My Life By Me is a personal memory book for terminally ill kids with prompts to help them record and create pages of their life, history, experiences, and memories. It can help children work through questions about their illness and understand thoughts and feelings that may be difficult to put into words. This book can be used alone or with parents or caregivers to help recreate and document important events, stories, and people from a child's life. This book allows kids to create their own story of life--something beautiful and unique--and gives them an opportunity to share this book with their family and friends should they choose.
For parents and other adult caregivers, a comprehensive guide is available on the APA website and includes additional information on child development, grief, and facilitating difficult conversations and open communication for terminally ill children and their families.
From the introduction:
My Life By Me is just for you. It's a book where you can write all about you--who you are, who you used to be, and who you want to be. Here, you can describe your wishes and dreams and express your thoughts and feelings. You can include just about anything you want. It's your book
My Life By Me is also a neat way for the people you care about--like your parents, siblings, or friends--to help you and to better understand your thoughts, feelings, and experiences that may be too difficult to put into words.
When faced with an illness, it is completely normal to have lots of different emotions and questions. Even adults have many different feelings--they might be happy, sad, and even scared. Sometimes their own fear stops them from talking about certain parts of your illness. While they do not know all the answers, they do want to be there next to you during this whole journey.
Inside this book, you'll find lots of pages. Some have blanks to fill in. Other pages have space to write or draw. There are also many places to include photos,
drawings, and artwork.
You may find that some of the pages are easy to complete, while others may be more difficult. Start at the beginning and try to go in order, but it is okay to skip over or not finish the pages that you do not feel ready to work on yet. You can go back any time that you are ready. Some things may be scary to share, but lots of kids feel better when they can write or draw about these things.
But, here is the single most important thing about this book: You are the author and you are completely in control of what you want to include and what you want to leave out. You can work on this book anytime and anywhere. If you want others to help you work on the pages of this book, ask them. If you don't
want help, that's fine too. It's totally up to you. Because you are the expert on your life, there are no wrong answers.
Everything that you choose to share is a gift, just as each day you live is filled with blessings, big and small. You are extremely special, and your words, actions, and thoughts will always be remembered. Your life will continue to affect the many people who love you, leaving a lasting mark on the world.
About the Author
Beth Barber, PsyD, works in the psychology department of the Children's Hospital of Los Angeles with the exceptional children and families who have inspired this book.