Excerpt from Josie's Journey

When our daughter, Josephine, was born, she suffered a Brachial Plexus Birth Injury (BPBI). This simple statement is just the tip of an iceberg to a whole world of information, people, organizations, injuries, ranges of recoveries, and a general lack of awareness for a potentially life-long injury.

Shortly after she was born, I started a blog. Of course, I had high hopes for its visibility in spreading awareness of her injury. Still, it was more a form of catharsis than anything as I searched for answers.

It was honestly a neglected effort at best. It was tended to sporadically and needed to be developed at a higher level of professionalism.

Over the years, I tried to add to it as much as possible, but life and our other children always took precedence. As Josie continually made progress, life changed, and her treatments changed, it felt more futile to try and maintain it. At the time, it had served its purpose of helping me cope with the feelings of defeat and crazy optimism, but it was left to fade into obscurity.

Sometime later, I began working on a children's book about BPBI, (Ellie the Elephant's Lucky Arm, Pip the Penguin Has a Very Funny Flipper, and Oscar and Olive Go to Therapy)...

…but without a readily available illustrator, it also sat for some time untouched. As I again began to pursue finding an illustrator, it started to dawn on me that this children's book would be an excellent way for small children beyond my own, to better understand their injuries…but what about the parents? What about us? We need something to help us understand and come to terms with it, as well, if not more so, as we are the guiding factor in our children's understanding of everything.

As I began my research, I found that the lack of support and reliable resources for parents whose children suffered a BPBI wasn't just slim but almost nonexistent. It is definitely out there, but finding it is no easy feat. And to wade through the inaccurate, fruitless, and potentially hazardous information is another task in and of itself.

So as my knowledge of the injury has grown, my appreciation for those before us who had even less support has grown, and as my determination has grown, so has this project. It became my mission to compile the most accurate information in the most useful and accessible way possible to help parents navigate this tricky road.

Finally, all of my research over the years, the conversations I've had with other parents and experts alike, our personal experiences, and my long-ignored blog have all culminated in this book. It has been a labor of love made possible only by the contributions of so many others.

This book is to bridge that knowledge and awareness gap.

I am not a physician. Nor am I a physical therapist, occupational therapist, psychologist, social worker, or an expert of any sort. I am just a mom. A mom to a girl who suffered an injury for which it felt nobody had any answers. My hope is that with this book, no more parents will have to spend those first few days post-injury feeling completely lost and directionless, starving for answers, resources, and support.

This is to be the guide that I, like so many others, wish we had had in the beginning. I will touch on what this injury entails and how it is caused, but that is not the point of this book, as there are many more expert resources for defining the injury, its symptoms, prognosis, etc. And chances are that if you are reading this, you already have a diagnosis and know what it is. This is for the "now what?"

Here I am going to share our story and the journeys of others. Some of these stories are from parents of young kids suffering from a BPBI; some are from adults who have grown up with BPBI and still live with it, and many other perspectives. Some are easier to read or are more optimistic than others, but we are all on the same journey, and how we got here varies as much as we do individually.

I want to, beyond these stories, provide resources that give you a good place to start your own journeys.

This is not a textbook, a book for medical advice, or legal guide. It is not a cure. I am not offering a cure. Because there is no cure. What I am offering is solidarity, a light at the end of the tunnel, a silver lining…it is hope.

This has been a sneak peak at the introduction to Josie's Journey: A Parent's Guide to Navigating a Brachial Plexus Injury, to be released very soon. We are all facing this injury together, and the better prepared we are as parents, the better we can prepare our children for living with the injury in the happiest and least limited way possible.

This book has been a culmination of research, experience, anecdotal accounts from other parents or BPBI individuals, and advice from experts in the field. My hope is for parents faced with this diagnosis to never again feel as we did in those early days.