Wishing everyone your absolute best Christmas possible!
Love and peace,
The Jones Family
A couple of weeks ago I planned on ordering a customized Christmas ornament with Madison's picture on it. I finally decided on the perfect picture, then Googled 'personalized christmas ornaments' to determine the 'how'. Madison has a great sense of humor, oval ornament below (nice touch Madi !). Angela knew what I was up to and when presented with the Google search results, I showed her the first hit. Her eyes instantly teared up, which of course got mine flowing. (nice going Madison, now look what you've done!) Rewinding back to Christmas 1998, Madison was 3: Colleen, Madison and I were celebrating Christmas at my Aunt Sara and Uncle Richard's house. As toddlers do, Madison was digging around for an anchovy in her nose (she gets that from her mom's side of the family), and finally hooked one on her index finger of her left hand while she was sitting with my grandparents. Jackpot! I believe it was Aunt Sara recognizing what she had, suggested to Madison that she just wipe it on great-grandpa's leg. (She gets that from my side of the family) As you can see in their faces, they both got a kick out of it. Hey Great-Grandma, do you want one too?! Wishing everyone your absolute best Christmas possible! Love and peace, The Jones Family Last week Angela and I decided it was time to go off the grid, and took a nine day time-out in Puerto Vallarta. We hooked up with Tony and Gabe, had a great time, and also met a lovely couple from Vancouver Island, Debbie and Mike, who decided to relocate there. Over dinner with Debbie and Mike, it came up: Debbie asked if we have kids? Ruh roe, had the potential to be a Debbie-downer. I need to practice my elevator pitch, but I rallied after a pause, 'yes... she's forever 22, F-king awesome', and then my lemme-tell-you-about-her monologue. That prompted tears on both sides of the table, but it's all so true... I'm SO proud of Madison... so wise beyond her years full of faith, grace, and courage. Debbie and Mike have three adult sons, and signed a four month lease on an apartment in PV to get a sense of the area. Having not done their homework, their next apartment won't have 87 stairs away from a very busy street. Tony and Gabe used to live on a hill too, and it turns out that everyone who has a lot of stairs to climb all know exactly how many. Angela and I were on the third floor of our hotel and counted the steps to gauge what Debbie and Mike do: ours was 32 steps so Debbie and Mike climb the equivalent of seven stories, without an elevator, and with their laundry, groceries, etc. in their everyday lives. Being budget conscience, we stayed at a budget hotel in the thick of PV... armed Policia at the front and rear entrances... what could go wrong? Our friends Tony and Gabe live just a short walk from there. The wiring in that neighborhood looked like we were be Beirut. Their apartment looks very unassuming from the street, but it's absolutely beautiful inside, stunning in fact: three stories and their own roof with a nice view. The night before we left for Puerto Vallarta, I met with Josh Sommer, the founder and Executive Director of the Chordoma Foundation. Back in 2013-2014 our family was heads-down in treatment: we didn't pay much attention to the CF beyond their guidance of seeking experts who treat this rotten disease routinely... with a number of recommendations. Back in 2013 chemo was dismissed for chordoma as ineffective. Data back then was inconclusive, but chemo for Madison's ludicrously rare subtype of chordoma (1 in 20m) might be effective. It was, and there are now data driven justifications that conclude for Madison's rare subtype, it merited serious consideration. Now in 2017-2018, it's become more of a norm, and a paper was recently published that includes data from Madi's case. I co-moderate a chordoma support group, over 2,200 members globally. A mother of a 5 y/o boy just joined us: treatment to date, traditional chemo. While strong regimes are brutal, it's been effective for him... no surgery, no radiation to-date. There are numerous clinical trials specific to chordoma, one of which is injecting chemotherapy and other agents directly in and around a chordoma tumor... with success! My point with this paragraph: After treatment ended in 2014, we didn't pay much attention to the CF. In early 2015 there was a Patient Conference at USC, so it was easy for Madison, Moms and me to attend. Only then did we truly grasp the significance of the Foundation: amazing progress driving global collaboration, and there's increased momentum every year. This picture is of doctors, scientists, and researchers at the 2018 workshop... 