More Than a Diagnosis: Stories of Hurdles, Hope, and Possibility from Parents of Children Who Are Differently-Abled

By Jessica Burdg

"What do you want the world to know about your child?"
"What is raising a child who is differently-abled like for you, as a parent?"

These are two of the many questions Jessica Burdg asked the families you'll meet in More Than a Diagnosis, a compilation of sixteen poignant profiles from her ongoing blog series, "Stories of Hope."

Here, parents share their most painful moments as well as their triumphs, big and small, from the front lines of their living rooms, schools, doctor's offices, and more—all so you may find solace, recognition, and inspiration in their accounts.

Included are stories of families whose children have conditions like autism, ADHD, cerebral palsy, epilepsy, rare genetic conditions, traumatic brain injuries, or others. As unique as each child's journey is, common threads emerge: Pursuing different treatments. Rejecting limitations. Choosing hope.

There's no sugar-coating it; these stories are raw. They are real. They will change you.

One hundred percent of the proceeds from the sale of this book will benefit the Who Is Carter Foundation, which fully funds The Brain Possible. Both organizations support differently-abled children and their families.

• Language: English
• Publisher: BookBaby
• Release date: Aug 11, 2020
• ISBN: 9781544515076

Book preview

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One hundred percent of the proceeds from the sale of this book will benefit the Who Is Carter Foundation, which fully funds The Brain Possible. Both organizations support differently-abled children and their families.

Connect with Us: The stories in this compilation and others like them—along with resources, articles, and other tools for parents—can be found at thebrainpossible.com. To connect specifically with the stories included in this book, visit thebrainpossible.com/more-than-a-diagnosis.

A Note to Our Community: In this book, you will not find the term special needs outside of direct quotes. That’s because at The Brain Possible, our goal is to change the conversation around childhood brain injury from one of limitations to one of hope and possibility. We prefer to use differently-abled, as it feels more empowering and authentic to our mission. Anytime we can drop a label, we go for it.

That said, we know many parents and caregivers embrace the term special needs, and we certainly respect that decision.

We believe all children are beautiful and—yes—special. And differently-abled. Both are true, and we are all in this together.

Disclaimer: The Brain Possible does not provide medical advice, diagnosis, or treatment recommendations. It does provide resources, information, and hope.

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Copyright © 2020 Jessica Burdg

All rights reserved.

ISBN: 978-1-5445-1507-6

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To all the parents and children I have met along this journey, and to all I have yet to meet as I continue this project in the future. Your stories have both broken my heart into pieces and filled it with awe and joy. Thank you for who you are and how you move through the world—and most of all, thank you for letting me glimpse a small part of your overwhelming will and overwhelming love. You have and will continue to change me.

To every mother, father, stepparent, grandparent, sibling—any family, chosen or biological—of a child who is differently-abled. Or any child, for that matter. This ‘raising kids’ thing is hard, and it is filled with such beauty. I didn’t use but for a reason because the two are not mutually exclusive. Know that I see you, and this book is for you, too.

To every child, no matter your circumstance. I think you are wonderful just as you are, and I am so thankful you’re here.

Finally, to my daughters, Ella and Emmylou. You’re little now, but what I always tell you is true even (and especially) as you grow: anytime you don’t know what to do, simply pick the kind thing. Every. Single. Time. Keep being inclusive and doing what’s right as you branch out there in the big, wild world. I know you will. I love you.

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Contents

Foreword

Introduction

Gabe’s Story

Cooper’s Story

Piper’s Story

Sammy’s Story

Laird’s Story

Ashley’s Story

Soskay’s Story

Ryan’s Story

Evelyn’s Story

Caden’s Story

Beau’s Story

Ryland’s Story

Jaden’s Story

Brayden’s Story

Dierks’ Story

Grayden’s Story

Acknowledgments

About the Author

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Foreword

By Emily Abbott

April 22, 2020

When my husband Matt and I lost our son Carter at only twenty months old to complications from a brain injury he sustained as a newborn, we vowed to carry on his spirit of hope and joy. One piece of that has been forming The Brain Possible, a foundation that provides resources, information, and hope to families like yours.

I learned a lot during and after my too-short but beautiful journey with my son. One of the most important cornerstones, for me, was to find people who have walked this road before. I know firsthand that having a child with a complex condition means that you—parents and caregivers—may need to step into a new version of yourselves. You have more of an opportunity to become researchers, advocates, therapists, cheerleaders, influencers, citizen scientists, and warriors. This is a job that can push you to your limits. It may cause many sleepless nights, adrenal fatigue, and sometimes even isolation.

My point? We need each other.

The one thing that helped me find direction, answers, and the strength to step into my new role—which I readily admit was not easy, as I did (and sometimes still do) have moments of shock and grief—was hearing from other families. First, there was seeing the beauty in other people’s circumstances like mine. Then came the hope that I could do this because other people before me have done it and continue to do it every day. I learned that there is no reason we have to be alone and think about every challenge coming at us as if we are the first ones faced with them, putting in the extra work to build therapeutic and home/life solutions from scratch. We do not always need to reinvent the wheel when we can find out what has (and hasn’t) worked for others.

That is where the magic is: in finding connection and support from other families who have walked even a mile ahead of you. By sharing the stories you are about to read, these families are helping so many who are seeking, grieving, feeling lost, and facing complex diagnoses.

In my listening of other people’s stories, I also woke up to how we are all connected in this life. I learned how common so many neurological conditions are. I learned that bad things do happen to good people, every single day. I learned that there is so much that I don’t know and I should know, and I became thirsty for information and for ways to do and be better.

I became drawn to families who chose to look beyond their child’s diagnosis. In fact, I began to seek out those families pushing the limitations and carving out full, beautiful lives for themselves and their families. Families who didn’t focus on what they were told their child would never do, but instead wondered what they could do. Families who put blinders on to the noise of gloom and doom, of negative predictions or assumptions. Those were my people. Those still are my people. I was forever changed, I ascended into a new and evolved version of myself. Empowered. Strong. Resilient. Informed. Knowledgeable. Ready to share all of that with you.

I believe in miracles because I have seen them in others. I don’t pay attention to what the odds are. Miracles, by definition, defy reason, and I’m proud to live my life unreasonably. I have no room for limitations or labels, and I’m inspired by others who embody this belief as well. There is beauty in our children. There is beauty in our circumstances. Read these stories, hear from our community, and be changed.

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Introduction

During one of the interviews for this book, I was a bit late because I had a meeting at my oldest daughter’s school to discuss her Individualized Education Program (IEP)—a simple one for a stutter, nothing else. Certainly nothing major.

When I finally got on the phone, I quickly apologized for my tardiness, gave my reasoning, and tried to jump into the interview to make up time. But the mother on the other end of the line would not let me. Instead, she asked about my daughter. She said a stutter sounded hard for a little girl coming into her own socially. She asked questions. All this when we were about to dive into her experience with her daughter’s significant brain injury, the gravity of the issue on a different level, by all rights.

I had a meeting about my daughter’s stutter while her daughter may never speak, and she wanted to talk about how I felt? She wanted to hold space for me and listen? I was flabbergasted. This wasn’t apples to oranges. These orchards were on different planets. When I brought that up, she dismissed my pushback, saying, It all counts.

This example embodies a grace and an unyielding acceptance that I