Tuesday, May 17, 2016

The Forces that Drive US.

I am gonna try and catch up on blogging***maniacal laugh*** I say that realizing my schedule will not allow- so I will try to make time! There is no way to capture all we saw and learned and experienced in Europe - but I'm gonna try and do what I do- apply what we experienced in a way too lengthy post that I set out just to tell in one story, which will be woven artfully like my grandmother used to into about 5 stories- oh you remember So and SO she was friends with your mother's father's best friend's son who met so and so at....and then loop it back to So and So 10 minutes after you forgot what the heck you were talking about. Today is all about- Driving...

Love. Family. Friendship. Knowledge. To Be the Best. To have Fun. To Help others. Responsibility.

There are so many forces that drive us. For years I've felt guilty to even think about vacation. To think of the resources that might be "wasted" on the mere act of recreation.  After I was diagnosed, almost weekly Phil would mention getting our passports to take a trip to Europe. We would watch Downton Abbey and talk about a River Cruise on Danube.

But the kids' activities keep me busy. Too busy to breathe. Too busy to consider a vacation, although part of me began acknowledging it was time. Then the brain mets. Another neon flashing warning that I do not have time to waste. Yet time with my children at activities - although draining, was not a waste. It is what I wanted to do- to BE there and BE part of their world because someday I won't be. I didn't know if I wanted to spare the time away from them.

I threw myself into nonprofit work. Expecting the passion from others I felt. Some friendships suffered, but in my mind, this was for my kids- a foundation for them for having to live with LFS. Resources available for when I would no longer be here to help them find what they needed. Connection to others. I struggled because family and friends come first, and even though my "work" was entirely volunteer and self driven- it is very important to me. I have a lot of support. Then a few things happened that made me really question what I wanted and again if time was limited- how did I want to triage it?

My 40th birthday. When I was diagnosed with metastatic cancer- forever cancer- terminal- although not immediately- I knew I was incurable. I don't like big parties- despite the fact that I love to throw a good theme party for my kids. BUT I decided 3 years ago- if I made it to 40, there would be a big party with all my friends and family- a chance to hang out and visit- so no one could assemble at my funeral and wish they had seen me. I started thinking about the locations and what would be easiest for people to get to and logistics and I didn't feel good about it. And ultimately what if I picked a convenient destination and no one showed. And Phil brought up the passports. Several of my friends came to visit and hang out. I was honored and grateful for our time together. And some friends pointed out that well I wasn't really a good friend or business partner. And I decided the friend who had stuck by me for every chemo, through surgeries, through loss, through 4 c-sections- through some crappy stuff- really wanted to go to Europe, with me. I wanted to go to Europe. The tough part now- was letting it be about ME. And so I set a fairly unrealistic expectation- giving him plenty of opportunity to cry foul and back out. But not the incredible friend I married- he threw me the best honeymoon, birthday, European themed extravaganza ever. I forgot to consider his drive to make me happy might outweigh logistical ease. I was OK with it being about US.  But then again, we wouldn't know what to do with easy if it hit us.

Where we went in Europe- transportation was fairly straightforward. There are lots of options and Phil did his homework. Just like the internet has been a game changer for support groups and friendships- it really takes a lot of confusion out of public transportation. We relied on subways and trains(my new favorite form of transportation!) a lot. When my knees started giving out from walking too far or all the stairs up and down to the subway, we could take a taxi, or uber or bus. Transportation options are limited in Hawaii- and it really was fascinating to see how well all of these  options worked for us at different times in Europe. Our plan wasn't to drive except in Italy. Phil rented a car so we could see more of Tuscany and explore at our own pace. Talk about an unforgettable experience.  Each destination really has it's own culture of driving. In general Europe drivers are pretty fast and I wouldn't call it reckless- but there is a bit of a learning curve coming from Hawaii for sure. The signs are different- Car Siri and Google Siri never agreed on directions and well me I was too busy looking around to be considered a competent navigator.

