Written by Sarah B. Miller “You’re moving where?!” was something we got used to hearing before leaving our home state. We’d grown up there, made a life there...everything and everyone we knew was there. We had no reason to leave...until we decided it was time for another adventure. Prior to this point, we’d experienced a lot of “big life” adventure, sure. Got married, had four kids in just over four years, bought a couple houses. Big life stuff. Blessed beyond measure. We got to a place, though, where we’d felt a shift in what our future was going to look like. He was tired of traveling and being away from home...felt disconnected from his family. At least that’s what he told me. Before our upcoming week’s vacation together, to celebrate our 11th wedding anniversary, we’d dream about what it would look like to live somewhere warmer within a day’s drive to visit. After a few ideas, we’d come to agree that Tennessee would be perfect! Not a far drive, still has the seasons, a good half-way stop to the beach...the list went on. So, we booked our coming vacation to stay in the Nashville area. Boy did we ever fall in love. The weather, the people, the music, the food...ahhhhh, this could be home! I’ll tell y’all why I was excited...a little back-story, if you don’t mind. I’d known my husband since the 4th grade. I knew his family, I knew his friends. He was funny, kind of a bad-boy...a charmer. We hadn’t really dated until we were 23 years old, after bumping into each other in our hometown. He was the same. Funny, kind of a bad-boy...a charmer. And I? I have been doomed to believe the best in people. Always have. Always will. It’s not something I’d like to change about myself, however a little discernment never hurt anybody... We were together for close to two years before moving to Detroit. He’d gotten a job opportunity that was hard to pass up, and we couldn’t wait to jump! Adventure. For the next 13 years we’d live in the Detroit area. Found a great church, met some great people, bought our first house…all the things. We were married 18 months before having our first child. Then, the second...then a stillborn (our baby Trace, for whom the kids still send up birthday balloons every year)...then our third child...then the fourth. All within the first 6 years of marriage. A whirlwind. Meanwhile, he was working from home. He’d had four jobs up to this point...eight total W2’s, and two 1099’s by the time we’d left for Tennessee. It was a crazy time. I was good at being at home with the kids, while cheering him on. He was good at providing well for our family. Ok. Enough back-story... I think it’s easy to see why I was excited, yes? By the time we'd moved here, our youngest would be in full time school. Hallelujah! I was SO excited for this next chapter...our new adventure. I was going to have more time with my husband too! Day dates?! Glory. I was happy for the possibility of falling in love with the man I’d married, and believed in for so many years. I was happy that he wanted to be home more...that we could enjoy this new adventure as a family. The Miller 6-pack. I’d just assumed over the years that he was just really stressed at work. He was juggling a lot after all. For the better part of the last four, almost five years, he’d worked a full-time job and did consulting on the side. That should’ve been a sign. But I trust. I believe. And, I encourage. On this side of it now, I’d even go so far as to say- I enable. For years, I’d accommodate. I’d tried making things as easy as possible for him. He worked so hard, and provided so well. Sure, I managed the kids and the home, but I wanted him to know he was appreciated. I wanted to contribute in more ways, to free him up to do what he had to do. I’d make every effort to make his home his haven...his sanctuary. That’s hard to do with four kids, and two dogs friends! I’d make it a priority to date him every other week...I made HIM my priority when he was home. And, I’d do my best to send encouraging texts, or call with a pep talk every once in a while, when he wasn’t. It didn’t feel like a lot because I enjoyed doing it. Still, the idea that our life would include our family growing and experiencing together enlivened me! Adventure with my favorite people?! Yes please. Three months in, though, things weren’t going the way I’d anticipated...the way I’d hoped. He’d needed some time to build his business here. “To build a name for himself.” We were in a new place, where he’d had no prior connections. Ok, sure. But… Do you really need to stay out every night...overnight two to three nights a week? Even in Nashville? Just thirty minutes from our home? Throughout our relationship, I’d done my best to manage the manipulation and control tactics. The lure and drop techniques. The “you’re the best thing that’s ever happened to me and our kids” to “have you taken your meds, Sarah?” If you don’t know what Gaslighting is, look it up. That’s what I’d lived for 16 years. Probably longer, since I’d been a believer in people my whole life...one man after another who were wrong- yet, I’d convince myself I could make them right- for me. I could love and encourage them enough to be good for me. Because I