Sigh... I found this picture in Maddie's backpack a few days ago. It's taken me awhile to process it... It's sweet beyond words and heart-wrenching at the same time. I'm grateful that Maddie still feels so much love for Ollie, but the harder you love, the harder it hurts. I hate that my sweet, sparkly, funny, unicorn and fairy-loving 6 year old girl has to carry this pain in her heart. It's not fair that her little brother was taken from her. And it reflects some thoughts I've had lately about my grief... I'm in this strange place where I've grown to treasure my grief... It's personal, it's precious, it's a measure of my love for Ollie, it represents him and I carry Ollie/ the grief/ my love for him everyday. It's the most tangible way for me to FEEL my deceased son. In my bedroom, I have a picture hanging that reads, "In my heart, there stirs a quiet pain." So, once again my sunshine girl is shedding her light on my grief, my feelings, my new normal. I'm not the only one hurt by Ollie's death. Both Maddie and I have fought very hard to get where we are. She is light and happy and loves life, but in her heart there stirs a quiet pain. She still "feels" Ollie too. She and I are walking this path together and for a reason I can't explain, knowing that Maddie feels this pain makes me love her on a whole new level... She is vibrant and strong-willed and stubborn, but she is fragile and precious and she needs to be treated as such. She's growing up, she has a big heart, and she loves in a big way ❤️ Great reminders to hold onto when I'm facing the challenges of motherhood. And so Ollie continues to enrich our lives with love... Love upon love upon love ❤️
Recently one of my former teachers called and asked if I'd be interested in speaking to a group on the topic of faith. More specifically, how to hold onto your faith and use it to get through times of despair. Yes! Of course! That is my life in a nutshell! I was so thankful they'd thought of me. Almost a year ago from that date, I was speaking to more than 2000 people at my church's Easter service. Now, speaking to large groups is not my forte, but preparing for that speech had been so cathartic, a great reminder of what we'd been through, how far we had come... it was a gift. And any excuse to talk about Ollie, is a win in my book. So, now a year later I was forced/had the opportunity to sit down, reflect on where I was in my grief journey, and explore my thoughts and feelings. I'd been meaning to do this since the 2 year anniversary of Ollie's death, but I prefer to write when something really strikes me. And this did it. And it was a really fantastic experience. A few days later, I was trying to put the experience into words and an image instantly popped into my mind... Mark has done a lot of landscaping in our yard since moving into our house almost 2 years ago. In the places where he really dug up the dirt and turned it over, the flowers have grown big and beautiful. But in the areas where he just sort of skimmed the top, the flowers and plants are smaller and sparse. This was totally reflective of my approach to my grief! Digging in deep, working through it and turning it over has helped to me grow, life feels SO full, and I find myself in a very beautiful place ❤️ This is what I said,
"The Friday after the Christmas of 2012 started just like any other day… we woke up, had breakfast, Ollie’s home nurse came to do a weight check and give him his RSV vaccine, we went to the mall, Mark and Ollie shared an Auntie Anne’s pretzel, and we went home. Mark went to work, Ollie laid down for his nap and Maddie played. But, when Ollie woke up, he suddenly seemed very sick, fussy, and congested. I pack up he and Maddie and we head up to the ER. Tests reveal he has Flu-B. The next 24 hours entail a series of mishaps, one thing leading to another. Ollie aspirates, he’s emergently intubated, he’s over-sedated, his respiratory system is depressed and fails, and his heart stops. The staff resuscitates him, stabilizes him, and places him on a life support machine called ECMO, which will do all the work for his heart, pumping blood through his body while his heart rests.
The next few days were fairly uneventful, his body was resting, the setting on the life support machine came down a little more each day. We played his favorite songs, his favorite show- Yo Gabba Gabba!- on NYE we watched the countdown and rang in the new year. I remember feeling so excited for a fresh, new year, praying for a healthy and happy 2013!
Though everything seemed to be going well, Mark and I were drained and tired. We took a walk around the hospital, wandering around, when we found the chapel. We sat down and began praying and reflecting on everything that had happened. Soon, the seats began filling up, and then a priest processing down the aisle, and a Mass began. Ah, the New Year’s Day service. So, we sat and listened. And then the Homily began and the Priest spoke of Mary and Jesus and a mother’s love for her son, that nothing can break that love. He went on to say that when we’re faced with hard times, we need to find strength in the love of our family and friends. I felt like he was speaking to me! And immediately I knew this meant that Ollie was going to be okay! Yes! I felt refreshed and HOPEFUL! I couldn’t WAIT to have my baby back in my arms again!
So, the next couple of days, Ollie continued to progress. His tests and numbers looked good and the ECMO level was down as low as it would go. His surgeon decided tomorrow was the day! We would take him off ECMO and see how he does! Yes!!!! We were so close to being back to normal! A few more days in the hospital and we’d be home before we knew it! JOY!!!!! We were OVERJOYED! We went to bed that night, overflowing with excitement. I’m not even sure how we fell asleep!
