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
Category: Leukodystrophy
Silence
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
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
Tori’s Bucket List: Find Easter Eggs
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
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 Little Miracle
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…
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
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
Tori’s Bucket List: Attend a Tea Party
When Wendy Myers first asked me if Tori would like to attend a tea party, I imagined a small, simple gathering in a living room or backyard. Never would I … Continue reading Tori’s Bucket List: Attend a Tea Party
Pittsburgh, Round Five: Day Four
Today was our last day in Pittsburgh and it was a fairly easy one. Tori had lab work to check her potassium levels first thing this morning. They have stabilized … Continue reading Pittsburgh, Round Five: Day Four
Even So, Joy 