It's the only one that fit the description they gave us; a young male, local. The obituary says he died on Sunday from injuries sustained from a motorcycle accident. His funeral was yesterday. So curious, so grateful; I wanted to go, but felt it would be grossly inappropriate.
We will wait. We will write the letter, and submit it through the psycho-social worker(her title seems so appropriate). I hope they respond. I hope.................. I don't know. I just want them to know the gift was not wasted; we're deeply aware of their loss, and grateful.
The extreme range and intensity of emotions makes it difficult to breathe, sometimes. I would eat, but the hospital chicken tastes like cardboard. I would go to Julie's but even little variations off the beaten paths are uncomfortable. It's easier just to sit here and watch Scott; find sweet contentment in that he breathes.
Saturday, May 31, 2008
Thursday, May 29, 2008
Hurrah!
I think the hospital is the only place where dozens of people are thrilled to hurrahs for your first post-surgical bowel movement. Hurrah!
It might be because the chest tube was yanked a bit and disconnected (NOT my fault this time, thank you), but the air pocket is even bigger, now, and they can't take the tube out yet. Were it not for that, and the other sensitive tether, he'd be running laps.
Scott loves visitors, by the way, but it's a good idea to call, first; especially during the day. I can't believe how busy they keep him. Scott was thrilled to see Brad. Jan and Bill, and his parents dropped by; love them all so much.
I'm a bit kidsick; miss the loves and hugs; can't wait to see them. John and Kathy plan to bring them June 11th; almost two weeks; don't know if I can last that long.
Side note: Scott didn't have a Whipple, after all. It was a Roux-En-Y. Similar to gastric bypass surgery, they hook small intestine to the new liver, as opposed to hooking intestines up to his stomach. Had it been for me, I might have asked for a 2-for-1 deal, but Scott is so thin, they'd have just laughed at us.
It might be because the chest tube was yanked a bit and disconnected (NOT my fault this time, thank you), but the air pocket is even bigger, now, and they can't take the tube out yet. Were it not for that, and the other sensitive tether, he'd be running laps.
Scott loves visitors, by the way, but it's a good idea to call, first; especially during the day. I can't believe how busy they keep him. Scott was thrilled to see Brad. Jan and Bill, and his parents dropped by; love them all so much.
I'm a bit kidsick; miss the loves and hugs; can't wait to see them. John and Kathy plan to bring them June 11th; almost two weeks; don't know if I can last that long.
Side note: Scott didn't have a Whipple, after all. It was a Roux-En-Y. Similar to gastric bypass surgery, they hook small intestine to the new liver, as opposed to hooking intestines up to his stomach. Had it been for me, I might have asked for a 2-for-1 deal, but Scott is so thin, they'd have just laughed at us.
Mooshy
It's not that I'm not excited to see Scott; I'm just wondering if I didn't accidentally lay down on a train track instead of my bed. Didn't even hear the choo choo, I slept so solid; no blood, just tired and mooshy.
By the way, Scott has enjoyed all the comments on the blog, and emails. He just smiles and feels loved. Thank you.
By the way, Scott has enjoyed all the comments on the blog, and emails. He just smiles and feels loved. Thank you.
Wednesday, May 28, 2008
God Bless our donor family
That man's wife could not have been Scott's second for transplant. She is a different blood type. Her husband must not have understood; with her being a Status 1, they would have had no choice but to give it to her, had the liver been compatible. I feel a bit of relief, but still pained empathy. Scott's natural meld was only 18; abject misery. Her meld score is 55; unspeakable pain and suffering.
Scott has had several rubbernecking drs drop by, needing to see in order to believe. His recovery is remarkable since not only did he have a liver transplant, but a Whipple procedure as well; the two most risky abdominal surgeries at the same time. He looks so good; walking around and around the unit.
With Scott doing miraculously well, he was moved to the intermediate care unit, today. I like this unit; a well trained and organized staff; bigger rooms with a couch and reclining chairs; much quieter. I would like to keep Scott there as long as possible; their focus seems sharply concerned about advocating on their patients' behalf.
It will be Fast Sunday this coming weekend. I would like to invite everyone to join us in a Fast of Thanksgiving; a celebration to praise God for the overwhelming mercies poured out on our family.
With our deepest gratitude, we must also thank God for our donor family; fast and pray they will have blankets of peace and comfort wrapped around their heavy hearts. I feel this is the least we can do; we owe them so very much. By our faith, angels will attend them as they have over my family this last year. Please, God bless them a million times over.
Scott has had several rubbernecking drs drop by, needing to see in order to believe. His recovery is remarkable since not only did he have a liver transplant, but a Whipple procedure as well; the two most risky abdominal surgeries at the same time. He looks so good; walking around and around the unit.
With Scott doing miraculously well, he was moved to the intermediate care unit, today. I like this unit; a well trained and organized staff; bigger rooms with a couch and reclining chairs; much quieter. I would like to keep Scott there as long as possible; their focus seems sharply concerned about advocating on their patients' behalf.
It will be Fast Sunday this coming weekend. I would like to invite everyone to join us in a Fast of Thanksgiving; a celebration to praise God for the overwhelming mercies poured out on our family.
With our deepest gratitude, we must also thank God for our donor family; fast and pray they will have blankets of peace and comfort wrapped around their heavy hearts. I feel this is the least we can do; we owe them so very much. By our faith, angels will attend them as they have over my family this last year. Please, God bless them a million times over.