But, we hadn’t been sleeping for long when I felt someone nudging me awake. I open my eyes and I see one of the Drs faces floating above me. His big, round eyes, his glasses. I still remember what the ceiling tiles above his head looked like. “Mrs. Hinkle, something has happened. Ollie’s blood pressure dropped and his pupils are blown. We don’t know exactly what this means. We need to take him on ECMO down to Radiology for a CT scan. Transporting on ECMO is very risky.” We gather outside his room. It’s 4 in the morning and before I know it an entire team of Drs and specialists are taking him away to radiology. His room looks so empty without his bed and all of the machines that were keeping him alive.
We wait. My mother-in-law is scared, she’s trembling, and I’m telling her, “everything is going to be okay!” I’d heard of this before. Brain bleeds are a risk for ECMO patients. This was probably just a brain bleed. This can be fixed! I was SO hopeful, that I wasn’t even scared… Mary & Jesus… a mother’s love for her son… nothing can break that… LOVE WINS. I loved Ollie SO much, certainly he’d be okay. How could he not be???!!! We are good people, we go to church, we love our children unconditionally, I’d spent years working to open my heart, to have nothing but love in my heart (and I was almost there!), I believed in God’s abundant love, I believed in my son who fought through 3 heart surgeries and came out SWINGING! He was a WARRIOR and he would beat this too!!! We had already been through enough, we’d paid our dues. I believed that good things happened to good people.
They return from the CT scan. Dr. Warner tells us they’ve read the results and that he needs to show us something. He leads us to a computer down a small hallway in the PICU. My husband, my MIL, my FIL, and I sit down at the computer. I see images of Ollie’s brain. His brain is white, almost all white. I tell myself, “ok, this looks good.” Dr. Warner begins speaking… “when you look at these images of Ollie’s brain, you see some areas of dark matter and mostly white matter. You can see the white matter covers most of the brain and goes down the brain stem. These white areas represent the places where the brain has been damaged. Ollie has complete brain and brain stem damage. We don’t know if this damage is reversible. We’ll need to do more tests.” I heard every single word so clearly, yet I couldn’t wrap my mind around anything he said. I felt heavy and empty all at once. My family, visibly shaken, stood up to walk away, but I couldn’t move. My legs wouldn’t work. My husband and my FIL had to help me walk. And then it set in. Ollie was gone. Life, as we knew it, was over. And I cried. Sounds were coming out of me that I’d never heard before… I cried a cry that I’d never cried before… Today, I know this sound very well… “the wail of a grieving mother.”
Teams of neurologists came in and out of our room that day. Sticking, poking, prodding, checking Ollie’s eyes, his reflexes. Test after test. It was decided that the brain damage was complete and irreversible. And it was up to us what would happen next.
Mark and I went down to the chapel. We held each other and we prayed. We were no longer praying for Ollie’s recovery, but we were praying for guidance, strength, peace, love, and light. And in that moment it dawned on me… the Homily from a few days prior was not in fact telling me that Ollie was going to be okay. It was telling me that nothing will break the love between Ollie and I. Not even death! LOVE is greater than death!!! I would find strength in the love and support of my family and friends. I would be okay. And as we’re sitting there, in this empty chapel, lit only from the dull light of a dreary day through the stained-glass windows, a ray of sunlight shines down on us. No light on the rows in front of or behind and a feeling of peace fills my body… my heart flutters, a weight is lifted from my shoulders, my body feels lighter and relaxed… God’s grace. And at that moment, we have clarity, strength, peace, love, and, literally, light.
We find one of Ollie’s nurses and we tell her that we’d like to make sure all of our loved ones get in to see Ollie one last time, that once everyone has seen him, Maddie will come back with us to say goodbye to her baby brother, that Mark and I will each hold him one last time, and that Dr. Huddleston will disconnect the ECMO cannulas after that. And that’s what we did.
And when the time came, our immediate family and our 2 pastors surrounded Ollie’s bed, laying hands on him, laying hands on each other, ENVELOPING him in love. SO MUCH LOVE!!! And in the midst of Ollie’s last breaths, I held his hand to my cheek to feel his touch, soaking him up, taking him in one last time… my hero, my teacher, my inspiration… and I’m almost smiling, not in happy way, but in a content way. I’m not hysterical, I’m not crying, and not wailing. I’m overcome by peace from head to toe, the same peace that came over me in the chapel earlier that day. Peaceful moments in ungodly hours are heavenly, heaven-sent… God’s abundant love, his grace, and his promise of life everlasting shines through like a ray of light.
After our final last goodbyes, Mark and I walked through the PICU and down the hall to the visitors lounge, where we were solemnly greeted by dozens of loved ones who came to support us. That hallway that we’d walked so many times before seemed longer and darker than usual. It was dark. The room was dark. Reality sets in and my world is dark. The weight of my loss hits me. Again, I feel hollow inside, yet so heavy that I can barely walk and Mark helps me down the hall.
