The latest on Lisa, Christmas 2007
Home sweet home in Oro Valley Arizona
Ours is a hom
e I wouldn’t exactly call “sweet” and certainly it’s not peaceful with a little, lovable monster like Michael doing his best impression of Godzilla destroying Tokyo on a daily basis. Still we have all the personnel, medicine, equipment and supplies you’d expect in a state of the art long term acute care facility. Lisa has an experienced, compassionate live-in, full-time caregiver, Patrice (certified as personal, supervisory and directed caregiver) to provide her medicines, tube feeding and therapies, her daily shower and other necessary care from 7 in the morning until after 8 at night. When Lisa needs to see a doctor, her primary care doc, board certified in family medicine makes a house call. Routine tests, x-rays are all done at home and delivered to the labs and specialists for interpretation with the results reported back to Lisa’s doctor and family. When Lisa’s baclofin pump needs re-filling that too, is done at home by visiting nurses.
Of course,
some visits to Dr’s offices (like for her board-certified neurologist) must be made and when the need arises, Coyote Run, a local, shuttle service provided for disabled residents of Oro Valley, is available for scheduled appointments during the workweek. On those days, Lisa and her caregiver Patrice load up together with a “go-bag” of essential supplies and equipment. Even though the service isn’t available for weekends, urgent medical matters or for trips to church or other outings for Lisa, it has been a real blessing.
I have found a local business that rents wheelchair vans from their sales inventory and that let us take Lisa to Dad and Sherry’s home for Thanksgiving, to church, one of Tucson’s lovely parks, and shopping, all with Michael’s indispensable help! As beautiful as our home is, I really believe it’s important that we include Lisa in these “non-essential” activities with her family, so it’s something I’m going to continue to work on.
Dad and Sherry have continued their support for our ability to care for Lisa at home by helping with Michael. Dad (aka Poppy) picks Michael up in the morning, letting me get ready to go to work. Our little bundle of boy gets bathed, dressed and dragged to his Montessori school where he’s made truly amazing progress in “practical living skills” as you can see from the pictures, Michael helps with me in the kitchen cooking, he’s all about “clean-up” time i.e. picking up what he’s gotten out and feeding himself at his little table. His vocabulary increase in size and quality everyday, and is only slightly populated by variations of “no”
So with all this in place, we entered the holiday season. Here’s a recap of how well it went, with Dad adding pictures of it all here and in the attached photo show:
A family Thanksgiving in Mimi and Poppy’s new home in the desert
My stepsister, Dana, her husband Kevin and their two wonderful children Andrew and Allison came from Minneapolis for Thanksgiving. My sister Debra also flew from slightly warmer Sarasota, Florida. Sherry was overjoyed to have her out of state family join us for their first holiday in her new home in the desert. We were all rewarded with wonderful meals the evening before and the afternoon of Thanksgiving. In between feasting, Sherry (aka Mimi) led the kids in board games, arts and crafts projects and general fun. Michael and his cousins had a blast together as you can see from the pictures Dad has attached in the accompanying photoshow. I’ve offered Allison a job as Michael’s babysitter if we can just work out the drive time to Minneapolis. Dana and Kevin are a couple Lisa and I really bonded with when we were together in Illinois the Thanksgiving before Michael was born. It was good to get to visit, drink good wine and plan future adventures together.
No one has worked harder or given up more to help us with Lisa than Sherry, so having her “nested” and having a great time with her kids and grandkids was really special. Now we just need to get my other step sister Chris and her brood out here!
“Over the river and through the woods….” A trip to see Grandma!
Commitments that had been made earlier in the fall that would have tied me to Tucson throughout December fell through leaving me with an opportunity for Michael to see his grandma in Illinois. My mom, you’ll recall, is a stroke and cancer survivor and is unable to travel. She’s recently moved to a really nice facility in Galesburg, just a few minutes from where my sister Laura and her husband James live. So, with Patrice, Sherry and Dad looking after Lisa, Michael and I loaded up for the long flights and headed out.
