{"id":31,"date":"2019-12-05T00:00:00","date_gmt":"2019-12-05T00:00:00","guid":{"rendered":"https:\/\/cota1.wpengine.com\/cotaforarabella\/2019\/12\/05\/the-spirit-is-willing-but-the-flesh-is-weak\/"},"modified":"2019-12-05T00:00:00","modified_gmt":"2019-12-05T00:00:00","slug":"the-spirit-is-willing-but-the-flesh-is-weak","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforarabella\/2019\/12\/05\/the-spirit-is-willing-but-the-flesh-is-weak\/","title":{"rendered":"The Spirit is Willing, but the Flesh is Weak"},"content":{"rendered":"

It has been 7 months since the last blog.  <\/span>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.<\/p>\n

Arabella completed chemo infusions in late July.  <\/span>In August, she excitedly returned to a local all-girls high school where she joined the Dance Team and an IM volleyball team.  <\/span>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.  <\/span>Unfortunately, they began immediately.  <\/span>She was hit with the onslaught of germs from classmates almost instantly and was hospitalized early in the year.  <\/span>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.  <\/span><\/p>\n

Arabella chose to start the year not sharing her transplant and lymphoma journey with her classmates.  <\/span>She faced ugly comments at her last school shortly after diagnosis of her kidney disease and didn’t want to deal with that again.  <\/span>After a while, she did share with a few select people and, unfortunately, has felt betrayed by that experience.  <\/span>It’s much harder to make real, solid friends in our digital age–as parents, we need to be aware.  <\/span>Our own posts are proof that digital life isn’t a true picture of “real life”  <\/span>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.”  <\/span>If we’ve learned nothing throughout this journey, it’s that images are deceiving.  <\/span><\/p>\n

Not to say that all things are terrible–for instance, we enjoyed an amazing road trip to Oregon this summer between chemo infusions.  <\/span>She has met a new friend through school who makes her laugh and enjoys similar interests.  <\/span>Her lymphoma numbers look good.  <\/span>While her team prepared us for her disease to return immediately post-transplant, it didn’t.  <\/span>She’s getting ready to hit the one year mark of not being hooked up to a machine nightly to live.  <\/span>Those are all blessings and we’re so thankful.  <\/span>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.  <\/span><\/p>\n

I’ve written to her school this morning to advise that we are resuming homeschool.  <\/span>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.  <\/span>She’s tired all the time.  <\/span>Her heart and mind want to do so many things, but her body betrays her.  <\/span>She puts on a smile, but takes it off in the hours at home.  <\/span>She needs to operate on a second-shift schedule in a first-shift world.  <\/span><\/p>\n

It’s impossible to understand this life without living it.  <\/span>There are assumptions that all will be better following a transplant, but that’s a fallacy.  <\/span>Transplant is not a cure, but a different treatment modality.  <\/span>She will always be different from her peers.  <\/span>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.  <\/span>When she thinks about colleges, she thinks about how quickly she could get back to Cincinnati in an emergency.  <\/span>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.  <\/span>Her world, and ours, just look different now.<\/p>\n

Our hope, with this update, is not for sympathy or for suggestions on things we might not have tried to help Arabella feel better.  <\/span>Instead, the hope is for extra kindness.  <\/span>Be kind to yourself.  <\/span>Extend grace to your neighbors.  <\/span>Don’t judge the stranger who looks different from you.  <\/span>For that matter, don’t judge the person who looks the same as you.  <\/span>We are all fighting a battle that others cannot see.  <\/span>Whether that battle is physical, spiritual or emotional, it takes so much to fight every single day.  <\/span>The spirit is willing, but the flesh is weak.  <\/span>Be kind.  <\/span>Be the person who lifts another’s arms up when he\/she is too tired to hold them up alone.  <\/span>Stop to realize that things are not always what they seem. And always celebrate each small victory.<\/p>\n

Have a happy holiday season as we race toward the New Year.  <\/span>May 2020 give us a clear vision of ways to make our world a better place, in acts both large and small.  <\/span>Thanks for following Arabella’s journey.<\/p>\n

\"\"<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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 […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-31","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforarabella\/wp-json\/wp\/v2\/posts\/31","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforarabella\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforarabella\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforarabella\/wp-json\/wp\/v2\/comments?post=31"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforarabella\/wp-json\/wp\/v2\/posts\/31\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforarabella\/wp-json\/wp\/v2\/media?parent=31"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}