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. That I desperately want to get down on the floor and play blocks, but I literally CAN’T.
The guilt of raising a child under these circumstances is overwhelming. I often force myself to smile, play, and be strong for him. To walk him a mile and a half to the playground and back, only to lock myself in my room in tears of exhaustion upon arriving back home. To play catch, legos, playdoh, color… all of the joys of childhood, joys that take so so many “spoons.” After putting him to bed, I often leave his room and immediately lay down in the hallway and cry; exhausted and overwrought with guilt.
“I’m not doing enough. I can’t do enough. I will never be good enough for him.”
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?”
Inspired by my son, and spurred on by the strength I have received from years of living with chronic pain, and supported by the National Fibromyalgia and Chronic Pain Association, I was able to write and self-publish one of the first-ever children’s books on chronic pain and illness. It is already in publication, and soon will be available all over the world! Information about the book is on WhyDoesMommyHurt.com.
If we have to suffer; we shouldn’t have to take our children with us. My goal is for my book to help millions of frustrated, confused, and sad children cope with their parents chronic illness. Living with my disease has made me realize that I am stronger and more capable than I ever thought possible; dreams do come true; especially the dreams of those who truly know their value; those of us with invisible illness.
(Photo credit: Beckyagardner.com)