#Sprinkles-on-my-sh*t-sandwich

 “What’s with all the white outfits, ladies?” Ferris asked. “Forty-six of us are gathered in Fort Lauderdale to celebrate our virginity.” Stephenie R.H. explained matter-a-factly.  ~Photo by Mary Rowden~ Ferris didn’t fall for it. (Gasp!)  So a group of us gals decided to tell him the truth.   “We are having an International Mom’s Retreat.  We each have a child with F.O.P.”  “F.O. what??” he asked. Fibrodysplasia Ossificans Progresseva – an extremely rare condition where muscles and connective tissues turn to bone, and there is no cure (yet).  The condition presents early in life with large unexplained hardened swellings on the back and neck, and crooked big toes.” Loooong pause. Then Ferris responded: “Well ladies….THAT is a shit sandwich.” Bingo.  Thank you, Ferris. As moms, we could not have described F.O.P. better. Lucky for me, AND my 45 new besties, our retreat was sponsored by an extremely generous foundation named The Radiant Hope Foundation.  Let me repeat.  Extremely generous Foundation.  (Fact. No research monies or donations to The International F.O.P. Association were used to fund this retreat.) For three days we retreated.  We enjoyed freedom and permission to:

  • Listen to mom’s individual F.O.P. story.
  • Reflect on the challenges and successes of our F.O.P. experience. 
  • Hand each other tissues.
  • Be rejuvenated through 12 workshops on supportive topics. 
  • Have spontaneous dance parties.
  • Buy each other drinks.
  • Voice words of encouragement to new girlfriends.
  • Spend time with the amazing Jeannie Peeper, founder of the International F.O.P. Association.

~The Retreat Planning Team poses with Jeannie Peeper and Knightly~

  • Receive updates on our ongoing successful clinical trials.
  • Laugh. Hug. Laugh. Hug….and repeat as necessary.  
  • Retreat to our ocean front rooms to process, sleep, or cry.
  • Nod our heads in solidarity of purpose.
  • Oh, and buy drinks for each other.

 ~Photo by Mary Rowden~ ~Photo by Mary Rowden~~ Photo by Mary Rowden~ ~Photo by Mary Rowden~ We Forty-six have found our Tribe.  These women “get” me.  They are the Sprinkles on the shit sandwich of my son’s F.O.P. Yes, my 36 year-old son, Patrick, has this rare condition.  It breaks my heart to watch him suffer in pain.  I want a cure for him.  Pat was thrilled to know that this retreat opportunity was available, and encouraged me to attend. I’m glad I didn’t chicken out.   We are united for our children’s eventual cure. I can reach out to the “Sprinkles” when my resilience falters to the realities of F.O.P. in Patrick’s life. . Here are some Sprinkle comments about the retreat: Connie:Transformative gathering of the most amazing women I will ever know! My love & support of each of you is boundless. Gratitude to our planning committee whose vision, dedication & hard work created this Retreat for us.” Stephanie:“I don’t have words to describe this retreat and how I’m feeling. I was given the gift of knowledge, hope, Love, thoughtful advice, and friendship that feels like it’s always been there. One thing is for sure, I’ve never been in the presence of so much determination. You are all the most wonderful mothers I have ever met. Like fighting Lions for your children. To say I’m inspired to keep fighting, raising awareness, funds, and helping the IFOPA is an understatement. You all have changed my life. I can’t ever repay Amanda and the planning committee. My gratitude is endless. Thank you. ????❤️”

Shannon:
“Hello beautiful friends! I have to say a huge THANK YOU to each and every one of you for making my heart lighter and my hope brighter. I could not walk this road without you! This weekend has truly been a game changer.
I can’t put into words what I have experienced these last 3 days. I’m armed ( literally) with knowledge and more hope then ever. I have met 40 amazing women that know exactly how I feel. I have laughed and cried with them. They are now my tribe. The ones that get me. The moms that came together to make this retreat happen I am forever grateful for. The friendships I have made are invaluable. I will never forget this experience. I’m coming home with power and knowledge to fight for my son. To fight to keep him moving. #curefop #hopewins.”  Tiffanie:“I’m on the way to the airport, and my heart is full with love for my new mom tribe, my head is swimming with your wisdom and new ideas, and my spirit is soaring with strength and hope. ????

I truly love each of you for your unique contribution. THANK YOU to the planning team for pulling off a fantastic retreat! The weekend has been a gift I didn’t know how much I needed.”???? _____________________________________________________________ Please check out more information about F.O.P. on the IFOPA.ORG website Crooked toes…the telltale sign is crooked toes.  Spread the word, please! ________________________________________________________ And now, thanks to Ferris’ succinct definition, we may have an F.O.P. Mom’s Retreat T-shirt logo: #fopmomsarethesprinklesonmyshitsandwich    By the way, if you meet a guy named Ferris, tell him we’ll send him a t-shirt with our new logo!       

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