A white man
The dr said he has never seen the liver enzymes drop so fast. Scott's bilirubin is down to 1.2; almost perfect. They knew the liver would be good, and are thrilled to find it even pristine.
I don't quite understand what it has to do with requiring a chest tube, but they say it's because the radiation fused his old liver to the diaphragm and major vessels. ??????? I have to trust that they know what they are doing. The tube stays till tomorrow, but it is very painful all the way up his back, right under his ribs.
It's a harder day. Scott's not able to deal with all the different teams of drs, the pain, the procedures, leaking drains, his wife tripping on the catheter.............. a constant stream of overstimulation; unpleasant, to say the least.
All in all, I think he's endured the indignities of it quite well. Past caring, he could streak the halls showing off his little white buns without even flinching, the most major inhibition being that his mother might see.
I don't quite understand what it has to do with requiring a chest tube, but they say it's because the radiation fused his old liver to the diaphragm and major vessels. ??????? I have to trust that they know what they are doing. The tube stays till tomorrow, but it is very painful all the way up his back, right under his ribs.
It's a harder day. Scott's not able to deal with all the different teams of drs, the pain, the procedures, leaking drains, his wife tripping on the catheter.............. a constant stream of overstimulation; unpleasant, to say the least.
All in all, I think he's endured the indignities of it quite well. Past caring, he could streak the halls showing off his little white buns without even flinching, the most major inhibition being that his mother might see.
Tuesday, May 27, 2008
Day two
I haven't seen Scott this giddy since the day we got married. I can't help but wonder if he isn't mostly high on steroids, but it has been a magnificent day. What a thrill to go from life support to walking around the unit in one day. It's a rush for me, and I'm not even on drugs. Heaven.
So, day three is supposed to be a rough one. If you compare it to having a baby, it's the day that your milk comes in, but I'm not worried; his eyes are bright, and he's excited to progress no matter what it takes. How wonderful to see the intensity switch to recovering, as opposed to pursuing the hallows of yellow death.
So, day three is supposed to be a rough one. If you compare it to having a baby, it's the day that your milk comes in, but I'm not worried; his eyes are bright, and he's excited to progress no matter what it takes. How wonderful to see the intensity switch to recovering, as opposed to pursuing the hallows of yellow death.
empathy, grief and gratitude
John and Kathy told me about the conversation and it reduced me to a rare public sob. I've had a good grip till now, but that was too much. In his 60's, he introduced himself after having overheard John on the phone. Apparently, his wife was second for Scott's transplant. She is here in the same ICU with 2-3 days to live if she does not get a liver. It evokes a conflicting mix of empathy, grief and gratitude........ I can handle a lot, but I can't handle that.
Scott is doing excellent; breathing; tubes coming out; pain a problem, but working with it; good spirits. I'm so very proud of him. He's happy and overcome with the miracle of it all.
Scott is doing excellent; breathing; tubes coming out; pain a problem, but working with it; good spirits. I'm so very proud of him. He's happy and overcome with the miracle of it all.
Monday, May 26, 2008
a gift
My standard reply to, "How's Scott?" has been, "He's breathing.", but I can't even say that anymore. They tried to take him off the ventilator, but he requires so much pain medication, he's not breathing on his own. It's best that he's heavily sedated. I even prefer him that way for a while.
It was as if a warm blanket was put around my shoulders, and toasted me from the inside out. The feeling lasted for only a minute, but the imprint lasted; I've maintained a calm most of the day.
The feeling right before Scott was diagnosed with cancer was much stronger than this morning's, but definitely along that same line. It's a warning; a "Hold on to your panties; I'm in charge; it's going to be a rough ride." message from God. Most importantly, it's a strengthening; a "I love you, I'm here, it will work out." message; a precious gift before any crisis.
So, what to expect? Scott will likely be taken off the ventilator in the morning. He'll have to deal with pain, and heaven only knows what else is coming. I guess it doesn't matter if I know or not; we're strapped in tight for the ride, and there's no sense in jumping out now...... as if we have any choice.
It was as if a warm blanket was put around my shoulders, and toasted me from the inside out. The feeling lasted for only a minute, but the imprint lasted; I've maintained a calm most of the day.
The feeling right before Scott was diagnosed with cancer was much stronger than this morning's, but definitely along that same line. It's a warning; a "Hold on to your panties; I'm in charge; it's going to be a rough ride." message from God. Most importantly, it's a strengthening; a "I love you, I'm here, it will work out." message; a precious gift before any crisis.
So, what to expect? Scott will likely be taken off the ventilator in the morning. He'll have to deal with pain, and heaven only knows what else is coming. I guess it doesn't matter if I know or not; we're strapped in tight for the ride, and there's no sense in jumping out now...... as if we have any choice.
first look
Just saw Scott; hooked up from most every orifice and several they created just for the occasion; bloaty; heavily sedated; color looks better; won't know for several days about the cancer, or if transplant successful; so far, so good.
Headed for lunch. Waiting..................
Headed for lunch. Waiting..................
closing
They are closing. It will be several hours before we can see Scott in the ICU, but we are headed over to talk to the surgeon.
Thank you, thank you, Lord.
Thank you, thank you, Lord.
Three more hours
I threw open the windows to quiet rain, green trees, and song birds. It's a perfect room, but I can't help but wonder if someone in this hotel gathers smug joy from the fact that I conditioned my hands and lotioned my hair. Shiny.
All's going well; three more hours.
All's going well; three more hours.
The good go
Pffft...... so much to be grateful for.
They're ready to put in the new liver. Scott's doing fine. It will be another 4-5 hours...........
