Saturday, March 8, 2014

Turning Suffering and Pain into Joy and Hope; for Children.

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 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 once 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 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 Final Cover!

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.  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.  
A potion of the proceeds will benefit NFMCPA

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.  Dreams do come true; especially the dreams of those who truly know their value; those of us with invisible illness.

The PFM 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 by entering your email in the "follow by email box" on the top left, on Facebook, 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 and Kickstarter campaign.  

If we have to suffer; lets not bring our children with us! 

Want to tweet this? Just copy and paste!
New childrens book on #chronicpain and #chronicillness! "Why Does Mommy Hurt?" @parentswithpain


  1. You're a great mommy and so wonderful with Jimmy!! It's amazing that you creates a book for him and others!! Truly inspirational!!

    1. Thank you Jessica; you have been an inspiration to me as well! I think I realized why no one else has done this though... its EXHAUSTING!!

  2. You go, Mommy. Congratulations.

  3. I have to explain this very thing to my 2.5 year old and he doesn't understand when I can't get on the floor to play. I try to figure out ways to make it more comfy for me so that I can still do a few of the things he wants to do. I always tell him "mommy doesn't feel good".

    1. I'm so glad that its reaching people like you :) I will be sure to contact you when the book is available :) My son is now 3.5, but its still hard.

  4. I Tell My 7 & 9 Yr Olds That I'm Just So Tired All The Time & Have To Lay Down. It Breaks My Heart When They Say "We Know, You're ALWAYS too Tired!" This Book Will Help So Much!

  5. I'm so glad! Do you want me to add you to the 'preorder' list? send an email to thepotomacfallsmama (at)


  6. I'm sitting at my desk at work and this comment:

    [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."]

    just brought out the tears that I've been holding back for a very long time because this sums up my feelings about my own parenting and having fibro (my son is 7, I was diagnosed almost 5 years ago). I'm moving from my family doctor to a new rheumatologist on Tuesday because things are progressively getting worse and my son is the one who is being shorted by my illness - we miss activities, extracurriculars, special events, even just inviting friends to spend the night because I hurt and I'm too tired after working all day, too. Every so often, I get the dreaded "You're ALWAYS tired!" retort, and all I can say is "I know. I'm sorry. If I could make things different, I would."

    While I hate the rest of the junk that comes with fibro, I can handle the things that affect me - I can deal with losing friends, feeling guilty because my husband does most of the housework and cooking, having to cancel plans for dinner or drinks at the last minute, not be able to go to parties or church or special events - but the part that hurts the most is disappointing my own child.

    It's about time someone wrote a book like this - THANK YOU. I will be at the ready to purchase it as soon as it's released and if you're still taking Kickstarter donations, I'll be making one tomorrow - because our kids need help, too. We have books that help explain the loss of a pet, moving, getting a new baby brother or sister, cancer, everything under the sun - but nothing that helps them understand why we're tired or always hurting and it's hard enough to get dinner for them, much less go to the park and play catch. We need this. Thank you.

  7. Amanda, Thank you so much for your heartfelt response! I'm so glad the book is reaching people like you, that is my goal! Yes I'm still taking Kickstarter, but your comment was enough for me ; )
    Send an email to with 'preorder' in the subject line, and i'll send you a free eBook with purchase, when it comes out! The book will retail for $9.95. Thanks so much for commenting!

  8. I am a Grandma and will buy your book for my Grandson. I'll tell him to pretend the title is :Why Does Oma Hurt.? I sit for him for short periods and only got down on the floor a few times. I paid the price for days. Thank you so much !

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  10. Great post! Thanks you so much for the share. Keep up the Excellent work, we look forward to reading more from you in the future!
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