Somewhere over the last 24 years, I lost the yearning to dream about what life would be like had Ben been born without complex physical and communication challenges. There was a period when I constantly wanted to press the rewind button to return to a simpler time, to before Ben was part of our world, so I could understand what I’d done so terribly wrong to deserve the burden of raising a child … [Read more...]
Commitment Is Such a Lonely Word
One of my favorite Billy Joel songs is “Honesty.” Though it was written nearly 40 years ago, it still is relevant today. If you’ve never heard it, the theme relates to how honesty is such a lonely word, that everyone (well, most everyone) is so untrue. In our world, where we rely on so many people to support Ben’s care and development, honesty can be a problem. Mostly, it’s the small things … [Read more...]
(Faith + Hope) > (Fear + Loneliness)
Let’s face it. If you’re raising a child with a disability, then your life is anything but typical. More like fragile, complex, overwhelming, exhausting. After battling the everyday challenges that never seem to leave you alone, there is not much left in the tank. You may also be in the situation where caring for your child for the rest of your lives is becoming more and more real. The older you … [Read more...]
5 Things I Learned from Our Pilgrimage to the Holy Door
Holy Doors are massive bronze works of art located in selected cathedrals and basilicas around the world. They are only opened during Jubilee Years which typically occur once every 25 years. Not surprisingly, the traditional Holy Door is in St. Peter’s Basilica in Rome, but on December 8, 2015, Pope Francis announced the Jubilee Year of Mercy and designated 8 Holy Doors around the world. The only … [Read more...]
A Day in the Life of an Ordinary Family
I don’t know about your family but in ours, having a young adult with complex disabilities never affords me any time to do the simple things in life, like finding time to read. The tired cliché of “there are never enough hours in the day” is the story of my life. Every day the list of things I need to do, want to do, would really like to do, outstrips even the most energetic and efficient person’s … [Read more...]
“Fear Is a Lie From the Pit of Hell”
Those words were so unexpected that they knocked me off my feet. And, yet, I knew exactly what he meant. Without hesitation, I wrote them into my iPhone. I didn’t want to forget what Joel Houston, leader of the Christian band Hillsong UNITED, had just said. In sharing stories over the years with many, many parents of children with a disability, I’ve learned that fear is the one thing that holds … [Read more...]