Thank you, thank you, Lord.
They're ready to put in the new liver. Scott's doing fine. It will be another 4-5 hours...........
Thank you, thank you, Lord.
a long day done
I can't do it. I can't blog the joke Stan told me; my mother reads my blog. Just know that I smiled all night about it, even though I couldn't tell it to Scott's mother, either. Maybe later.
They just took Scott back for transplant. It's a long 10-15 hour surgery. I wonder if the drs trade off and take naps. Pray for them.
Scott's parents and Kari also have a room here at the Guesthouse Inn. What a relief to have them in a more comfortable place than the surgical waiting room. It's priceless to have a private place to fall apart and pray.
By the way, thanks for all the prayers on our behalf, and especially the prayers for our donor family. Apparently, this one donor is giving precious, new life to over 6 people, tonight.
I'm fried with an adrenaline overload. Surely, the intensity of this gig has shaved years off my life and added them to my hiney.
Heaven help us all get through these excruciatingly long days, and the even longer nights.
They just took Scott back for transplant. It's a long 10-15 hour surgery. I wonder if the drs trade off and take naps. Pray for them.
Scott's parents and Kari also have a room here at the Guesthouse Inn. What a relief to have them in a more comfortable place than the surgical waiting room. It's priceless to have a private place to fall apart and pray.
By the way, thanks for all the prayers on our behalf, and especially the prayers for our donor family. Apparently, this one donor is giving precious, new life to over 6 people, tonight.
I'm fried with an adrenaline overload. Surely, the intensity of this gig has shaved years off my life and added them to my hiney.
Heaven help us all get through these excruciatingly long days, and the even longer nights.
Sunday, May 25, 2008
contentment
I asked Nefi to come sit with Scott while I sleep for two reasons. First, I need someone to advocate on his behalf since he has gone loopy on the IV pain meds. Second, I need him to be able to talk to someone that could handle discussing the whole, "I could die, today." issue; someone he doesn't feel the need to protect.
I do have to say, I have never loved that man as much as I do right now.
Dr Schwartz gave him the two, "If I find cancer" scenarios. He could leave his damaged liver in and Scott probably wouldn't survive the surgery, or, he could go ahead with the transplant where Scott would be on so many immunosuppressive drugs, the cancer would spread like wildfire. It would be anyone's guess how long, but it likely wouldn't buy him significant quality time.
I was not prepared for this discussion, and what Scott said to the dr next floored me. "The liver needs to go to someone who can use it for 40 years, not weeks. I don't want to die, but I also don't believe that this is the end. I will still have my family."
It took me half a chicken, a big bunch of tater tots, and a long nap to get a grip after that one, but I feel so blessed to be married to such a great man. He obviously doesn't have any pressing regrets, and loves me so much. It was a great gift to come to a solid understanding and have the opportunity to share our feelings. I really don't feel like he's going to die, but what a blessing to feel at peace with each other, and with God. It's an exquisite level of contentment I don't think I have ever had.
Anyway, I'm headed back up. The procurement team has not left yet, which means we are at least 6 hours out from transplant. It promises to be a long, long, long night.
I do have to say, I have never loved that man as much as I do right now.
Dr Schwartz gave him the two, "If I find cancer" scenarios. He could leave his damaged liver in and Scott probably wouldn't survive the surgery, or, he could go ahead with the transplant where Scott would be on so many immunosuppressive drugs, the cancer would spread like wildfire. It would be anyone's guess how long, but it likely wouldn't buy him significant quality time.
I was not prepared for this discussion, and what Scott said to the dr next floored me. "The liver needs to go to someone who can use it for 40 years, not weeks. I don't want to die, but I also don't believe that this is the end. I will still have my family."
It took me half a chicken, a big bunch of tater tots, and a long nap to get a grip after that one, but I feel so blessed to be married to such a great man. He obviously doesn't have any pressing regrets, and loves me so much. It was a great gift to come to a solid understanding and have the opportunity to share our feelings. I really don't feel like he's going to die, but what a blessing to feel at peace with each other, and with God. It's an exquisite level of contentment I don't think I have ever had.
Anyway, I'm headed back up. The procurement team has not left yet, which means we are at least 6 hours out from transplant. It promises to be a long, long, long night.
OY!
There seems to be a decided lack of communication between the nurses and drs and surgical suites. You would think that by now they would know that it takes at least 6 hours from the time they go get the organ to the time that they can do the transplant. Now, if they haven't left yet to go get the organ, then it would only figure that 8am is not a viable surgical time; neither is 9am. In fact, if they don't even plan on going to get it until 2pm, it would make sense to let the wife sleep instead of sucking her energies out with misinformation. Or better yet, send for us at a decent time, rather than risk losing the patient altogether with a wife who drove the last third of the way down with her eyes crossed she was so tired.
Anyway, we are looking at tonight, late tonight for transplant. I am at the hotel to sleep. Scott is not doing great; just having had the "If I get in there and find the cancer has spread......" talk with the dr. OY!
The only thing they can tell us about the donor is that he/she is extremely young and a perfect size match for Scott. I'm praying for them, and it's kicking my hiney to think of how my family is being saved while another is being crushed.
Pfffft............ I really need to sleep.
Anyway, we are looking at tonight, late tonight for transplant. I am at the hotel to sleep. Scott is not doing great; just having had the "If I get in there and find the cancer has spread......" talk with the dr. OY!
The only thing they can tell us about the donor is that he/she is extremely young and a perfect size match for Scott. I'm praying for them, and it's kicking my hiney to think of how my family is being saved while another is being crushed.
