Today I had the privilege of attending a meeting with Representative Angel Cruz and his staff, Dr. Rachel Levine (the Physician General of Pennsylvania), and two other state representatives regarding … Continue reading Meeting with the Physician General
Today, Hospice of Central Pennsylvania held a butterfly release to honor our loved ones who have passed away. Though Brennan had to work, I went to represent our family and … Continue reading Hospice Butterfly Release
Somehow we neglected to post on this blog about our visit from Jordan Hill of the Seattle Seahawks in April! I was reminded of this when our story appeared on … Continue reading When Jordan Hill Visited…
I love when God speaks to you so clearly through circumstances. If you come across a passage of Scripture once in a day you might read it and then move … Continue reading Even Though…
Before Tori was born, many people told us to cherish the early years because they would go quickly, never to return. After she was diagnosed with Krabbe the moments moved … Continue reading Fleeting Moments
While my dad was still in Pennsylvania with us, I came up with a plan to fly to California for a week over Mother’s Day weekend as a surprise for … Continue reading Mother’s Day Surprise
Yesterday, I (Lesa) had the opportunity to attend the quarterly meeting of Pennsylvania’s Newborn Screening (NBS) Advisory Board. These meetings are open to the public but members of the public … Continue reading NBS Advisory Board Meeting, April 19, 2016
Today I (Lesa) had a meeting with the staff from Representative Angel Cruz’s office regarding the legislation they are preparing to introduce to reform the way Newborn Screening is done … Continue reading Call to Action in Pennsylvania
(I started this post a month or so ago and saved it as a draft…I feel it is still an informative post so I finished it, though I changed some … Continue reading Krabbe and The Gradual Loss of Abilities
Several people in our lives have expressed concern that we are suppressing our grief or being “brave” for the world instead of being mournful in the wake of losing Tori. … Continue reading Transparency in Grief
Even So, Joy 