It has been 7 months since the last blog. Although many updates have been by the ones or by assumptions based on the “perfect” images of Facebook, as we approach Arabella’s one year kidneyversary, a new update is warranted.
Arabella completed chemo infusions in late July. In August, she excitedly returned to a local all-girls high school where she joined the Dance Team and an IM volleyball team. While we were prepared for the transition back to “regular” life to be difficult, we expected those difficulties to start in the winter–during flu season. Unfortunately, they began immediately. She was hit with the onslaught of germs from classmates almost instantly and was hospitalized early in the year. Soon after, she sustained a knee injury in dance that ended her involvement in both dance and volleyball. She is still in a brace months later.
Arabella chose to start the year not sharing her transplant and lymphoma journey with her classmates. She faced ugly comments at her last school shortly after diagnosis of her kidney disease and didn’t want to deal with that again. After a while, she did share with a few select people and, unfortunately, has felt betrayed by that experience. It’s much harder to make real, solid friends in our digital age–as parents, we need to be aware. Our own posts are proof that digital life isn’t a true picture of “real life” and every time we get a reply to a smiling Facebook picture that comments on how well she is doing, I quietly think to myself, “If only.” If we’ve learned nothing throughout this journey, it’s that images are deceiving.
Not to say that all things are terrible–for instance, we enjoyed an amazing road trip to Oregon this summer between chemo infusions. She has met a new friend through school who makes her laugh and enjoys similar interests. Her lymphoma numbers look good. While her team prepared us for her disease to return immediately post-transplant, it didn’t. She’s getting ready to hit the one year mark of not being hooked up to a machine nightly to live. Those are all blessings and we’re so thankful. But we are still trying to come to terms with saying good bye to a life we assumed, which has turned into one we’ll never have.
I’ve written to her school this morning to advise that we are resuming homeschool. At best, she was making it to a class a day. She struggles with insomnia and constant pain, which makes sitting through 7 hours in a traditional classroom impossible. She’s tired all the time. Her heart and mind want to do so many things, but her body betrays her. She puts on a smile, but takes it off in the hours at home. She needs to operate on a second-shift schedule in a first-shift world.
It’s impossible to understand this life without living it. There are assumptions that all will be better following a transplant, but that’s a fallacy. Transplant is not a cure, but a different treatment modality. She will always be different from her peers. She tries to be the same–like the recent dress shopping for a dance that she’ll now not attend–but at the end of the day, her concerns are different than the average 14 year old teen. When she thinks about colleges, she thinks about how quickly she could get back to Cincinnati in an emergency. When she starts on her own, she will need to consider living close to excellent treatment facilities and getting a job that affords good health insurance. Her world, and ours, just look different now.
Our hope, with this update, is not for sympathy or for suggestions on things we might not have tried to help Arabella feel better. Instead, the hope is for extra kindness. Be kind to yourself. Extend grace to your neighbors. Don’t judge the stranger who looks different from you. For that matter, don’t judge the person who looks the same as you. We are all fighting a battle that others cannot see. Whether that battle is physical, spiritual or emotional, it takes so much to fight every single day. The spirit is willing, but the flesh is weak. Be kind. Be the person who lifts another’s arms up when he/she is too tired to hold them up alone. Stop to realize that things are not always what they seem. And always celebrate each small victory.
Have a happy holiday season as we race toward the New Year. May 2020 give us a clear vision of ways to make our world a better place, in acts both large and small. Thanks for following Arabella’s journey.