Pfffft............ I really need to sleep.
hurry up and wait
He was bumped up on the surgery schedule, so instead of this afternoon, he's going for transplant this morning. It's a huge blessing; he feels absolutely awful; I can't imagine waiting all day. Well, we might still end up waiting all day with the way things tend to go around here, but there's hope.
I'm waiting with John and Kathy, and Kari and Mike. They came so we could all lose our minds together waiting; cause ya' know, it's just more fun when you lose it all together.
I'm waiting with John and Kathy, and Kari and Mike. They came so we could all lose our minds together waiting; cause ya' know, it's just more fun when you lose it all together.
Saturday, May 24, 2008
a crush
Nothing, literally, no thing has ever flattened me faster than being called 2nd for transplant. Today is no exception. I might would rather soak my feet in lemon juice after having my toenails ripped off. Crushing.
Scott has chosen an emotional flat line. I could hit his face with a 2x4 and he wouldn't flinch. It might be easier for him that way, but my meltdown would be more validated if he lost it, too. It's lonely being the only basket case.
I guess there still is a chance the #1 guy won't take it, but it's pretty slim. They are not even having us come down this time; just on call; yippeee, woo hoo, let's wait around to see if #1 dies before he can take it. Oy!
The day has not been a total bust. The kids and I had planted the garden before Salt Lake called. We visited Grandma and Grandpa Lovell's grave; ate lunch at Jan's; bought an ivy vine from Home Depot.
I traded a child with Jan for the night; JA stayed to play wii and with her boys, Marley came to play with my girls. It's a good trade; while I love the boy so very much, he's the one that requires that my energies be thoroughly sucked out before he can go to bed. There's just not any to spare, tonight. It's likely he'll feel more loved if he's not next to me.
Scott has chosen an emotional flat line. I could hit his face with a 2x4 and he wouldn't flinch. It might be easier for him that way, but my meltdown would be more validated if he lost it, too. It's lonely being the only basket case.
I guess there still is a chance the #1 guy won't take it, but it's pretty slim. They are not even having us come down this time; just on call; yippeee, woo hoo, let's wait around to see if #1 dies before he can take it. Oy!
The day has not been a total bust. The kids and I had planted the garden before Salt Lake called. We visited Grandma and Grandpa Lovell's grave; ate lunch at Jan's; bought an ivy vine from Home Depot.
I traded a child with Jan for the night; JA stayed to play wii and with her boys, Marley came to play with my girls. It's a good trade; while I love the boy so very much, he's the one that requires that my energies be thoroughly sucked out before he can go to bed. There's just not any to spare, tonight. It's likely he'll feel more loved if he's not next to me.
Friday, May 23, 2008
Strawberry towers and Good Grit
I made strawberry towers over the ugly satellite poles in the back yard. Why there are two poles, I will never know, but I have high hopes of either having cascading strawberries, or letting them die when we go for transplant. I hope they die sooner than later.
The welcome distraction for the night was provided by Ursula. She was trolling through the neighborhood, looking for a connection to what used to be her normal life. I was the only person crazy enough to be working outside in the rain, so she stopped to say hi. She invited us to come swimming at the AmericInn where she and Mercedes are staying; I took the kids and we had a fabulous time.
Ursula is the new queen of the Good Grit Award. I am so proud of her for pressing forward with steady resolve and great faith. It will be three weeks, tomorrow, since she buried Rendell.
The welcome distraction for the night was provided by Ursula. She was trolling through the neighborhood, looking for a connection to what used to be her normal life. I was the only person crazy enough to be working outside in the rain, so she stopped to say hi. She invited us to come swimming at the AmericInn where she and Mercedes are staying; I took the kids and we had a fabulous time.
Ursula is the new queen of the Good Grit Award. I am so proud of her for pressing forward with steady resolve and great faith. It will be three weeks, tomorrow, since she buried Rendell.
Thursday, May 22, 2008
Do I look too good, today?
"Do I look too good, today? Will they will think that I am not sick enough to be on disability; that I am just milking the system?"
No, you do not look too good. Anyone who passes you will notice that you are an odd shade of puce and emaciated. It's quite safe to say that there is zero chance that anyone will think that you are faking it.
Scott informed me this morning that he was going to sit in on an illustration class, this afternoon. It was great to see him in a shirt and tie; excited to see students and colleagues. I think he had a great time. He seems much happier.
For Scott, not working is one of the hardest blows of this gig; he's such a passionate teacher. I can't hardly wait until he goes back......... not that it's been entirely unpleasant to be with him 24/7/365, under extreme stress, without much of a break. Our relationship has weathered it quite well, but......... I wouldn't really recommend it to anyone.
I spent a chunk of the day throwing away Angela's junk. She has sold her house and is moving into a travel trailer to explore the world. I'm hoping she will keep in touch. I don't know what I'd do without her friendship.
My gut is restless. It feels a bit like the warnings I used to get before something really big, but it might be my brains eating themselves, again. I'm so burned out, it's hard to tell the difference, anymore.
No, you do not look too good. Anyone who passes you will notice that you are an odd shade of puce and emaciated. It's quite safe to say that there is zero chance that anyone will think that you are faking it.
Scott informed me this morning that he was going to sit in on an illustration class, this afternoon. It was great to see him in a shirt and tie; excited to see students and colleagues. I think he had a great time. He seems much happier.
