Gastroparesis, hemiplegia, Spastic Hemiplegia, Tubie


Earlier this week I swept the floor, hung a bulletin board on the wall of our house which sits almost two months later in a state of not feeling moved in yet, and I folded a load of laundry I had mananged to dump from the dryer into a heap on the couch three days prior. I stalked the clock until nap time, when I gladly collapsed into a heap in my bedroom once the house was quiet. And I wept. A silent pouring relief of tears plopped dark circles on my pillow and I cried of happiness. Tears because I was so grateful to have been able to do those three things for the first time in…. I don’t know. I realized in those moments that I have been so overwhelmed in the grief of losing myself and my normal, that I have forgotten to be so deeply thankful for the triumphs like these. I know by that evening I was scowling at myself again, because it is ever so easy to compare myself to the old me and measure myself by the things I used to be able to do, and it’s a painfully distant gap. I want to remember these moments of victory though. I want to learn to give myself grace and to be quick to gratefulness even over the wins that seem so small. It is the repeated small victories that give me the motivation to keep pressing on and leaning in; how unfortunate for them to be overlooked. Sweeping, hanging, folding… so small, but still proof of something mighty. What small victories are you celebrating today?



Spastic Hemiplegia, Uncategorized

Living Raw


Lying there in the scratchy, unflattering folds of hospital blue, the crunch of paper stuck to the pain-sweat that slicked down my skin. My eyes were fixed on a wavy, colored light that slowly melted from warm blues and greens to soothing purples and golds, and back again. I was startled by the green scrubs that began chanting at me “We are breathing in together. In through your nose, out through your mouth; nice deep breaths. You’re doing great.”

She was wrong. I’m not doing great. In the deep inhales to distract my mind, I still hear the fear even louder. The blurs of soothing light draw my focus only enough to be jolted back by the cold touch and the sharp jabbing of the unnatural. The tearing raw of my skin during weekly routines, and the endless waking and checking and measuring and eternal dripping of the life-giving liquids feels no longer a hope, but a taunting anchor or what used to be.

I hold tight the salty wet of my eyes until the dark refuge of my quilts, because sets of young bright eyes are looking, watching, being brave for me and hoping to find me brave too. Those faces are what give me war-blood to push back hard; to carve giant chunks of living that are difficult and excruciating, but to them are memories treasured. Today’s sorrow leaves me wondering what I have left to give, but just as the sun relentlessly continues to peer over the treetops to light each dark morning, I know night will bring a small refreshing, a renewing of strength, and a little more fuel to burn for each one more day.