One day after some stressful driving on Italian roads- Phil had a 6 Km respite from directions or roundabouts or exits or turns. "We've had quite a few epic road trips together." Just like that I started thinking about some of our long drives that we could now add Tuscany to.  Besides countless trips through the mountains, there was the drive east from Colorado to DC the year after dad died. We stopped in Oklahoma and Ohio. Hitting 6 flags over Texas. There were countless trips from Boulder to the Springs, then there was the Spring break push to Arizona. There was the Christmas after Phillip was born from Texas to Colorado when I got carsick. The move from Texas to Florida to Virginia, then back to Florida. There were several drives to Disney. The the cross continent trip to California when we made our big move to Hawaii. I miss driving- picking a destination and just seeing what you can along the way. Stopping at some crazy restaurant or attraction you saw a billboard for. In Hawaii- barring the silly traffic you can drive around the island in about 3 hours. You see a lot of paradise in that time, but after awhile- it kinda feels like- look kids- Big Ben, Parliament but look kids traffic, rainbows. So yeah- we were the silly Americans who felt compelled to Lampoon our way through every roundabout we could- and were there ever a lot of roundabouts.

Several times we would just stop during one of our pedestrian outings and just watch the traffic- it's impressive and really amazing the near misses we saw. Motorcycles zooming through narrow divides,  how the drivers seem to just adapt to the craziness of it and go with the flow or zip right past it. It felt like our life. It was nice to sit back and see it generally worked out. To not have to be in the driver's seat. We often joked about could you imagine teaching young Phillip to drive here? Recovering from the thought of it required several beverages of the adult variety.

The day after we returned, I had a parent meeting for driver's ed with Phillip. Nothing ever starts on time in Hawaii- and I was on time for a meeting that obviously started before the time I thought. I walk into a packed classroom and already am labelled as the late parent. It doesn't actually earn the Haole mom any points. But I already have my license. They go over the basics- basically emphasizing this course is a small part of the process and actually getting an appointment to take the driver's test will be the true challenge. The instructors take it seriously, yet offer a couple jokes about teens and their nature and the hazards of learning to drive. The kids get 6 hours of behind the wheel(BTW) training. There are 44 other hours parents are responsible for. I raise my hand- Phillip's permit is several moths old- we've done a fair amount of driving. We've covered the basics- even logged some highway driving. In rush hour. Those long trips back from the hospital appointments are great for logging driving HOURS. Can we backlog those hours? Absolutely the instructor says- all hours count and they can tell which kids have had them and which haven't.

Another mom takes my cue and raises her hand- what if you are terrified to be in the car with your child driving? How do they get those other 44 hours? Oh dear. No one laughs. Oh. Ok. The instructor explains that anyone over 21 can help your child learn to drive- aunties, uncles, neighbors, you can even hire people for $45 an hour. $45 dollars an hour! Forget Uber- I'm gonna let teens drive me around. I have good insurance- it should be fine. The instructor points out some of the basics they focus on in their BTW training and encourages parents to do so as well. One of our first lessons is driving backwards, we start at the parking lot and drive down the road to the boys and girls club parking lot. 

I laugh out loud. The room turns and looks at me. The instructor is not smiling- he continues on about this backwards driving lesson. Shit, it's not a joke.  So yes the kids get 6 hours of "official" DMV sanctioned/regulated BTW training and 1/6 of that is learning how to drive BACKWARDS! BACKWARDS. Driving. in a car. with 2 other teens waiting their turn. TO DRIVE BACKWARDS. Well it explains why a disproportionate number of people back into parking spaces here and don't stop for red lights- that part only gets a few minutes.

My brother got his license after his brain surgery. There was much talk about his wearing a baseball cap and hopefully no one would notice his shaved head or crescent shaped scar during the process. There were several times I refused flat out to drive in the car with him and walked home. Because I was 14 and knew everything and he simply was my brother and drove like a teenager- not because he had a brain tumor. I think I made my mom's job infinitely harder during that time- it's hard enough to make shitastic decisions between your dying child's biggest wish and general motorist safety without having a teenager question your every move. The judgement of others when dealing with these stressful times is never helpful. Especially young unexperienced teens. Or family. Or people who should be there to support you. We all lose a piece of our sanity and focus during times like that. You just do the best you can. Any time you get behind the wheel- you hope for the best and a whole bunch of luck. And always remember every one is driving with a condition you know nothing about ;)

