We’re in this magical wonderland where Cee is feeling well. She has her shots and her infusions and her blood draws and her doctor appointments– but she takes it all in stride. Even with over half her life spent fighting, she’s still able to be happy.
Cee is a superhero in every sense of the word.
This weekend she was at the hospital for an MRI. It’s been about a year since her last one, so she was due. No problem. No worries. She did just fine. We can’t remember if this is her..5th? 6th? 7th? MRI. We’ve lost count.
Look at her, curled up in what would have been an impossible position for much of the past five years, reading up a storm. We have no idea why it’s possible now. It is inexplicable. The flip side of having no explanation, though, is that we have no idea when the pain will return.
Cee is just fine.
We are not.
We are not just fine.
When I think about PTSD I think about veterans who dealt with combat. We don’t wear fatigues, but David and I certainly *are* fatigued. And maybe we’re dealing with a little PTSD.
Cee is just fine. But it’s only a matter of time until she is not fine. And spending life waiting for the other shoe to drop is exhausting.
Every time David gets out the Methotrexate to give Cee her shot. Every time we take her to the hospital for her infusion. It’s like we’re thrown over a cliff and have to pull ourselves back up to our baseline level of okay-ness. All that fear and worry and doubt and anxiety are triggered.
I was looking through old posts and came across “December Cee,“.
Reading those words, I was right back there, kneeling in front of the couch holding a strawberry, begging Cee to take a bite. Just one bite. Cee staring off into space because the pain was so intense. Four years old. Unable to play. Unable to talk. Unable to eat.
We got the MRI results. Cee’s right hip degeneration continues. Her left hip has stayed the same, but that’s because it didn’t really have anywhere to go. Disappeared cartilage can’t get more disappeared.
I suppose that’s good news. There wasn’t any mention of “necrosis” in the radiologist’s report, which is a relief. We hope that the disease is satisfied after consuming all her cartilage and leaves her bone alone.
We try to be happy. To choose joy. But all it takes is seeing that vial of bright yellow medicine every week to throw us over the cliff again. We plunge down the canyon of what ifs. We are reminded about how serious this battle is. We pray we are making the right decisions.
This journey is really hard. Some days we’re okay. Some days we’re not.
The truth is, we’re not able to handle the weight of this diagnosis on our own. The truth is, we’re only as strong as our support system.
Our support system is a pretty diverse bunch, growing and shrinking and shifting as time has passed. We’re always accepting new members.
The homeschool mom that arranged all the fieldtrips for us this semester.
The brave souls who helped us move.
The new neighbors who have made us feel welcome (and looked the other way at our lackluster attempt at mowing).
The moms who have gifted us surplus breastmilk.
The family and friends who blessed us with eggs, apples, or fish.
Our parents who watched our kids when we needed a break.
The families who facilitated our trick-or-fruiting.
Everyone who brought us meals after Mateo was born.
Those who sent money to help cover our increasing medical bills.
The friend who sent new books, just because.
All who gave us some grace when we were late, forgot something, or otherwise dropped the ball.
The people, strangers and loved ones alike, who have prayed and prayed and prayed for us.
For all these people, we are grateful. Thank you to everyone who has helped us. We couldn’t do it without you.
We don’t know what tomorrow will bring. And sometimes that makes today scary. Thank you for reaching out. For holding our hands. For doing something for us, even when we didn’t ask for it. Especially when we didn’t ask for it. Thank you. <3