Parenting a Child with FM



Parenting a child with any illness can be hard. Parenting a child with fibromyalgia can be hard on one’s heart as well. Our son is 13 and was diagnosed with FM six years ago. It has been an incredible six years: incredibly hard, incredibly blessed, incredible learning for each of us. I feel as though we have just recently arrived at a place where we have a family life, and Collin, a life he enjoys for himself.


It is, I think, the most difficult lesson I have had to learn so far as his mom: when Collin is in pain,not to have my normal instincts take over. When he just wants to stay in bed because he is too tired to get up, I cannot close his door and have him stay home from school. I did that in the beginning and learned he would always be home if I let him make that choice. Instead I need to stop my heart from thinking and have my ‘coaching’ brain take over. So very difficult to do! My natural maternal instinct is to console him. Moms are supposed to fix the hurts our children have, aren’t we? Well, FM is not something that I can "fix" for him. It is something that he has to learn to live with daily, and as his mom, I need to teach him to do that.


After his diagnosis, we floundered. We did not know what to do, what to expect, what the future would hold.  Collin was hardly in school in fourth and fifth grades. His body hurt way too much, and he was way too tired.


We were living so "in the moment" that I could not distance myself to see the bigger picture and what we could have, should have done differently.  I was in mom mode because my son hurt. I clung to my Bible verse for Collin, Jeremiah 29:11: "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."


I wish someone would have told me that you need practice tough love on a child with fibro (to a certain extent). If you do not, then they will not push themselves to be stronger and, to the best of their abilities, take life on.


Then Collin and I attended a Chronic Pain Program and it changed both of our lives. The staff worked with Collin, but they also worked with me. I learned how to nudge—even push him at times when he was very resistant to it.


I learned to look for the result we wanted for Collin down the road, not now in the painful present. Would I be content to see him in a wheelchair? Or did I want more for my smart, articulate, talented son? Yes, I wanted all that he could have! 


I have learned to slow down over all! I have learned to let go of the petty things and focus on the bigger picture for him at times. I have learned to take baby steps along the way to get to that bigger picture for him. I have learned to practice tough love, and not to allow his fibro to be an excuse for everything he wants to get out of doing, even if he is uncomfortable. Pushing him to try, not give up!


This summer Collin tried surfing lessons. Of course, we did happen to get the week when the New Zealand swell hit, causing 6-8 foot waves—yikes! Collin had three days of lessons a couple hours long each day.  It took him two weeks to recover. My heart was so full watching him paddle out the first day. Here was my son, who used to use a wheelchair at times because of his pain—paddling a surfboard! Wow! He has come so incredibly far! He has learned to balance, to decide if the activity he wants to do will be worth the pain and fatigue he will endure after. I have learned to balance as well, letting him make those choices, even if pain and fatigue are the consequences.


I have learned to let go a bit, as all moms must, to allow him to grow and mature into a responsible, caring adult. I know he will hurt; so does he. We have all learned to the best of our ability control his fibro, instead of his fibro controlling us!




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