My Son, My Hero

[Erin]

You wouldn't think an infant could be a hero, but at just four months old, my son became mine.

Nova was my seventh and last child, my fourth son, my second 'Heart Baby" and an incredible teacher. You see, five years before Nova's congenital heart defect was diagnosed in utero, I had a little girl named Alexis. We never brought her home from the hospital. After ten hours of open heart surgery at the age of just twelve days, I held her lifeless body in my arms and said goodbye, and I may as well have died with her. I became withdrawn and depressed. I stopped eating, I stopped calling my friends, and I held my husband and other children at arms length as a mislead attempt at self-preservation.

For five years I said the right things and I went through the motions, but I'd lost the ability to trust, to connect. I'd closed down completely within myself, traded living for surviving, and forgot how to love. That's where I stayed until I found myself in the obstetrician's office in 2005, for an ultrasound, at 34 weeks gestation, with Nova. We'd named him Donovan Zane, and nicknamed him Nova, never realizing how appropriate that name would be.

As I watched the grainy image on the sonogram screen, the doctor informed me that Nova too would be born with a severe congenital heart defect. That he too would face nearly the same open heart surgery that took Alexis from us. At that moment I faced the decision to let the fear and anger overwhelm me again, or to fight for my child's life in a way I'd never been given with Alexis.

Nova insisted on coming a week before I was scheduled to be induced. He hit the world screaming, miraculously strong and intent on making sure everyone knew it. He spent his first 13 days in the hospital, undergoing various diagnostic procedures. He took it all in stride, but for all intents and purposes, he figured he didn't need to be there. He was the biggest baby in the NICU, and from appearances, the healthiest. He ate well, he slept well, he grew. He needed no medications or other types of medical support. We took him home for Christmas, and that in itself was a blessing.

Over the next 3 months, we cared for him, shuttled back and forth between endless appointments and procedures, but most of all we loved him. We appreciated every dirty diaper, every sleepless night, every hour I spent attached to a breast pump, and every moment we spent feeding him. I was terrified of losing him, but I refused to let that fear and worry steal one single second of his life from me. I was hyper-sensitive to the meaning of every moment we had him, and knew all too well that each one could potentially be the last. And if you looked into Nova's eyes, it was almost as if he did too. He didn't waste a lot of time crying. He was incredibly happy for a child who faced such a grave illness. He watched everything around him, as if trying to absorb all he could while he was here. His face lit up with love with every snuggle and smile we sent his way.

We had him home for a total of three months, and then it was time to deliver him into the hands of those would-be saviours we call cardiac surgeons. It was surreal, like an instant replay of our last day with Alexis, the main difference being that ten hours later, our son was still alive. Swollen, a bit blue, unconscious, gravely ill, and covered with bandages and tubes, but alive.

He spent the following six weeks in intensive care, fighting for his life. There were more procedures, complications, abdominal surgeries, bed sores, an ileostomy, blood clots, catheterizations, and a fungal infection. It seemed that everything that could possibly go wrong, did. And still, he fought. He fought, and we believed. The nurses loved him, and us. The receptionist in the cardiac waiting room knew us by name. We met doctors, intensivists, anesthesiologists, nurses, other parents, even the ladies in the cafeteria were rooting for him. And everyone of them was special to me. Every one of them found their way past my walls, thanks to Nova.

His life affected a change in my life, his defective heart somehow healed wounds in mine, and his struggle inspired me to overcome mine. His name was Nova, and his light guided me out of my darkest times. He was the star by which I journied out of despair and into hope. He was a wise soul, who, without speaking a single word, before he'd ever even given me his first 'real' smile, and despite all the challenges he faced, he gave me back life, love, faith, and most of all, hope.

On April 6th 2006, an infection he'd been battling went septic, his blood pessure plummetted, and his organs shut down. His brain wasn't receiving oxygen, his lifelong battle was over. Ironically, in his final moments, the only thing left working was his heart. If that's not a sign, I don't know what is. It was Nova's final message to me, "The heart must go on."

It's coming up on what would be Nova's third birthday next month. I've never forgotten the lessons he taught me, I live by them every day. I've dedicated my life to passing on the heroic purpose of his life, which is to carry on, to share hope, to inspire others, to make the world a better place, to live fully, and love without bounds. You wouldn't think an infant could be a hero, but at just four months old, my son became mine.

[Daryn Kagan]

Erin--
Thank you so much for opening up your heart and sharing Nova and Alexis with us. I smiled, cried, and learned all at the same time while reading their story.
I can't think of better heroes to launch the DarynKagan.com community!

with love,
Daryn.

[Erin]

Thanks Daryn :)

[Steffany Lohn]

Erin,

Such beautiful writing. My son is also my hero and my teacher, so I completely understand how Nova is yours.

Bless you,

Steffany

[robert p. wallman]

Thank you for sharing your story Erin. I feel your sense of loss. But I also
feel your sense of hope and inspiration. God bless you Erin,

[rebecca drew]

ERIN-
you are my hero. as tears stream down my face, i am so amazed at the woman and mother you are. you give me strength and hope. i feel like i know you and that i know little nova too. it will be my honor to meet your babies in heaven some day. i love you honey!
blessings to you, Rebecca

[Staci]

Erin,
Thank you for sharing your amazing journey.
I too will keep Nova's life lesson's close to my heart.

Staci

[Sophia Andrews]

Thank you for sharing your story with us. Your little babies are heroes, and so are you. Tears came to my eyes, but your words brought strength and inspiration came to my soul.

[John Gordon Hudson]

Erin:

Wow and I worry about all the little stuff in life. Puts it in perspective.