Summer is a rollercoaster for us. Extreme highs and lows. This month we embarked on an exhilarating (albeit exhausting) three-week road trip, including Cooper playing six different sports (football, pickleball, soccer, badminton, volleyball, and swimming) at the Dwarf Athletic Games, followed by family time on Orcas Island. Yet tomorrow (Tuesday), Cooper has another surgery. I think it’s his 9th? He’s 12 years old, and I’ve lost count of the number of times we’ve done this.
Tomorrow they’ll remove the “eight plates” in Cooper’s right knee. Should be simple. But nothing is simple when you live life with a condition that puts you in the high-risk anesthesia category.
Looking through photos from this week in past years snaps me out of the fun summertime vibe and into living with a rare disease reality:
(Cooper was immobilized and in the cast for 7 weeks)
All of the above photos reflect the sucky parts of our summers. But after tomorrow’s surgery, Cooper looks forward to seeing the Savanah Bananas play in Denver and the following weekend, attending the 5th annual Rooting for Robert fundraiser! Cooper is counting the days until he sees Robert and his other friends with Morquio. He gets to play with kids who endure the same surgeries, same infusions, and similar frustrations in life. These relationships give Cooper friends on his journey who know what it’s like to have a weekly infusion, to be the smallest kid in class, to have anxiety before surgeries and painful recoveries.
So tonight I pray that tomorrow’s procedure is simple, it goes well, and we can quickly move on to the fun parts waiting on the other side.
Rare Mom Life 