For Scott, not working is one of the hardest blows of this gig; he's such a passionate teacher. I can't hardly wait until he goes back......... not that it's been entirely unpleasant to be with him 24/7/365, under extreme stress, without much of a break. Our relationship has weathered it quite well, but......... I wouldn't really recommend it to anyone.
I spent a chunk of the day throwing away Angela's junk. She has sold her house and is moving into a travel trailer to explore the world. I'm hoping she will keep in touch. I don't know what I'd do without her friendship.
My gut is restless. It feels a bit like the warnings I used to get before something really big, but it might be my brains eating themselves, again. I'm so burned out, it's hard to tell the difference, anymore.
rain
It's been a nice rain. I prayed it here, because I didn't want to water my lawn. That might be like praying that the sun would rise, and feeling somewhat responsible for it being morning.
I swear, Scott is dying. Everyday, he is just a little more dead. He's been hovering for so long there at death's door, and sometimes, it's all I can do not to kick him the rest of the way in.
I wonder if prayer really isn't a way to tell the Lord what we want; but more of a way to express gratitude, and discover what the Lord wants for us. Surely, He, knowing everything, would not steer us wrong. Granted, I have no idea what he's thinking with this transplant deal. I risk being struck by lightning doubting His wisdom; asking questions like, "Are you sure? Really. Are you really, really sure this is what you intended?" The dilemma is such that it might not be a good idea to go outside with the rain and all. I'm a high risk doubter, although I think that lightening strike might be a good way to go.
I swear, Scott is dying. Everyday, he is just a little more dead. He's been hovering for so long there at death's door, and sometimes, it's all I can do not to kick him the rest of the way in.
I wonder if prayer really isn't a way to tell the Lord what we want; but more of a way to express gratitude, and discover what the Lord wants for us. Surely, He, knowing everything, would not steer us wrong. Granted, I have no idea what he's thinking with this transplant deal. I risk being struck by lightning doubting His wisdom; asking questions like, "Are you sure? Really. Are you really, really sure this is what you intended?" The dilemma is such that it might not be a good idea to go outside with the rain and all. I'm a high risk doubter, although I think that lightening strike might be a good way to go.
Wednesday, May 21, 2008
As good as it can get
I kept busy with things outside of my home territory: helping Angela move, helping Bev unload her truck, watching N's presentation at school, taking Scott to vote on the school bond, JA to a dr appointment............... and come home, and deal with dinner, and homework, and bedtime, and laundry. Overall, it was another fair day. Since everyone is breathing and went to bed feeling loved, it might even chalk up as a good day; as good as it can get, I guess.
Monday, May 19, 2008
A fine day
If the current rule continues, I will be twice as ugly in ten years; wishing I looked as good as I did right now. I'd better be grateful for the current Mahana, and hope it doesn't double sooner.
It's been a fine day. Scott weeded part of the huge flower bed in back and planted some flowers. He even walked up Cress Creek with us, tonight, for family home evening.
It's been a fine day. Scott weeded part of the huge flower bed in back and planted some flowers. He even walked up Cress Creek with us, tonight, for family home evening.
Sunday, May 18, 2008
my address
I can tell, who from church, reads my blog by what they say. Cindy usually says, "How are you doing, today?" today being the operative word, which I love, but offered, "I love you." with sincere hugs for support this afternoon. It's a relief not to have to explain things.
By the same token, when Scott offered my address to the bishop, who had pulled us aside for an update, I couldn't handle giving it out to anyone else. I'm almost....... no, I really am more comfortable allowing complete strangers read my vulnerabilities. They won't be won't be telling me, "Wow, you look good for someone whose brains have leaked out." Not that anyone has ever said that; I just feel..... I don't know.
This blog is a lot more personal than I had originally intended. Perhaps, because it is the only thing I have control over, I can't seem to stop. Does that mean I don't have control over it?
Anyway, Scott had a decent day. He went to all 3 hours of church and to dinner at his mother's house. The last two days, he has slept all but a few hours, when I insisted that he eat. It's nice to see the yellow of his eyes, again.
By the same token, when Scott offered my address to the bishop, who had pulled us aside for an update, I couldn't handle giving it out to anyone else. I'm almost....... no, I really am more comfortable allowing complete strangers read my vulnerabilities. They won't be won't be telling me, "Wow, you look good for someone whose brains have leaked out." Not that anyone has ever said that; I just feel..... I don't know.
This blog is a lot more personal than I had originally intended. Perhaps, because it is the only thing I have control over, I can't seem to stop. Does that mean I don't have control over it?
Anyway, Scott had a decent day. He went to all 3 hours of church and to dinner at his mother's house. The last two days, he has slept all but a few hours, when I insisted that he eat. It's nice to see the yellow of his eyes, again.
Friday, May 16, 2008
normalish
"I probably didn't tell you this, but I decided that Scott could have my liver. I thought about it a long time before I told Eunice; someone has since told me they would never kill a person to get their organs."
R. Jack Layton is a retired pilot who tested top secret planes, such as the Blackbird, for the CIA during the Cold War era. He is likely the fastest man in the world, having cruised routinely at 3 1/2 times the speed of sound, reaching sometimes up to almost 4 times the speed of sound; 20 miles up in the atmosphere. It is a cruel irony that he now suffers from Parkinson's disease; wheelchair bound and shriveling.
Anyway, he's in our ward. His wife is his equal in personality and achievements. It's great fun to visit them, and since N needed to do an interview for a school assignment, I was more than happy to take her.
"I'm disappointed; lived a good life; wish the Lord would just take me. They could put me on a table next to Scott and give him my liver."