140 of them from 70 institutions and from 10 countries. Absolutely remarkable! Last Christmas season Madison wanted to decorate the Christmas tree, so we did... I'd written about that at this link. The elephant in the room eventually demanded attention, and we sat down and talked about it... every unfortunate aspect. I'd also written about reevaluating rituals, which we did. We choked down tears decorating the tree, ultimately what Madison wanted for us was a 'normal' Christmas, knowing full well that this would be her last. There was a candlelight vigil tonight at 7pm local time(s) across the planet: we lit candles for our lost loved ones... it's a thing on the second Sunday of December. Pictured below: normally put our Christmas tree in that corner, but things are not normal... not for any of us who love Madison. While she might screech from the heavens 'move-on', she would concede that we need to be us too. So this year, I put up happy lights on the outside of the house as normal, but inside... void of any Christmas spirit. Like me... turns out, it's a new and temporary norm, noting this year the elephants sitting in the bottom left corner where the tree has been in past years. Mind you, I'm far from feeling dead inside... honest, just not feeling Christmas-y. When we gather for a family dinner in December, it'll likely be very close to Christmas day but just like last year, it'll be a bucket of KFC or something simple. Pictures at the bottom of this thread, the budget hotel was quite nice for the pricepoint, and in a great location. It was a very relaxing nine days being unplugged, and they upgraded us to full ocean front for only $10 a day. Yes, that's a bucket screwed to the wall and yes, it's sprinkler pipe with an sprinkler on/off valve. After nine days being off the grid, it was time to come home. About 30 minutes after we took off (about an hour south of San Diego), a woman in the row in front of us across the isle was having trouble breathing and couldn't speak. The flight attendants were amazing and recognized it was serious enough to request that any doctor or nurse on the flight please press the 'attention' button. Thankfully there were three. The emergency medical kit was placed on the seat next to me. It was impressive with a wide assortment of meds... probably most of what every ER doctor might request. Odds are, there will be a nurse, doctor, or EMT on a plane. It was serious enough for us to divert the flight and land early to get this woman to a hospital. Rather than continuing north, we were diverted south and landed in Cabo. I suspect FAA rules mandate the closest international trauma center, versus a more modern facility that's a little farther. Cabo Paramedics boarded the plane and took the woman and her husband off. The captain announced that we'll need to refuel, get another oxygen bottle, and we'd be off. Then it went sideways. Long story short, our airplane wasn't at a gate... just sitting off to the side. My gut told me three things: I suspect the woman had a stroke and hopefully she's going to be okay. 2, the US flight crew might not be allowed off the plane. All being Los Angeles based with two LAX to PVR round trips scheduled, would they need to go through customs in Cabo? Rumor was that time of the night, Customs in Cabo was closed. 3, I was hungry: maybe now I can get my airline bag with the 14 peanuts. We sat there held captive for over four hours and I'm fairly certain Delta broke some passengers rights laws, allegedly awaiting an oxygen tank. At the 4 hour mark being held captive, they brought aboard 'meals'. I kid you not, we each got 1/4th of a homemade sandwich. I'm 100% serious, this was Delta's attempt and providing 'meals'. Objects in this picture are smaller than they appear. At the 4 hour and 10 minute mark, the captain announced that they have received approval to use an Aero-Mexico oxygen tank, and we'd be departing shortly. What Delta should have done was the simply the right thing, but they blew it on so many levels. On the two-more hours flight from Cabo to LA, Delta actually had the audacity to charge passengers for snack boxes. A father, mother, with a young crabby child asked for a snack box. A flight attendant told them he'd have to charge them, and (unasked-for), insulted dad by saying he'd be charged for alcohol too. The Flight Attendants then went limp, sitting in the back row fidgeting on their phones. No coffee brewing, they didn't even look up. I stood in the Galley hoping to smell coffee. Granted, some people were really upset, but really?! Wimps! Delta even continued to charge passengers to use their onboard WiFi so people can send email updates or fiddle on social media or the internet... like two of the flight attendants lounging in the rear seats. Angela and I were lucky, counted our blessings. We didn't miss a flight out of LA heading to Australia like the young woman across the Isle? (Aussie's tend to end sentences which to me, sound like a question) In the wee hours of the morning, LAX did open Customs for us, or was that BS too... that customs is closed in LA? As far as I'm concerned, the airline owes the 100+ people on the flight three hours of our lives back for holding us hostage beyond tending to the ill passenger, refueling, and restocking an oxygen tank. There were other planes going in and out out Cabo, so they should have allowed deboard. Delta has our names and address, so I'll absolutely confident they'll be sending all of us captives a flight voucher. Sure... without even asking? The pictures of the bathroom above was at a local restaurant. We had a great meal for a low price, I love PV! The picture below was from our room. For a mere ten extra dollars per day, we had a full ocean view, wrap-around balcony with dual sliding glass doors with a nice ocean breeze. All things considered, it was a wonderful disconnect. It's becoming less sucky to -not- shop for Madison while Angela and I vacation. To Madi's point, I still find it cathartic to write. 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. 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 I heard from two voices from the past yesterday, one of which was the therapist/host of my men’s (cancer) caregiver group from 2013-2017. We had lunch at a very busy deli and he mentioned wanting to get a table where it’s quieter, which we did. Phew. Once seated I mentioned that my tolerance of noisy environments isn’t what it used to be, part of my new-normal. He laughed and said “naw, you’re just getting older and more set in your ways”. Huh! Is that what happens when one turns 60? Nope, I think not... 60 is the new 40! It was great seeing Phil, who is a board member at the Cancer Support Community. Reflecting back to 2013 for my first Men’s Caregiver group meeting, the other men all welcomed me, told me their story, and then it was my turn. Gulp… pause. Okay, let’s try that again. Gulp, then tears more tears, but I finally choked out why I’m there out with tears streaming down my face. I learned that was my safe place, which I can say things to these gents that I couldn’t share with anyone. Example, I’m terrified that my daughter will die. I couldn’t say that to other people without them thinking I know more than I’m saying or don’t have faith in the treatment plan, or without receiving a pep talk how people beat cancer all the time… that their aunt had breast cancer and she beat it, Madison will too! Madison finally went to her group and found her peer/peeps, people she could truly open up with who ‘get’ one another. As Madison wrote here “The Cancer Support Community gave me a safe place to share my experience with a group who would understand. They provided me with tools to manage the stress and the uncertainty and I also believe they led me to acceptance. I am part of a great group of people. We laugh, we cry, and we are there for one another, which is so valuable since cancer can be a lonely experience.” I mention this because... I learned yesterday that the CSC needs volunteers for their Holiday Homes fundraiser in early December. This is their final hurrah for 2018 and if you’re local and in a position to help, please sign up at this link: you will feel good about giving your time, I guarantee it, but don’t do it like I did for the PTA when Madison was in elementary school... I will find you! Jan RN sent me a text last night: She was thinking about Madison and took a picture of the bracelet still on her wrist that Madison gave her for Christmas last year. Jan RN was Madison’s nurse, was at the Color Run cheering Madison on with her doctor, and Jan committed to doing it this year with me and other Madi-fan’s. While the Color Run was a year ago yesterday, it actually didn’t pan out this year. The