202ONE
I don’t have a word for 2021. Kind of feels like the world stopped on July 29th with a single X ray and we have lived in a small, wildly spinning, encapsulated world within the normal world.
We went through the motions of Christmas and New Years Eve; but Christmas didn’t feel like Christmas and today doesn’t feel like New Years Day.
There were no Christmas cookies baked or eaten, few carols sang because I kept praise and worship music going almost constantly to combat the anxiety that hung heavy around the edges. And even though we stayed up until midnight and drank sparkling grape juice, my body seems to have no concept of whether it’s December or January or February. It’s just “the endless middle.”
Everything led up to surgery in an intense, emotional whirlwind fight. And now we are in the aftermath. Hoping and believing Liam’s body is NED (no evidence of disease, but not knowing until we get the pathology report. Meanwhile, we’re staring down months more chemo on top of surgery healing and post op physical therapy.
There’s less chatter about this stage in the osteo groups online and I feel unprepared both physically and emotionally. My body and mind feels so tired. Mind numbingly tired.
I sleep at night. It’s not that. It’s a weariness from months of living at what felt like adrenaline based, wide-open only to get difficult news and or need to mobilize urgently over and over and over and over.
My entire existence seemed to be taken with researching ostesarcoma, implementing supplements and foods to support his body, aid with chemo effects and kill cancer, finding and fighting for the best surgical option available and watching him like a hawk to help keep him from fracturing his femur or the tumor. And praying. So much time interceding for a miracle.
A few days before surgery I was praying and felt in my spirit the words, “the work is done.”
I felt confused. We hadn’t even had surgery yet. I’m slowly learning to pray what I feel. Not what I think I should pray in a situation. I have no divine way of knowing whether I’m right. It feels more like an infantile trust and belief that the Spirit of God is speaking to me and following that. Sometimes I pray desperately for God to speak truths to me. I can trust His voice. But sometimes I fear that it’s not Him — that it’s just my own grief-stricken mind wanting a good outcome and I catch myself imagining the devastation of feeling misled. Except it wouldn’t be misled because God never does that. It would be “mis-followed.”
And all I can do is reign my mind back in and live and believe and trust. Later, without knowing any of these thoughts, a friend messaged me and said, “Here is something I learned recently, ‘When God gives you a promise, faith stops asking for it and begins thanking Him for what He said He would do’.”