Wow. It took a bit to assimilate what he had said, gather my jaw off the floor, and regain my composure. What do you say to something so incredibly amazing? I'm still floored.
We all had good reasons for not sending them on the father/son camp out, but needed a good substitute activity to appease the little men. A perfect night for tinfoil dinners, the kids played with the parachute; Scott helped with the fire and stayed for most of the party. How wonderful to have the neighbors over to eat and laugh; a nice change of mode, doing something normalish.
R. Jack Layton is a retired pilot who tested top secret planes, such as the Blackbird, for the CIA during the Cold War era. He is likely the fastest man in the world, having cruised routinely at 3 1/2 times the speed of sound, reaching sometimes up to almost 4 times the speed of sound; 20 miles up in the atmosphere. It is a cruel irony that he now suffers from Parkinson's disease; wheelchair bound and shriveling.
Anyway, he's in our ward. His wife is his equal in personality and achievements. It's great fun to visit them, and since N needed to do an interview for a school assignment, I was more than happy to take her.
"I'm disappointed; lived a good life; wish the Lord would just take me. They could put me on a table next to Scott and give him my liver."
Wow. It took a bit to assimilate what he had said, gather my jaw off the floor, and regain my composure. What do you say to something so incredibly amazing? I'm still floored.
We all had good reasons for not sending them on the father/son camp out, but needed a good substitute activity to appease the little men. A perfect night for tinfoil dinners, the kids played with the parachute; Scott helped with the fire and stayed for most of the party. How wonderful to have the neighbors over to eat and laugh; a nice change of mode, doing something normalish.
Thursday, May 15, 2008
breathe
"And how are you making it in your great trial." She had hugged me, but held fast to my forearms.
Sometimes, it's all I can do to breathe.
There's no reason to lie to Aunt Faye. After standing by Uncle Norman all these years through so much, and now, standing beside his casket to greet a slivered fraction of the people he touched; she knows exactly what I'm going through, only a million times more. We've hardly spoken, but I swear, these kind of experiences can turn strangers into soul sisters.
Norman was always so incredibly grateful and making the best of every little moment. He'll be missed.
C's poem of the day was dedicated to Scott, and goes as follows:
Roses are red,
Violets are blue,
Bananas are yellow,
and so are you.
"Do ya' like it? Huh, Dad?"
Sometimes, it's all I can do to breathe.
There's no reason to lie to Aunt Faye. After standing by Uncle Norman all these years through so much, and now, standing beside his casket to greet a slivered fraction of the people he touched; she knows exactly what I'm going through, only a million times more. We've hardly spoken, but I swear, these kind of experiences can turn strangers into soul sisters.
Norman was always so incredibly grateful and making the best of every little moment. He'll be missed.
C's poem of the day was dedicated to Scott, and goes as follows:
Roses are red,
Violets are blue,
Bananas are yellow,
and so are you.
"Do ya' like it? Huh, Dad?"
Wednesday, May 14, 2008
love
I love my children, I really do, but sometimes I wonder if I might love the bus driver just a teensy bit more.
Tuesday, May 13, 2008
lunch
Scott ate lunch which makes it official; he is not going in to get his drain adjusted, today. He says he isn't having pain; I guess we will have to go home. I'm easy to the point of, "Whatever makes you happy, dear." I am feeling morbidly optimistic with the beautiful, outdoorsy weather; hoping not to be gone very long.
Sunday, May 11, 2008
Blokus
"You won't play because you know I'll beat your socks off." It was said in jest, but he was definitely asking for it.
My favorite story about Gary is when they were camping; he storms into the tent, and throws the tube of vaginal cream;
"THAT.... IS NOT........ TOOTHPASTE!"
Adele was too tired. Scott retreated with an experienced, "Not with her, I'm not." shake of his head. Lacking enough players, we each chose two colors.
I'm so frustrated; they can't see Scott at interventional radiology until late Tuesday afternoon to adjust the drain to a more comfortable position. He's fine as long as he's laying down, but he can't spend the next however-long-it-takes-in-hell-to-get-a-transplant in bed. It's going to be a medicinal trick just to get him back to the hospital; and to have to wait...........
I had planned on being home to see JA open the huge, superclearanced, Batman lego set I found for his birthday. Between that and everything else, I have a great deal of tearful angst; decimating someone's inflated, yet durable ego with a harmless game of Blokus is, by far, the least destructive outlet I can find.
My favorite story about Gary is when they were camping; he storms into the tent, and throws the tube of vaginal cream;
"THAT.... IS NOT........ TOOTHPASTE!"
Adele was too tired. Scott retreated with an experienced, "Not with her, I'm not." shake of his head. Lacking enough players, we each chose two colors.
I'm so frustrated; they can't see Scott at interventional radiology until late Tuesday afternoon to adjust the drain to a more comfortable position. He's fine as long as he's laying down, but he can't spend the next however-long-it-takes-in-hell-to-get-a-transplant in bed. It's going to be a medicinal trick just to get him back to the hospital; and to have to wait...........
I had planned on being home to see JA open the huge, superclearanced, Batman lego set I found for his birthday. Between that and everything else, I have a great deal of tearful angst; decimating someone's inflated, yet durable ego with a harmless game of Blokus is, by far, the least destructive outlet I can find.
Saturday, May 10, 2008
The scenic route
They switched out the drain, he wasn't having pain, we left the hospital, went to IKEA, ran into his mother and sisters there, visited my sister, started home, and then came back thinking it would be a good idea to be closer to the hospital. He was in so much pain.
