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Even So, Joy

Weaving a Brighter Blueprint for Advocacy, Legacy, and Life.

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The Brackbills

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Will They Wonder?

August 2, 2016August 2, 2016 · Leave a comment ·

As we walked through the Hershey Gardens today after locating the tree placed there in Tori’s memory, I noticed all of the bricks and sculptures that had been placed in … Continue reading Will They Wonder?

What Might Have Been

July 30, 2016 · 3 Comments ·

I try not to think about what might have been, cause that was then… We can’t go back again, there’s no use giving in, and there’s no way to know … Continue reading What Might Have Been

Hunter’s Hope Symposium: Thursday 

July 28, 2016July 28, 2016 · 1 Comment ·

Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent … Continue reading Hunter’s Hope Symposium: Thursday 

Meeting with the Physician General

June 30, 2016June 30, 2016 · 5 Comments ·

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

Hospice Butterfly Release

June 26, 2016June 26, 2016 · 2 Comments ·

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

When Jordan Hill Visited…

June 6, 2016 · 1 Comment ·

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…

Even Though…

June 6, 2016 · 4 Comments ·

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

June 5, 2016June 5, 2016 · 2 Comments ·

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

Removing the Sting of Death, Part Three

May 8, 2016 · Leave a comment ·

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 Three

My Third Mother’s Day

May 8, 2016May 8, 2016 · 3 Comments ·

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

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