In early March I was interviewed by InvestigateTV after speaking with reporter Joce Sherman on the phone a few months earlier. She came to our home, where I thankfully was … Continue reading InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
This weekend, our family traveled to Columbus, Ohio in order to visit and present to Forge Biologics – the incredible company with a promising gene therapy for Krabbe Disease in … Continue reading Our Visit to Forge Biologics
I used to dread turning forty. It sounded so “old” to me and I couldn’t imagine being in that decade of my life, in what is presumably the middle of … Continue reading The Middle of My Story (Turning Forty)
Baby girl, today you should be turning eight. Eight. It is unbelievable that I first held you in my arms that many years ago… …and even more unbelievable that I … Continue reading Eight
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
As the sixth anniversary of Tori’s death quickly approaches (Sunday), and with the passing of my friend’s daughter Calliope yesterday, I have been reflecting a great deal on the beauty … Continue reading Triumph and Purpose After Tragedy
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
Even So, Joy 