website still has “November 2018, date TBD”, they didn’t respond to my emails, so I’m shifting in to plan-B for 2019 to see what I can get away with... it'll take 8-12 months to get those ducks in a row. Last Thanksgiving Madison and her mom were dishing out food to some homeless people. It’s difficult not to reminisce thinking back about milestones, but so many of the memories make me so proud of Madison and that being just one of them. So if you live locally and you can spare one half of one day to help the CSC this season, please call them! They have several dates and time-blocks available and they need our help and again, don’t be me 15 years ago. Madison’s mom and I separated when she was five and we actually got along better than ever. Angela admitted to studying our relationship because she wanted to understand what she was getting in to. The PTA was looking for volunteers during school days, but moms and I worked full time. I did get some hardcopy volunteer forms, and signed up for being a classroom helper, study buddy, driver for field trips, snack mom, basically checking off ever box for every gap they had. That said, I put Colleen’s name and phone number down. Over the years Colleen mentioned to me that the PTA seems relentless finding volunteers. “Every year I explain that I can’t help during the day but they just keep calling!” I finally clued her in years later, that I checked all of the boxes but may have inadvertently put her name down. Colleen laughed harder than I did : - ) While most people work and can’t step away during the week, please consider filling a gap for the CSC’s final fundraiser of 2018. Even getting a brief four hour glimpse in to what they do for so many of us impacted by cancer, you’ll be amazed, inspired, and will feel good! If you know someone who has been diagnosed with cancer, encourage them to find the CSC or one of their many dozens of affiliates. The first step in the door is a hard one, and the first meeting will likely be rough. In the long run, it's emotional support and nourishment from people who know how/what to feed people like us.
I hope you have a nice Thanksgiving, embrace and enjoy your friends and families, and have a nice long weekend. Love, Chris Father Mike Schmitz tackles one of the toughest questions religious believers must answer, link here. I heard recently something from a woman who lost her husband to cancer. She told me that "God takes the good ones first". My initial unspoken reaction was to ask her if she believes that, or if she thinks I might. Then I felt bad, and of course sad. Given she was talking about her own scenario, I remained muted on my thoughts and I expressed sincere my condolences for her loss. What she believes is her truth, and I'm sure she lost a very good man. Father Mike (link above) made a great point... that we have to stop saying that "God has a plan" and "all things happen for a reason". People may question their faith when they can't pray cancer away. I don't mean to sound like I'm preaching here and while I agree that prayer is extremely powerful, God doesn't intervene or selectively wisp people to heaven, or allow them to physically suffer. I heard of a man praying to God night after night so he would win the lottery, and this went on for many months. God finally answered, and suggested to the man that he should actually buy a lottery ticket. While it was obviously humor, the person who told me illustrated that while God is all-powerful, He doesn't intervene. I'd written about attending two bereavement meetings where I was the only one who had lost a child; everyone else had lost their spouse. They all had applicable pain and challenges, just not applicable to me. I've since found a men's group for fathers who have lost a child, and oddly I felt like I was a lucky one. I'd say 95% of the group members lost their kids to something sudden and senseless, a catastrophic car accident, murder, suicide, overdose, etc. With the recent massacre at the country western club just over the hill in T.O., or to people who lost their homes or family members to the fires here in SoCal, can you imagine their reaction of someone got up in their faces and said "all things happen for a reason"? We have to stop saying that to people who have lost loved ones to disease. There is no need to 'help' rationalize our loss, just as ludicrous to say it to someone who unexpectedly lost a loved one. That said, I may have said that to me five years ago... lesson learner.
