run—away, to, from, for something. feel alive. free. breathe. fly. skate. soar. smile. wave. weep. see—oceans, vistas, trees, owls, ochre leaves. smell hay, clover, salt, goats, sea. anticipate. hope. vibrate. sting. ache. forget. dream.
i've been trying to do all the those essential things, to take my own advice so i can do more than merely survive, but so i can thrive amid caring for someone with so many basic and dire needs as my son calvin.
but in reality, calvin, his caregiving, his advocacy, have always gotten in the way, which is why i haven't written in a while. i'm really sorry! i've been dealing with reams of calvin-related paperwork, a struggle with his school district over the problematic shift and significant cutback of his summer school, his ongoing doctor's appointments, blood draws, and diagnostic imaging meant to follow up on his previously broken hip, his pneumonia, his gallstone(s), and the placement of a stent in his pancreatic duct during an Endoscopic Retrograde Cholangiopancreatography (ERCP) procedure last month. but i finally found the time to catch a breather and write.
since calvin's ERCP, he has been doing pretty well. he hasn't had waves of that excruciating pain that landed us in the hospital on New Year's Eve, nor has he had a seizure in forty-one days—his second-longest stint in what is probably close to a decade! he seems to mostly be in good spirits, and is sleeping fairly well. he takes moderate doses of two newer anti-seizure drugs, xcopri and briviact, and i have cut his thca cannabis oil dose in half without any problems.
so, too, calvin's receptive communication seems to be improving. his ability to "tell" us what he wants (a bath, juice, to go outside, to get on the bus or go for a car ride) is also better. though it's not easy or fun, i'm focusing more on his profound autism, and looking for ways in which we can work on improving his problematic behaviors to make it easier for everyone to take care of him (i'd like to simplify his treatment).
as for my own personal non-calvin-centric endeavors, i've been running a lot and training for my first ten-mile road race, which is this sunday in portland, maine. i'm hoping for good things. i'm hoping it doesn't rain, though that isn't looking very promising. i'm hoping for a fast time. i'm hoping to see friends and meet new people. running has been a savior and helps make my life feel more okay.
and so, since i often feel like i need a break, a respite, a lifesaver, i'll hopefully be able to keep running and smiling and waving and weeping and, as often as possible, dip into nature to soak up all it has to offer, forget all the rest, and continue to hope, vibrate, sting, ache, forget, dream.
Good to hear that Calvin has been doing well in recent weeks! Good luck for good weather, a fast time and a runner's high in your 10-miler in Portland.ReplyDelete