• We Weren’t Meant to Live This Way

    I tell people that every single thing about every single aspect of my life changed the day my twins were diagnosed. I say that they gained a diagnosis and my soul gained somewhere in the neighborhood of 100 pounds. If I’m being honest, it’s probably more than that. I can feel the weight of that day. Every moment of every day, I can feel it. As I write this, many of my peers, my people, my village are at a conference in San Diego. They are all meeting in person, exchanging hugs and high fives. They’re celebrating small wins and commiserating in setbacks. They all understand the grief we are…

  • What Good is it to be Mad at The Wind?

    People often ask me how I keep going. They ask me how I can smile and laugh. They wonder how I can possibly make plans for the future and count on better days and moments ahead in the face of so much grief. Some days it is harder than others. Some days I realize I am waiting for three calls from two different facilities for two different kids and it becomes overwhelming. The best way I can explain all of this rare disease parenting is just shy of unbearable. It really is. My life really is. On those days, I often bounce back and forth between shock, helplessness, and anger.…