It's been a while since I updated this. As Madison had noted, it's cathartic to write for me too.
I closed the last post about the Conejo Valley Village, the local neighbors-helping-neighbors nonprofit chapter. Angela and I were so impressed that we got more involved. I help out with their newsletters and we're both 'Call Managers', logging transportation requests, coordinating rides for members by volunteers, and miscellaneous other things. During our training, the trainer answered calls on her speaker phone and logged them in to their computer system. An very elderly woman called and said her "computer was making noise, I think it's the battery." Sensing the woman's advanced age Angela said m'mam, where did you buy your PC". Her response, "Best Buy". Angela instructed the 94 year old woman to call Best Buy and tell them "shame on you, you're too freaking old to use a computer" and insist on a full refund. I asked the trainer at what point do we ask volunteers to debug computer issues as Geek Squad. The trainer explained that very elderly people are not only vulnerable to being scammed, they fear it a lot having limited financial means. The Village would send a volunteer over to simply listen to the woman's computer and confirm it's the computer, and not her fridge or her hamster cage. The volunteer would help coordinate an appropriate service provider, and be there when the repair person came. Wow, I get it.
Angela and I had camping reservations at Carpinteria beach Tuesday October 8, planning to return home on Friday the 11th. Shame, it was absolutely windless but we had tickets Friday night to see Frankie Valli and a Four Seasons concert with a hotel reservation in Solvang, but obviously couldn't leave the dogs in the RV for that many hours or we forego (or past tense, would it be forewent?) staying at the hotel in Solvang. Madison's mom Colleen graciously fed our cats while we were camping (our neighbor who often does it was in Hawaii), so we thought with the mobile beach house (RV) being all set up literally backed up over the sand with firewood, bicycles, etc., we offered it to Colleen and her husband Michael for Friday-Sunday, which they jumped at.
I closed the last post about the Conejo Valley Village, the local neighbors-helping-neighbors nonprofit chapter. Angela and I were so impressed that we got more involved. I help out with their newsletters and we're both 'Call Managers', logging transportation requests, coordinating rides for members by volunteers, and miscellaneous other things. During our training, the trainer answered calls on her speaker phone and logged them in to their computer system. An very elderly woman called and said her "computer was making noise, I think it's the battery." Sensing the woman's advanced age Angela said m'mam, where did you buy your PC". Her response, "Best Buy". Angela instructed the 94 year old woman to call Best Buy and tell them "shame on you, you're too freaking old to use a computer" and insist on a full refund. I asked the trainer at what point do we ask volunteers to debug computer issues as Geek Squad. The trainer explained that very elderly people are not only vulnerable to being scammed, they fear it a lot having limited financial means. The Village would send a volunteer over to simply listen to the woman's computer and confirm it's the computer, and not her fridge or her hamster cage. The volunteer would help coordinate an appropriate service provider, and be there when the repair person came. Wow, I get it.
Angela and I had camping reservations at Carpinteria beach Tuesday October 8, planning to return home on Friday the 11th. Shame, it was absolutely windless but we had tickets Friday night to see Frankie Valli and a Four Seasons concert with a hotel reservation in Solvang, but obviously couldn't leave the dogs in the RV for that many hours or we forego (or past tense, would it be forewent?) staying at the hotel in Solvang. Madison's mom Colleen graciously fed our cats while we were camping (our neighbor who often does it was in Hawaii), so we thought with the mobile beach house (RV) being all set up literally backed up over the sand with firewood, bicycles, etc., we offered it to Colleen and her husband Michael for Friday-Sunday, which they jumped at.
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Oddly enough, Angela and I take pictures of our feet whilst off the grid and disconnected. Interesting, Colleen does too.
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All kidding aside and all things considered, Madi's moms and I have a unique and special bond. Collen doesn't hesitate to do anything to help us, and we'd reciprocate at every opportunity. Looking back, a chordoma expert had recommended old-school chemotherapy: they had data on five cases with Madison's 1 in 20M subtype, which in 2013 was 50/50 in it's effectiveness with data on only five patients. Given Madison's case among others has formally been studied and since has been included in peer reviewed papers by other chordoma experts, it helped tilt the scales such that while chemo has proven mostly ineffective for classic/traditional chordoma, it's proven mostly effective for poorly differentiated chordoma and recently become a standard protocol. In Boston in 2013 after Colleen, Madison and I met with the experts in Boston who suggested chemo, Colleen was frantically searching Google for the side effects of the proposed chemo treatments. I suggested going for a walk and Colleen barked "I'm trying to save our daughters life". I'll never forget: Madison said to her mom "Dad and I are going downstairs for ice cream, wanta come?" I can't even imagine a mother's biological instinct/anguish being positioned in such a scenario. Men are from Mars: I was thinking mathematical probabilities, and Madison just wanted to step away from cancer for a scoop or two. Lesson learned, take a time-out and stay off of Google.
Forwarding back to 2019: Angela and I were watching an LA Ink (tattoo show on TV) about a month ago. Seeing all of the body art, I asked Angela where her next tattoo might be. Angela responded without hesitating saying that it'd be something related to Madison. Watching radical examples of tattoos on LA Ink, her response caught be off guard: it was clear to me who she was thinking about in that moment. Perhaps it's time for moms and me to get the same thing, like Marleigh and Madison's Nurse Jan RN did.