Flying is no big deal to our son. Escalators, though, are an entirely different matter. He got mad in Dallas when 3 round trips up and down weren’t enough and I had to drag him off for the connecting flight. Our flight arrived late and even though I had a rental car, my sister Debra (again in from Sarasota) drove to the airport to watch Michael while I installed the car seat in the frozen darkness. This is the stuff I wouldn’t have thought of asking for help with as a new dad. Our good friend Tracy Miller pointed out that while she has husband Carl to corral her twins in such situations I’d need help that Deb was glad to offer.
Our visit was wonderful. Grandma’s joy was unmatched by anything I’ve seen. Mom’s had some significant setbacks recently and feared she’d not get another chance to see her family. As it was, we darn near had a reunion! The other residents of the care facility were quite taken with our tow-headed wonder. We were all able to share meals and good times there with mom before heading back to Laura and James beautiful home for the nights of our visit.
One morning of our visit we went to Laura’s job. Laura is the women’s ministry director of a rapidly growing Baptist church. She and James recently completed a church-sponsored trip to Africa to help women in Nigeria fight the AIDS epidemic. While Lisa and I attend Mass and have decided to raise Michael Catholic I, of course, welcomed the Tucson-based Baptist minister Laura had come and pray for Lisa in those first terrifying days and feel great pride and respect for Laura and her church’s efforts.
Michael got his first, hilarious exposure to snow (what do you expect from a little desert rat?). All too soon, and yet with a huge desire to get home, Michael and I began our return trip. All was well till the looooooong flight from Chicago to Tucson. And while 4 hours is long by any measure, a screaming, inconsolable lap child makes it even tougher. I kept wondering when the air marshals were going to sack us up or the captain was going to put us down in Omaha! But once we were in our old reliable Toyota (134,000 miles and going strong) he was asleep before we left the parking lot.
Christmas with a visit from Santa, and Michael’s Godparents
With Christmas upon us, we began preparations for a holiday visit from Michael's godparents, Jack and Napua Davis. In addition to a legendary career in law enforcement, Jack is an amazing cook, and with Napua's Hawaiian cooking heritage, cooking for them is pretty intimidating. Of course, all that disappears with their great company and a little (ok, a lot of) wine.
We renewed a Christmas tradition of decorating the tree on Christmas Eve. Ok, ok, the “renewal” was prompted by me not getting it done sooner. But Dad, Michael and I found a beautiful, fresh, ginourmous tree, and with everyone helping while I finished fixing dinner, the tree was decorated faster than old St. Nick’s “Ho, Ho, Ho!”
The last time we’d had these lights and decorations out was the Christmas before Michael was born. This was the first one Lisa and I’d had in our home, our first as a married couple, and Lisa had taken great care when everything was put away that year to label and mark everything so we’d know what went where for future years. So it very much felt like Lisa was helping me in the yard string luminarias and other lights when I had her handwritten notes from that very happy time telling me what to do.
On Christmas Eve, Lisa’s notes added her “two cents” as she sat with us in her chair while we completed decorating the house. Even though Lisa isn’t able to be responsive to us we all prayed that she felt the peace and joy we did at being together in her home.
Christmas morning came, and since Michael at 20 months still doesn’t “get it” the grown-ups took their sweet time at getting up and over here. We had breakfast, coffee and Patrice got Lisa gussied up for the occasion. Michael really scored big, and while last Christmas he was interested only in tearing the paper, this year, he figured out the contents were the real fun! From his family and friends he got thoughtful and thought-challenging toys, videos, books and clothes heavily represented by Thomas the tank engine and friends, along with many other much welcomed gifts, including gingerbread man cookies from his grandmother Carmen from Oklahoma.
I’d struggled with gifts between Lisa and me but it all became clear the way these things do. We got a Christmas call from Lisa’s nephew Collin and we learned he’s off on a mission to Mexico during his spring break with his church. Imagine a kid in this “selfish” age in which we live; excited about giving up his vacation to help others in real need. It gives you some idea why Lisa loves this young man so much. When I learned we could help with the cost of the trip, my Christmas gift problem was solved!
Christmas dinner was truly special if not exactly on time. The world’s best neighbors, Jim and Ann Peterson who were putting Jack and Napua up, joined us along with our friend Brad Holland. Brad had provided Lisa and I with our first place to stay here in Tucson and many good times thereafter despite being a native Nebraskan. Lisa and all the ladies looked beautiful and Michael was a real Christmas angel.
