monday, 11:00pm
in D.C., comfort food is orange.
cheese puffs, macaroni and cheese and scalloped potatoes unlike any i've ever seen before...swimming in a sea of what could only be velveeta.the first few days, i could only eat soft foods, and they seemed to hurt the inside of my mouth. the next days, i was eating solid food (if velveeta soaked potatoes count as solid food) and i was still so unfamiliar with eating that i kept biting the inside of my lip.
you know things are seriously wrong when i am unfamiliar with eating....seriously
tonight, on my shower break —a.k.a. my daily 3-hour escape from the hospital— my uncle john made lima bean soup. it might have been the best meal i have ever had in my life.
my drives to and from Aunt Jane and Uncle John's are along the same roads i've driven all of my adult life. but this time, no one is going fast enough and the lights are not turning quickly enough. and i look into the cars next to me at the lights and i see normal people going about normal business and i know that they don't look over at me and see the girl who is racing to get back to the hospital. but i want them to. i want them to drive faster and get out of my way. and i want the pedestrians to stay on the sidewalks when i am driving by. i've left the hospital for three hours each day...and each day it seems like an eternity.
mom had a really good day today.
she ate some bacon this morning and then the games began. radiation was followed by physical therapy which was followed by an aspiration of fluids from her lung, followed by an x-ray, followed by respiratory therapy.
she asked me to bring her her crutches so she could try to stand up and get herself to the bathroom. she is kicking ass and taking names.
she wants to go home and she is fighting for it.
there was a moment when we were standing outside of the aspiration suite when her breathing was so labored and her sleeping face was contorted in so much pain, that i was worried that we might lose her at any minute.
i have gotten some really good advice over the past few days. i have been reminded that there will be plenty of time to feel the loss, and that now is the time to feel the love. and to live in the moment. i keep repeating that to myself when times get rough.
when i thought that she might stop breathing at any moment, i panicked, because we don't have the DNR in the charts because of the holiday weekend. i asked uncle jude about it late on friday and he hooked me up with someone in his office who will send us the durable power of attorney and the medical power of attorney.
(when your mom is sick, it doesn't suck to come from a family full of attorneys and physicians.)
so we were standing there this afternoon, Aunt Jane holding one of her hands, me holding her other hand in one of my hands and running my fingers through her hair with the other, and we did not realize until we talked over our lima bean soup this evening, that we were both thinking the same thing,"if she stops breathing right now, i will wait ten minutes before i press the button to get help." and we were each hopeful that the other felt the same.somewhere in the course of our normal lives, we have all talked with mom about what she would want and what we would want, and we really need the piece of paper.
later today, when magee and maura had returned from maura's doctors appointments, mom asked us to talk to my cousin Margie about a medical power of attorney. we told her that we had talked to Marg on friday and Jude after that and that Mrs. Hicks, from Jude's office, was sending something over for her to sign in the morning. she said that was good. she said that it had been really important for her to be able to decide when it was time for people to stop beating up on her mummy and that she and her sister, mary anne, had that piece of paper and that made everything much easier.
i spoke with dr. smith this evening and he says her bone scan was clear and they haven't gotten the results of the tests that they did on the aspirated fluid. he says that keeping her moving is good and that keeping her hopeful about going home is good, too.
today, i was in the moment. and i held her hand, and ran my fingers through her hair, and rested my feet on her bed and she held onto my toes.
mom and i have our rhythms. we have fallen into a different one. this one includes lifting her up and putting cold washcloths on her forehead and other unmentionable gestures. and no matter how she is being poked and prodded, when her eyes meet mine, she looks at me with so much love, i can't feel anything but peace.
