I have no idea where this will go. I never go back and edit my writing for content. I’m just going to let it flow and see where it takes me.
Support, statistics, advice……
HOW do you have these conversations with friends, family, new acquaintances? We are quickly coming up on our three year diagnosiversary. I feel like I have ‘done’ my big splashy Momcologist soap box stuff. I’ve networked like crazy, met some amazing people. Have developed relationships with many and have immediate connections with a handful. I’ve checked out the foundations, learned about the resources, can quote the facts and statistics like they were the birth dates of my children. I can talk about this experience with a steady voice and rattle off Gregory’s timeline as if we were talking about a grocery list.
Someone very close to me has a niece diagnosed with cancer.
Three new JMML families enter my life within a week’s time.
I’m watching. Witnessing. As a local Momcologist is saying Good Bye to her son.
I’m LIVING my life, with a SURVIVOR. Who, at this moment, is surviving and thriving. Who you would look at and NEVER know what he has been through.
On many occasions, it has been suggested that WE are the reason Gregory is doing as well as he is. I’ve even believed this, for quite awhile. Believed that the only reason Gregory is doing as well as he is, is because I took every single possible precaution I could. Protected that child up one side and down the other. I think I had to believe that. At least for awhile. I had to control something. Yes, the precautions we took certainly improved his chances. Yet……
Every single step is unknown. I’m not going to be able to put this into words that my heart is screaming to express. By saying/believing that what ‘I’ did is the reason Gregory is surviving there must also be a reverse thought. So….. my friends kid did not survive because ‘SHE’ did not do A, B & C? Chew on that for awhile.
My very dear friend, Susan Heard, Momma to David has this to say about it: “Science failed David.”
Yes. Our science can only go so far.
How do you offer words of support to newly diagnosed families. I can only share our experience. I find myself using a lot of disclaimers along the way. Clarifying that we are not special. That we did not have a magic bullet. That we did not have ‘the’ doctors and treatment center. Trying to convey the fact that we did NOTHING special.
At this moment in time: WE ARE LUCKY. Plain and simple. I don’t have secret wisdom to impart. I only have a heart that is open and willing to sit with yours. I have enough distance to be able to share our story, take yours in and lean into you. We still have a very long row to hoe. In this moment, I feel like we have a break. A time to take a breathe, survey our surroundings, enjoy the wellness of our family. This is not done without great respect for what is behind us and what we have yet to face. We are also acutely aware of the mysterious ‘What ifs……”
I can only offer what I have in my toolbox. I have patience. I have experience. I have pragmatism. I have love. I don’t have magic bullets. I don’t have shortcuts. I don’t even have band-aids. (I don’t believe in them.) If you come to me, I will offer what I think you need. I will gently test your limits, checking where you are and how best I can serve. I will ALWAYS be truthful. Sometimes painfully so. I will NEVER sugar coat. I will NEVER offer false hope. Ever. I will ask you to SURRENDER. If we are not a good fit, you are under no obligation to continue a relationship with me. If we are a good fit, I will always be here for you. Just because we both have kids with cancer………. it does not always work. I will go with you to those dark places. I will hold your hand as we walk those terrifying paths. You will never be alone. Lonely? Probably. Alone? Never.
Crap shoot, folks. Childhood cancer is one big Crap Shoot. Don’t ever forget that. You cannot pray enough, wish enough, find the right doctor, find the perfect treatment center, get into that one trial. Nothing is certain. No one is responsible. It’s the luck of the draw. It’s throwing the dice: “Baby needs a new pair of shoes!”
So freaking grateful we are currently holding a long straw.