5 years have passed since we last held Ollie in our arms and that time has been filled with 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.
The OHHF is dedicated to lessening the impact of congenital heart disease through LOVE, awareness, and the advancement of CHD diagnosis and treatment. We do so by serving heart families and by funding the most promising pediatric heart research. To date, we’ve raised more than $700,000 to fund our mission. Please, join us in our fight against CHD! #spreadlove #theohhf