Today is a big day for the Krabbe community! The committee (HRSA) that decides which conditions are added to the federal Recommended Uniform Screening Panel (RUSP) voted UNANIMOUSLY today to … Continue reading Krabbe Moved Forward to Full Evidence Review
If you had asked me three days ago if I would ever go to grad school, I would have said no. I’ve thought about it off and on since I … Continue reading A New Chapter Begins
I saw a post on Facebook today that made me feel many things all at once. It was a post by a mom in a large Facebook group known for … Continue reading Comparison in Motherhood
When Tori passed away, Brennan and I made a commitment to always making March 27th a special, joy-filled day. After all, she’s having fun, so why shouldn’t we? We usually … Continue reading Six Years – Celebrating Tori
Six years ago today (at 9:05am) we said farewell to our beautiful daughter. That day, we went through the motions of implementing the decisions made months before – unwanted tasks … Continue reading Six Years – The Impact
I’ve been struggling for months. Even worse, it has taken me until very recently to put a name to the struggle. About two weeks ago I figured it out and … Continue reading Naming the Struggle
It’s been almost six years since I wrote this post about the playroom we created for Tori in the midst of medical appointments and uncertainty. It was a project of … Continue reading New Playroom and Redemptive Joy
“I know more about Krabbe than I’ll ever know about Collin.” Kevin Cushman My friend, Kevin, made this statement at a recent Krabbe panel in which we both participated and … Continue reading There are Stories to Tell and Lives to Save
I’ve been thinking about death more than usual over the past year. And it’s not what you may be thinking. It all started with Tori. Before her diagnosis I don’t … Continue reading The Brevity of Life
My birthday always coincides with the time most people spend reflecting on the previous year, so I get away with only reflecting once. 😉 This year has been one of … Continue reading This is Thirty-Eight
Even So, Joy 