Losses and Gains...
Posted Sep 20, 2010 2:43am
The roller coaster ride continues! It’s not been quite as smooth sailing as perhaps I thought it would be, this whole getting home thing. Oh, my, yes, it’s better than the hospital, and I’m thankful to be past the operation and the precarious first few days. But it’s getting ridiculous when the fact that you got to sleep for 3-1/2 hours straight sends you into a crying jag of happy tears.
The first thing on the list of losses here is the “normal”, and I am having more trouble than expected in establishing a NEW normal. I’ve always wanted a “reset” button in life! Well, here it is, and it’s really not all that fun! It is, after all, still the same game. It’s just taking more time than I want it to to find the center of our ever shrinking universe here. Time still means precious little, and being awake at 2:00 a.m. is on par with a heavy nap at 4:00 in the afternoon. Not sure if it is the priority of time or the brain fatigue, but we bought a dry-erase board for Phil’s room so that we could write down vital times, like meds, up in the chair, feeding, down to bed, inputs and outputs, etc. But I still forget to write stuff on the board. Not the first thing on my mind at 3:30 in the morning after fumbling with syringes and stomach tubes in the dark. It is getting better though!
It was a tough start today. Phil had been in bed without pain meds for quite some time, and was less than thrilled with the idea of getting up in his chair. The fighting ensued, but we won because: a) We are the grown folk, and we know better; b) We don’t feel his pain, and we know what’s best for him, and c) because we CAN get his happy ass out of bed and he can’t do a darn thing to stop us . He wheeled out to the kitchen and proceeded to attempt to play with his Legos. It was heartbreaking to watch him as he got progressively more frustrated. His arms are so weak, and he can’t hunch over any more. He has to re-learn or adapt to so many changes. As he said through his tears today, “It’s just not the same!”
This lead to a conversation about what he COULD do. Through much discussion, we decided he could go for a short ride in the van to Subway. He cheered up a little and fared well for the trip, even if it only resulted in him just nibbling on a corner of the $4.00 sandwich! When we got home, he got a call from his friend, Shayna, and that went a long way toward making him feel good, too. When the world gets smaller, people get bigger.
Through loss of sleep, and loss of independence, and loss of a big chunk of our world at the moment, we have made gains, too. Phil asked to look at pictures of this surgery. I could barely stomach the ones I found on Google, but he really wanted to see them. He sat staring at them for a long time. He said, “I really HAVE been through a lot, haven’t I?” Yeah, buddy, you have. But after that, the most amazing change of countenance came over him, and we spent the next half hour laughing over a goofy video he wanted to watch on YouTube, and movies we had seen, and Sparky’s antics. When he said he was really tired and wanted to go back to bed, it wasn’t with the whiny tone I have come to equate with a kid who’s short on pain meds. Rather, it was with the tone of a young man who knew he had reached his limit for the day, and politely requested to go back to bed. Homie is growing up…
I think I may have gained a little, too, on the sleep deficit last night! Just had it timed right that I was actually asleep whenever Phil was asleep. Like I said, 3-1/2 hours at one crack! How ‘bout that? Then twice in a row…why it was positively magical!
We have gained a new appreciation for the ladies from Rachel’s church who have been bringing meals for the family. I have big plans to get in the kitchen and inventory it so that I can actually cook again, but just when I feel like I don’t have the energy to pull a culinary McGyver and whip up a Beef Wellington out of stale potato chips and a bouillon cube, these wonderful women have showed up with the most marvelous creations. They are a credit to their faith, and words fail to express my gratitude!
We have made major strides in keeping the house clean, thanks to the incredible head start provided by my mother and sisters while we were at the hospital. I have managed to keep up with the laundry, and believe that I have washed enough sheets and towels this week alone to outfit a major metropolitan medical center.
Tomorrow is coming too soon, with a panic attack worth of phone calls and things to do and remember. Occupational Therapy is a priority – currently a bit of a hot potato for insurance reasons – (do NOT get me started…) – and preparing Phil for his Tuesday trip to Children’s for follow-up. With Mark off getting inventory for the store tomorrow, it will be my first whole day alone with Phil. Should prove interesting. Then there are all non-Phil issues; things that my late father would have called “keeping the ship afloat”. (For what it’s worth, Pa, we’re takin’ on water…but we’ve got out buckets… ).
Phil is still chatting with Mark as I write, about cameras and cars, and I know we are all ready to crash for the night. He has ended the night with a bowlful (albeit small…)of noodles, and a few sips of chocolate milk – real food! Yay! I’m going to end my night out the back door with a “real” cigarette and a look up at what I hope are stars. They serve to remind me that no matter how small our world is getting, it’s still part of the bigger plan. That is all I have to say. Let’s smoke a while….
