Even So, Joy
Our Journey through Heartbreak, Hope, and Triumph
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Most parents reminisce about their child’s firsts—first word, first steps, first everything. It’s exciting to watch our children learn and grow as they explore their new world. For Brennan and I, it seems that we remember the lasts much more vividly—always in hindsight. Even now it is hard to pinpoint exactly when she lost certain abilities, because most of them happened so gradually that we didn’t even notice; or, we assumed she just wasn’t feeling well one day and therefore was not doing normal things, when in actuality she had lost another ability.
I often wonder if the Lord allowed us to have five perfect months with Tori because of what He knew was going to happen. Five months with a perfect baby; five months of smiles, laughter, and joy; five months of calm before the storm. As our Tori lost more and more of her previously achieved milestones in the months to come, we remembered. We mourned. The first week of January 2015 was one of lasts, but we didn’t realize it then.
I wrote on our blog about this one year later, in January 2016:
This week last year marks the last time Tori smiled, laughed, played with her toys, attempted to move on her own, and many other abilities. She rolled over for the first and last time this week last year. And then the number of photos posted daily slows down drastically, indicating that Krabbe came on with full force. She stopped being herself so suddenly and we didn't even realize it at the time.
However, in the midst of the sadness these memories bring, there is also immense joy. Every breath she breathes. Every time she opens her beautiful eyes. Every sigh of contentment. Every day that we are given with her is precious beyond words and we are filled with gratitude. We are thankful for her presence. For how she has impacted our lives and the lives of thousands who follow her story. For how she has changed us for the better.
She has taught us to love abundantly, to live fully, to forgive wholeheartedly, and to show grace freely. We are thankful for our Victoria.
She is such a fighter and we can see her continue to try to fight Krabbe with all she has: she is only on one med now instead of three; her visual perception improved as of last month. She even held her head up by herself two days ago! God gave her to us for a reason, and we will love her for the rest of our lives. We love this baby girl even more than we did one year ago—our love is more fierce, more intentional, more compassionate.
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About the Book
“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 God’s 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.
About the Author
Lesa Brackbill is a California native and Azusa Pacific University alumna who courageously followed the Lord’s leading and moved to Central Pennsylvania when she was twenty-five years old. There she met her husband, Brennan, and Even So, Joy is their story. Lesa and Brennan live in Hershey, Pennsylvania, and are expecting Krabbe-free identical twin boys in April. Their daughter, Tori, is Lesa’s inspiration, and she writes to encourage others and increase awareness about Krabbe leukodystrophy. Visit Lesa’s blog and website at
www.thebrackbills.com.