Hello Madison Rose followers,
Given my amazement how many people continue to follow this site I feel that I should write almost conversationally… a letter of sorts to you folks. Madison’s therapist and I spoke several weeks ago: she follows along here and mentioned that people may feel that they remain connected in a way to Madison by checking in here. Lord knows I think of her every day, moms do too. This sites URL was about to expire but I can’t imagine writing or saying the-end, nor can I just let this site die on the vine… nor am I ready to stop musing, so I just renewed it.
Angela and I recently ‘camped’ at the beach for several days, which is always nice… Madison loved loved loved it too! While there, Angela and I reminisced back to about 2003 when Madison and our friend’s kids were all about 8. Walkie-talkies were far more affordable that cell phones, had a really good range, so our kids were allowed some freedom as long as they stayed together in a pack, we knew where they were headed, with a walkie-talkie in-hand. Roger that. Madison used to tell us of her career goals back then… to become a marine biologist and work in Carpinteria. There are almost always dolphins and seals swimming by and along with magical sunsets, who wouldn’t want to live and work there. I was fiddling in Madison’s bunk in our RV and I found a pair of her socks. My first instinct was to hold them to my cheek which I did. Angela and I agreed that Madison would go beyond the ends of the earth so she doesn’t have to clean the cat-box. She appreciated the financial compensation for doing chores, each of being them optional, but cleaning the cat box was her least favorite. Since she liked money, she did it anyway. Interestingly she was quirky about clean dishes being in the dishwasher. I fondly remember countless times when she walked in from school: seeing the green wash-completed light on, she'd sigh, put her backpack down, and empty it then and there.
I often speak aloud to Madison. Last Tuesday my mom had knee replacement surgery at UCLA Santa Monica. Besides being a very long day, it brings back some no-so fond memories. When my mom’s hospital room was ready I thought WTF, this can’t be, am I’m being tested or is someone or a higher power messing with me… it was the same room that Madison was in when a local physician panicked, long story. Anyway I took my mom’s stuff up to the room but thankfully a brain-fart on my part; I was off a digit in the room number, it wasn’t the same room. Phew.
I dropped Angela off at LAX to visit her friends Carolyn and Erica in NJ. Idecided to take the coast route home since I saw that the 405 freeway was tied in to a knot in both directions. From PCH I headed up Topanga, the city where I grew up in... 'Topanga, a way of life'. Men had the ponytails and many women had hairy legs and pits... home of tie-dye and hippie lifestyles. The house on Old Topanga is long gone…just traces of its existence remain since the last major flood. It started out in 1902 as a single room cabin in the woods, and the various owners before us added rooms to it. I’d taken Madison there some years back: we just climbed around where the house used to be, and saw the gigantic pease-love painted rock. So I’m driving along Old Topanga road listening to Amazon streaming music: the music had stopped… no cell phone service (yes, it’s still that remote). During the silence I slowed to a crawl as I passed where I grew up remembering Madison and I being there, and I told her aloud that her I miss, I love her, while reminding her that cat boxes don’t clean themselves. A couple of miles later with renewed cell service, the random Amazon channel came back on and there it was, a song I’ve never heard play on Amazon, Hallelujah, by KD Lang. That song was one of Madison and my favorites to listen together, holding hands on her bed laying head to toe. Thankfully we both knew better to sing aloud in front of one another. Unlike my mom.
Madison’s favorite version was by Jeff Buckley, so we mostly listened to it. Mine is by Petatonix which I have on CD in my car. And my phone. And my PC. And now this, Hallelujah on streaming media when my phone finds a cell tower. Some may think that sounds unbelievable, maybe eerie, or even amazing. To me, it was a both a message and a gift. (Thanks Shug, nice touch. Yes I’m doing some spiritual reading: Frank Sontag had suggested “Crazy Love” written by Francis Chan, and I started it this week)
We have friends who lost their 26 year old suddenly. He was a very popular ASU; a very tragic and unexpected loss for his families… his football family, his friends, and obviously his blood relatives. In a quest to stay busy his mom was recently golfing and on the 16th hole, her golf partner sees a ball stuck in a palm tree. The ball was handed to our friend (the mom) and on it, the ASU fork (symbol). She wrote a thank-you to her son on Facebook for “checking in and letting me know all is good. Forever in my heart....always on my mind. Love you dude!” Yep, I absolutely get that and I’d wager Madi’s moms and others who love her get it too.
Angela and I went to an afternoon BBQ the weekend before last... and then for the first time, it didn’t happen. Nobody pulled Angela aside and asked how I was doing. After the fact Angela always mentioned to me that someone asked her how I was doing, but only when I was in another room or outside. “He’s really pretty okay considering, ask him”. They didn't. I suggested to Angela that she make up something wild, like sleepwalking naked in the middle of the night and chirping like a bird. Oh yea, that wasn’t me.
So love, loss, and other four letter words: I saw that in a book title, but not as a book title. There are so many lessons we learned, Madison as a cancer patient, mom's and me as parents, or a spouse of someone whose been diagnosed. Madison seemed to learn them all, at least everything one can in her short time here on planet earth. My aunt Sara printed this ‘blog’ from back to front, placed it all in beginning-to-end order, and told me I’m pretty much written a book and if I ever assemble and publish one, she guarantees at least one copy sold. I’ve thought about that for months and feel it’s important to share some of the beauty that Madison is, but equally important to share some of the things she learned and socialized in the chordoma community and in her peer group.
A Chapter Six for example, “The Future Ex-Boyfriend” and another, a Chapter 14: "Beautiful Inside and Out, But Completely Undesirable?".