During the dinner mentioned in the prior post, I was chatting with two of my favorite chordoma peeps, Heather and Steve: they lost their son Justin to chordoma in 2008. We were idly chatting about how people seemed desperate to 'help' us. Heather, who has a PhD, mentioned her reaction to people who told her that all things happen for a reason. She told them "NO, God does not give nor allow a seven year old child cancer" and basically just ended the conversation then and there. I could see the intensity in her eyes, and to reiterate... we as a society need to stop saying that to the families of cancer patients who've lost a loved one. Imagine saying that to a parent of someone who lost their kid at the recent shooting at Borderline?! Angela, Madison and I saw someone speak who I'd written about previously, David Kessler. His guidance of what to say, and what not to say are at this link. God bless the firefighters and all first responders, and to people who lost loved ones or property in the fires, or the senseless shooting... you and your families are in my thoughts and prayers... I'm so sorry for your losses. I had the privilege of attending a Chordoma Foundation (CF) meeting/gathering in Raleigh earlier this month. Among the group of 25, there were five researchers there who are specifically focused on brachyury research, one of which was Dr. Charles Lin: There's an excellent video at this link that outlines what brachyury is, and the quest to find it's Achilles heel. Dr. Lin reiterates that turning brachyury off is a solvable problem, and other researchers echoed his thoughts... all of them. It's not a matter of 'if', but 'when'. Another researcher Dr. Opher Gileadi mentioned something in a context that fascinated me, I had never really thought about it. As a scientist, funds are typically granted for something specific, but it's in a bubble/silo of sorts. He mentioned that it can feel like he's not part of a solution for actual people that he can relate personally to. That evening an additional 60 people joined in for a sponsored dinner. Dr. Gileadi mentioned being inspired having met actual human beings who are impacted and united to cure this rare disease. Meeting with other researchers who are focused on brachyury seemed to energize each of the five researchers (and the rest of us!), and the scientists can all build upon one another's brachyury progress to date and from other lessons-learned. Mingling with actual patients, spouses, and parents seemed to invigorate them at a personal level: To quote Dr. Lin he and his team are "working on something that really matters." It's a 30 second read and three minute video link here (but this time actually click on it : ) There were several couples there who had lost a child to chordoma, so we have that uncommon bond. I really like that they're staying involved with the CF, and I think they were glad that I'll stay involved carrying the baton for Madison. Below, a picture of Josh Sommer, and one with Madison and Josh at the 2006 Chordoma Community conference in Boston. My friend Maureen lost her daughter teenage daughter Angela to chordoma: To quote her: "don't let this be a story to never speak of again, let it be the beginning of a beautiful one." Angela's wanted that. I recently joined a bereavement group and including me, there were 20 people at the two meetings I attended, my first and my last. Given some of the changes I’ve noticed in myself, I’m find myself trying to validate what’s actually ‘normal’ with people who I can talk to. Books about love and loss are plentiful, but I haven’t seen one that goes deeper than the stages of grief…oddities, like are there peculiar side effects? As I’d previously written, loud music and extremely busy/noisy environments tend to crank up some anxiety in me. I bounced it off the bereavement group; it’s much more common than not after a loss like ours. What I don’t have in common with this group… I’m the only married person there. Everyone else lost a spouse to cancer, most of them in their 50s and 60s. An interesting topic in the group, someone asked “when is it too soon” (to start dating). I looked around the room and saw some smirks and grins, so I figured out the question. For this gent in particular it’d been two years since he lost his wife. It turns out that his girlfriend (who was sitting next to him) lost her husband a couple of years back as well. Everyone in the group knew they were dating, but they were naïve enough to think nobody had a clue. He tap-danced and finally announced it, the group were genuinely happy and applauded, and then an interesting twist. The discussion