Years ago, I wrote a book about motherhood. I tried to give helpful advice. I spoke of real-life experiences and talked about how to survive the chaos that engulfs you as soon as you become a parent. Then like a tsunami we never saw coming, our two boys were diagnosed with Duchenne. Suddenly, I didn’t know how to be a “regular” mom anymore. Suddenly I was a Duchenne mom, a special needs mom, and a homeschool mom. I felt like a whole new mom. I felt like a fraud. I couldn’t relate to normalcy anymore.
At the beginning of our journey, I went through a period of time where all I could talk about was Duchenne. I was consumed with learning everything I could about this disease that was now driving our lives in a whole new direction. I probably wasn’t much fun to be around back then, but this is how I dealt with the pain. I couldn’t fix it so I tried to control it. I researched everything from natural supplements to clinical trials. I did anything that made me feel like I had some sort of control of our situation. Then I watched in agony as everything around me crumbled.
The treatments weren’t coming out fast enough, the steroids made our lives miserable and we had missed the cut-offs for the clinical trials we were interested in. The person I used to be was completely consumed and broken. Do I fight to be the old me, or just start new? I’d wonder to myself, “How can I go on like this?”.
I couldn’t control anything. I just had to sit and watch my sweet boys grow weaker and weaker right before my eyes. Each ability they lost felt like a piece of my heart was being torn out. Each tear they shed made me feel more and more helpless until finally, I hit my breaking point.
I stopped obsessing. I stopped trying to control everything that wasn’t mine to control and I surrendered. I finally gave in to God’s will. I let go of the old me and embraced the new person I’d become. I was broken, but stronger. I was hurting, but growing. I became who I was always meant to be, it just took Duchenne to bring her out.
It’s like one morning I woke up and decided to take my life back. After my long period of depression and attempts to control everything, I literally threw my hands in the air and surrendered to God’s will. I prayed, I cried and I relinquished control. It’s not like I really ever had the reigns anyway.
So, we started putting our decisions in God’s hands. We weaned the boys off of steroids and started letting them decide how they wanted to live. It was such a thing of beauty to watch the joy come back into our home. For the first time in months, I felt like I could take a deep breath. Our circumstances didn’t change, but our attitude did. We chose to enjoy life, not fear it.
I didn’t stop fighting Duchenne, nor did I stop fighting battles for my children, I just stopped fighting myself. I realized that all the time I was trying to fix something I couldn’t fix. My life was never up to me to orchestrate. I learned that I needed to surrender, not fight harder.
If I ever write another book, I will write from a different perspective. I will make sure to embrace my brokenness. I will show my vulnerability, fear, and empathy because that’s who I am now. I no longer relate to the “normal” mom stuff in the same way. I still sympathize, but I’m walking in different shoes now. I have a different message to send.
Now I’m someone who knows what the pit of despair looks like. I know what it takes to climb out and it’s not by fighting with your own strength. Quite the opposite, in fact. To climb out of a dark place, you must first accept that you’re there. Feel the weight of it, let it hurt. Let it change you, and then surrender it to God, because as I’ve learned He is truly the only way out.
Surrender is not about throwing in the towel or giving up the fight against this awful disease. I will advocate, care for and fight alongside my boys until my last breath – but I refuse to let it steal my joy or my hope. My hope is in God’s hands and God’s will, whatever that may be.
That is a painful sentiment to come to terms with, but it’s the only way to fully choose faith over fear. I pray every day that my boys will be healed. I’ve cried out to God through sobs of tears, begging him to take away this awful disease, and yet it remains. If God chose to take it away, He could in a second, but he hasn’t. So, we carry on. We continue to have faith that His plan is greater than our plans and that our pain has a purpose.