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Even So, Joy

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

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A Prophetic Note Received

March 29, 2016March 29, 2016 · 2 Comments ·

I started this draft of this post over a month ago, and I never posted it for some reason. Now I am glad that I hadn’t posted it because God … Continue reading A Prophetic Note Received

Silence 

March 29, 2016 · 9 Comments ·

   For the past four months we have had the constant humming of an oxygen concentrator in our home. Every few minutes we would hear the loud noise of the … Continue reading Silence 

No Regrets

March 28, 2016 · 28 Comments ·

   Tori has been in Heaven for twenty-six hours now, and while we miss her deeply, I cannot express the peace that I feel. I have often pondered over the … Continue reading No Regrets

Victoria Ruth’s Last Hours and the Hope of Heaven

March 27, 2016 · 56 Comments ·

This morning our dear Tori met Jesus face to face and was healed. Last night was my night to sleep upstairs, but I told Brennan, as always, to text or … Continue reading Victoria Ruth’s Last Hours and the Hope of Heaven

Tori’s Bucket List: Find Easter Eggs

March 25, 2016March 25, 2016 · Leave a comment ·

Though finding eggs has nothing to do with the reason we celebrate Easter (the Resurrection of Jesus), it is a fun activity for children to do. It was a fun … Continue reading Tori’s Bucket List: Find Easter Eggs

Tori’s Bucket List: Jump in a Puddle

March 25, 2016 · Leave a comment ·

One of the greatest childhood joys is jumping in puddles. It’s as if there is a magnet pulling kids toward puddles and they just have to play in them! So, … Continue reading Tori’s Bucket List: Jump in a Puddle

A Night to Breathe

March 20, 2016 · 3 Comments ·

Last year (right after Tori’s diagnosis), I was invited to attend a beautiful evening for mothers called “A Night to Breathe” and it was such a refreshing event. It was … Continue reading A Night to Breathe

A Little Miracle

March 18, 2016March 18, 2016 · 1 Comment ·

We received some interesting news today in a voicemail from Dr. Escolar: She took Tori’s MRI to a neurosurgeon and it was discovered that, even though she does have extra … Continue reading A Little Miracle

The Road Trip that Almost Was…

March 18, 2016March 18, 2016 · 8 Comments ·

In early January we purchased our plane tickets for ten days in California with my family and we were SO looking forward to being out there. We had planned to … Continue reading The Road Trip that Almost Was…

Rare Disease Day at the Capitol

March 16, 2016March 16, 2016 · 1 Comment ·

Today was an exciting day for Tori (and us). Today those with Rare Diseases in Pennsylvania were recognized and their advocacy efforts were applauded publicly at the Capitol. Tori and … Continue reading Rare Disease Day at the Capitol

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