I’ve been laying low – we’ve been laying low. We trudged on with school, and now are into the heat and boredom of summer with no major plans. Campbell has been fighting through some injuries, so hockey has taken a back burner to recovery. It’s hard watching your “typical child” miss out on what she’s defined as normal life. At the same time, watching your child with a rare disease miss out on normal life is routine – how terrible is that? So now I complain about watching my typical child do the same thing. Honestly, WTH. It’s a first world problem. They are thriving, I’m gonna be thankful.
I haven’t put my Rare Disease Mom hat on for a while, but I’m digging it out of the closet and looking at myself in the mirror as I place it on my head again.
Cooper asked to do “Cooper’s Troopers” again this summer. We haven’t done it since 2019. It’s a little backyard shindig where we celebrate with folks who lift us up during our rare disease journey. At the same time, we share the organizations who have made a difference in our lives, and we fundraise for them. But Cooper’s Troopers isn’t about the money. It’s about the community.
Our life has changed drastically in the seven years since we’ve hosted this:
- Cooper has had four surgeries since then – three of them absolutely brutal (bringing him to a total of nine surgeries)
- Campbell is now a AAA ice hockey player (as opposed to dabbling in soccer and not even knowing how to ice skate)
- We now have two teenage high schoolers (as opposed to two elementary school kids)
- We lost one canine, and added two (achieving life goals, one dog at a time)
If you’re new to the Tippetts since COVID and would like a Cliff’s Notes version of our rare disease journey, check out the 2025 MPS Masterclass presentation Cooper and I did for the Muenzer MPS Center at UNC at Chapel Hill. It took me DAYS to compile the presentation. I couldn’t remember all the details, so I reviewed our entire Caring Bridge page (hundreds of journal entries). Reliving diagnosis and everything we’ve been through put me in a bad funk for a while. Living the rare disease life is hard. Looking back, it’s no wonder I jumped head first into hockey mom life.
But here I am putting on an old hat, hiking a trail I’m familiar with. This needs to be done. Both of my kids need to be seen and celebrated for who they are. So we’ll attempt Cooper’s Troopers – both in the backyard and in daily life, all while embracing Campbell and where she is in her own journey.
Rare Mom Life 