The children of people with invisible illness suffer quietly. As soon as my son, now 4, 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 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 sometimes, I desperately want to get down on the floor and play, 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 much energy. Once, after putting him to bed, I left his room and immediately laid down in the hallway and cried; 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 illness, 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 decided to write 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 feel less alone in the world, and give them hope. Thus began the saga of “Why Does Mommy Hurt?” Many people ask me how I managed to find the energy and time to write a book, while also living with chronic illness and raising a young son. The answer is… I’m not totally sure! I did have a big help in my TMS (Transcranial Magnetic Stimulation) treatment. Since developing my illness, I have suffered from depression off and on, and tried a myriad of traditional treatments for it, none of which helped much. A doctor finally recommended TMS, and the effect was fast and dramatic. For the first time in literally years, I felt like I could do anything; that I could contribute to the world, and my voice mattered. Two weeks after beginning TMS treatment, I finally begin preparations to publish the book, and I haven’t stopped working on it since! I also had help from my family and friends, especially my father, James G. Miller, who illustrated the book. His beautiful illustrations brought life to the book in ways that I never could’ve imagined.
“Why Does Mommy Hurt? Helping Children Cope with Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease” has been a best-seller for several months, and is available on Amazon.com and parentswithpain.com, in both paperback and eBook formats. It is a joyful, yet honest, portrayal of family life burdened with chronic illness, told from the point of view of a young boy learning to understand and cope with his mother’s Fibromyalgia and chronic pain. The story is told in a way that creates natural opportunities for the family to talk about both the symptoms of chronic illness (such as pain, frustration, fatigue, and memory problems) and how they affect family life. Even more importantly, this story puts power into the hands of the children in these families by validating and giving a voice to their feelings, explaining chronic pain in a way they can understand, providing a model for thinking and acting positively, and showing them how they could help a loved one afflicted by chronic pain. This book is appropriate for the families of young children who have a parent or caregiver experiencing any of a wide-variety of illnesses associated with chronic pain or fatigue, such as: Lupus, Lyme Disease, CFS, Depression, Fibromyalgia, Arthritis, Autoimmune Disease, Multiple Sclerosis and many others. It also includes a helpful “tips & resources” section for parents, which provides information and urls to support parents.
Want to learn more? See WhyDoesMommyHurt.com
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Childrens book on #chronicillness and #chronicpain, “Why Does Mommy Hurt?” http://wp.me/p4Cz8M-66 @parentswithpain