September is both Newborn Screening Awareness Month and Leukodystrophy Awareness Month. I had the privilege of writing two guest posts this year, instead of using my own blog and social media accounts to help reach a new audience.
Tag: Motherhood
Necessary but Unwanted Conversations
It’s been a heavy few days in our home. For months now, off and on, Isaiah has been asking to talk to baby Tori. To call her. To see her. … Continue reading Necessary but Unwanted Conversations
Looking Back at 2024 (Our Christmas Letter)
2024 was a year of joy, discovery, and change for our family. Let’s start with the fun parts: Family Adventures We saw a solar eclipse (April 8) and Northern Lights … Continue reading Looking Back at 2024 (Our Christmas Letter)
Advocacy Never Ends
Update on the boys (and a little venting): Because I’m ever the advocate, I wanted to share/vent about the difficulties we’ve been having with the boys and their hearing and … Continue reading Advocacy Never Ends
InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
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
Comparison in Motherhood
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
New Playroom and Redemptive Joy
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
Building and Rebuilding
My children love to build with blocks and Legos. They have become quite good at stacking them higher and higher and are always so proud of their creations. However, when … Continue reading Building and Rebuilding
Strength & Scars
Today Caleb broke the handle off of my favorite coffee mug. This mug was given to me while Tori was sick and I love that it has both giraffes and … Continue reading Strength & Scars
Day One after Ninety-Eight
Today was the first time in ninety-eight days that I was by myself with the boys all day long. Brennan returned to work on Friday but my parents were still … Continue reading Day One after Ninety-Eight
Even So, Joy 