Dying is not a word that should describe anyone’s six-month-old child.
But that’s the word Lesa Brackbill heard when her daughter Tori was diagnosed with Krabbe leukodystrophy, a disease that progressively damages the nervous system, resulting in death. Lesa and her husband Brennan were overjoyed when Tori was born, especially after struggling with infertility. Tori’s first several months went smoothly until she began missing milestones and struggling to eat. After a misdiagnosis of reflux followed by extensive testing, Lesa and Brennan received the devastating news that Tori was indeed dying.
During the time before Tori’s diagnosis, her story began spreading on social media. And after her diagnosis, thousands began following Lesa’s blog and Tori’s Facebook page. Supportive strangers from around the world, friends, and family donated money, held fundraisers, and prayed fervently for Tori. I became one of those following Tori’s story because of a mutual acquaintance, and in fact, the Brackbills were living in my hometown at the time.
It was a mental battle like none other, one that took months to overcome. Why is it that we fight the hardest against the things we cannot change, even when we know that God is ultimately in control?
Lesa updated her blog regularly, opening up about her faith in Jesus Christ and the struggle to hope continually that God would heal Tori while accepting that may not be his will. On March 27, 2016, Tori Brackbill went to be with Jesus, now fully healed and free from Krabbe. Not long after Tori’s home-going, Lesa began writing a book detailing Tori’s short, but influential, life, Even So, Joy.
How can parents have joy when their child is dying? How can they even carry on in daily life? Lesa answers these questions and more in her book. She and Brennan cultivated and fought for an attitude of gratitude:
We had so much to be thankful for despite the looming threat of death that was constantly present.
The time for mourning and grieving would come. Eventually. Until then, it was a time for joy, for laughter, for dancing, for life, and for love.
The Brackbills created a bucket list for Tori that included everything from mother-daughter pedicures to visiting the Grand Canyon. Lesa kept Tori’s followers updated with pictures and blog posts. Lesa details some of these adventures in the book. They chose to live despite the shadow of death because they know the One who conquered death:
We will always love our girl, and we will never be the same. But how can we not praise the One who made her, who so perfectly orchestrated her entire life and even her death?
Even So, Joy is not only the story of Tori’s life and death, but it’s also a primer on surviving and even thriving during loss and intense grief. Lesa offers valuable insight into caring for the caregiver(s) including what to say, what not to say, what to give, and when to give. Lesa spent most of her days holding Tori, and even something like a cup of coffee was a welcome gift. She also details specific steps she and her husband took to maintain and strengthen their relationship.
My main interest in reading Even So, Joy was Lesa and Brennan’s life after Tori was healed in heaven. How had it changed them? How did they feel? Instead of retreating, Lesa and Brennan have embraced their lives while looking forward to the day they’re reunited with Tori.
The depth of my love for my daughter is not measured by the number of tears I have cried, but rather by the life I choose to live in her absence. I choose to live a life of love, joy, peace, patience, kindness, goodness, and grace (Galatians 5:22). She deserves all of that, and more.
Joy isn’t always obvious; sometimes you have to fight for it, sometimes you have to search for it, but the journey toward a joy-filled life—especially when it seems impossible—is always worth it.
Purchase Even So, Joy
Reviewed by Natalie