Once a Heart Mom...

When our daughter passed away, almost a year ago, I was suddenly thrust into a state of limbo.  The world of high intensity that I had come to know so well, was no longer mine to share with the heterotaxy community that I had come to call family.  And although her life was cut short and her time in the hospital was brief, I felt as though my very identity had been snatched away.  How was it possible that the monotonous sound of monitors and pumps (that were once deafening) had now become soothing and welcoming?

The transition from taxi mom to heart mom was a difficult one. There was so much heaviness at that time. Some of that stemmed from fear, some from confusion, some from my selfish desire for “normalcy” and much of it from a clear understanding that those around me simply didn’t get it.  But who could blame them?  We were talking heterotaxy here!  It’s not like there was an instruction manual or a field guide of what to expect.  Before I knew it though, the cardiac ICU became our home.  After two heart procedures and 4 weeks in the hospital, Rachel was finally moved to a step-down unit and I was coming out of the fog.  However, it was then that she, quite unexpectedly, passed.

Two weeks later, I returned to work.  It was one of the most difficult actions to carry through, but looking back, I’m so thankful that I did.  The predictability and routine was mind-numbing to say the least, but it allowed for me to keep busy.  What I wasn’t prepared for was how lost I would feel now in the world that was once my normal, everyday routine.  My CICU life and my office life didn’t collide, they actually repelled each other much like magnets do when two of the same poles come together…I was stuck in the void in the middle.

I had been living a dual life…one that revolved around heterotaxy at night and on Facebook and the other that consisted of the daily grind of paperwork and office tasks.  It wasn’t until Heterotaxy Awareness Day that my two lives came together.  I began posting information on my personal page about heterotaxy and the importance of raising awareness… and before I knew it, my worlds began to merge.  Of course my family, friends and coworkers had always been there, but it wasn’t until that day, that I realized what a support system I had from both worlds.  That day, I found a new purpose in this world…one of advocating for those that struggle daily with the unknown while at the same time raising awareness in a world that has never even heard of heterotaxy.  I lived the life of a heart mom for a reason, and while my time in the CICU was brief (by heterotaxy standards), I will hold tight to this truth… once a heart mom, always a heart mom.