I have a lot to be thankful for, but it's impossible not to reflect that this was the first Thanksgiving without Madison for moms, me, friends and family. I've found a men-who-have-lost-a-child group looking for insights as to what's 'normal', and have read about very similar scenarios, but with one major exception... but first a brief recap.
A couple of years back Madison, moms and I attended a seminar at the Cancer Support Community that was hosted by a pastor, someone who was assigned to the oncology ward at UCLA in Los Angeles. He had spent a significant amount of time with thousands of dying patients and their families over the years, and learned that cancer patients wanted three things when it came to death. They want to go quickly, pain-free, and in their sleep. In digging a bit deeper, he asked them if there was a time machine that could transport them back to the day you were diagnosed and people could go quickly and pain-free while asleep, would they? Overwhelming, no... more that 95%. He asked about treatments like surgery, chemo and radiation: "knowing what you know now being here with me, now you'd do it all again?" No.
We saw the 'why' with Madison. Despite two surgeries in 2013, two more in 2014 along with brutal chemo and eight weeks of radiation in Boston, still a 'go'. Another highly invasive surgery in 2015 to repair a hardware issue that caused a software problem (titanium plate on her spine rubbed a hole in her throat). And then the suspected metastasis in November 2016 that was confirmed with Brachyury in December. But! She still went to Mammoth with Nathan and his family (link here) in November 2016 despite the clinical presentation, and in December knowing what she knew, Madison went to Colorado with Marleigh and her family, link here. Those examples along with her five XMO camp(s) experiences are why people wouldn't transport back... there's just too much to miss out on, especially if the future is uncertain.
So anyway, back to where I started. Had Madison been a 'normal' kid, she could have gone off to college for four years, and collectively we'd have seen her only during summer and winter breaks. Most parents who've had kids away at school know there's that light at the end of the tunnel. Unfortunately Madison wasn't a normal teenager, but became an extraordinary human being. In my men who lost a child group the stories are heart-wrenching; reminders how suddenly things can change, how fragile we mortal beings are and how precious life is. Auto accidents, drowning, suicide, overdose, murder... the whole range of non-cancer related deaths, and I find myself feeling lucky and blessed in a way. While obviously sad for our loss of Madison, moms , myself, Madi's friends had her with us for the four years she could have been away at school, and then lost her suddenly and tragically to one of the more common things that can occur. So from a selfish standpoint, I'm very thankful this season but don't feel like I'm in a celebration mode. I certainly can't express thankfulness in my men who lost a child group: I can't relate to them and their depths of a sudden loss. While greatly saddened about my loss along with others who knew and loved Madison, I feel thankful and even blessed to have stood beside her in all of the surgical waiting rooms, doctors offices, road-trips to San Francisco, and post surgical rehab/assistance she needed at home, moms included. We're thankful, but not really of a dancing or singing in the car mindset. Yet. shall come... Madison agrees, and oversees that.
As per usual Madison's mom Colleen picked up Bailey last Friday night. Colleen asked if we were going to put a Christmas tree up this year. No, we're skipping the ritual this year, Colleen is too. Last December was obviously when things took a turn for the worse. I'd written several times that she passed away Thursday, January 4th. The prior Monday, Tuesday, and Wednesday for her were some discomfort with 'pain', but well being well controlled by meds> We watched movies with her in her room and took naps. I'm thankful: the only better ending would have been a cure, or at least something that would have suspended the advancement of this rotten disease.
So Thanksgiving 2018: we had Angela's family and my mom over for a feast-in-a-can on Thanksgiving, heat and serve. We learned that what we thought was mashed potatoes on the top, was actually fat from however this concoction was processed. Lesson learned, and all 10 cans looked exactly the same. So much for serving an 'easy' meal.
A couple of years back Madison, moms and I attended a seminar at the Cancer Support Community that was hosted by a pastor, someone who was assigned to the oncology ward at UCLA in Los Angeles. He had spent a significant amount of time with thousands of dying patients and their families over the years, and learned that cancer patients wanted three things when it came to death. They want to go quickly, pain-free, and in their sleep. In digging a bit deeper, he asked them if there was a time machine that could transport them back to the day you were diagnosed and people could go quickly and pain-free while asleep, would they? Overwhelming, no... more that 95%. He asked about treatments like surgery, chemo and radiation: "knowing what you know now being here with me, now you'd do it all again?" No.
