Updated: Nov 30, 2021
Today we have an exciting interview with fellow Lupus patient Kelli Roseta.
Kelli is the founder of non-profit More than Lupus and she recently authored a children's booked which was inspired by her life and interactions with her young son.
Let's get to the interview!
1. What inspired you to write this book?
When my son was 5 years old and asked me, “Why do you need to rest, mommy?”
I said, “Because I have lupus and it makes me tired.”
Then he said, “Mommy, what is lupus?” That is when it all began.
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?
How do I present the right amount of information, but not overburden him?
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.
2. What is the book about?
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!
3. Who should purchase your book?
This book was written with love for anyone who lives with a chronic illness like lupus that wants to explain their illness to the little loved ones in their lives.
4. Where can people find and purchase your book?
You can order a copy of the My Special Butterfly book here.
All proceeds made from orders of "My Special Butterfly" benefit the lupus community.
5. How long have you had lupus? And what was your road to diagnosis like?
At eleven years old, with a family predisposition to rheumatic illnesses and a bleeding disorder as a child, I contracted Epstein Barr Virus.
By the age of 12, I had been hospitalized a half dozen times with what the doctors believed was juvenile rheumatoid arthritis.
I was wheelchair bound, and the disease was spreading. I was given every medication available to stop the avalanche of symptoms. Additional lab tests revealed that I had systemic lupus, and more medications followed.
Over the 29 years of living with lupus, I have suffered from multiple organ involvement, blood issues and muscular-skeletal complications, and have been hospitalized dozens of times.
Despite my health circumstances, I remain joyful because I know the pain is temporary.
If you want to see more from Kelli, you can follow her social accounts listed below.
What a great interview!
Thank you Kelli for sharing your story and road to diagnosis along with what inspired you to write the My Special Butterfly children's book.
We've already purchased our copy and have read it to our little one.
We were really excited to connect with Kelli and learn her children's book because we are also working on a children's book about invisible illnesses that are autoimmune diseases.
If you would like to learn more about our future children's book release named I'm The Biggest Helper, you can sign up for our Newsletter updates below.
Be sure to check back at our blog for more posts on parenting with a chronic illness.