Today I’m going to be sharing a little bit of my life’s journey and how my daughters helped me find my purpose. As a very young child I struggled to truly enjoy life. I was always worried about what people thought of me, I had a hard time making friends and I went through most of my school days very alone. When I was seven, my baby sister was born. I was so excited to have a girl to understand me. As we grew up, and life got harder to deal with in my brain, I promised myself I would stay strong for her. I never wanted her to feel alone like I did. As I went into high school, making friends became harder. I was too “weird” to be friends with most people. Guys only wanted to talk to me when no one was looking. I was feeling more alone than ever before. I was very depressed, and I truly didn’t care if I lived or died-but I promised myself I’d be there for my sister. Unfortunately, I was so lonely I became close with a lot of people who weren’t good influences on my life simply because they accepted me. I would pray to God every night to let me be loved. I thought that’s how I would find happiness in this world. I wasn’t a perfect big sister and I definitely made life harder on my sister by taking the hard road I was following.
Throughout all the dark days, the one place I felt happiness and loved was my grandparent’s house. I could be my 100% authentic self there and I would never feel judged. My grandparents were a huge part of keeping God in my life. There were many times I battled with trusting in God’s plan- because how could God exist and let me suffer so bad? Coming to my grandparents house felt like the weight of all the bad going on was lifted, even if it was just for a day.
After graduating high school, I moved mountains in my work as a cosmetologist. I was making amazing money for fresh out of school and quickly found myself managing a small salon on my own. I was doing such great things with my work, but the second I clocked out I was right back to the bad decisions and wrong groups of people. Then, the week before my 19th birthday, I found out my grandpa had a very severe aggressive cancer. To me, that was a personal attack from God. How could he take my safe space away? When I found out, my life completely changed and not for the better. I gave up trying. I didn’t care about anything anymore. I wanted love and acceptance from anyone that would give it. I just kept trying to fill that hole in my heart, that no person would ever fill.
That summer my parents moved to Florida, and I came with them. I didn’t want to. I was scared of change. I didn’t want to lose the “people in my life.” Well (shocker I know) none of those “people that cared for me” cared about me even a month after moving away- except for my friend Sydney, she’s been with me through every stage of life since middle school. So, I was back to square one-lonely as ever. I worked my ass off at the multiple salons I was working at and spent my “free time” talking to strangers on the internet to distract myself from life. Then came September, and the best man I’ve ever known passed away.
This started me living two very contradictory lives at once. To feel peace about my grandfather dying, I had to have faith in God again. I had to because my grandpa always spoke about how excited he was to go to Heaven. He talked about those golden gates with the excitement some people talk about Disney world. I couldn’t and can’t imagine a world where he doesn’t get to experience that joy. At the same time- my heart was absolutely shattered. I thought the only way to solve that was to find someone to love me. So, I became stupid- I mean REALLY stupid. I did stupid things, trusted stupid people, and I was a horrible example for that sweet little sister I was living for.
After about the fourth failed “relationship,” I turned to God. I wrote a list of what I was looking for in a man- funny, calm, smart, goofy, nerdy, protected me and loved Jesus. I stopped looking. Well, God handed me a pretty cool guy that happened to work at the same place as me. We jumped in headfirst, and while some would say we moved to quick, I will say the classic phrase “when you know you know.” Then we had our sweet, beautiful Nova. For the first six months of her life, I was still struggling with my relationship with God. I didn’t think I was a good mom. I didn’t know my purpose.
Then Nova had her first seizure. I sought out a relationship with God to protect her. I knew I was made to be her mom. I knew right then I would do everything I could for her. I would fight for her until the end of my days. Even though I talked with God, I still wasn’t 100% convinced. I believed God existed-but I didn’t KNOW it. My grandmother passed away the month before Denver was born. While I didn’t stop believing in God, I did stop trying to build my relationship with him. I was hurting bad. How could I survive having a daughter with Dravet and a newborn without my best friend on call whenever I needed her?
Then at 8 months old Denver had her first status seizure. It was worse than any I’d experienced in 1.5 years with Nova. She wouldn’t stop, and her oxygen was dropping bad. I sat in the front of that ambulance, and I took a chance, “God I swear to you, if you save my baby I will do ANYTHING you ask of me.” I prayed this as we pulled into the hospital, and while they brought my girl out of that ambulance they started to prepare to intubate her. My heart dropped to my ass. “Please God, please.” I begged over and over on the walk that felt like forever into her room. As soon as her precious body crossed that threshold to her room, she stopped. “I have to change this” was the immediate thought in my head. God saved my daughter to have me be their voice, and a voice for other families experiencing Dravet. I also felt peace for the first time about my grandparents’ deaths- they were protecting BOTH my babies together. I know my purpose now, and it isn’t to be loved by a man. My purpose is to be the best mother, advocate and fighter for these girls. My purpose isn’t to be loved, it’s to give it. Since that day I’ve read the word more than I ever have in my life. I have prayed intentionally. I have witnessed my God work miracles. God and my daughters saved me, maybe not in a physical sense, but they definitely saved my soul. These kids have changed me into the person I’ve always wanted to be. When I look at myself now through the eyes of me as a teenager, I feel so grateful I made it through. Nova and Denver are the greatest gifts I’ve ever been given- not only do I get to enjoy them every day, but I also get to enjoy my life.
Life seems impossible sometimes, but when you least expect it, God will give you everything you’ve ever wanted.
Addi Epilepsymama
