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."
Right here, right now... be who you are, live with intention, love with an open heart. No one is guaranteed tomorrow... live accordingly.
Here I am sitting at my computer, with a to-do list a mile long and I can't stop thinking about Ollie. And today I think of him in a very heavy way... Annie had her 15 month check-up this morning... On our way out, I stopped to book her 18 month appointment. The nurse behind the desk, "Hmmm, let's see, we can do January 3rd?" That's the day Ollie died, "No!" "Or, we have a few appointments at the end of December... December 28th?" That's the day Ollie went into the hospital, the first day of his last week on Earth. And, there it is... grief almost 3 years after Ollie's death, hitting me hard like a bag of bricks... and my chest feels heavy.
Just catching up on some papers from Maddie's homework folder... The last sentence... "I will hap babby with bobbob's on thr hat." Translation: I will help babies with boo boos on their hearts ❤️ Takes my breath away ❤️ So thankful for my sunshine girl ❤️
I woke up this morning with Ollie weighing heavy on my mind... Before bed last night, I couldn't stop staring at this picture of Ollie, myself, and Annabelle. Actually, I couldn't stop staring at Ollie. I had this very hard to describe feeling... almost like I had to remind myself that this little boy existed once and that he was mine... that I got to stare into these gorgeous eyes every day, I got to feel him looking back at me, run my fingers through his curls, kiss those sweet lips, nibble on those cheeks, nuzzle into that cozy little spot of his neck, LISTEN to the sounds he made. I had a son for 13 months (and I still do).
This quote. "Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, she IS, but she IS NOT, all at once. She is here, but part of her is elsewhere for eternity." If I had to draw a picture of a mother's grief, this would be it. So poignant. I know several grieving mothers who are hurting very badly right now. And I know several others who are hurting "regular". There are different ways to carry the grief, but the pain is always there. For any angel Moms who are hurting really badly right now, I'm here to remind you that there will be better days ahead. Keep moving forward, go with the flow, and you will get there. You're not alone. There are many (too many) other Moms also learning to build their lives around the loss of their child. Sending SO much love to you brave women ❤️
The ebb and flow of grief... Lately, mine has been flowing a little more. My grief feeling a little heavier. So, as I wait for it to "ebb", I'm waiting for a sign, for something to reflect on, for my next move, and tonight a friend texts me a link to a blog called "Scribbles & Crumbs", led by a mother who lost her baby boy to a congenital heart defect. So, I go on to read a few of her posts and they consume me... I can still smell the hospital smells and hear the beeping of the monitors, and my arms ache, and I've cared for a sick child, and I've relied on my faith to get through, and I've chosen hope! My chest tightens, my stomach turns, for a second I can't breathe, and before I know it, I'm chatting her virtual "ear" off via her "contact" tab. And then it hits me... grace meets me halfway and my grief feels lighter again. This is just what I needed, my sign, my reflection, my clarity. I needed a reminder that I'm not the only one and that I have all the tools I need to keep going. This may sound redundant to some of you, but if even one person hasn't read my posts and it helps you in any way, then that's reason enough to pour my heart out a bit ❤️
A sweet sign from my baby ❤️ Visiting friends in Chicago and one of them found a picture of him on his phone that I had never seen before... I couldn't stop looking at it. I've seen all of Ollie's firsts... He won't have anymore. It was a real heart-filling experience to see this "first" 2 1/2 years after he passed ❤️ And my friends cried... they still hurt too... I'm not the only one hurting. Ollie is still impacting lives. Ollie's spirit brings forth these unexpected tender moments, our softer sides, unconditional love, and a reminder of how STRONG we are ❤️ So, he's really been on my mind since then. This bright little heart is just what I needed ❤️
Couldn't resist the wet concrete when they redid our sidewalk ❤️ #annieandollie #angelbaby #rainbowbaby #lovealwayswins #hearts
Annie got the sweetest sign from her big bro when we were opening presents at her birthday party ❤️ One of the balloons had floated into just the right spot while the sun was shining in from just the right angle... a big, beautiful heart right above Ollie's picture ❤️ Hi, Ollie!!! And, that sweet gal in the picture is Ollie's great-grandma and she is "great" indeed!
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.