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Twinkle Twinkle Little Star

6/25/2018

We'd been camping and playing on water toys up at Pine Flats Lake since Madison was an infant. Looking back, I don’t know of many diapered toddlers who enjoyed boating very much and as any parent knows, when kids need a nap they need a nap. Madison’s mom and I were floating around in Jim and Terrie’s boat. Madison was pooped and decided she was going to get fussy. She did. We put her down on some beach towels in the shady bow of the boat but she stayed fussy. I think it was Terrie who out of the blue started singing the song Twinkle Twinkle Little Star. Pretty soon we are were singing it. Madison conked out shortly after that. Jim and Terrie recently registered a star naming it “Madison Rose Jones” near the Pegasus constellation, map below. The card we received from them was priceless too. This brought back such fun and a few quirky memories. We started camping at Pine Flats and white water rafting with our large group of friends since Madi was in diapers and continued to until her high school years. Funny looking back: our pod of friends coincidently starting having kids within a year of one another. On one of the first trips our friends daughter discovered a delicacy called dirt which was abundant, and she was almost unstoppable. No matter how hard we all tried, we couldn’t spank it out of her. She’d just sit there with dirty tear streaks and a brown dirt ring around her dry mouth. The dirty tears made it that much more pathetic. We’d all read children’s books but I must have skipped that chapter and there weren't smartphones back in those days. Now you can read a dozen pros, a dozen cons, and whether or not being a booger-eater is worse than a dirt-eater, and why. Heck, there are probably online forums too.

On that same river trip a very young lad developed an extremely very high temperature. Given our palms were all sore trying to beat the dirt-eatin out of his sister, his mom and dad decided to head down the hill to a hospital in Fresno. Upon arrival, he had a seizure. It’s probably best that he didn’t have a black and blue butt too. Kidding aside on all counts, pretty fricking terrifying. It turned out he was fine within a day, phew.

Fast-forward to present: we went to a combo Father’s day/birthday party a week ago, and a graduation party this past weekend. Looking at all friends of 40 years, great kids! I’m so proud of all them, their moms, dads and step-parents too. Every parent had direct influence on our kid’s characters. Kids? They’re all outstanding young adults!

In all seriousness from a gent by the name of Ad Cooper: “Being a father has been without a doubt by greatest source of achievement, pride, and inspiration. Fatherhood has taught me about unconditional love, reinforced the importance of giving back and taught me how to be a better person.” True that, mums too.

On chordoma: I miss the time when I didn't know what that was. While there are less than two dozen known cases in the same bloodline, I continue researching it so somehow I can tie it to Madison's mum... Madi would have wanted that :-)

Love,
Chris

And finally thanks Jim and Terrie, you’re right it’s official. We can look now up and see our twinkle twinkle little star.

Let's Take The Camry

6/12/2018

We went to the beach again last week, RV camping at Carpinteria: One of the things -not- to do is publicly socialize that your home is empty so I was dark here for a bit. Carpinteria was a nice retreat as usual but always loaded with memories of being there with Madison. She wouldn't want us to stay at home being sad-sacks and we do love Carp, so we went. We didn't bring ashes this time: I think may save them for another time and include people who love her and may want to be a part of it.

We met a couple at the beach who has THE perfect RV: a diesel pusher that's only 29' long and an ideal floor plan. While I was chatting with them and taking a tour of their RV Angela had wandered back ours and via her phone, joined an RV club of that brand, and downloaded the forms necessary for me to sell a kidney to pay for it. Ya only live once, aye?! While walking through the town of Carpinteria I don't think there's a single store we had not been in. One of my favorite memories for the kids is a soap/fragrance store. I remember Madi, Chloe, and Carlie rummaging through there as little girls. The store owner was always tolerant as the kids scampered around. Of course as they got older they liked the clothing stores. Another cool memory is walkie-talkies: prior to having cell phones we let the kids wander around the campgrounds having their first sense of independence -not- having a parent with them, but being connected and having the security walkie-talkies. Roger that.

