Our little foundation has grown very big over the last 5 years, and as we take steps to maintain this growth, I'm thankful for moments of reflecting on the heart of the OHHF-- LOVE. Ollie's physical being may have left us 5 years ago, but Mark and I, not CHD, are writing the story of his life and his story isn't over yet. Instead, it's just beginning. In corresponding with our new Board members, I had the opportunity to reflect on one of the theme's of Ollie's story and it's one of hope, strength, and spreading LOVE... "I couldn’t be more thrilled with how our Board is coming together! I’m eager to bring together of group of people who share the same passion for fighting Congenital Heart Disease and spreading love as I do!
The past 5 years have been full of pain and heartache, but also courage, strength, and, most importantly, LOVE! The OHHF was built on the LOVE that Mark and I were shown when Ollie passed. Ollie had been on life support for 4 days when Mark and I wandered the halls of Cardinal Glennon, feeling lost, defeated, and empty. We walked into an empty chapel and sat and cried. And minutes later the chapel began to fill up, then a Catholic precession down the center aisle, and Mass. In his homily, the priest spoke of Mary and Jesus, the bond between Mother and Son—an unbreakable bond— and somehow tied this into ‘in hard times, lean on the support of family and friends, and find strength in that love.” In that moment I believed he was speaking to me and I saw it as a sign that Ollie would be okay! That our bond was unbreakable! A few days later, however, it became clear that, yes, he was speaking to me, but from a very different perspective than I had hoped. The same day that Ollie was suppose to come off ECMO due to all the progress we were seeing was the same day we later learned that he had sustained complete brain and brain stem damage when he coded 5 days earlier. I stared at this x-ray image of my son’s brain, the doctor explaining the diagnosis, and I fell to the ground and I wailed—I didn’t have the strength to stand and a cry came out of me that I’d never heard before. And my husband and my father-in-law picked me up off the floor—literally and figuratively—and they loved me. And soon family and friends came from near and far and wrapped our family in love, then acquaintances, then complete strangers, and the circle of love surrounding us grew and grew. And we found peace, hope, and STRENGTH to keep going. And 5 years later, that circle of love continues to grow.
And so, Mark and I have set out on a mission to fight the disease that took our son, but also to take our love for Ollie and all the love we were shown, and share it with others. We know first hand the heartache and struggle of having a critically ill child—helplessness, worry, and anger come to mind—and we also know what a difference even the tiniest gesture of love can make."
On January 3, 2013, my 1 yr old son, Ollie, passed away. That's where my life "before Ollie" ends and my grief journey begins... My new normal, my path toward healing, my life "after Ollie". I'm a grieving mother who believes in hope. This is my story.