I have an extensive arsenal of narcotics; nothing was working. I'm grateful we could come back to Adele's and lay the man down. Gary gave him a blessing; within minutes he was pain free and went to sleep.
All in all, I guess it was a better day than I had expected. Really, I like days where you get 1/3 of the way home and have to come back. It's the scenic route.
I have an extensive arsenal of narcotics; nothing was working. I'm grateful we could come back to Adele's and lay the man down. Gary gave him a blessing; within minutes he was pain free and went to sleep.
All in all, I guess it was a better day than I had expected. Really, I like days where you get 1/3 of the way home and have to come back. It's the scenic route.
Friday, May 9, 2008
What's purgatory?
"So, what's purgatory, Mom?"
He was reading over my shoulder.
It's sitting with you, while you scream about doing homework. It generally refers to hell.
gasp.......... "Yeah, mom. This is purgatory."
Scott and I came down, tonight. We love it here at the Garcia's. There's always something to laugh about, and they feed us great food no matter what the hour. Thank you.
Scott's scheduled to have his drain changed out in the morning. Plugged and painful, we don't have any choice. Always an expletive producing experience for everyone, including the drs; it's a darker definition for purgatory I had hoped never to see again.
.....................my thoughts exactly.
He was reading over my shoulder.
It's sitting with you, while you scream about doing homework. It generally refers to hell.
gasp.......... "Yeah, mom. This is purgatory."
Scott and I came down, tonight. We love it here at the Garcia's. There's always something to laugh about, and they feed us great food no matter what the hour. Thank you.
Scott's scheduled to have his drain changed out in the morning. Plugged and painful, we don't have any choice. Always an expletive producing experience for everyone, including the drs; it's a darker definition for purgatory I had hoped never to see again.
.....................my thoughts exactly.
Thursday, May 8, 2008
Thank you, Lord
"Hey! I came to visit Scott. Is he around? Can he visit?"
Uh, no, I'm sorry. He's not feeling very well.
It was powerful reinforcement that God loves me.
"I was passing by. Scott's been on my mind for weeks. I've been really busy; trying to become a senator; running all over the state. Just wanted to let him know that he's in my prayers all the time."
Wow. Thank you. How's your family?
I read through most of the night; needing an escape; pretty much asking for trouble; awoke with my most repellingly indecent Mahana commanding the day, but felt strongly compelled to shower and get dressed before I went back to bed.
"Fine. We're all fine. Yeah, Scott's solid celestial material; I just hope he doesn't get there too soon......... heh heh."
Uh, thank you. I'll let him know you stopped by.
It was an odd, but kind gesture. I'm just so grateful the natural Mahanas were reigned in. Thank you, Lord.
Oh! I totally forgot Scott's parents picked up Emalee at the airport and are coming........ any minute even. Oh! I'm so grateful I showered.
Uh, no, I'm sorry. He's not feeling very well.
It was powerful reinforcement that God loves me.
"I was passing by. Scott's been on my mind for weeks. I've been really busy; trying to become a senator; running all over the state. Just wanted to let him know that he's in my prayers all the time."
Wow. Thank you. How's your family?
I read through most of the night; needing an escape; pretty much asking for trouble; awoke with my most repellingly indecent Mahana commanding the day, but felt strongly compelled to shower and get dressed before I went back to bed.
"Fine. We're all fine. Yeah, Scott's solid celestial material; I just hope he doesn't get there too soon......... heh heh."
Uh, thank you. I'll let him know you stopped by.
It was an odd, but kind gesture. I'm just so grateful the natural Mahanas were reigned in. Thank you, Lord.
Oh! I totally forgot Scott's parents picked up Emalee at the airport and are coming........ any minute even. Oh! I'm so grateful I showered.
Wednesday, May 7, 2008
I didn't burn the bridge just in case, but I told Dr Z I wasn't coming back. Really, what can he do that a blog can't do even better? Sure, there's the prescription issue, but my gynecologist can use a pen just fine, and he only wants to see me once a year. Besides, why not get all your medical vulnerabilities over with in one fell swoop? Really.
We went to lunch for our anniversary. Not incredibly romantic, but Scott ate well; that in itself is enough to thrill me these days.
We went to lunch for our anniversary. Not incredibly romantic, but Scott ate well; that in itself is enough to thrill me these days.
Tuesday, May 6, 2008
today
"They're my buddies, mom."
We'd spent a good 20 minutes collecting rollie-pollie bugs. Some had not tolerated her loves very well and were no longer rolling.
"Let's take them to Barett's house and feed them to the chickens."
So, we did.
Continuing on the murderous theme, I sprayed weeds; quack grass in my garden spot.
Wanting to complete my list of 101 ways to drive yourself crazy, I went to the middle school band concert with the girls. It wasn't that bad. I just don't feel like talking to anyone.
I think Scott might have had a fair day. For some strange reason, he stayed far away; perhaps, out a sense of self-preservation.
I am, at this very moment, considering hiring an exorcist for my son. With a field trip at risk, he has 5 pages of late homework, but has spent 7 hours in a possessed, self-imposed purgatory. The only thing working for him is to race the timer; three problems in three minutes. He keeps asking me to pull him and do homeschool.
Pfffft.......... because this has been so much fun?
We'd spent a good 20 minutes collecting rollie-pollie bugs. Some had not tolerated her loves very well and were no longer rolling.
"Let's take them to Barett's house and feed them to the chickens."
So, we did.