Fun and family for the New Year
More great meals and good times were enjoyed in the days that followed. While I worked Napua and Jack said “our turn!” and put my cooking to shame with all different Asian/island specialties Napua has at her command together with the down-home Oklahoma fare she and Jack pair up on. Lisa joined them in the kitchen as she does me. During the day, Jim and Ann took Jack and Napua to the San Xavier mission. They saw and photographed many gains in the restoration the 500 year old mission since Lisa and I’d taken my mom there during her last visit.
Dad, Jack, Jim and my partner at the county attorney’s office, Chris Ward, hit the links, with them hitting back, to hear them tell the tale. Dad proved that Wintory guys make up in enthusiasm what we lack in skill and a good time was had by all. Afterwards, Jim and Ann hosted everyone to a lovely dinner at a local hotspot that was more than Michael could handle so he and I stayed at home with his mom and Thomas the tank engine, my new idea of a good time!
Napua and Jack’s food festival peaked on New Year’s Day with traditional black eyed peas,(for good luck) fried chicken, greens and thin, crisp (no, not cakey, Jack) cornbread. YUM! The day was warm and beautiful and while Napua and Jack were doing their thing I was smoking pork shoulders, beans and a turkey for tailgating the following day.
Tailgating? Oh yeah, there was one disaster this holiday season. The University of Oklahoma’s performance at the fiesta bowl against West Virginia. Despite the abject humiliation of the game, Jack, Jim, Chris and I had a helluva good time. Michael, Dad and Sherry hung out while Patrice looked after Lisa for the day. We left early, got a great tailgating spot near the porta potties (hey, with all that beer, whatyaexpect?) set up our tables, and chairs, popped open the cooler and few cold ones, and when hunger struck, tore into the bbq which was- according to informed sources- deeelicious. The day was warm, clear and the crowds were friendly, all perfect. Until… oh well, that’s what makes the college game so great. It was all still great fun.
Sadly, the next day, Jack and Napua had to begin their trip home and our holiday season came to an end with tears and hugs and blueberry pancakes.
A blessed time….
It’s funny how it all works. We’re so much worse off than where I’d thought we’d be two years ago when Lisa, happy and near-term with this incredible life growing in her, and I decorated the house together. But we are so much better off than where I feared a year ago when our lives, like these Christmas lights, remained boxed up. Last Thanksgiving’s near-death traffic accident while I was driving up to Phoenix; Christmas with Michael and me on a pull-out bed in Lisa’s hospital room, opening presents by the light of her heart-monitor and the fight over Lisa’s getting hyperbaric treatment all come to mind. Even in those times though, we were lifted up by the kindness, prayers and unflinching, untiring support of our friends and family here, at St. Joe’s and across the country.
The only lesson I draw from all this is that God’s grace gives us reason for humble gratitude during times of despair and joy.
The New Year will have many challenges and it’s not waiting to present them. We’ve been cooling our heels since August for blue cross to tell us if they’ll pay for the hospital bed Lisa’s doctors believe she needs. I thought perhaps they were waiting for the new year when we had to start our deductible again. Well, they were waiting, but that apparently wasn’t their thought and yesterday I got the denial letter. It says, that because Lisa doesn’t yet have bedsores we don’t need a bed her doctor says we need to prevent them. Even sillier, they said that because the mattress she has was ordered by her doctors at Select over half a year ago, the order of her doctor now doesn’t count!
The generosity of so many of you has given us enough to get one of the refurbished beds. These beds cost as much as a wheelchair van, so I’d been holding off till blue cross decided hoping I could do both. As it stands, I’ll get on these guys and we’ll figure out how to get-r-done!
I’m finishing this update, like most of my dinners, just a little late, on Sunday January 6th 2008. It’s a rainy day here in the desert, so taking down the outdoor Christmas lights is waiting a bit longer. Michael has me playing catch with him inside the house while Lisa’s getting her shower. When it dries up I’ll store the lights the way we did that last happy time and I’ll save Lisa’s notes on the strings of lights to help me again next Christmas.
