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Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph
In life's toughest moments joy and heartache fight for our undivided attention. You determine which one prevails.
Stories are supposed to go a certain way or so we're told. You're supposed to grow up, get an education, find your dream job, meet the love of your life, get married and start a family, and then live happily ever after. So when Brennan and Lesa Brackbill had their first child, they never imagined that they would soon lose her.
In Even So, Joy, author Lesa Brackbill shares the touching and inspiring story of her first daughter, Victoria, who would sadly be lost to an impossible situation after being diagnosed with Krabbe leukodystrophy when she was only six months old. Victoria was everything Lesa and her husband, Brennan, had hoped for, but faced with her terminal disease, their world was turned upside down. Though their story could have been filled with sorrow and despair, God was there to fill the story instead with gratitude and joy.
The Lord has a purpose for everything, and even though that purpose is not always fully revealed, we can learn to walk daily in the hope that God is going to redeem our sorrows. Lesa and Brennan won't be the last couple to lose a child to an impossible situation, but through Tori's life and with Gods faithfulness and help it will be a story that can encourage us to remember that God is good, God is sovereign, and God is faithful. Always.
280 pages, Hardcover
Published January 30, 2018
10 people are currently reading
54 people want to read
About the author
Lesa Brackbill
2 books14 followersLesa Brackbill is an author, advocate, and the Director of Advocacy for Patient Advocacy Strategies. Following the 2015 Krabbe disease diagnosis and 2016 passing of her daughter, Victoria, Lesa dedicated her life to reforming newborn screening. Her efforts were instrumental in the passage of Pennsylvania’s Act 133 of 2020.
She is the author of Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph and A Brighter Blueprint: The Twelve Threads of Effective Advocacy.
Lesa holds a Master’s in Strategic Communication from Azusa Pacific University and serves on the Board of Directors for KrabbeConnect. She lives in Hershey, PA, where she also serves as a School Director for the Derry Township School District.
She is the author of Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph and A Brighter Blueprint: The Twelve Threads of Effective Advocacy.
Lesa holds a Master’s in Strategic Communication from Azusa Pacific University and serves on the Board of Directors for KrabbeConnect. She lives in Hershey, PA, where she also serves as a School Director for the Derry Township School District.
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Displaying 1 - 8 of 8 reviews
February 11, 2018
When you can go through the darkest things imaginable and still find joy, I am humbled. Lesa and her husband thought some of their dreams were coming true when their daughter, Victoria (Tori) was born. But, just a few months after her joyful entrance to the world, The Brackbills were given devastating news. Tori was dying. She was born with Krabbe, a deadly disease not screened for at birth. That screening could have saved Tori's life, but instead of being angry and bitter, Lesa and Brennan chose to find the joy in every moment they had with her, including her last few breaths on this earth.
Lesa and Brennan choose to keep the faith, choose to believe God is bigger than this bitter, horrible thing they had to go throw, and choose to believe that there is life after death for Tori (and for them).
As this book hits the shelves, Lesa and Brennan are expecting twins (already screened for Krabbe) and are still advocating for families around the world so that no one will have to go through what they went through.
*Note: I am a friend of Lesa's and walked through Tori's journey with her online like so many others. I was given an early copy of this book for review as a part of her launch team.
Lesa and Brennan choose to keep the faith, choose to believe God is bigger than this bitter, horrible thing they had to go throw, and choose to believe that there is life after death for Tori (and for them).
As this book hits the shelves, Lesa and Brennan are expecting twins (already screened for Krabbe) and are still advocating for families around the world so that no one will have to go through what they went through.
*Note: I am a friend of Lesa's and walked through Tori's journey with her online like so many others. I was given an early copy of this book for review as a part of her launch team.
November 30, 2020
This is a beautiful story of faith through tragedy and shows how God can still be there in the darkest moments of life. This family has been through more than most but shows a remarkable trust in God's goodness. In a time when many people turn from God after the first real hardship of life, this is a story we all need to remind us that God is not absent in our suffering.
March 31, 2018
"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."
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."
June 20, 2018
What a Powerful Testamony!
Over the past year and a half I cannot see a giraffe without thinking of Tori and her parents. This is an amazing book about two very Godly and committed people and their walk while caring for their very sick little girl Tori.
Over the past year and a half I cannot see a giraffe without thinking of Tori and her parents. This is an amazing book about two very Godly and committed people and their walk while caring for their very sick little girl Tori.
March 12, 2019
Heartbreaking and beautiful. A powerful story of love, loss, and redemption.
February 9, 2018
This is a story of heartbreak, joy, hope, loss, and life. It’s a story of a beautiful baby girl who was only on this Earth for less than 2 years but impacted thousands of lives. This is a story about how God could (and does) use everyone and everything for his glory. It’s a story about how those who loved Tori turned to God in their heartbreak. Have tissues ready when you read this because Tori’s story is heartbreak but also hopeful.
I received a digital copy of this book in exchange for an honest
I received a digital copy of this book in exchange for an honest
February 15, 2018
Even So, Joy
Lesa tells Tori's story beautifully & with a mother's heart. Hers & Brennan's faith shines through their touching story. Tori's legacy will live on through her story.
Lesa tells Tori's story beautifully & with a mother's heart. Hers & Brennan's faith shines through their touching story. Tori's legacy will live on through her story.
February 14, 2018
this is a story woven with hope in the most unlikely place...while watching your child slip away from an incurable disease. the faith of Lesa and Brennan during this journey is evident. God's hands in every part of this story are evident. this book will not only help and support those dealing with a similar story, but each person looking for God's movement in their lives. Lesa invites you to walk the story with her as she opens her heart and her inner most thoughts. Take her hand and experience the grace of God in the midst of loss.
I am a friend of the family and recieved an advanced copy as part of her launch team in exchange for my honest review.
I am a friend of the family and recieved an advanced copy as part of her launch team in exchange for my honest review.
Displaying 1 - 8 of 8 reviews