Memorial Day weekend 2019: My husband and I get that fateful phone call that we had been dreading. The “official” confirmation that our sweet baby boy has ASMD- a rare and life limiting diagnosis that will forever change the course of our lives. Every Memorial Day weekend since then, no matter how hard I try to block it out and fully enjoy the weekend festivities, I can’t help but find myself back in that moment. My husband and I outside on our back deck, tears streaming down our faces as we are trying to digest the Earth shattering news that Roman’s doctor was delivering to us. This time of year I can’t help but relive all the emotions we felt during that phone call over and over again. The dread, the terror, the hopelessness, and the gut-wrenching fear that our son’s life would end before it even had a chance to fully begin.
This year Memorial Day weekend felt much different for me. Something had shifted. There was no sadness this year, only overwhelming gratitude. We experienced a beautiful weekend full of lots of family time, swimming, and grilling out; the way Memorial Day weekend should be. And the best part? I was actually able to FULLY soak up every, single, glorious moment of it. While it’s never necessarily “easy” to go back and relive that devastating phone call (and then the same one for Stella just a short nine months later), I can now look back on those two life-altering moments with gratitude and hope in my heart rather than anger, sadness, and fear. And that has made all the difference for me. Those moments instantly shifted my priorities in the blink of an eye and taught me what is truly important in life. I didn’t realize it back then, but they also sent me down a serious path of self-growth, not just emotionally, but spiritually too, over the next three years. Getting those two phone calls have made me a better parent, spouse, daughter, sister, and friend. They also taught me that I am a hell of a lot stronger than I ever thought possible.
So in honor of our three year anniversary from our (first) D-Day (those of you not in the rare disease world: D-Day= Diagnosis Day😉), I am officially releasing my podcast, Confessions of a Rare Disease Mama, out into the world.
I am excited to share our unique journey with you all- the ups, downs, and everything in between. More importantly though, I want other extra-special parents like myself to remember that the challenging circumstances we are given in life DO NOT define our happiness. It is what you CHOOSE to make of them that does. And this girl is choosing happy.
Happy listening, friends!