transitioned into meeting one another’s adult children, and it was unanimous disapproval. Huh! He also took her to his church and she got the stink-eye from far more people than either of them had expected. Not only do adult kids not accept dad seeking happiness and companionship, his church family seemingly wants him to grieve much longer, maybe even forever? Granted he and his former wife had been going there together for decades, but it was clearly not okay with most of the congregation. Ultimately I decided to thank everyone for welcoming me, but to step back. Things they have in common are all applicable, just not to me, and I felt I'd be a distraction despite how warmly I was received. They all seem to struggle a bit sleeping in 'their' bedroom alone, despite new furniture, paint, and sometimes flooring. Mornings are rough too, most are empty-nesters, so quiet times can be challenging and lonely for them. Another relevant topic for newbies in that group, when do you take off your wedding ring, if ever? I came home from that meeting and discussed the when-is-okay scenario with Angela. In the unlikely and tragic setting that she ‘goes’ first, when is it too soon? She pondered it, and said that if I’m emotionally happy and available, there’s really no time frame, adding that people need physical and emotional companionship. I replied “cool, a month or two then works aye?” I got the stink eye. So in the quest of what’s my new normal, I have noticed some patterns. I can’t stand watching the news, and can’t be in the room if there’s ‘breaking news’, no matter the argument. One of the shows that Madison, Angela and I watched is “The Voice”. While we didn’t like the banter of why an up-and-coming singer should go on whose team, Angela noticed something we thought was new. On Monday a young woman sang and it was truly beautiful, she was all heart. Another ‘new’… beauty brings tears. Angela and I both pretended that we didn’t need Kleenex, so I played it again. Okay, done deal, we’re now saps when things bring us joy. In 2015 Madison, Angela and I watched Andi and Alex on The Voice, twin sisters who sang a duet. The song, beautiful… link here, it had all three of us in happy tears and looking back, post-cancer treatment applicable, like we've been rewired in a sense. To quote Madison "The beauty of the light owes much of its existence to the darkness". A couple of weeks back I was driving along and decided to fumble with my phone and play Amazon Music. At the top of the list, Eric Clapton’s Greatest hits. Okay, I just had to press play. The song that played first, Tears In Heaven. It’s was inspired when Clapton's four year old son Conor fell from their NYC apartment. Gripped by the words, my phone rings: it was Alex, a pastor at Madison’s church wanting to know how it’s going, how am I, and am I free for lunch. A coincidence that that song came on and someone I’ve not spoken to in 6+ months happens to call? I think not. This one hit me: it’s easy to connect some convenient dots while dismissing others. Impossible for me to ignore, her (yes Madison’s) signals that she remains present in spirit. Last week Angela and I watched the movie Bedazzled. At the very end, a scene in San Francisco. I had to pause the screen, the background has been forever etched in my mind, comparing the TV to a memory. That was the same exact place that Madison and I stood with Alcatraz in the background during one of the trips for her clinical trial. Coincidence that I see things I've never seen before?! Nope, an implanted reminder. Last week Angela and I camped at Carpinteria beach. We always bring more than two chairs, despite it only the two of us. We keep the blanket that Madison was sitting on for her first birthday party in our RV as you can see in the pictures. (Bailey likes it too) Her head being too heavy for her neck, Bailey staring at an empty bowl of yogurt and granola. The beach was gorgeous all week, Angela too! She did take off to gather some firewood, came back hungry before it was even dark, thinking the sticks that she collected might be enough for a quality fire. Sheeeeesh! PJ noticing that the most pictures are of his tubby step-sister, popped his head up saying 'hey, what about me'. One of the things Angela and I have noticed is that seldom do we hear Madison's name, except from one another. This also seems to be a new normal. I've noticed that if I bring up Madison's name or a memory of her, more than a few people seem to appear twitchy. I've noticed it in a few scenarios and if I don't bring up her name, it doesn't seem to come up. If I do, I risk seeing blank or uncomfortable expressions.
