When Isabella was born I made a promise to her that I would always tell her the truth no matter what. It hasn’t always been easy but I have kept my word. When Isabella was originally in the hospital with encephalitis I took pictures of her every day. If she was going to die, I still wanted pictures of her last days. Thankfully Isabella survived and when we made it home I made a picture book for her. It is called Isabella’s Journey. In this book are all the pictures that I had taken of the hospital and inpatient rehab. I wrote the book from my experience to her. It was my heartfelt emotions, fears and everything else included.
When I wrote this book and others found out they discouraged me from telling Isabella about her brain injury. They didn’t feel it was appropriate to show her the pictures or tell her the truth. To me that was a crazy thought given that this happened to HER. In my opinion Isabella had every right to know the truth. I also knew that this book would help answer questions that could come up later in life.
The book is on Isabella’s book shelf and she likes to look at it. We do not read the words as they are not appropriate for her to hear right now. That said, she knows the gist of what happened. We talk about the boo-boo in her brain every day. After all Isabella’s brain injury has severely impacted every aspect of her life. Isabella and I refer to the book when she asks questions such as what the scar on her arm is from (the PICC line).
Last week, Isabella was in the shower and she was not being safe. Out of desperation I told her that I knew a little girl who got a boo-boo in their brain from falling in the shower. It briefly stopped Isabella for that moment. A few days later I had to remind her again about being safe in the shower. Isabella responded something but I couldn’t understand her. I asked her to repeat it and she said it again but I still couldn’t figure it out. Finally she yelled, “How did I get a boo-boo in my brain”. I froze for a minute because the question caught me off guard. The moment I have waited for had arrived. Prior to that moment I knew that Isabella understood she had a boo-boo in her brain but I also knew she hadn’t put all the pieces together yet. Isabella had never asked how she got a boo-boo in her brain. I explained to Isabella in very simple terms that she had gotten very sick and she slept for a long time. I told her that the boo-boo in her brain happened because she was so sick. As soon as Isabella was out of the shower, she grabbed the book so we could talk about it more.
While others may not understand why I made the book for Isabella, I know that it has been a very important tool in helping her understand what has happened. I have always answered her questions with enough information to satisfy the question. As Isabella gets older and can handle more info I will provide it.
How have you explained the brain injury to your survivor?
Guest Blogger, Kristin Olliney, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.
Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.