It is these types of days that make this journey hard. Not the type of hard where you yearn for sympathy or empathy. Not the type of hard that you can maybe shake by getting out of the house (we've tried). It's the type of hard that often makes it hard to even breathe or able to think clearly and positively past today.
As parents of a pediatric brain tumor survivor recently off of therapy, we are given the responsibility of watching for specific symptoms, side effects, and warning signs. When you think you might see something out of the ordinary, it consumes your thoughts, your eyes every time you look at your son, and your heart every time you think about how far he has come since that initial tumor resection in February of 2014. Today seems to be one of those days.
This post-treatment life we live is incredibly paradoxical. You want to be diligent but not over-reactive. You want to be therapeutically challenging but not too pushy. You want to be present but often find your mind wandering to the future or the "what ifs." There's such a fine line between the paradox, and when you tip-toe across the line, the snowball grows quickly and rolls uncontrollably down a slope of worry and fear.
Ari is doing very well. He is walking without any pelvic support in his gait trainer. He is progressing cognitively and is learning to initiate and engage in play. He is using his voice loudly and often. He is sleeping more regularly. He is smiling and dancing to music. He is jealous of his little brother. He is exploring our new living space. He is showing objection and opinion to choices presented to him. He's really quite amazing. We love him so much. That's where the fear originates from - we love him. In a way, we are very thankful for the journey we have been sent on. We've been transformed by this journey. We've more accurately experienced trials. We've more deeply experienced sadness. And, we've smiled bigger, cried louder, hugged tighter, and celebrated through triumph. In another way, we are deeply, deeply saddened by the thought of our son, and so many other children, being diagnosed with cancer every day.
Last Saturday night, we were encouraged and humbled by the work of our friends, family, and people we've never met. Our wonderful friends, Nathan and Cecilia Woods, saw a vision come to fruition. They have been tirelessly working to organize, choreograph, and give life to a dance concert to raise money for AT/RT research. It was so amazing. Dancers from the Eugene/Springfield area and the Pacific Northwest came together to put on a showcase that was done artfully, meticulously, and with great purpose. Ticket sales, silent auction sales, shirt sales, and personal donations all went toward funding research for AT/RT. Over $5,300 was raised. Nathan and Cecilia, thank you for being wonderful friends and for caring for Ari and our family so well. Everyone who helped, donated, and attended, thank you for being a part of the journey toward new, more effective, and less toxic treatment options for children battling AT/RT.
In the presence of the weighty days, we continue to be encouraged by generosity and love from you all. Thanks for continuing to journey with us.
No comments:
Post a Comment