So, back to camping! Colleen and Michael spent the night Friday in the RV and were ready to bail the next day. After a nice breakfast in Solvang with friends, we dropped down to Carpinteria. Michael and Colleen had packed up they may just not be 'campers' or perhaps too many memories of with pictures of Madison loving Carpinteria... this was Colleen's first time there since we lost Madison. No matter the reason, they were ready to turn over the RV. Before coming up to the RV, Colleen stopped by the house and had taken pictures of our backyard given the extreme winds in Simi. Angela missing the cats decided to go home as well. Hmmm. My options were closing my eyes as Madison taught me working with blind kids and staying in paradise focus only on absorbing the scents and the sounds of my surroundings, or go home and pulling the outdoor cushions and patio umbrellas out of the pool. I chose option A, and Angela chose option B. I could have easily spent a month of-the-grid month camping in Carp, but acknowledge that I'm not a Venetian attached to our cats. Besides, someone had to go home to pull the umbrellas and outdoor chair cushions out of the pool : - )
So, back to camping! Colleen and Michael spent the night Friday in the RV and were ready to bail the next day. After a nice breakfast in Solvang with friends, we dropped down to Carpinteria. Michael and Colleen had packed up they may just not be 'campers' or perhaps too many memories of with pictures of Madison loving Carpinteria... this was Colleen's first time there since we lost Madison. No matter the reason, they were ready to turn over the RV. Before coming up to the RV, Colleen stopped by the house and had taken pictures of our backyard given the extreme winds in Simi. Angela missing the cats decided to go home as well. Hmmm. My options were closing my eyes as Madison taught me working with blind kids and staying in paradise focus only on absorbing the scents and the sounds of my surroundings, or go home and pulling the outdoor cushions and patio umbrellas out of the pool. I chose option A, and Angela chose option B. I could have easily spent a month of-the-grid month camping in Carp, but acknowledge that I'm not a Venetian attached to our cats. Besides, someone had to go home to pull the umbrellas and outdoor chair cushions out of the pool : - )
Angela now has her actual smartphone since she was in corporate America, a modern iPhone to support the Village. She loves it, but given we registered it under my iTunes account, every contact and more that Madison had were imported in to Angela's new phone; an Apple ID that Madison and I shared. An unanticipated but predictable ouch, consistent with the 'Memories" that Facebook reminds us as 'anniversaries'. It feels strange that my phone and Facebook no longer consider/assign Madison as a 'frequent contact'. I can't fathom removing Madison as a 'contact' in my cell phone, or even my email address book. I'd wager that many of you have thought the same... and haven't deleted her contact info.
Halloween 2019: Our friends the Burow family hosted their10th annual pumpkin chuck. It started with a potluck where everyone brought decorated pumpkins back in 2009, but when Dale tossed Maria's pumpkin over the balcony it became a tradition... they all go with scores for accuracy and the creators receive prizes. Back in 2009 Maria was aghast and actually seemed angry saying repeatedly "you have no right". Then, the rest of the pumpkins went over and it evolved in to prizes for with diffeernt categories.
Facebook recently popped up with a memory with Angela. In 2000, it was cool to tuck tropical shirts in to your slacks. I was voted Mr. Poreao 2000 on a cruise I was on and won a very expensive bottle of champagne. To be honest, I was the only male who dressed up and there was a prize for a man and a woman. I can't easily find the picture of my limited attire for the contest that Angela said 'oh hell no but lemme take a pic', but will post it if/when I find it.
Our friends Tony and Gabe in Puerto Vallarta are taking a long cruise and Angela and I have agreed (well... jumped at the opportunity) to dog-sit living there as locals. We're also watching the pricing drop on a seven day cruise, and may cruise down cutting it off at five days foregoing the Vallarta to LA leg, and stay another week. Lesson learned... we all need something fun to look forward to, #fun.
Life goes on for moms and me: we allow ourselves to mourn and play/live while noticing the subtleties of who we're not often social-media reminded of, 'frequent' contacts on our phones, but we're actually very comfortable saying and hearing Madison's name. In hindsight we should have taken Madison's ashes camping last month, which would have been a first. Me being alone in paradise for the last 36 hours I was there, the ocean seemed to be baiting me to play Hawaiian music and walk Madison's ashes in to the ocean. It's good I didn't bring her ashes. They hang out in her bedroom in an XMO backpack and every day I open her bedroom curtains and say 'g'morning Shug', and every night I close her curtains, say g'night, and pat her ashes.
Perhaps for her quarter-century birthday that was ripped away from her, a celebration in Carpinteria and consider leaving her ashes there. Looking back to last month, I feel it would have been extremely selfish for me alone. Carp was one of Madi's favorite places of all time! I fondly remember her telling us that she's going to be a marine biologist, working in Carpinteria. 10+ years later, she was seriously flirting with the idea of getting her own VW van, and going to Carp alone.
Life goes on for moms and me: we allow ourselves to mourn and play/live while noticing the subtleties of who we're not often social-media reminded of, 'frequent' contacts on our phones, but we're actually very comfortable saying and hearing Madison's name. In hindsight we should have taken Madison's ashes camping last month, which would have been a first. Me being alone in paradise for the last 36 hours I was there, the ocean seemed to be baiting me to play Hawaiian music and walk Madison's ashes in to the ocean. It's good I didn't bring her ashes. They hang out in her bedroom in an XMO backpack and every day I open her bedroom curtains and say 'g'morning Shug', and every night I close her curtains, say g'night, and pat her ashes.
Perhaps for her quarter-century birthday that was ripped away from her, a celebration in Carpinteria and consider leaving her ashes there. Looking back to last month, I feel it would have been extremely selfish for me alone. Carp was one of Madi's favorite places of all time! I fondly remember her telling us that she's going to be a marine biologist, working in Carpinteria. 10+ years later, she was seriously flirting with the idea of getting her own VW van, and going to Carp alone.
Yea... let's do it. May 20, 2020.
