Giving my babies that last nighttime kiss and snuggle every night is one of the best parts of my day. When my daughter, Arlie, was old enough to talk she would say, “Scratch my back under.”
What she meant, was scratch my back on my skin.
Connect with me for a few minutes.
It soothed her and relaxed her and has since become a nighttime ritual. She is 12 now, but “Scratch my back under” is still part of our nighttime ritual.
We joke about it at our house, but it is definitely one of our family’s things.
Zip is now 9, and he has learned from his big sister. He also asks for snuggles and “Scratch my back under.”
These simple moments are the ones when we chat about our hopes and dreams, what our days were like, and anything else either of us want to talk about, all the while having our connection.
As most of you know, our life was thrown a curveball in the summer of 2011. Zip was diagnosed with Fibrodsypasia Ossificans Progressiva. FOP causes muscles, joints, and connective tissue to turn to bone. Over time, it will create a second skeleton of the body’s choosing.
In Zip’s initial flare-up, or “bone-building session”, his spine was fused, his shoulders were ‘pinned’ and his left arm was locked in a cocked position. He had another year and a half of flares on his back that left a mountain range of bone.
We have been incredibly fortunate that the FOP has held itself in this stage with Zip. Even minor falls can trigger flares and cause more bone growth. We have had no flares or symptoms of late, but they are always lurking.
Every night. Scratch my back under.
I lie in his bed and rub my hand over the mountain range of bone on his back that is this crazy FOP monster. We talk about his hopes and dreams and I try my darndest to believe they will all come true, that researchers will find a way to manage the condition.
I then move to Arlie’s room and repeat the process with her. This girl, you guys. She’s amazing. She keeps me strong.
With only about 800 cases worldwide with FOP, the condition is 1 in 2 million. Families of those affected are fundraisers for research for an effective treatment of the condition. Our family’s answer to that is ZipperQ.
ZipperQ will be held October 1st at the Claremore Expo West Bend Green from 3p – 7p. Entry to the event is FREE and about 25 BBQ teams will compete and you can taste all of them or just one for $10. Pop, water, music, and kids games are free so you can spend your money on a Jeep raffle (tickets 1 for $25 or 5 for $100) or the many silent and live auction items.
My nightly routine will stay the same. I will continue to ‘scratch my back under’ and my hopes and dreams are that my little guy’s hope and dreams can come true, too.
If you would like to donate an auction item or be a sponsor for ZipperQ, please send me an email at firstname.lastname@example.org.