Imperfectly PERFECT!

In an instant, the greatest news of being pregnant quickly got overshadowed with an unparalleled and paralyzing fear.  What was supposed to be, in our minds, a routine ultrasound to determine gender turned into news that there was something wrong with our baby’s heart and that we would need to see a specialist.  We would later find out that our baby boy Nicholas had heterotaxy with complex heart defects. 

I was barely 20 weeks pregnant and the devastating news made for a very long pregnancy.  Looking back and reflecting on those early days, I remember feeling so helpless and overwhelmed with the questions of the unknowns surrounding our future.  There wasn’t much in way of information regarding heterotaxy and what information there was, I would find myself rereading thousands of times over.  I tried to make sense of all of the terminology that seemed so foreign at the time and somehow I was hoping to will the results of what I was reading to magically change.  All of the statistical information was grim and we were facing a single digit percentage chance of survival. 

Knowing exactly what to do was difficult. One thing we knew for certain was that we were not going to give power to all of our feelings of helplessness.  My husband Jimmy and I knew that we were heading into the certainty of some tough times.  We also knew that we had the ability to handle whatever life had in store because we had our faith and each other.  We focused our energies and started a nonprofit organization to spread awareness and provide support for heterotaxy and heart communities.  We named it the Nicholas Viner Heart Foundation for our inspiration, our unborn son.

 

Fast forward 8 months. Nicholas has a g-tube placement and two open heart surgeries under his belt. We are constantly in awe of him as he hits milestones like any other baby and he does it despite his scars.  Having put him through the toughest of times, to our amazement he still smiles, laughs, and loves.  Nicholas is bigger than a statistic; he is a grandchild, he is a brother, he is our son, he is a warrior, and he represents hope. 

If there is anything I could go back and tell my former self, it would be to just breathe. I would tell her that the journey you are embarking upon will forever change you.  Treacherous as it may seem at times, in the end you are all the better for it.  There will be a period of mourning, transition, and enlightenment of sorts. You will process the loss of the life you thought was to be and transition into your life’s version of “normal”.  This new normal will consist of speech therapy, physical therapy, occupational therapy, developmental appointments, echocardiograms, cardiology appointments, oximeter readings, feeding tubes, feeding pumps, and medications. You will then come to realize that the journey and road you are on, although paved with heartache and challenges, is accompanied by a greater sense and capacity for faith, love, and gratitude beyond what you ever thought was possible. 

Life sure looks different than the one once dreamed. It is even MORE than I could have imagined and it is forever imperfectly, PERFECT. 

Sherri Viner - mom to Heterotaxy Hero, Nicholas

http://www.nicksheart.org/