Issues of the Heart

Happy 14th Birthday to Nomes!!!

As I gaze out my kitchen window through the accumulated condensation on the glass and shudder at the chill that overtakes me, I cannot help but imagine the T-shirt weather my family is experiencing back home, nor the birthday lunch they’ll be enjoying at Casa Corona, nor the look of excitement and gratitude on the face of my little sis as she unwraps her presents with excited urgency. Taking a deep breath at the beauty of the imagery, I utter a silent prayer of appreciation for my family and release a sigh at the distance keeping us apart.

Today is one of those crazy days when I am drastically aware of the vast expanse of ocean and land physically separating me from my stateside loved ones! Today is a special day as my favorite sis celebrates her 14th birthday. I feel her absence more than my own presence and wish with all my might to join her for even just a few precious hours…

But, alas, my hands are tied, my bank account is low and my classes demand my attendance. So, I called her to wish her my very best. Naomi, Please know that I’m thinking of you today and miss you so much! Happy Birthday!!!
In honor of the extraordinary circumstances surrounding my kid sister’s life, I wrote a little something below to merely reflect on how far she’s come and to reiterate how grateful I am for the simple miracle that is her life. I could never hope through a simple literary expression to fully illustrate the depth of my love for her or to express the measure of joy, love and delight her presence has added to my life…

As the 19th century gave way to the 20th, Dr. William Osler wrote in his textbook of medicine that congenital heart disease was of “limited clinical interest as in a large proportion of cases the anomaly is not compatible with life, and in others, nothing can be done to remedy the defect or even relieve the symptoms.”

Now, as the 20th century has so recently surrendered to the 21st, I find myself four years into this new 10-pack of decades celebrating the 14th year of LIFE of a child whose condition, as diagnosed at birth, was one not deemed compatible with life. I’m grateful that not all physicians shared Dr. Osler’s viewpoint, but rather pressed on to do great work in the realm of congenital heart disease research and remedies.

Amidst a January blizzard in a sleepy desert town, the baby we had prematurely named Caleb, entered our world and revealing her first surprise. SHE would be needing a different name and we would be reexamining that faulty sonagram we had placed so much faith in. If only this were the sole sum of our problems, but more serious matters vied for our attention. Two seconds out of the womb revealed that the grayish blue tone of her skin was indicative of some serious problems. With barely a word, she was whisked away so that educated men and women in white coats could determine the cause of the problem.

Not more than 48 hours later in a sterile hospital room, my parents listened as a very kind doctor relayed the news that their daughter had a “condition that was not compatible with life.” She was born with a condition known as Hypoplastic Left Heart Syndrome (HLHS), which essentially means that her heart contained only three of the four chambers. In his most expert opinion they were faced with three options:

1. Take her home and make her comfortable. 100% Fatality Rate
2. Undergo the Norwood Procedure which makes the heart function on its existing 3 chambers with an ~ 50/50 survival probability
3. Get a Heart Transplant with a ~70% success rate

As one could imagine, it didn’t take my parents long to “do the math” and choose the transplant option. Here, two huge risk factors were present; that of finding a suitable donor in time and that of rejection of the new organ by the body as a foreign entity. As the grace of God would have it, the child we decided to name Naomi, meaning gladness of heart, received a transplant within 12 days of birth becoming the youngest transplant at that time.

Fast-forward through time marked by doctor’s visits, school field trips and birthday parties to arrive at the present date of 18 January 2004. It’s a bright beautiful day and Naomi is only too excited to celebrate another milestone of God’s goodness. She’s pretty excited about the presents she gets to open as well!

Not everything’s perfect. She has to take medicine every day to keep her body from rejecting her heart and this medicine lowers her immune system so she gets sick a little easier than most kids. Overall, she’s pretty healthy; a miracle baby now turned beautiful 14-year-old young woman. She has incredible faith, strength and joy. Right now she’s into writing stories. Who knows, maybe she’ll be the next O’Brien only with a different story to tell. Maybe someday she’ll write about the things she carries, but for now I want to tell you a little bit more about them. In many ways, there is a strange parallelism between her life and those of war veterans. Both are required to carry and endure so much; most of which is too overwhelming for their individual comprehension…

“The things they carried were largely determined by necessity”*; the things she carries are a matter of life and death. They carried “pocket knives, heat tabs, wristwatches, dog tags, mosquito repellent…matches…C rations and two or three canteens of water”*. She carries tissue, valves, medicine, and arrhythmias that are not her own. They carry the psychological and sometimes physical scars of a war we pretended did not exist. She carries the scars from the war that she won on the battleground of her own body. They were carried by the prayers of loved ones and strangers who prayed for their safe passage through the war. She was carried by the prayers of loved ones and strangers who prayed for her safe passage through the surgery.

“What they carried varied by mission…Other missions were more complicated and required special equipment.”* She had nothing with which to equip herself , but relied solely on the skills of others and the grace of God. They carried the title of Vietnam vets; she carries the title of innocent child. They were soldiers, she was unaware of the concept of war. They were mostly 18 or 19 years old; she was barely 12 days old. They were transplanted into a foreign environment to fight a war they didn’t understand. She had a heart transplant to save a body she couldn’t understand.

She leads a normal life now with the exception of carrying a lower-than-normal immune system. Most vets lead a normal life now with the exception of carrying experiences that only vets can understand. She carries the heart of a little girl from Oklahoma who died in a car crash and one day she will carry the realization of what that means. They carry the emblazoned memory of the look on the faces of the men they’ve seen die. She carries the scars from her body being cut open to remove the old heart and give her another one. You could say she was given a second chance at life; so were several vets. She carries the daily regiment of medicine in her body to get her through. They sometimes feel the need to take liquor for “medicinal purposes” just to get through the memories of the day and the dreams of the night. She carries the strength of someone who’s been through something incredible and lived. They carried the strength of someone who’s been through something horrible and didn’t stop breathing; some of them have already stopped really living. She carries the hopes of her future; they carry the memories of their past. She and they both carry souls, memories, hurts, and joy. She and they both have things in common and things they cannot share; things that they can tell us and things they must save for themselves. She and they are to be loved and respected for the simple fact that their hearts beat in time with ours and their presence on this earth is an amazing gift to be cherished by all.

Okay, so this turned into a book! Allow me to finish by saying that Naomi is an awesome young woman and I am honored to love and know her. Sure, she can be a punk kid sometimes! (c’mon I have to say that, she’s my little sis for cryin’ out loud) But I love her so stinkin’ much and cannot overemphasis my gratitude for her life literally and how much beauty she’s introduced into mine! And the stories she writes are awesome too! Maybe I can get her to send me some so I can post them. With that I leave you with this crazylong motha’ of an update and bid you goodnight!!!

*Check out Tim O’Brien’s The Things They Carried on Veterans of the Vietnam War, it’s a quick read and he weaves a great story! Also, click here for info on Loma Linda University Medical Center Cardiac Institute or here for more facts about organ donation.

Remember!
Don’t take your organs to Heaven; Heaven knows we need them here!