I started a small project compiling all of the pictures I have of just Madison in to one PC folder... easier said than done since they're from every computer we've had since the 90s. It'd be easy to just drag and drop them all, but I felt it's important to preserve the fond memories while archiving the hospital, recovery, and general family pics we had. #allmadi. I thought I was done and gave Colleen a copy, then I found a folder on an old computer backup so I needed to add those. Okay, done?! I found Madison's first phone and just like her computer and notebooks that were in her room, I couldn't escape the overwhelming feeling that I'm snooping around in some place I simply don't belong. While unseen pictures of Madison are now priceless, the risks of seeing pictures or videos of her then boyfriend Rodger (yes with a 'd') twerking or Lord only knows else pictures a 16 year old would keep on her phone could be regrettable. Thankfully no clown-porn, twerking, or anything of the sort.

For entertainment purposes: Madison was covered by two health medical insurance carriers. Recently one carrier decided they were secondary, insisting the other insurance company should have footed all of the 2016-2017 treatments; many many dozens of them. We learned this because medical provider billing offices started calling our home asking for Madison out of the blue. It turns out... or should I say my understanding is that the carrier who now claims they're secondary has rescinded payments they made to providers, so physicians who should be (and will be) compensated... were orphaned by the insurance company, so doctor offices are calling our home number asking for Madison. Adding additional wrinkle, my former employer changed insurance carriers, so the relationships that I had with the case manager died on the vine given we were no longer insured with them (we have coverage, just a different provider). I called my case manager who did pawn me off on their 1-800-black-hole number. I finally spoke with a manager and explained that it seems simple enough to me: imagine that you lost an immediate family member but months later your home phone number starts ringing daily with numerous callers asking for said deceased family member. How can any insurance provider that has been paid for coverage decide something like this, to simply unhook themselves? Seems ludi-chris to me but I explained that the options seem simple: formerly tell me now that despite all of the premiums paid, that Madi was not covered. Or, you make the phone calls and (previously paid) dunning notices stop. Why would I not go to the media, this really would make a remarkable story. All that said the pot that was boiling is now just a simmer. Someone from the newly alleged secondary insurance company is working directly with the providers and me.

Changing gears: My car is a 1998 Lexus GS400 and Madison's is a 2015 Camry that came with 100,000 mile transferable warranty. It makes no sense to keep my 20 year old car but t's mine and I like it, it doesn't leak anything, is quite fast for a full-sized car. Applying some logic, we don't need three cars so it's time to sell one and it doesn't make sense to keep 20 year old car that has 140K more miles than Madi's. I've been able to make the transition of referring to Madison's car by her name, to "the Camry". I deleted her iPhone from the bluetooth and changed the radio stations to my choices, so I'm going to drive the Camry for the time being. It's a neat little car, runs perfect, and while I'll miss the macho V8 we'll so we'll see how that goes.

Last week at the beach was very relaxing and full of very fond memories but this past weekend had a rough patch. I'm still reading about learning about the stages of grief and other peoples experiences. An unfortunate reality of mortal life is mortal death, and the price we pay for love is grief. The deeper we love... well you know. There will be funks and triggers. The funks will become farther apart as we progress through the stages, and hopefully the triggers spawn mostly happy thoughts versus me trying not to look up and ask Him why her, so unfair: anyway that was my selfish little mini-pity party over the weekend... a tad pissed off. Ultimately Madison and I had agreed before she passed and she'll explain the 'why' when we meet again.

And finally... PJ wouldn't leave the RV when we were loading up. I would call him but nope! He knows whats-up and went to the front seat. I open that door... still nope. Bailey on the other hand knew something was up and stayed underfoot. To me, this was a a sign of wisdom versus smarts. PJ knows the 'how' we're leaving and Bailey knew someone is going somewhere, some way: if she sticks close she wouldn't be left behind...

Bailey finally petered out and gave up but we brought her with us anyway.

So there you have it! All things considered being the standard disclaimer, we're doing well. Given I've renamed Madison's car to 'the Camry' it's easier to decide what to do with that, and it's paid for. Imagining her disappointment if I sold that versus my car under the guise 'she wouldn't want that', which means I can continue with life moving forward while conveniently doing what I want and get my way by twisting scenarios in to "she wouldn't want that". :-)

Love,
Chris

Twinkle Twinkle Little Star

Let's Take The Camry

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