We saw the 'why' with Madison. Despite two surgeries in 2013, two more in 2014 along with brutal chemo and eight weeks of radiation in Boston, still a 'go'. Another highly invasive surgery in 2015 to repair a hardware issue that caused a software problem (titanium plate on her spine rubbed a hole in her throat). And then the suspected metastasis in November 2016 that was confirmed with Brachyury in December. But! She still went to Mammoth with Nathan and his family (link here) in November 2016 despite the clinical presentation, and in December knowing what she knew, Madison went to Colorado with Marleigh and her family, link here. Those examples along with her five XMO camp(s) experiences are why people wouldn't transport back... there's just too much to miss out on, especially if the future is uncertain.
So anyway, back to where I started. Had Madison been a 'normal' kid, she could have gone off to college for four years, and collectively we'd have seen her only during summer and winter breaks. Most parents who've had kids away at school know there's that light at the end of the tunnel. Unfortunately Madison wasn't a normal teenager, but became an extraordinary human being. In my men who lost a child group the stories are heart-wrenching; reminders how suddenly things can change, how fragile we mortal beings are and how precious life is. Auto accidents, drowning, suicide, overdose, murder... the whole range of non-cancer related deaths, and I find myself feeling lucky and blessed in a way. While obviously sad for our loss of Madison, moms , myself, Madi's friends had her with us for the four years she could have been away at school, and then lost her suddenly and tragically to one of the more common things that can occur. So from a selfish standpoint, I'm very thankful this season but don't feel like I'm in a celebration mode. I certainly can't express thankfulness in my men who lost a child group: I can't relate to them and their depths of a sudden loss. While greatly saddened about my loss along with others who knew and loved Madison, I feel thankful and even blessed to have stood beside her in all of the surgical waiting rooms, doctors offices, road-trips to San Francisco, and post surgical rehab/assistance she needed at home, moms included. We're thankful, but not really of a dancing or singing in the car mindset. Yet. shall come... Madison agrees, and oversees that.
As per usual Madison's mom Colleen picked up Bailey last Friday night. Colleen asked if we were going to put a Christmas tree up this year. No, we're skipping the ritual this year, Colleen is too. Last December was obviously when things took a turn for the worse. I'd written several times that she passed away Thursday, January 4th. The prior Monday, Tuesday, and Wednesday for her were some discomfort with 'pain', but well being well controlled by meds> We watched movies with her in her room and took naps. I'm thankful: the only better ending would have been a cure, or at least something that would have suspended the advancement of this rotten disease.
So Thanksgiving 2018: we had Angela's family and my mom over for a feast-in-a-can on Thanksgiving, heat and serve. We learned that what we thought was mashed potatoes on the top, was actually fat from however this concoction was processed. Lesson learned, and all 10 cans looked exactly the same. So much for serving an 'easy' meal.
All kidding aside, Angela prepared a wonderful meal. My mom brought flowers, Madison's cousin Hannah made sprouts with a ton of bacon (can never go wrong with too-much with bacon : ), and Madison's aunt Rikke brought over yams and and pies, even despite my no-yam guideline for Casa-CoHonez. (Honez, a nickname, is Jones in Spanish)
We're skipping the Christmas ritual this year inside our homes, but we will go to parties as invited, and I'll hang Christmas lights outside. When Angela and I discussed decorations and a tree, it seemed like a simple decision. We have three Christmas stockings: when we pull all of the Christmas boxes out of the shed, do we leave Madison's stocking in the box, hang it on the fireplace with ours, or simply forgo the tree and decorations ritual this year? We'll plan a late December get together with our family as we normally do: it may or may not be on Christmas day, and we'll likely order pizza or do a simple... non-Christmas pot luck. I've learned in my group that how I feel is more normal than not, because as you're likely aware if you're been following this site... it's all about me :-)
So all that said, I'm truly thankful for the love of family and friends: Moms and I are not yet ready to start dancing at parties or doing solo karaoke while driving. #Yet
Hashtag yet, but it will come...
Love,
Mums and me
We're skipping the Christmas ritual this year inside our homes, but we will go to parties as invited, and I'll hang Christmas lights outside. When Angela and I discussed decorations and a tree, it seemed like a simple decision. We have three Christmas stockings: when we pull all of the Christmas boxes out of the shed, do we leave Madison's stocking in the box, hang it on the fireplace with ours, or simply forgo the tree and decorations ritual this year? We'll plan a late December get together with our family as we normally do: it may or may not be on Christmas day, and we'll likely order pizza or do a simple... non-Christmas pot luck. I've learned in my group that how I feel is more normal than not, because as you're likely aware if you're been following this site... it's all about me :-)
So all that said, I'm truly thankful for the love of family and friends: Moms and I are not yet ready to start dancing at parties or doing solo karaoke while driving. #Yet
Hashtag yet, but it will come...
Love,
Mums and me
