This is a replica of a photo taken 4 years ago. Oh how we love these faces and the lives that they represent.
Julia's favorite part of Monster Jam was that one of the ATV drives was a girl, and that our earplugs were pink!
Anna is glad to have checked Monster Jam off her bucket list early in her life.
Simon took Jonah to Monster Jam before he was diagnosed and he loved it! As soon as possible, we all took Jonah back to Monster Jam. Apparently some things are better in memory, and Jonah fell asleep for the last few elements of the show. Noah, in the meantime, has a new career aspiration - so there's that.
Puppy power after a bath.
I sit here today, in a nation that is up in arms about our latest election. People are hurt, people are scared, people are vindicated, people are looking to love and bridge building, to mending, to listening, to hoping and believing. These are unique times that we live in for sure.
The heaviness of the emotions of today, the culmination of the emotions of the last year, weigh on my already tender heart. I find myself wishing that my concern for my family's future was more tied up in the political system. Weird huh? Isn't that what these election results showed us? People want less politics.
So what do I want? I want to turn in our cancer family card. We are enjoying such a sweet season as a family. Jonah is doing so well right now. He is back in school, making new friends, adjusting to the norms of taking turns again, having structured activities again, the act of intentional learning. He is getting stronger in therapy every week. His balance is slowly improving, his word recall is coming more quickly, his pencil grip is normalizing. He is navigating his new role in the family - working through how to relate to each of his sibling, and making sweet memories as they just play. I just want to sit in this season forever, working through our challenges, confident that these are the only things to worry about. I want to know and believe that cancer is in his past. I want his medical team to officially transition to friend-only status instead of needing to keep some objectivity "just in case". I want to worry about the fact that learning letters seems hard for Jonah. I want to plan summer vacations with the same confidence of the future I had before diagnosis. I want to worry about what who our political leaders are means for our future.
Turning in our cancer family card is as much about what I want, as what I don't want. I don't want to have to watch the stories of other families we've come to know and love play out. I don't want to watch an adorable 2 year old girl go back into treatment after relapse, starring down the barrel of radiation as her only choice after another surgery. I don't want to watch as a big-hearted light of an 8 year old and her family hang their very last hope on a risky stem cell transplant, knowing that if the transplant doesn't kill her, but doesn't work, they have no other options. I don't want to watch or be one of the countless families anxious over headaches, stomachaches - worried that they're something more nefarious, worried that they're missing something. I don't want to watch friends mourn their children lost 7 months ago or 7 years ago. I don't want our lives to forever be divided "before diagnosis/after diagnosis". I don't want to, for even a second, believe that someone else's clean MRI is bad news for us - that the cancer community can only produce a certain amount of good.
The thing is, we don't always get what we want. Today especially, you don't have to look far to see disappointment and discouragement. For me, there is no department that I can submit our cancer family card - no will take it, this is who we are, and so it doesn't matter all the things I want and don't want - this is life.
And today, I find myself struggling through that truth - searching for the "so what". At the core of my being, I believe God is good, that he can work good into and out of our story. I believe that God mourns for our world for many reasons - so much of what we experience isn't how it was meant to be. How do I find the point in the pain, how do I find the "so what" in the realization that once a card carrying cancer family, always a card carrying cancer family? Is this about learning to trust God more, to celebrate the gift of today better? Is this about remembering that love, above all else, is what matters? Is it a reminder that people don't always understand the purposes of Heaven, or a chance to see the sovereignty of God? Have people paused to look at God more closely through our journey? Have I?
I don't know these answers. I want end this post with a pretty bow - saying that I've figured out the point of pediatric cancer in our story, or anyone's story - but I haven't. And just like the nation and the world want to know the specifics of what Trump's presidency will look like, I want to know the specifics of Jonah's future with cancer. In both cases, all that can be done is to fall to our knees in prayer, wait patiently day by day as the future unfolds, and love those around us celebrating the good that is in today.
~~~~~
PS - Just so it's clear, I didn't abdicate democratic responsibility - I went out yesterday and voted and then followed the election results closely. I'm just in a place where politics isn't the most important issue on my "issues board".
Posts
