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…
Tag: Tori
Even Though…
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…
Fleeting Moments
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
My Third Mother’s Day
I have never been one to embrace or become attached to holidays like Valentine’s Day or the other “Hallmark Holidays” like Mother’s Day, primarily because I have been taught to … Continue reading My Third Mother’s Day
Removing the Sting of Death, Part Two
Disclaimer: As with anything I write, I write with the understanding that we all process death and grieving differently – even as believers – and this is not a judgment … Continue reading Removing the Sting of Death, Part Two
Day One
Today our new life begins. A life without Tori. A life with new purpose and priorities. The visitors have stopped, the mail has slowed, the house is quiet. Tori has … Continue reading Day One
NBS Advisory Board Meeting, April 19, 2016
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
The Discipline of Gratitude
I was taught a lesson (a discipline, really) during my senior year of high school that has had a profound impact on my daily life: the discipline of gratitude. A … Continue reading The Discipline of Gratitude
Call to Action in Pennsylvania
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
Krabbe and The Gradual Loss of Abilities
(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
Even So, Joy 