was good for them. And I was. I was the perfect girlfriend...the perfect wife for a narcissistic sociopath. For so long, people would say things...insinuate things. And I’d defend him. I’d make everyone, including myself, believe that he was thinking of us. That we were better than ever. I knew the truth, though, somewhere deep inside…I knew. But, I wanted THEM to love him...accept him...respect him once he’d finally become the man I always knew he could be. I was confident God would redeem our marriage. Confident it was His plan. I didn’t always know God like I do now. I was already married with two kids when I met Jesus for the first time, in a real way. He showed up for me when I lost Trace. He showed up when no one else did. My husband was traveling then too, and was in Boston at the time. God continues to show up. He’s never left. And, so, I trusted Him when He said to move to Tennessee. And I led the charge. I thought I knew why He wanted us to move here, but I couldn’t have been more wrong. No surprise there, right? His ways our higher than ours. So are His plans. What I was certain would be unifying for our family turned out to be the uncovering of our brokenness. We’re all broken, I know. And I embrace it most of the time, but this was a whole new kind of broken. One I didn’t sign up for. No one does. Yet, in His sovereignty, He knew the man I married. And He knew me. He knew it would take something drastic to uncover my reality...our reality. He knew I’d only see the best, only the possible, if something didn’t disrupt the mundane. Under the guise of adventure, He allowed for my absolute horror to be realized. And He was there with me the whole time. You see. In Detroit? We had many, many people who loved us. Back home too. I personally had many friends there, who I love like sisters to this day. If we hadn’t moved hundreds of miles away to unify our family...if he hadn’t tried to isolate me to that end, from getting involved at church, or making new friends in our community...I’d have gone out, instead of UP. I’d have gone out to my friends and family, seeking validation when I’d discovered his multiple affairs. I’d have gone out to my people when one of his disgruntled girlfriends had reached out to me to share about his other life in Michigan...with another woman, in another house, just a few miles from our family home. They had a dog together, and a business. And I just thought he had a drinking problem! But. I went UP, because out wasn’t an option. After I hit my knees, and then my face? I reached UP, to God. And, in my nightmare? He gave me unrelenting peace. What should have been the loneliest time in my life, has ended up being the most refining time. The best things in life can be realized out of pressure, or pain. When you trust God, they can become your purpose. Ever wonder about your purpose like I do? Wonder what you’re made of? Well, God doesn’t...He’s always known. And, at some point He will show you…
While it’s all still very fresh, we continue to trust in His perfect plan for our family. I never saw divorce in my story. Remember? I was confident in redemption! Certain of it. Well, I am redeemed. My children are redeemed. And we continue to pray their dad be redeemed too. We have tough days, but we trust in our God to help us choose joy. To sing His praises in the middle of the storm. He’s worthy. I am not. And yet He still loves me. He has romanced me like I’ve never been before. He has shown me peace, and hope. And when I’m floundering, and feeling like the worst mom in the world...that I’ve failed my children beyond recovery? Hope remains. Always hope, dear one. Always hope. He’s faithful.
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
Michael and I met when we were 20 and in college. Children. Babies. We had an instant connection and fell hard and fast. We were inseparable. By the time we were 26 we were both living in Nashville building our careers and engaged to be married. No one knew that there was an intense issue behind the curtain of our newly engaged bliss - Michael was an alcoholic. On the day we were married I watched my husband to be standing at the end of the aisle and I could tell he was so drunk that he may not be able to remember much of that day. That was after I had begged him not to drink. All I could think was, “What am I doing?”
The first year of our marriage was a train wreck. On our honeymoon he had promised to stop drinking following our less than perfect wedding day. I wanted to live the typical newlywed life filled with trips to Costco, dinners in our new home, snuggling on the couch with movies, etc. But instead I was coming home to a passed out or belligerent husband every. single. day. Towards the end of our first year of marriage he had 3 car accidents in a 6 week period of time. Something was wrong. He was denying and hiding the drinking. I was an anxious and resentful mess - I didn’t even recognize myself anymore. I begged him to seek counsel and prayed to God every night to reveal the problem. Was he mentally sick? Did he have an underlying health issue? Little did I know what I was praying to be revealed was about to become a life long journey for both of us.
