I think I've sat here staring at the blinking cursor for what seems like an hour....unsure what to say, where to begin. This post is not about me, but about my dear family. I realize now, I could probably start a whole new blog for what I'm about to discuss (and I may perhaps do that very thing...who knows?), but for now it will begin here.....
In the winter of 2005, just before the holidays, my husband...a very big, strong and powerful Special Forces soldier, was hit with something that even HE couldn't overcome. On a routine physical exam, it was discovered that his EKG was anything but normal. So abnormal in fact, that the Army sent him to a Cardiologist right away, where they discovered a rare heart condition that would change his life forever. He was diagnosed with Hypertrophic Cardiomyopathy, a genetic disorder of the heart muscle, which causes the muscle to become abnormally thick and rigid. It not only causes the heart to become overly fatigued, which eventually makes the pumping mechanism ineffective.....it also causes electrical "glitches", in which the heart beats abnormally, sometimes so abnormal that it stops. On a dime. With no warning. This is called Sudden Cardiac Death. And yes, this should sound familiar. You have seen this on the news. Young, healthy athlete collapses after scoring the winning goal....unable to be revived. My husband is one of the rare few diagnosed with this potentially deadly disease, because more often than not, it is diagnosed too late. It is not discovered until a tragically early death, post-mortem, upon autopsy. This is why you have seen a surge of AED's (Automated External Defibrillators) everywhere...airports, ballparks, schools, etc. Out of tragedy, comes awareness.... As you can easily presume, this diagnosis ended my husband's life in the military, a career of prestige and honor, a career he had dreamed about his entire life. Ever since he was a boy and watched "The Green Beret" with John Wayne, this was his destiny...or so it seemed. And he was good at it. He was MADE to be an S.F. soldier. His mind is sharp, his patience steadfast and his physique is strong. He can tell you, down to the very tiniest screw, about pretty much any weapon in the world...take it apart, clean it, put it back together and fire it with such swiftness and precision...it's an art. But his heart...big and beautiful and devout and loyal... is weak, and it is slowly failing.
Very good, you were paying attention! That's right, I said this is a genetic disorder.... Upon diagnosis, we were advised by my husband's cardiologist that we have all familial ties undergo "heart screenings", consisting of an EKG and an Echocardiogram (this is an ultrasound picture of inside of the heart muscle). Parents, siblings....and children. Everyone one by one had their screenings, and all (praise God!) checked out clear. Our son Parker, was 8 and our daughter Lily, was 3 at this time. Their pediatric cardiologist advised they get routine Echo's every year to monitor their growth and look for any changes. After about 2 years, and more research on his part, the kid's cardiologist recommended genetic testing. This was a fairly new process at the time, and rare for insurance to cover, but by some miracle they covered it. And so, to the lab we went...blood draws for everyone! The genetic lab first tests Big Daddy's to find and pinpoint the "mutated gene" responsible for causing HCM, then they look at the kiddo's to see if they are carriers of this "mutation". BOTH children tested positive as carriers of the gene. Which means that while the disease may not necessarily manifest itself, they will directly pass this gene on to their children and their grandchildren and so on....this was in 2009.
Fast forward to April 2012. Kids taken to their new pediatric cardiologist here in Texas. They know the drill by now...EKG and then the "cold gel test" the Echocardiogram. As a nurse, and a veteran of these Echo's, I pretty much know what I'm looking at now. I can make out the anatomical structures of the cardiac muscle, the way the valves open and close, the flow of blood from one chamber to the next. It's a beautiful thing, how God so intricately designed us! Remarkable! So, Parker went first (he's 13 now)...and his heart looks perfect. Like a stallion, big and strong and healthy. He's been having some headaches and blurry vision at school during football practice and the doctor pegs it right away. "Quit holding your breath when you work out!" Duh! Why didn't I think of that! *slaps palm to forehead* Next, it's Lily's turn (she's 8) and she wants the boys out of the room. She is growing into this very lovely and very modest young lady, and it thrills me to the core! So, it's just us girls...the two of us and the ultrasound tech. And there it is...clear as day...my baby's heart. And it looks EXACTLY like her Daddy's. And she looks at me and she searches my eyes and we communicate like only a mother and daughter can....and she knows. She knows something isn't right. And she takes my hand with her sweet little hand and that precious little girl strokes me, not saying a word....but telling me, it's all going to be okay. And I'm watching the technician scan my baby girl's broken heart, while mine dissolves into sorrow...all over again. And I feel like I did that day, almost 7 years ago when my husband's life was changed forever. But this time it's different. It's my baby girl. It's my precious little gift from God, my pride and joy, my very heart and soul. If only I could rip MY heart, beating healthy and strong, from my chest and give it to her. But, I can no more give it to her than I wished to give it to my husband to save his. So I remain helpless, once again.... in the hands of God.
Lily and her Big Daddy....
|Fort Bragg, North Carolina- 2004|
|Glenwood Springs, Colorado- 2005|
|Colorado Springs, Colorado- 2005|
|Dallas Mavericks game, Dallas, Texas- 2007|
|New Orleans, Louisiana- 2010|
|Fort Worth, Texas- 2011|
And our story goes on....