But then my emotions shifted. Leaving the hospital that night, without Ollie, knowing we’d never see him again… that was my rock bottom. I felt defeated, run-down, heavy, hopeless, empty. I went to bed that night and I wished I would never wake up. I knew myself and I knew I wasn’t strong enough to face my new reality. I didn’t necessarily want to die, but I just wanted to close my eyes and never open them again.
But then morning came, and I feel a tap on my shoulder, and I roll over to see my beautiful 3 ½ year old, Maddie. “Mommy, can you make my breakfast?” And I’m hit with a bittersweet reality, a quote I’ve heard numerous times throughout my life, but one I never truly understood… LIFE GOES ON. It had to… for Maddie, for Mark, and for all the people I love and who love me back. And it had to for Ollie!!! Ollie fought so hard for his life and now I would too! MY LOWEST POINT WAS NOT MY LAST POINT! MY TIME HERE WASN’T FINISHED YET. I HAD WORK TO DO!
A few days after Ollie’s memorial services, I met another woman who’d lost a child and she told me, “the pain will never go away, but you’ll learn to live in spite of it.” This came as a shock! I thought that time heals all wounds and that eventually I’d bury away the pain and become very good at pretending everything is okay. But, the pain will always be there!? How the heck am I going to tackle this one!? Ignoring the pain and pretending it’s not there sounded dark and heavy. I didn’t want to carry that with me. If this pain was going to last forever, I was going to embrace it, explore it, build my life around it, and move forward. So, I let the grief flow through me… I cried, I wailed, and some days it felt so heavy that I couldn’t breathe.
And, I knew I couldn’t get through this alone. I leaned on my family and friends. I accepted their love, I told them I needed them, and I began to invest in these very important relationships. And I prayed… A LOT. I adjust my mind and opened my heart. A few weeks later, I’m in church, listening to one of my Pastor’s always-moving sermons and he recites a verse from Jeremiah… “For surely I know the plans I have for you says the Lord, plans for your welfare and not for harm, to give you a future with hope.” Yes!!! Clarity, strength, peace, love, and light all rolled up into one sentence. I felt like he was speaking to me! Thank you, God, that I won’t have to face this alone! Yes, I choose HOPE!!! Hope, hope, hope! And at that moment, I told myself that someday I will believe that verse with my whole heart and that’s when I’ll know I’ll be okay. It all goes back to that day in church.
And from that day on, I chose HOPE. I’ve woken up everyday since then and I’ve made a conscious decision to choose hope. So I began each day by acknowledging all of the beautiful reasons I have to be happy and I tackled the day with a grateful heart… my husband, my Maddie, my rockstar friends and family, my church, my community. And some days, I have to reach a little more… the way the sun shines into the house at certain times of the day, a beautiful flower, a breath-taking sunset, a rainbow, a butterfly, a delicious cup of coffee, music, the sound of my husband’s laughter, sweet silence, finding hearts in unexpected places, the list goes on. And on. And over time, I didn’t have to TRY to do this anymore. My focus was now on gratitude, living with intention, spreading Ollie’s love, and opening my heart to those around me, and most importantly, trusting in God’s love. My faith helped me to carry something too heavy to carry on my own. It the weights of my grief slowly lifted.
This was my new normal. I was building a new life around my grief and I was conquering my pain. But grief has a way of creeping up on you when you least expect it. Just when you think you’re all good, you’ve got it all figured out, grief will hit you like a bag of bricks… BAM! A dark day, I can’t stop crying, I’m tired of carrying my pain, tired of fighting, what did I do to deserve this, and I can’t see the light. I’m reminded that my grief is my constant companion, a weight equal to my love and I will carry until the day I die. And then I re-focus. I can’t sit around mulling over the fact that I will feel this pain EVERY day until the day I die?! Ollie’s death is irreversible, I can’t change it. So, I place this in God’s hands. I can’t run away from my grief but I can run with it. I get back up, dust myself off, and I keep moving forward, day by day, hour by hour, moment by moment. I remember God’s promise of abundant love, that he will carry me through deep waters. LOVE WINS!!! Sometimes, I literally want to go skipping down my street, shouting “love wins, love wins, LOVE WINS!”
So, after nearly 2 ½ years, I can say with my whole heart, “For surely I know the plans I have for you says the Lord, plans for your welfare and not for harm, to give you a future with HOPE.” And for the first time ever, my life has become crystal clear. My life is a story of who God is and what he does in the human heart. And not just in my own life, but also in the lives of all the people who have loved and carried my family and I since Ollie’s death.
And from Ollie’s death, has come the greatest love imagineable… our rainbow after the storm, our sweet Annabelle… happy, HEALTHY, and oozing with love. And so we continue to move toward our future with hope. THANK YOU!!!"
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.