Richard Wintory
Home sweet home in Oro Valley Arizona
Ours is a hom
e I wouldn’t exactly call “sweet” and certainly it’s not peaceful with a little, lovable monster like Michael doing his best impression of Godzilla destroying Tokyo on a daily basis. Still we have all the personnel, medicine, equipment and supplies you’d expect in a state of the art long term acute care facility. Lisa has an experienced, compassionate live-in, full-time caregiver, Patrice (certified as personal, supervisory and directed caregiver) to provide her medicines, tube feeding and therapies, her daily shower and other necessary care from 7 in the morning until after 8 at night. When Lisa needs to see a doctor, her primary care doc, board certified in family medicine makes a house call. Routine tests, x-rays are all done at home and delivered to the labs and specialists for interpretation with the results reported back to Lisa’s doctor and family. When Lisa’s baclofin pump needs re-filling that too, is done at home by visiting nurses.Of course,
some visits to Dr’s offices (like for her board-certified neurologist) must be made and when the need arises, Coyote Run, a local, shuttle service provided for disabled residents of Oro Valley, is available for scheduled appointments during the workweek. On those days, Lisa and her caregiver Patrice load up together with a “go-bag” of essential supplies and equipment. Even though the service isn’t available for weekends, urgent medical matters or for trips to church or other outings for Lisa, it has been a real blessing.I have found a local business that rents wheelchair vans from their sales inventory and that let us take Lisa to Dad and Sherry’s home for Thanksgiving, to church, one of Tucson’s lovely parks, and shopping, all with Michael’s indispensable help! As beautiful as our home is, I really believe it’s important that we include Lisa in these “non-essential” activities with her family, so it’s something I’m going to continue to work on.
Dad and Sherry have continued their support for our ability to care for Lisa at home by helping with Michael. Dad (aka Poppy) picks Michael up in the morning, letting me get ready to go to work. Our little bundle of boy gets bathed, dressed and dragged to his Montessori school where he’s made truly amazing progress in “practical living skills” as you can see from the pictures, Michael helps with me in the kitchen cooking, he’s all about “clean-up” time i.e. picking up what he’s gotten out and feeding himself at his little table. His vocabulary increase in size and quality everyday, and is only slightly populated by variations of “no”
So with all this in place, we entered the holiday season. Here’s a recap of how well it went, with Dad adding pictures of it all here and in the attached photo show:
A family Thanksgiving in Mimi and Poppy’s new home in the desert
My stepsister, Dana, her husband Kevin and their two wonderful children Andrew and Allison came from Minneapolis for Thanksgiving. My sister Debra also flew from slightly warmer Sarasota, Florida. Sherry was overjoyed to have her out of state family join us for their first holiday in her new home in the desert. We were all rewarded with wonderful meals the evening before and the afternoon of Thanksgiving. In between feasting, Sherry (aka Mimi) led the kids in board games, arts and crafts projects and general fun. Michael and his cousins had a blast together as you can see from the pictures Dad has attached in the accompanying photoshow. I’ve offered Allison a job as Michael’s babysitter if we can just work out the drive time to Minneapolis. Dana and Kevin are a couple Lisa and I really bonded with when we were together in Illinois the Thanksgiving before Michael was born. It was good to get to visit, drink good wine and plan future adventures together.
No one has worked harder or given up more to help us with Lisa than Sherry, so having her “nested” and having a great time with her kids and grandkids was really special. Now we just need to get my other step sister Chris and her brood out here!
“Over the river and through the woods….” A trip to see Grandma!
Commitments that had been made earlier in the fall that would have tied me to Tucson throughout December fell through leaving me with an opportunity for Michael to see his grandma in Illinois. My mom, you’ll recall, is a stroke and cancer survivor and is unable to travel. She’s recently moved to a really nice facility in Galesburg, just a few minutes from where my sister Laura and her husband James live. So, with Patrice, Sherry and Dad looking after Lisa, Michael and I loaded up for the long flights and headed out.