Continuing on the murderous theme, I sprayed weeds; quack grass in my garden spot.
Wanting to complete my list of 101 ways to drive yourself crazy, I went to the middle school band concert with the girls. It wasn't that bad. I just don't feel like talking to anyone.
I think Scott might have had a fair day. For some strange reason, he stayed far away; perhaps, out a sense of self-preservation.
I am, at this very moment, considering hiring an exorcist for my son. With a field trip at risk, he has 5 pages of late homework, but has spent 7 hours in a possessed, self-imposed purgatory. The only thing working for him is to race the timer; three problems in three minutes. He keeps asking me to pull him and do homeschool.
Pfffft.......... because this has been so much fun?
Monday, May 5, 2008
fortune
I would do anything to get Scott to eat; even eat at Fong's. The food was ok, but I'm not sure Scott will go again; his fortune cookie said something like, "You will receive a long awaited gift three months from this date." Oy!
It's terrible to take any kind of stock in fortune cookies, but I'm just superstitious enough to consider them. It definitely reflects my crazed desperation to find some sign that the tide is turning in our favor. In general, I feel crazy, but oddly fortunate.
Scott was able to help bathe and put the kids to bed. I've felt like a single parent for so long; I'm grateful for the support.
It's terrible to take any kind of stock in fortune cookies, but I'm just superstitious enough to consider them. It definitely reflects my crazed desperation to find some sign that the tide is turning in our favor. In general, I feel crazy, but oddly fortunate.
Scott was able to help bathe and put the kids to bed. I've felt like a single parent for so long; I'm grateful for the support.
Sunday, May 4, 2008
It was a struggle to get to church, but I'm grateful I made it. This last week left me empty and discouraged. I needed comfort, strength, and there it was; not so much in the sacrament meeting, but in taking the sacrament itself. It was not the usual hohum, watching kids pick their nose experience; but rather a desperately needed spiritual refueling; intimate, real, precious.
My family and extended family all fasted for Scott, today. I am ever so grateful for their faith as it would seem that mine has been torched to the ashes of exhaustion. My grandmother, especially, will be thrilled to know that we have felt their prayers and love.
Scott had a good day; not as good as yesterday, but much better than par. The kids are happy to be home, although they had a blast with cousins and sleepovers. I am headed to bed with the prayer that Scott will sleep, and that God will bless us, every one. Heaven knows we all need it.
My family and extended family all fasted for Scott, today. I am ever so grateful for their faith as it would seem that mine has been torched to the ashes of exhaustion. My grandmother, especially, will be thrilled to know that we have felt their prayers and love.
Scott had a good day; not as good as yesterday, but much better than par. The kids are happy to be home, although they had a blast with cousins and sleepovers. I am headed to bed with the prayer that Scott will sleep, and that God will bless us, every one. Heaven knows we all need it.
Saturday, May 3, 2008
Roman
"I graduated magnum cum laude. It said so on my diploma."
What does that mean?
"How am I supposed to know? I don't speak Roman."
Love ya', Renae.
Scott said the day felt like a vacation, and indeed it was. A day spent laughing; siblings and in-laws, cousins, food and games; a much needed gift. It's nice to come from a family where everyone is a party-in-a-box. Thank you, thank you.
What does that mean?
"How am I supposed to know? I don't speak Roman."
Love ya', Renae.
Scott said the day felt like a vacation, and indeed it was. A day spent laughing; siblings and in-laws, cousins, food and games; a much needed gift. It's nice to come from a family where everyone is a party-in-a-box. Thank you, thank you.
Friday, May 2, 2008
We had to go for labs. I couldn't ignore the fact that he is dramatically weaker and more uncomfortable in spite of having gone for fluids, this morning. Drats! There doesn't seem to be an infection, so any word from SLC is going to be, "Liver failure stinks."
My mom mercifully came to get the kids. They will have more fun at the house there, anyway; Renae is back from Ecuador and visiting. She's a party-in-a-box kind of person, and almost always brings surprises.
My mom mercifully came to get the kids. They will have more fun at the house there, anyway; Renae is back from Ecuador and visiting. She's a party-in-a-box kind of person, and almost always brings surprises.
Thursday, May 1, 2008
"You're joking me, mom."
No. Really, babies come out of the mom's bum.
"Like an egg?"
That's a chicken, C.
"Oh........... but it would be all messy."
They just wipe it up, and hand it to the mom.
"You're kind of jokin'. Huh mom?"
I'm not joking.
"Soooooo, remember when I came out of your bum all cute and happy?"
Yes, but that's not something we talk about with other people. It's private.
"Oh, yeah...... Remember, I'm going to marry Caleb? He's a boy."
Well, remember we don't really worry about getting married until after college?
"Oh, yeah................ " and she runs off, repeatedly singing the word "privacy".
I'm wondering how long it will take for her to get that story out. Not long, is my guess.
No. Really, babies come out of the mom's bum.
"Like an egg?"
That's a chicken, C.
"Oh........... but it would be all messy."
They just wipe it up, and hand it to the mom.
"You're kind of jokin'. Huh mom?"
I'm not joking.
"Soooooo, remember when I came out of your bum all cute and happy?"
Yes, but that's not something we talk about with other people. It's private.
"Oh, yeah...... Remember, I'm going to marry Caleb? He's a boy."
Well, remember we don't really worry about getting married until after college?
"Oh, yeah................ " and she runs off, repeatedly singing the word "privacy".
I'm wondering how long it will take for her to get that story out. Not long, is my guess.
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