Place all your Hope in Jesus

It was our 20 week anatomy scan. The look on the doctors face said it all. He closed the door, sat down, and proceeded to tell us that something was wrong with our baby boy. The words came out in slow motion, but they’re etched in my mind forever. “The ventricles of his brain are measuring much larger than they should be, and we suspect he has Ventriculomegaly or what is more commonly known as Hydrocephalus (water on the brain).” Those words rocked me to my core and set the stage for one of the most difficult battles of my life. My name is Leah Deason, child of God, wife of Prime, and proud Mama to my 22 month old little warrior, Ozzie.

Just as we were processing the news that our son would have life long health challenges that accompany a hydrocephalus diagnosis including brain surgeries, risk of infections, and developmental delays, my water broke at 26 weeks due to Preterm Premature Rupture of the Membrane, or PPROM, landing me in the hospital on strict bedrest. Two weeks later, Ozzie couldn’t wait any longer, and he was born on December 31, 2017 at 9:35 pm. He was a very tiny, 3 lbs 1 oz “28 weeker.” We spent the first 3 1/2 months of his life in the NICU where he proved over and over again that he was a fighter. He struggled with breathing issues, feeding challenges, and fought off two viruses that almost took him from us. Grief hit me hard during those long days and nights in the NICU. What should have been a joyous time was anything but, and the physical, mental, and emotional exhaustion consumed me. Then after 93 days, our prayers were answered, and we were finally able to bring our baby boy home. 

Unfortunately, our time at home only lasted a few short months because Ozzie started experiencing complications from hydrocephalus. His head circumference rapidly increased due to a blockage in his brain, so fluid started to build up resulting in extreme lethargy and the inability to latch and take a bottle. We knew it was time to intervene, so he had his first brain surgery on June 21, 2018 right before he turned 6 months old. As if that wasn’t enough for my weary heart to process, Ozzie started having seizures the following day while in recovery. Of all the challenges we anticipated, epilepsy was never one of them, so to say we were devastated is a huge understatement. Ozzie was transferred to the NICU for another grueling 49 day stay. Even though I knew what to expect with daily NICU life, this time was different. Ozzie struggled with so many things that most take for granted. He wasn’t making progress and was actually regressing developmentally, and it was the first time I allowed myself to accept how truly sick he was. 

The doctors told us Ozzie would never walk, talk, or do anything on his own, and that we should meet him where he is, take him home and just love him. He was only 6 months old, so how do they expect us to give up hope and stop trying? We were dealt blow after blow, and it felt like the world was crashing down around me. Ozzie was diagnosed with a very rare and catastrophic form of epilepsy called Infantile Spasms and several other types of seizures. Infantile Spasms are considered a medical emergency due to the impact they make on a child’s brain during an extremely critical time in development, and if left uncontrolled, the prognosis is poor. Ozzie hasn’t gone one single day without having multiple seizures, and some days he has hundreds. He’s failed 10 medications and counting and is now considered to have drug resistant epilepsy with very little chance of us ever being able to stop the seizures. We now have to manage them the best we can knowing that his type of epilepsy is debilitating and progressive. All of the skills he’s worked so hard to gain are slowly slipping away. Epilepsy is a thief, and it steals a little piece of him every single day.

We spent 172 days and half of Ozzie’s first year of life in the hospital, and we received a never ending list of scary diagnoses including a rare genetic mutation of ppp2r1a (he’s 1 of only 23 diagnosed in the world), significant brain abnormalities and malformations, vision issues, sleep apnea, cerebral palsy, and neuromuscular scoliosis. We replaced milestones with ambulance rides, ER visits, PICU stays, surgeries, and a closet full of medical supplies and equipment. I could go on and on. We live in a constant state of the unknown as Ozzie’s health continues to decline and each medication we try fails to keep him safe. 

From the very first day we learned of Ozzie’s brain issues, I had to place my hope in Jesus. Through all of the pain and fear, He has been the only constant in this journey. My faith has sustained me through days when I didn’t think I could go on as I watch Ozzie struggle to just be. I cling to John 16:33, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” God never promises we won’t have troubles, and I’ve definitely experienced my share of them since Ozzie was born. But he does tell us to have hope and peace in Him, and that is exactly what I’ve tried to do. I’ve had to let go of control and surrender Ozzie completely to the Lord. This hasn’t been an easy process, and I still struggle with questions like “Why God?” And that’s perfectly ok! We’re allowed to have tough conversations with God, sharing our sorrow, anger, frustration, and fear. He This is exactly what God wants. He walked this road before us, and this is why we should praise Him in ALL circumstances. He wants to lead us through the dark valleys and rejoice with us when we make it to the top of the mountain.

I don’t think I’ll ever understand why Ozzie has to suffer, but deep down in my heart I know his story serves a greater purpose than I could’ve ever imagined. Ozzie has opened my eyes to a whole new world and taught me so much about faith, trust, and surrender. He’s changed me and given me a new perspective on life. I’ll never take a single second of life for granted because we’re never promised tomorrow. It’s been a lesson I didn’t know I needed, but God did. 

I’ll never stop praying for Ozzie’s miraculous healing. Whether or not it happens during his time here on earth, I can rest easier knowing Revelation 21:4-5 and that one blessed day Ozzie will come running, yes RUNNING, into my arms, free of pain, free of seizures, free of suffering and made whole in Jesus name. Ozzie’s story has already been written, and I’m the lucky one that gets a front row seat to watch it unfold. Until that day of healing comes, I place all my hope in Jesus and thank God for blessing me with my little warrior and my reason to never give up. My prayer is for you to realize that no matter how dark things may seem, you are never alone. Even though we may not understand the “Why God?”, He will always be the one true source of peace to guide you through the valleys and bring you to the other side. “And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:7

1 in 26 people will develop epilepsy at some point in their lifetime. My personal mission is to raise awareness for epilepsy research to help find a cure for the 65 million people living with epilepsy so no one has to suffer like Ozzie. For more information please visit endepilepsy.org 
In Christ's Love, Leah