Luca: “Why do you need to rest, mommy?”
Me: “Because I have lupus, and it makes me tired.”
Luca: “Mommy, what is lupus?”
So it began.
I had wondered when the day would come that the statement, “I have lupus” would slip from my lips. Though I was inclined to think he knew something was up, like most observant children do, I was now officially charged with the responsibility of searching for the right words to tell my 5 year old son about a disease that I’ve lived with most of my life.
A disease that crippled me for many years, and almost derailed my journey to motherhood. A disease that though mostly invisible on the outside, ravished my insides. A disease that indeed was part of mommy’s life, and since it was a part of mommy's life, it would be a part of his life too.
What is lupus? This process of explaining lupus to my little one quickly began to feel overwhelming. How do I explain lupus in a way that is not scary, but truthful, age-appropriate, and honoring of his intelligence? I took some deep breaths. How do I present the right amount of information, but not overburden him? I took some deeper breaths. Then, instead of taking more breaths, I took to the web to search for the perfect book to read to my son about lupus.
I started to feel discouraged. Not due to a lack of trying, but because there was no such book to be found. There was no book out there to help children understand a loved one’s life with lupus.
With being a blogger, and with starting my own lupus nonprofit, my logical response was, “If this is a need for me, I am sure it is a need for many other people out there.” I thought of the Aunties and Uncles trying to explain lupus to their little loved ones. I thought of Godparents and Mommy’s and Daddy’s trying to be open and authentic about the peaks and valleys of their lupus journey... together as a family. So if there was a need, how do I fill it? I guess, if there was no book, I would have to write one myself.
And that’s just what I did.
“My Special Butterfly” was written as a book to help children understand a loved one’s life with lupus in a way that is easy for them to follow and sensitive to their feelings. It tells the story of two young siblings, Olivia and Jack, and their thought process as they cope with their mommy’s sudden lupus symptoms.
Written in a way that children will connect with, it breaks down some of the most commonly asked questions about the disease, while focusing on the parent/child connection.
“My Special Butterfly” also includes a parent guide, example responses to commonly asked questions, additional resources, and more!
My hope is that this small book is a small step in establishing healthy communication between you and your little loved ones about your lupus journey.
All proceeds made from orders of "My Special Butterfly" benefit the lupus community.
You can order your copy here:
Kelli is a lupus advocate, award-winning blogger, and community liaison. She is also a 29 year lupus survivor. After working with various lupus nonprofits for several years, she created More Than Lupus as a place where those who were just diagnosed, or those who have been living with lupus for decades - can connect, grow, and inspire others through the peaks and valleys of their lupus journey. Kelli lives in Portland with her husband Nick, son Luca, and dog Jax.