I have frequently mentioned that this last year introduced me to a tribe of women that have exploded my little world exponentially in terms of love, friendship, and adventure. Each of these women brought their own life experience, challenges, and journey. Stories of pregnancies, births, adoptions, cancer, addiction, divorce, dating… you name it, we’ve supported our tribe through thick and thin this last year.
And then came a tough one. One that no parent should have to tell. It is hard to know where to begin when it comes to this story. It is heartbreaking and beautiful at the same time.
One of these ladies, Lesa Brackbill shared the news that her baby girl Tori’s had been diagnosed over a year ago with Krabbe, a rare and terminal disease that impacts the nervous system. One day, Lesa saw the light go out in her daughter’s eyes, her smile and expressions had disappeared.Genetically passed down, it typically appears by 6 months of age, and children with the disease do not survive past the age of two. Lesa and her husband Brennan spent the next 16 months advocating for genetic testing for Krabbe after learning that the disease is treatable if discovered at birth.
As a mom, the pain of this is unimaginable. But the Brackbills understood that Tori’s life would be a testament to God’s love. They began to use their blog, The Adventures of the Brackbills to document Tori’s journey. Knowing her time on Earth would be short, they created a bucket list of adventures and experience for Tori, visiting Disney and the Grand Canyon, seeing real giraffes (her favorite), and the little things in life such as picnics, catching fireflies, and playing in the leaves.
It would be easy to become bitter. It would be easy to be filled with hatred towards God for the brevity of their time with sweet, little Tori. But, God. They knew God would be right there holding them, comforting them, carrying them through the storm. Isaiah 43:2 says “When you go through deep waters, I will be with you.” Lesa and Brennan walked through this season with grace and assurance from God, praising His plan for something greater than them.
Today, they celebrate sweet angel Tori’s life. Please take a moment to lift up this family in prayer as they mourn Tori’s earthly death and rejoice in her complete healing in heaven, regaining her voice and smile with Christ Jesus.
Love, Grace, and Friends 