Flying is no big deal to our son. Escalators, though, are an entirely different matter. He got mad in Dallas when 3 round trips up and down weren’t enough and I had to drag him off for the connecting flight. Our flight arrived late and even though I had a rental car, my sister Debra (again in from Sarasota) drove to the airport to watch Michael while I installed the car seat in the frozen darkness. This is the stuff I wouldn’t have thought of asking for help with as a new dad. Our good friend Tracy Miller pointed out that while she has husband Carl to corral her twins in such situations I’d need help that Deb was glad to offer.
Our visit was wonderful. Grandma’s joy was unmatched by anything I’ve seen. Mom’s had some significant setbacks recently and feared she’d not get another chance to see her family. As it was, we darn near had a reunion! The other residents of the care facility were quite taken with our tow-headed wonder. We were all able to share meals and good times there with mom before heading back to Laura and James beautiful home for the nights of our visit.
One morning of our visit we went to Laura’s job. Laura is the women’s ministry director of a rapidly growing Baptist church. She and James recently completed a church-sponsored trip to Africa to help women in Nigeria fight the AIDS epidemic. While Lisa and I attend Mass and have decided to raise Michael Catholic I, of course, welcomed the Tucson-based Baptist minister Laura had come and pray for Lisa in those first terrifying days and feel great pride and respect for Laura and her church’s efforts.
Michael got his first, hilarious exposure to snow (what do you expect from a little desert rat?). All too soon, and yet with a huge desire to get home, Michael and I began our return trip. All was well till the looooooong flight from Chicago to Tucson. And while 4 hours is long by any measure, a screaming, inconsolable lap child makes it even tougher. I kept wondering when the air marshals were going to sack us up or the captain was going to put us down in Omaha! But once we were in our old reliable Toyota (134,000 miles and going strong) he was asleep before we left the parking lot.
Christmas with a visit from Santa, and Michael’s Godparents
With Christmas upon us, we began preparations for a holiday visit from Michael's godparents, Jack and Napua Davis. In addition to a legendary career in law enforcement, Jack is an amazing cook, and with Napua's Hawaiian cooking heritage, cooking for them is pretty intimidating. Of course, all that disappears with their great company and a little (ok, a lot of) wine.
We renewed a Christmas tradition of decorating the tree on Christmas Eve. Ok, ok, the “renewal” was prompted by me not getting it done sooner. But Dad, Michael and I found a beautiful, fresh, ginourmous tree, and with everyone helping while I finished fixing dinner, the tree was decorated faster than old St. Nick’s “Ho, Ho, Ho!”
The last time we’d had these lights and decorations out was the Christmas before Michael was born. This was the first one Lisa and I’d had in our home, our first as a married couple, and Lisa had taken great care when everything was put away that year to label and mark everything so we’d know what went where for future years. So it very much felt like Lisa was helping me in the yard string luminarias and other lights when I had her handwritten notes from that very happy time telling me what to do.
On Christmas Eve, Lisa’s notes added her “two cents” as she sat with us in her chair while we completed decorating the house. Even though Lisa isn’t able to be responsive to us we all prayed that she felt the peace and joy we did at being together in her home.
Christmas morning came, and since Michael at 20 months still doesn’t “get it” the grown-ups took their sweet time at getting up and over here. We had breakfast, coffee and Patrice got Lisa gussied up for the occasion. Michael really scored big, and while last Christmas he was interested only in tearing the paper, this year, he figured out the contents were the real fun! From his family and friends he got thoughtful and thought-challenging toys, videos, books and clothes heavily represented by Thomas the tank engine and friends, along with many other much welcomed gifts, including gingerbread man cookies from his grandmother Carmen from Oklahoma.
I’d struggled with gifts between Lisa and me but it all became clear the way these things do. We got a Christmas call from Lisa’s nephew Collin and we learned he’s off on a mission to Mexico during his spring break with his church. Imagine a kid in this “selfish” age in which we live; excited about giving up his vacation to help others in real need. It gives you some idea why Lisa loves this young man so much. When I learned we could help with the cost of the trip, my Christmas gift problem was solved!
Christmas dinner was truly special if not exactly on time. The world’s best neighbors, Jim and Ann Peterson who were putting Jack and Napua up, joined us along with our friend Brad Holland. Brad had provided Lisa and I with our first place to stay here in Tucson and many good times thereafter despite being a native Nebraskan. Lisa and all the ladies looked beautiful and Michael was a real Christmas angel.
