After my amputations, my skin grafts were placed, and all of my surgeries were complete, I remember the social worker approaching me while I was in my hospital bed with my husband at my side. She talked to us about what we would tell our children - they were two, three, and four years old. At this point, they knew I was in the hospital and they had come to visit while I was carefully covered and wrapped. However, they did not understand the extent of the damage that Sepsis had caused. When my husband could not be with them they spent their time with my brother and sister-in-law. It was their home away from home and as far as they were concerned, it was summer vacation with their cousins that they loved.
I had no idea what to tell them. I hadn’t even thought about it because I was so consumed with everything else, but I’m sure my husband had. One option was for my husband to tell them at home before they came to visit me. To me, this seemed like it could get extremely out of control. Little kids' imaginations can go wild and with such an unfamiliar topic - I had no idea what chaos might ensue. My family searched for books about the topic that might help bridge the gap for my children’s imaginations, but they could find none. They were too young to watch ‘Soul Surfer’ and I believe they had watched the dolphin movie. We decided it would be best for them to come to the hospital for a visit. They would be surrounded by our family and my husband would wheel me out in my chair. I had no idea if this was the best thing to do, but I knew that I wanted to be there when we broke the news to my children. The first thing out of my son Gage's mouth was “Mommy you don’t have any feet.” The next was “And you don’t have any hands.” the rest of the visit was a blur. I remember my in-laws and parents reassuring my children that everything would be okay and that they were very lucky I was alive. I would come home and be the mommy that they remembered from before. We all knew this fact was not true. After surviving septic shock and having multiple amputations and multiple surgeries, nothing could ever be the same again.
When I came home, my oldest - Gage - was starting kindergarten. I was worried about how my changes would affect him. I did not want other kids to make fun of him because of me. I went into the classroom as often as I could, so that the children would get used to me and the way that I looked. I also wanted to be the mom that I had dreamed about being. The mom that came in as a volunteer and baked the cookies and was involved in all the school activities. What happened along the way was interesting. I would stay and go out onto the playground for recess. Once I had my prosthetic feet, I was able to become more independent at school. Kids would ask me “What happened?” and I needed a short and simple answer that would satisfy their questions. They did not need to know all the details but they knew I looked different and wanted to know why. I began to tell them that I had an accident. I specifically did not want to use the word sick because I did not want to scare them. No child wants to associate the word sick with losing their hands and feet. They assumed it was a car accident, but I would tell them it was just an accident and my hands and feet had died. The doctors had to take them off and send them to heaven. But I was lucky that I was still here and that I got special robot parts. After that, they were completely satisfied and didn’t need to hear anything more. As they began to get older, they would ask “How did my arms and legs go to heaven?” And on the fly, I would simply say “They must’ve floated up on a cloud or maybe they got them some pretty balloons.” Again, a simple answer they accepted and they moved on. I always say that I grew up with these kids because I learned how to become the new me. They did a great job of accepting me and helping me learn how to answer all the questions I would be asked the rest of my life. With each new year came new questions and eventually I was able to tell them more details about what had happened.
So many people encouraged me to write a book about what happened, but there were so many facets that I never knew where to start. The original questions gave me the basis of a story. My mind was still so jumbled that I had a hard time creating a clear storyline. With help from friends and community, I was able to have a loose storyboard. One day, when my older two children were at school and my youngest was curled up on the couch next to me, within a matter of hours, I took the storyboard and wrote the story ‘Our Mommy Glows.’ It took me the next four years to get it finished. Between finding an illustrator, raising three children, and adapting to my new life, I had to admit it was very hard. I ended up with a very talented woman I found on Etsy. And then Covid happened and the world shut down and I lost communication with her. I homeschooled my kids during Covid and once we finished building our house all of them were back in school. I knew it was time to finish this book. After edits and small tweaks to my book it was done, and ‘Our Mommy Glows’ was published. The pictures in the book are all real-life experiences that I had with my children. I don’t think they feel it now, but when they are grown, I hope that they can look at it and feel special that they are part of a book. It is their story as much as my own. I have not had a lot of exposure, but I am proud that I have the story to carry with me through my life.
People ask me if I will write more and I’m not sure if I will write any more children’s books. I do know that once I have enough experience, I plan on writing an autobiography. There is so much I have learned about myself and the world of disability, I am a part of. I can’t wait to share more of my story with everybody, but for now, I’m going to enjoy the little moments with my family. If you haven’t received a copy, you can order yours on Amazon or here on my site.
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