Today is Rare Disease Day. The marking of this disease feels particularly stabby as we reel from the loss of our dear Ryan; Husband, Father, Son, Brother, Cousin, Nephew, Friend.
It has been a while since I posted. The last four months have been fully committed to my brother and his family and I don’t regret a second of that time.
Life is short and precious. If you have the gift of knowing your time with someone is limited, embrace every single moment, double, triple embrace it.
As we move forward, I will write more about these precious months. Thank you, dear tribe, for giving me the grace to disappear- the notes, the texts, soup, flowers and love. Ya’ll are the best.
Welcome to Samsmom. I'm Heather and this is my journey as we navigate love, loss, rare disease, hope and resilency. Our family carries a POLG-1 genetic mutation that took my two children, Jack and Samantha and most recently, my brother Ryan. It's not an easy place to be, but here we are- with humor, love and grace, here we are. 