We spent most of this week in Ohio while Shannon had her surgery. During this time Olivia also had half a dozen meetings with doctors in Akron and with Amish men in Walnut Creek. Maggie completely avoided her napping and feeding schedule and also came down with a stomach bug while Lyric’s cough eased. Dylan came along for the ride but was neglected most of the time as we spent our hours driving to and from meetings and the Cleveland Clinic where Shannon had a tumor, her esophagus and 15 percent of her stomach removed. We ate on the run but well due to meals given by friendly church folk. I ran six miles and drove about 20 hours. I drank one Rockstar, one White Chocolate Mocha and one Frappaccino.
On Monday my family camped out in the lobby of the surgery center from 4:30 a.m. until we were able to visit Shannon around 1:30 p.m. Olivia and I were sent to find out if Shannon could be visited so we ended up being the first ones to see her. I walked into her nook in the midst of the ICU – we were the only ones not wearing white - and moved into a swirling mass of emotion. I noticed few details about her tubing or appearance but simply felt sad. Her mouth was held closed around the ventilator with a rubber strap. I realized that it is frightening to lose verbal contact with someone, especially as their consciousness is compromised by pain and medication. (we learned later that her initial epidural was not functioning) As I looked into her face it felt like we were both floating in and out of a haze. Her right hand slowly touched her chest again and again. At first I thought she was cold then correctly guessed that she was indicating pain in this spot. She was clearly in a lot of pain but there was a subtle relaxing of her body when I told her how much of her stomach was saved. She had requested that we tell her this information right away. I also realized that I am not that good at one-sided conversations. I told her that she was doing a good job and that the surgery had gone well and that I would bring Mom and Dad in to see her. On the way home I decided that surgery is really just a controlled version of a nasty swordfight.
I attended Olivia’s final meeting in Walnut Creek with the mostly Amish board of the newly proposed Windows of Hope Genetics Information Center and two independent genetic researchers. I noticed with interest that the Amish men were adept at filling up a space quietly and purposefully at the same time – they did not exude an intrusive agenda in the same way my wife and the researchers did. After about two hours of discussion we stood, exchanged closing comments and made ready to leave. I reached for my black corduroy jacket made in Bangladesh while the Amish men reached for their nondescript homemade ones. The chairman of the board, after opening a door to check how much the temperature had dropped in two hours, decided to leave his bike there and hitch a ride home. Olivia and I stopped at the local dari-ette and casually discussed the beginning of the rest of our lives together while eating ice cream sundaes.
On Monday my family camped out in the lobby of the surgery center from 4:30 a.m. until we were able to visit Shannon around 1:30 p.m. Olivia and I were sent to find out if Shannon could be visited so we ended up being the first ones to see her. I walked into her nook in the midst of the ICU – we were the only ones not wearing white - and moved into a swirling mass of emotion. I noticed few details about her tubing or appearance but simply felt sad. Her mouth was held closed around the ventilator with a rubber strap. I realized that it is frightening to lose verbal contact with someone, especially as their consciousness is compromised by pain and medication. (we learned later that her initial epidural was not functioning) As I looked into her face it felt like we were both floating in and out of a haze. Her right hand slowly touched her chest again and again. At first I thought she was cold then correctly guessed that she was indicating pain in this spot. She was clearly in a lot of pain but there was a subtle relaxing of her body when I told her how much of her stomach was saved. She had requested that we tell her this information right away. I also realized that I am not that good at one-sided conversations. I told her that she was doing a good job and that the surgery had gone well and that I would bring Mom and Dad in to see her. On the way home I decided that surgery is really just a controlled version of a nasty swordfight.
I attended Olivia’s final meeting in Walnut Creek with the mostly Amish board of the newly proposed Windows of Hope Genetics Information Center and two independent genetic researchers. I noticed with interest that the Amish men were adept at filling up a space quietly and purposefully at the same time – they did not exude an intrusive agenda in the same way my wife and the researchers did. After about two hours of discussion we stood, exchanged closing comments and made ready to leave. I reached for my black corduroy jacket made in Bangladesh while the Amish men reached for their nondescript homemade ones. The chairman of the board, after opening a door to check how much the temperature had dropped in two hours, decided to leave his bike there and hitch a ride home. Olivia and I stopped at the local dari-ette and casually discussed the beginning of the rest of our lives together while eating ice cream sundaes.
Saturday, March 7, 8:56 p.m.
Saturday, 9:11 p.m.
Sunday, March 8, 7:08 p.m.Monday, March 9, 4:37 a.m.Monday, 4:48 a.m.Monday, 5:17 a.m.Tuesday, March 10, 9:12 p.m.
4 comments:
ya killin me! Right here in under my nose and you don't even give me a call. ;-) My mom works down the hall to the proposed WOH clinic space in Walnut Creek. Next time you're around, shoot me an email! Heidi and I would love to see you again.
what a journey. i'm glad you were able to be there with shannon. i really miss you olivia. maybe we'll talk this weekend?
i'm praying 4 u guys. thanks 4 keeping us updated on your lives.
Matt and Livi, you're in our prayers. Thanks for sharing your journey.
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