Lesa Brackbill - Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph

Even So, Joy

Our Journey through Heartbreak,
Hope, and Triumph

LESA BRACKBILL

Copyright 2018 by Lesa Brackbill.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

This book is a work of non-fiction. Unless otherwise noted, the author and the publisher make no explicit guarantees as to the accuracy of the information contained in this book and in some cases, names of people and places have been altered to protect their privacy.

Scripture quotations marked (NIV) are taken from the Holy Bible, New International Version, NIV. Copyright 1973, 1978, 1984, 2011 by Biblica, Inc. Used by permission of Zondervan. All rights reserved worldwide. www.zondervan.com The NIV and New International Version are trademarks registered in the United States Patent and Trademark Office by Biblica, Inc.

Scripture quotations are taken from the Holy Bible, New Living Translation, copyright 1996, 2004, 2007, 2013, 2015 by Tyndale House Foundation. Used by permission of Tyndale House Publishers, Inc., Carol Stream, Illinois 60188. All rights reserved.

Cover photo by Alexis LeClair Photography

WestBow Press

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

ISBN: 978-1-9736-1242-1 (sc)

ISBN: 978-1-9736-1241-4 (hc)

ISBN: 978-1-9736-1243-8 (e)

Library of Congress Control Number: 2017919539

WestBow Press rev. date: 01/30/2018

For Tori

And for all the other Krabbe and leukodystrophy babies who went to heaven far before their time.

Your strength and courage are why we continue to fight for universal newborn screening for Krabbe.

A portion of this books proceeds will be donated to Hunters Hope.

Contents

First and foremost, thank You, God, for opening these doors to tell this story of Your faithfulness and love. Thank You for giving Tori to us and allowing us to be her parents.

Brennan, I love you and am so thankful for you. Thank you for supporting my dreams so selflessly and for being an incredible husband and father. Watching you with Tori brought such joy to my heart, and I cannot imagine living this life with anyone else. As our genetic mutations clearly show, we were meant to be.

Thank you to our parents and family, for being completely supportive throughout our journey. To my parents for sacrificing so much so that you could help us, and for spending months out here serving us. To Amy for your faithful Thursday-night visits and for being so present throughout our journey. To Cheyenne for so selflessly helping us however you could.

To Kristin Roth for giving me the courage to start this in the first place and for editing itwhat a gift. Im so thankful for how God brought us together!

To our church family, Transcend Church Harrisburg, for your love and grace through it all.

To John Neal and Team Krabbe Strongyou do so much for all of us and we thank you.

To Dr. Maria Escolar and her amazing staff members, Barbie, Tara, and Mary.

To Penn State Milton S. Hershey Medical Center and Toris team of specialists, especially Dr. Debra Byler, Dr. Amanda Ely, and Dr. Faliye. Thank you for your love and compassion, and thank you for respecting Brennan and I and the knowledge we brought to the table. Thank you, also, for being the first hospital (and currently the only hospital) in the state of Pennsylvania to screen all babies born at your hospital for Krabbe.

To the Hummingbird Program, especially Nicoleyour support and expertise in palliative care was invaluable, and we are so grateful.

To our leukodystrophy family for their support, love, and acceptance. We would all trade this family for a healthy child, but since we cant change our circumstances, we embrace this special family and love each other.

To Hospice of Central Pennsylvania, especially our nurse, Jenny, for your thoughtful care of Tori and for handling all the necessary tasks after she went to heaven.

To the Quinn Madeleine Foundationthank you for sending us to Disney World as part of Toris bucket list. Im so thankful for the legacy you have established for your Quinn and the families you are helping in her honor.

To the Finley Projectthank you for the support you provided after Tori went to heaven. Your Finley has quite a legacy and would be so proud of how you are helping families.

To the Hunters Hope Foundation, Judsons Legacy, and the Jackson ProjectI cannot say enough about how much we love what you do. Thank you for loving us.

To Early InterventionRose, Cheryl, Kelly, Diane, Erica, Tara, and Colleenthank you for making my weeks brighter and for providing ways to care for Tori that were innovative and stress-relieving. Your visits were a bright spot for me.

To those in the media who loved Tori and helped make her story known, specifically Brant Hansen, Kyle Rogers, Donna Kirker-Morgan: thank you for all that you did for her and for us.

To Representative Angel Cruz and his wonderful staff, Ashley McCahan and Rachel Romanofsky, for continuing to fight for newborn screening for Krabbe in Pennsylvania and for being such an encouragement. Thank you for continuing to include me!

To everyone who brought me coffee or a meal during the day; to Michelle Morrison who was our chauffeur to appointments when it became impossible to drive Tori by myself due to her constant need for suctioning; to everyone who sent us cards and gifts for Torithank you all for loving us in such tangible, visible ways.

To those who provided extra support consistently: Molly Howard, Karen Schlott, Brian and Kristin Piarulli, Shannon Thornton, Sarah Mae, Amy Smoker, Ashleigh Lindsey, Rachel Gunsauls, Jessica Spangler, Kathy Kramer, Shian Wing, and many more. Thank you to my Dreamers & Builders friends for your support, encouragement, love, and grace.

Thank you to the team at WestBow Press who made this all happen, and to my faithful launch team for helping spread the word about Toris story!

Last but certainly not least, Team Tori: this journey would have been much bumpier had it not been for Team Tori and your incredible love, encouragement, support, and hope. Thank you for loving our Tori and for always being there.

I saw a big event on YouTube the other day.

All the important people were there. Celebrities. The big stars. Headliners. And they were all gathered together to say something about a tragedy.

There had been a terrorist attack at a concert weeks earlier, and this event was to remember the dead, talk about the attack, and raise money for the victims families. All worthy reasons to gather, of course. But that wasnt the striking thing about the event.

The striking thing was how little they actually had to say.

They talked of love, and how its stronger than hate, and I certainly agree with that. But I couldnt help but notice that they were surrounded by such a high level of armed securityhelicopters, soldiers, and the likethat the press called it a ring of steel.

So maybe love is stronger than hatewe can overcome fear, provided love has a little boost from ample firepower and bomb-sniffing dogs. Maybe thats the lesson. I dont know.