Ewan's purpose

"The purpose of life is a life of purpose" - Robert Byrne

The death of baby Ewan has hit so many in the congenital heart defect community very hard.

Like Sawyer, he was diagnosed with Tetralogy of Fallot, had Pulmonary Atresia and no visible PDA.

A grim diagnosis no mother should ever have to hear.

I remember the moment when Sawyer's neonatologist came into our hospital room while I was pumping for the first time after his birth. It was June 2. A beautiful late-spring afternoon in Chicago.

As she began to speak, I sat there in my hospital chair giving her my full attention as the quiet hum of the breastpump did its work. I don't remember much about that conversation except for the very last thing she quietly told us before leaving the room and giving my hand a tender squeeze.

"Full-term babies with this type of heart defect have a very poor prognosis. I'm sorry."

My heart sank, but we never gave up hope. Just as Ewan's mother, Kirsten, had done. She never gave up on that beautiful hope. Ewan inspired us all - on the days he made a stride and on the days he had a setback. We cried with Kirsten, we prayed with her. And now, we grieve with her.

This beast known as "congenital heart defects" continues to ravage families all over the world, every single day. There is no known cure, only quick-fixes - and it is the number one birth defect and leading cause of infant death in the United States. These numbers are more than startling, they're horrifying.

It's easy to make a pledge to change these statistics.

What's not easy, is getting out there and sharing the most personal details of your story with a total stranger. All in an effort to hold on to the hope.

I want to thank Kirsten for sharing Ewan with all of us. I want to hug her and cry with her. But most of all, I want her to know that I'm not giving up on hope.

September 1st, 2010 - Three months

How did three months go by so fast, and at the same time, so agonizingly slow?

Summer is a time when life is thriving and all we've had have been dark clouds floating over our heads. A tiny flame blown out too soon.

First, we learned it was okay to smile and then to laugh. We've been able to appreciate the miracle that is Sadie more and more as each day has passed.

We learned that there is no such thing as closure and that hanging white sheets over a bassinet and crib do not erase the events that led us to today.

We know that grief is out of our hands. It comes in waves and drags back out to sea our tears and pain like grains of sand.

I've had to watch my daughter slowly come to realize that her brother isn't coming home. I've comforted her in the night, when she wakes up in tears asking for her beloved Sawyer.

I have watched my husband stand so strong, going back to work so soon after - only to have the grief sneak up and rest itself on his broad shoulders. I have comforted him when I hear his quiet weeping coming from our bedroom in the darkness of night.

With the bad, surprisingly, comes the good.

Every day we hear a friend tell us of a butterfly or a rainbow, a hawk soaring in the sky or a beautiful sunset and how the moment spoke to them - Sawyer's spirit is everywhere.

I have discovered new friendships that will never die. Women with who I can be so painfully honest. Women that share my pain. Women that have loved and lost - and continue to love in the face of adversity.

Sawyer's time on earth was too brief. That time, however, is out of our hands. Where he left off, we have begun to pick up the pieces of our broken hearts and started our journey down a road dimly lit by the light of hope.

We love you, our sweet angel.