Six months ago I was a different mother than I am today. My life was not easy, but my days were somewhat care-free in the scheme of things. My life was full of happy chaos, joyful noise and a clear calendar ahead. I worried about trivial things that seemed to matter so much at the time.
Those things don’t matter anymore.
Now I spend my days differently. I homeschool. I call doctor’s offices, insurance companies, and the social security office. I schedule appointments, fight for medication approval, fill out form after form, and monitor medication side effects. I do daily physical therapy stretches. I have a schedule for dosing of medications, supplements, vitamins and appointments. I spend my days reading about future trials, researching the best vitamins for heart health and studying the ins and outs of my children’s disease.
I used to be a regular mom.
Six months ago I had no idea that my life would change in an instant. I had no idea that one phone call would turn me into a completely different mother overnight. I had no idea what Duchenne was. I had no idea that one blood test, one phone call, and one second could completely change me into this vulnerable, yet fierce person I’ve become.
I didn’t know it would change me into a mom I never thought I’d be.
I never thought I’d have to picture a future that made me drop to my knees in fear. I never thought I’d have to explain to my children why they have to sleep in leg splints, or why they have to take steroids for the rest of their lives. I never thought I’d witness tears and meltdowns due to a medication that is great for my child’s body, but rough on my child’s moods.
There are more aspects to my current reality though.
My life is obviously not without hardship and trials, but it’s also full of joy, snuggles and laughter. The diagnosis has given me difficult days, but it’s also given me a beautiful perspective on life. I never thought I’d be in the world of special needs parenting, but now that I am, I’ve learned it’s more than just difficulties. It’s also full beauty.
I never thought I’d have to explain to my kids why we are looking into having a stair lift installed, but it brought immense joy and relief when my six year old replied “Yay, let’s call it Thunder Mountain!” I never thought I’d watch my young sons lay in a hospital bed with an IV in their arms, but my heart fluttered when my eight year old said “At least me and Mason can go through it together. ” I never thought I’d homeschool my children, but it’s given me so many amazing moments including the moment I got to witness my son read his very first words. I may have to limit their physical activity, but that’s okay because it gives us more opportunities for cuddles, hugs and family movie nights.
This is not the mom I planned to be.
This is not the life I planned to live, but it is still a wonderful life. I pictured my happily ever after to be a bit different, but it’s still our cherished fairy tale. I know God will prepare and equip us for the journey ahead. I have faith He will give us joy every single day, even in the storms we may one day face.
Google doesn’t offer me much hope when it comes to my son’s future, but thankfully my hope comes from somewhere else. My hope, my joy, and my strength rest firmly in God’s hands. God is our hope, our sources of peace and our steady foundation, and He is secure. God is the same yesterday, today and forever. He loves us and He doesn’t make mistakes. This may not be the circumstance I would choose for my family, but it’s definitely the family I’d choose to live life with. They are my purpose, my life and my motivation.
One day I hope to look back and smile with gratitude at the life I’ve lived. One day I pray that God’s plan will make sense to me, but for now all I can do is trust, and I trust that one day I’ll be so glad that I got to be the mom I never thought I’d be.