He called me one day after seeking outside counsel that his work provided and said “They think I need to seek treatment for alcoholism”. What? But you don’t drink anymore (that’s called denial, my friends.) I thought alcoholics were older scruffy looking guys that always hung out at bars with beer guts and DUI’s on their records. No way. And after that, I soon found out that the drinking had never stopped and that was definitely the problem.
He entered outpatient treatment immediately. Outpatient was unsuccessful for him - he could never stop. He would lie that he was going to treatment and end up drinking at his office nearby after hours. And on the weekend of the great Nashville flood, Michael came home in the middle of the day drunk after driving around in the flood waters and failing to find an open 12 step program meeting (meetings were closed, but gas stations stocked with beer were open). It was that day that I completely broke and hit the end of my rope. I couldn’t help him and I didn’t think change was possible. And he decided to go to inpatient treatment.
The story that unfolded after that was one that only the divine could write. MY plan was to get out, and fast. I got the carpets cleaned and researched real estate agents and lawyers as he attended inpatient treatment. As I visited him in treatment and the mask of his addiction began to fade, I started to see the vulnerable man that I loved that was deeply pained. My heart started to soften and my head started to quiet. I started to address my own pain and begin my healing journey. And shortly after he got out of treatment - I found out I was pregnant. On our 1 year anniversary I was 7 weeks pregnant and Michael was under 90 days sober. You can tell by the math that was not OUR plan. I definitely heard the message. This was where I was supposed to be - as messy and difficult of a road we had ahead of us. We went on to have 2 more kiddos after our “rehab baby” and just celebrated our 10 year anniversary and Michael’s 9 year sobriety birthday.
To this day - it’s not easy. We realize that our story is not normal and could have had a very different ending. We both struggle with different trauma responses to alcoholism. Many painful things happened as a result and trust was (and still is) a struggle for me. There were maladaptive coping behaviors that formed (such as isolation, codependency and withdrawal) that we have continually struggled to deal with and can take us back to our very unhealthy past. But the synchronicity of events following our pain and trauma have continued to show me that God was slowly healing us through the details. And as we began to heal we were placed in other’s paths so that we could use our past experience to help them find healing. To prove that with faith and a lot of freaking hard work - you can take your life from miserable to amazing.
Addiction is real and does not discriminate. It comes in the form of alcohol, drugs, shopping, destructive relationships, food - you name it. Addiction is a response to pain and trauma. An attempt to numb our hurtful pasts. Not only does it numb the pain - it also numbs the joy. It provides a false and temporary euphoria that dims the light inside people and rips apart families, friendships, careers, relationships and marriages. And everyone it touches is affected. Once we start removing the stigma and judgement around addiction - I believe that more people will begin to seek healing. The recovery journey from addiction looks different for every person. Everyone has their own method to get to the bottom of their pain and trauma and live a life free from addictive behaviors used as bandages. But I do know one thing - no one can do it alone. I hope that if you are reading this and it has resonated with you in any way (whether you struggle with addiction or love someone that does) that you reach out to someone to help point you in the right direction to begin your healing journey. My growing faith is a large part of what continues to guide me to healing. To me, faith in God is to align with love instead of fear, judgment and resentment. To not know the answers and trust in Him. To quiet my mind and stop feeling the need to make decisions and letting things unfold in time. In His time. Faith is knowing that no matter what happens, I am going to be ok. I wish I could take my 27 year old face in my hands, look her in the eyes and tell her that. Everything is going to be ok. But that truth now will continue to carry me in the future. My pain is a beloved part of me that has created my life story and has continued to provide growth opportunities for myself and help to others. It has provided wisdom that I would not trade for anything. I now know that no matter what happens, what pain I feel, what trauma I endure - God will make sure to put friends, family, situations, therapists, life coaches, programs, articles, books, animals, work out programs, blog posts - whatever it may be, in my path to make sure that I’m assured that - Everything is going to be ok. And with an open heart aligned with a God of love and dedication to be His hands, feet and hearts on this earth - we can all find continued restoration in this life. Never alone - always together.