As it stands I was an infant, she was on drugs (prescribed, from a 1980s c-section), and my sisters were only eight and five years old, we don’t have the world’s most reliable witnesses. It went something like this. My mom would come into the nursery to see me, I was quiet, and still, I didn’t open my eyes, and was not “pinking up” as had been promised with the introduction of oxygen. This went on until the next morning, that was when Dr. J made his rounds. He was right out of med school, I happen to know he had only started practicing in 1981, he was much less senior than the doctor who had suggested I needed oxygen and warming lamps. He took one listen to me and knew that there was no amount of heat lamps and oxygen that was going to fix what needed fixing. 

The right thing and the popular thing aren’t always the same as they say, and Dr. J’s suggestion that I needed to be life-flighted to Wichita immediately in order to survive was not a popular call. The more senior doctor had already made the call about my condition, I was just not responding as well as they had hoped. I worry dear reader, that given his way, that doctor would have “wait and see-ed” me right out of this earthly plane. Perhaps that is why I have never enjoyed a wait-and-see approach. Dr. J fought for what he knew was right, he explained it to my mom and my grandparents, and it was decided. My mother had done the first “next right thing” of my life.  I would be flown to Wichita as soon as the life-flight could be arranged. I would “meet” my sisters through a glass window quickly before being shuttled off, and my mother would sign herself out of the hospital AMA so my grandparents could drive her the 3 hours to Wichita to be with me. 

I wrote Dr. J ten years ago, to thank him for what he did for me. What follows is a little excerpt from that letter and his response. It will explain a bit of what happened next. 

“Dear Rev. J, 

My name is Monica Wells, I am 31 years old and your intervention is why I am able to write you today. You don’t know me, in fact, we only met very briefly when I was only a few hours old, but I owe you a debt of gratitude.

On June 23rd, 1982, I was born in Dodge City, Kansas. A blue baby, my mother’s doctor assured her that after a while under a warming lamp and some oxygen, I’d pink right up. It is my understanding that you are the one who examined me and determined this not to be the case. You were the one who made the suggestion/decision that I should be flown by jet to Wichita immediately if I was to survive. You were right. I was diagnosed with transposition of the great arteries upon my arrival in Wichita. My heart stopped for the first time less than 24 hours later and I was having the first of several open heart surgeries within 72 hours of my birth. I don’t know how much if any of this information ever made its way back to Dodge City and to you, but you saved my life. 

I hope I have found the right person, and I wonder if you even remember this. I would understand if you have no recollection as  31 years have passed, but my mother remembers it like it was yesterday and the story has always been that you were the one that saved her baby, the one who saved me first.”

His reply. 

“Hi, Monica.

Oh, my!  What a blessing your email is for me!  I do remember you, but I never heard anything more after you were airlifted out. I have wondered of you often, your bright red hair and will to live were impossible to forget. 

…

Thank you for this gift to me.  Most of what we do is like planting a seed…it takes years before that seed bears fruit.  And, rarely do we see or hear of that fruit.  Hearing from you is a privileged glimpse into the fruit of our meeting so many years ago.

All blessings to you and yours, Monica.

Fr. J”

Dr. J now Fr. J left medicine and joined the seminary 10 years after we first met in 1992 and has been a reverend ever since. He and his wife both minister at a church in Texas. He put his brand new career on the line to second-guess those above him, and it saved my life. None of us know or remember the name of the doctor who made the wrong call, we only remember the name of the doctor who made the right call. It has never been about holding a grudge but always about holding gratitude. 

Within 72 hours of arriving in Wichita I had my first corrective surgery, this one to allow me to oxygenate the way my body had cleverly been oxygenating already, by holding open the hole between the two upper chambers of my heart. You see, I even managed to get lucky in that way, by having the right combination of heart defects to temporarily allow me to survive while everyone else figured out a plan. Jelly side up. 

It is hard to have faith in the medical complex. The system is convoluted and seems to be set up to fail. For me, I  just have to trust my gut and do the “next right thing”. Try the new med, or maybe refuse it. Stay with the same team, or be brave enough to say goodbye. Since that first big “next right thing” I have trusted my mother’s gut and learned to trust my own. Presenting my case again is “the next right thing” and if this team, whom I picked because they were also “the next right thing” says it still isn’t time, then I wait, because there is one thing I know for sure, you cannot make “the next right thing” happen. The next right thing just is, and so it will be.