Hello! Is anyone there? I’m not quite myself these days. These many days. 729 days to be exact, but who’s counting? I am. Every day, every hour, every minute, every second without my firstborn son, TJ. He was ripped from my arms on Saturday, January 9th, 2016 and the world has been topsy-turvy ever since that cold winter day.
TJ was diagnosed with terminal brain cancer on August 17th, 2014. Terminal from day 1. Not like, “hey, it doesn’t look good but if you (fill in the blank) then maybe he’ll have a chance” terminal. More like, “sorry, we’ve got nothing” terminal. So what’s a mom to do? First you wipe the tears from your face so you can march back into that ER room and sign admission papers in front of your son without him freaking out. Then you call your husband to tell him you’re NOT going to be home for dinner as you once thought since you and your son will be staying at the local children’s hospital. Then, after he’s finally settled into his ICU room and you’re certain he’s asleep, you cry in the small uncomfortable pillow that was given you by the staff while you stare at all the machine lights and watch the nurses come and in out all night long checking on your son.
Then, after a not-so-good night’s sleep you steel yourself for a talk with the doctor in the family lounge. This is where you hear words like “rare” , “inoperable”, “diffuse”, “spider web”, “seizures” “headaches”, “swelling”, “pain” and the inevitable “I’m sorry.” It is not where you hear any word or phrase resembling “hope”, “maybe”, “beat the odds”, or “healing.”
For 16 months we searched high and low for every reasonable and unreasonable treatment to free our son from the clutches of gliomatosis cerebri. But none were to be found. What we did find was the remarkable character and strength of a young boy fighting for his life. We found a community surrounding us in love and support and food. We found siblings that were struggling to get through just as their parents were. We found tears and cries and laughter and sadness. We found it all at the heart of a cancer that would change me and change our family deeply and permanently.
Mine is not a story that I hope anyone will ever intimately understand. Though I know too many do understand. It’s raw, sad, and weak and it’s joyful, hopeful, and strong. In the days and weeks to come I will share this story with you.
Thanks for listening.
How do I reply to such grief – the torment of a “Mama’s Heart” – the torment of my sister’s heart! Words – meaningless! Pitiful! But, I reply through my own tears and holding you close and often time clumsy attempts at support. How do I balance my own grief at losing this most precious and beloved nephew!? I weep and wail with you often sobbing alone in my own pillow so wishing I could take this pain away from you! And, I sit here…. speechless and numb still!
I LOVE YOU BABY SISTER!!!
Beautiful Mama! Beautiful Heart! So sweet and amazing to find the joy and love in the darkest times. Looking forward to reading every word.