Given my amazement how many people continue to follow this site I feel that I should write almost conversationally… a letter of sorts to you folks. Madison’s therapist and I spoke several weeks ago: she follows along here and mentioned that people may feel that they remain connected in a way to Madison by checking in here. Lord knows I think of her every day, moms do too. This sites URL was about to expire but I can’t imagine writing or saying the-end, nor can I just let this site die on the vine… nor am I ready to stop musing, so I just renewed it.
Angela and I recently ‘camped’ at the beach for several days, which is always nice… Madison loved loved loved it too! While there, Angela and I reminisced back to about 2003 when Madison and our friend’s kids were all about 8. Walkie-talkies were far more affordable that cell phones, had a really good range, so our kids were allowed some freedom as long as they stayed together in a pack, we knew where they were headed, with a walkie-talkie in-hand. Roger that. Madison used to tell us of her career goals back then… to become a marine biologist and work in Carpinteria. There are almost always dolphins and seals swimming by and along with magical sunsets, who wouldn’t want to live and work there. I was fiddling in Madison’s bunk in our RV and I found a pair of her socks. My first instinct was to hold them to my cheek which I did. Angela and I agreed that Madison would go beyond the ends of the earth so she doesn’t have to clean the cat-box. She appreciated the financial compensation for doing chores, each of being them optional, but cleaning the cat box was her least favorite. Since she liked money, she did it anyway. Interestingly she was quirky about clean dishes being in the dishwasher. I fondly remember countless times when she walked in from school: seeing the green wash-completed light on, she'd sigh, put her backpack down, and empty it then and there.
I often speak aloud to Madison. Last Tuesday my mom had knee replacement surgery at UCLA Santa Monica. Besides being a very long day, it brings back some no-so fond memories. When my mom’s hospital room was ready I thought WTF, this can’t be, am I’m being tested or is someone or a higher power messing with me… it was the same room that Madison was in when a local physician panicked, long story. Anyway I took my mom’s stuff up to the room but thankfully a brain-fart on my part; I was off a digit in the room number, it wasn’t the same room. Phew.
I dropped Angela off at LAX to visit her friends Carolyn and Erica in NJ. Idecided to take the coast route home since I saw that the 405 freeway was tied in to a knot in both directions. From PCH I headed up Topanga, the city where I grew up in... 'Topanga, a way of life'. Men had the ponytails and many women had hairy legs and pits... home of tie-dye and hippie lifestyles. The house on Old Topanga is long gone…just traces of its existence remain since the last major flood. It started out in 1902 as a single room cabin in the woods, and the various owners before us added rooms to it. I’d taken Madison there some years back: we just climbed around where the house used to be, and saw the gigantic pease-love painted rock. So I’m driving along Old Topanga road listening to Amazon streaming music: the music had stopped… no cell phone service (yes, it’s still that remote). During the silence I slowed to a crawl as I passed where I grew up remembering Madison and I being there, and I told her aloud that her I miss, I love her, while reminding her that cat boxes don’t clean themselves. A couple of miles later with renewed cell service, the random Amazon channel came back on and there it was, a song I’ve never heard play on Amazon, Hallelujah, by KD Lang. That song was one of Madison and my favorites to listen together, holding hands on her bed laying head to toe. Thankfully we both knew better to sing aloud in front of one another. Unlike my mom.
Madison’s favorite version was by Jeff Buckley, so we mostly listened to it. Mine is by Petatonix which I have on CD in my car. And my phone. And my PC. And now this, Hallelujah on streaming media when my phone finds a cell tower. Some may think that sounds unbelievable, maybe eerie, or even amazing. To me, it was a both a message and a gift. (Thanks Shug, nice touch. Yes I’m doing some spiritual reading: Frank Sontag had suggested “Crazy Love” written by Francis Chan, and I started it this week)
We have friends who lost their 26 year old suddenly. He was a very popular ASU; a very tragic and unexpected loss for his families… his football family, his friends, and obviously his blood relatives. In a quest to stay busy his mom was recently golfing and on the 16th hole, her golf partner sees a ball stuck in a palm tree. The ball was handed to our friend (the mom) and on it, the ASU fork (symbol). She wrote a thank-you to her son on Facebook for “checking in and letting me know all is good. Forever in my heart....always on my mind. Love you dude!” Yep, I absolutely get that and I’d wager Madi’s moms and others who love her get it too.
Angela and I went to an afternoon BBQ the weekend before last... and then for the first time, it didn’t happen. Nobody pulled Angela aside and asked how I was doing. After the fact Angela always mentioned to me that someone asked her how I was doing, but only when I was in another room or outside. “He’s really pretty okay considering, ask him”. They didn't. I suggested to Angela that she make up something wild, like sleepwalking naked in the middle of the night and chirping like a bird. Oh yea, that wasn’t me.
So love, loss, and other four letter words: I saw that in a book title, but not as a book title. There are so many lessons we learned, Madison as a cancer patient, mom's and me as parents, or a spouse of someone whose been diagnosed. Madison seemed to learn them all, at least everything one can in her short time here on planet earth. My aunt Sara printed this ‘blog’ from back to front, placed it all in beginning-to-end order, and told me I’m pretty much written a book and if I ever assemble and publish one, she guarantees at least one copy sold. I’ve thought about that for months and feel it’s important to share some of the beauty that Madison is, but equally important to share some of the things she learned and socialized in the chordoma community and in her peer group.
A Chapter Six for example, “The Future Ex-Boyfriend” and another, a Chapter 14: "Beautiful Inside and Out, But Completely Undesirable?".
Front and back considerations below....
Profit if any, will go to publishing costs and a generous portion will be donated automatically to the Chordoma Foundation. More on that amazingly efficient and highly effective organization in the coming days.
Thanks for following along, sending peace and love to those who love and miss Madison.
Chris
Thanks for following along, sending peace and love to those who love and miss Madison.
Chris