The first thing on the list of losses here is the “normal”, and I am having more trouble than expected in establishing a NEW normal. I’ve always wanted a “reset” button in life! Well, here it is, and it’s really not all that fun! It is, after all, still the same game. It’s just taking more time than I want it to to find the center of our ever shrinking universe here. Time still means precious little, and being awake at 2:00 a.m. is on par with a heavy nap at 4:00 in the afternoon. Not sure if it is the priority of time or the brain fatigue, but we bought a dry-erase board for Phil’s room so that we could write down vital times, like meds, up in the chair, feeding, down to bed, inputs and outputs, etc. But I still forget to write stuff on the board. Not the first thing on my mind at 3:30 in the morning after fumbling with syringes and stomach tubes in the dark. It is getting better though!
It was a tough start today. Phil had been in bed without pain meds for quite some time, and was less than thrilled with the idea of getting up in his chair. The fighting ensued, but we won because: a) We are the grown folk, and we know better; b) We don’t feel his pain, and we know what’s best for him, and c) because we CAN get his happy ass out of bed and he can’t do a darn thing to stop us . He wheeled out to the kitchen and proceeded to attempt to play with his Legos. It was heartbreaking to watch him as he got progressively more frustrated. His arms are so weak, and he can’t hunch over any more. He has to re-learn or adapt to so many changes. As he said through his tears today, “It’s just not the same!”
This lead to a conversation about what he COULD do. Through much discussion, we decided he could go for a short ride in the van to Subway. He cheered up a little and fared well for the trip, even if it only resulted in him just nibbling on a corner of the $4.00 sandwich! When we got home, he got a call from his friend, Shayna, and that went a long way toward making him feel good, too. When the world gets smaller, people get bigger.
Through loss of sleep, and loss of independence, and loss of a big chunk of our world at the moment, we have made gains, too. Phil asked to look at pictures of this surgery. I could barely stomach the ones I found on Google, but he really wanted to see them. He sat staring at them for a long time. He said, “I really HAVE been through a lot, haven’t I?” Yeah, buddy, you have. But after that, the most amazing change of countenance came over him, and we spent the next half hour laughing over a goofy video he wanted to watch on YouTube, and movies we had seen, and Sparky’s antics. When he said he was really tired and wanted to go back to bed, it wasn’t with the whiny tone I have come to equate with a kid who’s short on pain meds. Rather, it was with the tone of a young man who knew he had reached his limit for the day, and politely requested to go back to bed. Homie is growing up…
I think I may have gained a little, too, on the sleep deficit last night! Just had it timed right that I was actually asleep whenever Phil was asleep. Like I said, 3-1/2 hours at one crack! How ‘bout that? Then twice in a row…why it was positively magical!
We have gained a new appreciation for the ladies from Rachel’s church who have been bringing meals for the family. I have big plans to get in the kitchen and inventory it so that I can actually cook again, but just when I feel like I don’t have the energy to pull a culinary McGyver and whip up a Beef Wellington out of stale potato chips and a bouillon cube, these wonderful women have showed up with the most marvelous creations. They are a credit to their faith, and words fail to express my gratitude!
We have made major strides in keeping the house clean, thanks to the incredible head start provided by my mother and sisters while we were at the hospital. I have managed to keep up with the laundry, and believe that I have washed enough sheets and towels this week alone to outfit a major metropolitan medical center.
Tomorrow is coming too soon, with a panic attack worth of phone calls and things to do and remember. Occupational Therapy is a priority – currently a bit of a hot potato for insurance reasons – (do NOT get me started…) – and preparing Phil for his Tuesday trip to Children’s for follow-up. With Mark off getting inventory for the store tomorrow, it will be my first whole day alone with Phil. Should prove interesting. Then there are all non-Phil issues; things that my late father would have called “keeping the ship afloat”. (For what it’s worth, Pa, we’re takin’ on water…but we’ve got out buckets… ).
Phil is still chatting with Mark as I write, about cameras and cars, and I know we are all ready to crash for the night. He has ended the night with a bowlful (albeit small…)of noodles, and a few sips of chocolate milk – real food! Yay! I’m going to end my night out the back door with a “real” cigarette and a look up at what I hope are stars. They serve to remind me that no matter how small our world is getting, it’s still part of the bigger plan. That is all I have to say. Let’s smoke a while….
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