A story if I may: As you're aware, Madison had a great body... something that all dads dread of our daughters. For me, I didn't see it until it was pointed out to me by Angela. You know on the TV shows they blur license plates, some logo T-shorts, etc.? That's how I was with Madison's physique... I only saw her face. One morning when Madison was about 14, Angela mumbled to me like a ventriloquist "are you going to let her wear that?" Looking over at Madison, she seemingly had grown boobs overnight and the particular top she had on made it apparent. Not for this parent, "Madison, please go change your top... that's inappropriate". Being respectful, Madison went to her room and changed. I asked Angela "when did she get those, I never got the memo". Angela said about a year prior. I gave Colleen crap about it too, this is her genes, so her fault! I guess it's human nature to selectively see the things you want, and blur or bury some others. When the time-share salesman I'd mentioned previously asked Angela and me if we had kids, I felt a sense of guilt saying 'no', I managed to suppress the urge to ask him about his ex-wife (yes, he was that bad), but the reality then and there was that I didn't want to go down the path of love and loss, to that jerk, and other and four letter words. That said, the next time I'm asked regardless of the circumstances, it'll be a resounding 'yes', she's forever 22 and f***ing awesome". I'm going to invite you to trust me on this... it seems much more common for those who have lost someone, to not hear their names. I suspect people generally fear they may feel like they're ripping the scab off of an old wound. To people who have lost someone, say their kids, spouses, or friends names aloud, and celebrate the remember-when's! It may prompt a tear or two, but those happy memories to me are fond tributes to people like us who all lost someone like Madison. If I happen to weep like a 12 year old Amish widow, it's on me so it's all good :-) I was on a conference call this week with a mother who had lost her young son. The cat they bought for him when he was ill now isn't doing well. Damn. It was their Bailey. Madi's moms and I have four pets, but the common thread when it comes to Madison, is Bailey. The fact that I may have more pics of her than my wife makes me officially old at 59. Growing my hair long might suggest a quirky lack of credibility, so we'll see where that goes. 22 years at IBM and another 15 at two other conservative companies, my hair has been short since high school. A couple of things we've accepted: one, it's not "the Camry" and two, it'll always be Madison's bedroom. We bought the car as an economical freeway-flier, something that we could drive up to SF for the trial, Madison's mom would use it too. But. Rebranding it or her bedroom as anything other than Madison's requires unnecessary energy... everything she had will always be hers, including her bathroom. We're okay with it and besides, it felt silly trying to rename or rebrand her bedroom in to something else too. While the furniture is all different, do we call it the den two point oh?! The guest bedroom, or just call it what it will always be... just like her car, Madison's room. It's impossible to not reflect on her silliness. She was actually able to bait the dogs (okay, her dogs) onto the treadmill, link here. I love her giggle... one of the sounds we all remember spontaneously coming out of Madison, forever silly :-) Angela and I went to a 'seminar' yesterday. The salesman was so pushy he became an ass. I invited him to listen again to my words, stop selling, we're not buying today, maybe you can tell us about your family. He did, then ask us if we had any kids.
There are a broad range of answers we can offer. When asked and we tell strangers we lost our child, I've see a sense of guilt on peoples faces... feeling bad that they even asked: it's not their fault. (the salesman mentioned above was such a pushy cuss that I almost asked him to tell me about his kids and his ex-wife, who I learned died of breast cancer... thankfully I didn't match his aggression). Other times I've responded that we're empty-nesters, and it's often left at that. With this particular salesman, we just said 'no kids' and that was that. Interestingly I felt odd, like I had temporarily erased Madison. There really isn't a correct answer to the 'do you have kids' questions, and we'll continue to wing it. I received a lovely email from a young woman who is in the Young Adults with Cancer group that Madi was in. They were her cancer peeps who took her to the Color Run in November. Reflecting on that, I saw pure joy in Madison, and I'm so proud of all of them and thankful for the memories and pictures that capture Madison's absolute joy that day, she is forever 21. The young woman wrote about a conversation that she and Madison had late in the game. She wrote "Madison’s faith was so important to her and that legacy of faith for you and Angela was something we discussed often. Some of my last words to her, with tears streaming down down both our faces were, “well done my good and faithful servant”. Amen, to that I say to you well done, and again thank you and your peeps for being her loving and supportive peers, for the Color Run memories, for everything you are to one another, was to Madison, and the new Madison's coming in to your group. Photos are at this link, thanks to Jan RN. Love, Chris |
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