Today, we won the coin toss.Charlotte’s bone marrow biopsy has returned CLEAR! And I realized that this year, she gets to start school, precious first grade, with no evidence of disease.
She has full scans Sept 8-9(MRI, CT, MIBG) for her routine surveillance, and her next injection for the vaccine study is end of October, but for now....for now she gets to be 6 and enjoy life. She gets to have the end of her summer full of endless playing and lots of swimming and get to just be. We get to breathe and relish in what feels like God's grace for a few more weeks until we hold our breaths for scans again. I realized recently how to put something I feel into words.
You know when you toss a coin? It flips in the air until it lands and you never know which side will land up. Its 50/50 heads or tails. Brian and I live in that space where the coin is flipping in mid air. As it approaches landing, our insides clench and our hearts feel like they are beating outside of our chest, and we simultaneously can't wait for the coin to land while also wanting it never to. We need to see what side it lands on but we also don't want to see. And so the majority of our lives feels spent right there with it flipping. This week, 2 other families we know going through this journey had their coin land on the opposite side of ours. Reoccurrence, resistance to therapy, progression, damaging and sometimes fatal side effects from treatment are on that side of the coin. We watched our coin land on that side last June. And my heart can feel torn between elation and celebrating our blessings while hurting and breaking with others who would give anything to be where we are right now. And many who would give anything to have a coin toss at all. To live in the space where it flips, hope still possible while they watch it land. I know this to be true and yet there are times I have this bitterness that surfaces due to this burden Brian and I bear. As I type this I feel like I can sleep for days on end because every time we have disease evaluations, I feel like there is a giant fist clenching on my insides. It may not always be obvious and I rarely like to acknowledge it, but that is the truth. This is our reality.
I wish I could truthfully say that I'm faithfully stoic during this coin toss. That I always surrender my fears and worries to God or something like that, but God knows me and he knows my flaws. I often try to make bargains with him and arrangements to get my way, like a small child trying to negotiate with their parents. Of course God knows my heart and I picture him smiling and nodding and just when I need it most I feel his huge hug sometimes in the form of an overwhelming feeling, or perhaps in a comment or gesture by a friend or complete stranger...by you out there reading this😊. I know He hears all of our prayers and His works are a mystery we aren't always meant to understand. Sometimes my bitterness flares and then subsides as quickly as it came, and I feel like I'm really growing in those moments.
But not Charlotte.
If you want to know Charlotte’s heart, here it is in a nutshell: she was so sore and tender and on pain meds from the bone marrow biopsy (they go in to her pelvic bone in four locations to aspirate the marrow) and when she was feeling up to walking she stopped and looked at me and said “Mommy? I’m sorry you have to carry my backpack too (I had rolling luggage and my own back pack and a very large bag full of the medication she takes on and off over this next cycle of the trial).” She was worried about how I would manage. In pain, a little wobbly from anesthesia, only 6 years of age....and her first thought was if I am ok. I know you all have loved her and cared for her all these years, but I share this because no matter what she’s been through, there is no bitterness inside of her. She doesn’t wallow for long and she has a depth of love and compassion within her beyond her age. This is who you are praying for and she shows us Gods love every day. Brian and I thank God that we get to be loved by Charlotte. And believe it or not, we are grateful for the coin toss and the hope we are blessed to have by it.
Village: Can you please add Elijah and Eli to your hearts and prayers at this time. Their worlds are turned upside down and they need to be lifted up while they figure out best steps to keep fighting and to keep hope alive. We are so grateful for all of you and for each act of love we’ve received—there have been so many. #Charlottestrong
Comments
Post a Comment