In February of 2011, my amazing husband, Steve, was diagnosed with ALS (amyotrophic lateral sclerosis). ALS is called MND (motor neuron disease) in other countries and often Lou Gehrig’s disease in America. Those who suffer with ALS, experience the steady paralysis of all muscles until finally only their eyes and brain function. Three years into this journey, I can tell you this disease is horrifying and inhumane. And also? God is good. You can read what I wrote on the day of Steve’s diagnosis here.
Here’s a quick rundown of life in our world since this three-letter diagnosis showed up:
February 2011: Steve sat down with our youngest (and only) son, Josiah, to tell him the news of his diagnosis. During that difficult conversation, Steve asked Joe if there was something they could do together in the next six months. He asked him to dream big. That discussion led to three similar conversations with the rest of our kids and a whirlwind of “dream trips”.
June 2011-January 2012: Against all the odds, the dream trips actually happened! You can read about Tess’ trip here (and more posts in the June 2011 archives). Josiah’s trip here (but I didn’t go on that one, so not much was written about it.) Victoria’s trip here and here. And the trip Steve and I took with Whitney & Corey here (and in the archives from October 2011 because this was a big one!).
April 2011: We threw a big party for Steve’s 49th birthday, not certain we would get the chance on his 50th. It was beautiful.
This diagnosis led us to become active in fundraising for ALS research and patient care. We went to Washington DC to storm the gates of congress for funding. It was a beautiful, difficult trip. Three times we have rallied a team for the Walk to Defeat ALS. Each time, I am astounded by the emotion and joy and sadness of the day. Here are my recaps of those amazing events: 2011, 2012 and 2013. And here’s a link to my keynote address to the crowd gathered at the ALS Gala at the Oregon Convention Center in March 2012.
March 20, 2014: Steve went in for surgery for a feeding tube placement and that day does not go as we anticipate. Here’s the story, told by Steve.
March 23, 2014: Having rescheduled surgery in Portland, and understanding more of the risks, Steve had a talk with our family to say his goodbyes. You can read my account of that evening here.
This fierce fight has opened up many amazing opportunities for me to write my heart out. Here are the books that have been born on our battlefield: Beautiful Battlefields, Ruthless: Knowing the God Who Fights for You and a new one coming in October.
So that brings us up to date. Can you see how the faithfulness of God runs like a river through our lives? I will keep adding to this page as the story unfolds. My deepest comfort is found in knowing that He already knows what this page will say and I know His goodness will prevail.