Turning Pain into Joy and Hope, for Children
Note from Lizzy: This is a guest post from Elizabeth Christy (Potomac Falls Mama). Whilst many of you reading this, like myself, won’t be parents yet, I’m sure this is an issue that’s crossed your mind about for future.
The children of people with invisible illness suffer quietly. As soon as my son, now 3.5, began to communicate, I tried to explain, in words that he could understand, why mommy was unable to play as much as he wanted me to, why I couldn’t stay awake longer than a few hours, and why I grimaced and cried from pain so frequently. How can one explain to a young child, when this is his “normal,” that I wish things could be different for him? That he has done nothing wrong when I am crying. Such complex and mature concepts are difficult for children to understand; so he often left conversations feeling sad and confused.
The guilt of raising a child under these circumstances is overwhelming. Playing catch, legos, playdoh, color… all of the joys of childhood, joys that I crave and I want to give him, also take so so many “spoons”. After putting him to bed, I often left his room in tears, and immediately laid down in the hallway; exhausted and overwrought with guilt. “I’m not doing enough. I can’t do enough. I will never be good enough for him.” I decided that we BOTH deserved better. I have learned that anything that I put my mind to, and I decided to turn my chronic illness into an opportunity; an opportunity to grow the relationship between my son and I, and also to achieve my dreams!
In order to help my son cope and understand my disease, I searched the far reaches of the internet for a childrens book on Fibromyalgia, chronic pain, or even just having a sick parent in general. I found absolutely nothing. Shocked and appalled at the void, I chose the obvious solution; I wrote my own. At first, the plan was just to write this new book solely for my son. However, I could not stop thinking of the millions of other children in the same situation, and the other parents, as desperate as I was. I knew something had to be done to help those families. Thus began the saga of “Why Does Mommy Hurt?”
The words came easily to me; I finished the text in a few days, but the illustrations… they haunted me. I. Cannot. Draw. I came up with a few pathetic sketches of stick figures, then moved on to the animal kingdom; bunnies, bears, and even turtles. In a last ditch attempt, I even tried to illustrate the book with “cute” monsters. They were not cute. They would’ve haunted any reasonable childs dreams. My illustrations were left crumpled in a pile on my desk, under a damp layer of “FAIL” tears. Then I remembered my father. I had seen his sketch book as a child and marveled at the detail of his work, and his obvious natural ability to draw. I was overcome with love and joy when he literally jumped at the chance to help me. He began working on the book immediately, and created beautiful digital illustrations for my book; inspired by the actual features of my son and I. The book was coming to life!
At that point, I decided that I WAS going to do this, there was no turning back. One thing I’ve learned in my years with invisible illness is this: goals are my life-energy. They feed my hunger to stay alive; a hunger that often fades when faced with a never-ending stream of suffering. I have also learned that I can achieve anything I want to, as long as I don’t give up. My invisible illness has done something I would’ve never anticipated; it has made me stronger than I ever thought possible. I can now tolerate extraordinary levels of stress, pain, and suffering, suffering that would have left me in the fetal position as a “healthy” person. #
Last year, I managed to arrange a lunch meeting with Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association,showed her the book, and pledged to donate a portion of the proceeds to the organization. Jan is an amazing woman; who also happens to suffer from FM. She loved the book, and has supported me ever since. “Your book will help millions!” she said.
Emboldened by her words, I began a networking and promotion plan which continues to this day. Just last month, we learned the wonderful news, PUBLICATION! “Why Does Mommy Hurt?” will be available on Amazon and Barnes and Noble as early as Summer, 2014. I am also in the middle of myKickstarter campaign to cover the costs of self-publishing. Dreams do come true; especially the dreams of those who truly know their value; those of us with invisible illness.
Elizabeth Christy is a blogger living in Potomac Falls, VA, and is devoted to creating a world-wide community of parents living with chronic pain, fibromyalgia, lupus, and other autoimmune disorders. Follow her blog, Potomacfallsmama.blogspot.com, onFacebook, or Twitter.
*I am also pleased to report that there will soon be another childrens book available on chronic pain; “Foggy Frog and the Pain Gang”, written by my friend in Australia, Megan S! Here is a link to her blog
If we have to suffer; let’s not bring our children with us!