Fun and family for the New Year
More great meals and good times were enjoyed in the days that followed. While I worked Napua and Jack said “our turn!” and put my cooking to shame with all different Asian/island specialties Napua has at her command together with the down-home Oklahoma fare she and Jack pair up on. Lisa joined them in the kitchen as she does me. During the day, Jim and Ann took Jack and Napua to the San Xavier mission. They saw and photographed many gains in the restoration the 500 year old mission since Lisa and I’d taken my mom there during her last visit.
Dad, Jack, Jim and my partner at the county attorney’s office, Chris Ward, hit the links, with them hitting back, to hear them tell the tale. Dad proved that Wintory guys make up in enthusiasm what we lack in skill and a good time was had by all. Afterwards, Jim and Ann hosted everyone to a lovely dinner at a local hotspot that was more than Michael could handle so he and I stayed at home with his mom and Thomas the tank engine, my new idea of a good time!
Napua and Jack’s food festival peaked on New Year’s Day with traditional black eyed peas,(for good luck) fried chicken, greens and thin, crisp (no, not cakey, Jack) cornbread. YUM! The day was warm and beautiful and while Napua and Jack were doing their thing I was smoking pork shoulders, beans and a turkey for tailgating the following day.
Tailgating? Oh yeah, there was one disaster this holiday season. The University of Oklahoma’s performance at the fiesta bowl against West Virginia. Despite the abject humiliation of the game, Jack, Jim, Chris and I had a helluva good time. Michael, Dad and Sherry hung out while Patrice looked after Lisa for the day. We left early, got a great tailgating spot near the porta potties (hey, with all that beer, whatyaexpect?) set up our tables, and chairs, popped open the cooler and few cold ones, and when hunger struck, tore into the bbq which was- according to informed sources- deeelicious. The day was warm, clear and the crowds were friendly, all perfect. Until… oh well, that’s what makes the college game so great. It was all still great fun.
Sadly, the next day, Jack and Napua had to begin their trip home and our holiday season came to an end with tears and hugs and blueberry pancakes.
A blessed time….
It’s funny how it all works. We’re so much worse off than where I’d thought we’d be two years ago when Lisa, happy and near-term with this incredible life growing in her, and I decorated the house together. But we are so much better off than where I feared a year ago when our lives, like these Christmas lights, remained boxed up. Last Thanksgiving’s near-death traffic accident while I was driving up to Phoenix; Christmas with Michael and me on a pull-out bed in Lisa’s hospital room, opening presents by the light of her heart-monitor and the fight over Lisa’s getting hyperbaric treatment all come to mind. Even in those times though, we were lifted up by the kindness, prayers and unflinching, untiring support of our friends and family here, at St. Joe’s and across the country.
The only lesson I draw from all this is that God’s grace gives us reason for humble gratitude during times of despair and joy.
The New Year will have many challenges and it’s not waiting to present them. We’ve been cooling our heels since August for blue cross to tell us if they’ll pay for the hospital bed Lisa’s doctors believe she needs. I thought perhaps they were waiting for the new year when we had to start our deductible again. Well, they were waiting, but that apparently wasn’t their thought and yesterday I got the denial letter. It says, that because Lisa doesn’t yet have bedsores we don’t need a bed her doctor says we need to prevent them. Even sillier, they said that because the mattress she has was ordered by her doctors at Select over half a year ago, the order of her doctor now doesn’t count!
The generosity of so many of you has given us enough to get one of the refurbished beds. These beds cost as much as a wheelchair van, so I’d been holding off till blue cross decided hoping I could do both. As it stands, I’ll get on these guys and we’ll figure out how to get-r-done!
I’m finishing this update, like most of my dinners, just a little late, on Sunday January 6th 2008. It’s a rainy day here in the desert, so taking down the outdoor Christmas lights is waiting a bit longer. Michael has me playing catch with him inside the house while Lisa’s getting her shower. When it dries up I’ll store the lights the way we did that last happy time and I’ll save Lisa’s notes on the strings of lights to help me again next Christmas.
Richard Wintory
Michael Wintory