I remember learning to drive with my dad. He was all about the defensive driving training- so theoretically I can reason my way through this craziness of driver's ed in Hawaii- but TBH I really feel a big proportion of that time might be better spent on different skills. Dad took me out in the rain, He took me to hills, in a stick shift- which I never figured out, until I was in college and a woman explained it to me in a way that made sense. We practiced skidding on ice, he would throw emergencies at me and I would have to react. We found dirt roads with ditches on either side. I learned that sometimes you may have to decide between hitting a fluffy animal and saving 2 cars of people. I learned to take the foot off the gas going into a turn and accelerate out of the turn- we went up into the mountains and practiced hairpin turns. He kept a running tally of points in his mind of all my infractions- points that had no real world equivalent but was a way for him to point out to me where I screwed up without screaming that I screwed up. I even got to drive around Maui in a convertible- with my mom furiously shaking the back of the seat like the secondary brake she wished she had. I thought I would be like my mom when Phillip drove- and he probably will tell you I do a fair amount of yelling- which may be partially true. But overall he's doing really well. I have no idea how well he drives backwards though. Fortunately I know more than enough time will be allotted for that in Driver's Ed-so if he abandons biology or music as his educational loves- he might pursue a career in stunt driving.

4 years ago- our world was thrown into yet another tailspin when I was diagnosed with Breast Cancer and Sarcoma. I had multiple surgeries in the span of a week. The urgency was that I had planned an epic summer trip with my kids to visit family and show them The places I grew up and I'd be damned if I was gonna let cancer throw a wrench in it. We drove from New York to Philly- where we visited with my aunts uncle and cousins and grandmas. Phil had to go back to work so the kids and I drove to Ohio to visit my cousin on her farm where Phillip got to drive around the Rustler. There may have been an incident with a ditch, but lessons were learned.

 We took them to Cedar Point- a childhood summer staple. I showed them where I was born in Toledo.  We stopped in to Cincinnati to see my Aunt and Uncle and cousins. I drove and drove and drove. It seemed to rain every time I got in the car. The kids watched Arrietty and Jackie Chan- over and over and over.  We grabbed my aunt in Philly and drove to Boston for full body MRI's - because when you live with LFS- you try and make the crap fun. And I had never seen Boston- so it seemed like a good idea. A year and a half later I'd get to go back to Boston, this time with cancer mets and solid support system of mutant friends along side my family and friends.

Like anything in my life- daily reminders pop out at me of what I have lost and what I am so blessed beyond words to get to enjoy. While Phillip drives he'll throw wacky questions at me. We have really good discussions about stuff I don't think he'd ever talk about otherwise. He's focusing on driving so he doesn't have to look at me while I talk back- but even if he pretends not to listen- some of it is bound to sink in. I don't remember many of the exact conversations I had with dad- but I know they are the foundation of who I am and what I believe. Just like I may not remember every ear infection, every fever, but I know mom was always there taking care of me. And she worked. And she was still a good mom. And sometimes she stayed home and she was still a good nurse and an equal part of my foundation. They are not mutually exclusive. Phillip is at the point he is beginning to worry about the what next. Getting his license has been a subconscious battle- I think he's leery of having the transportation responsibilities on his plate. He's worried about college. He's worried about me.

 Kiera and I have gotten to talk so much in our countless drives back and forth to activities. She is excited to get her permit and already pledges to take her sisters everywhere when she can drive. But then again she has the parental safety net for 3 more years whereas Phillip is in the final stretch. I would be lying if I didn't think about Phillip's graduation in a year and worry that it will parallel my high school graduation. I don't want to be the sick or dying parent. I also really want to be there- for all their graduations. But as many friends lament every single time their child grows bigger- with the "where did my baby go" - I grin and bear it because this year- I got to teach my son how to drive and that was something 4 years ago I wasn't sure would happen. And here we are. I'm grateful to be a part of each moment and milestone I can. I do a lot of good thinking while I drive and today as I drove back from the other side of the island- it occurred to me that for quite awhile I've felt a different drive- a need to get things in order, to impart on them everything I can for the eventuality that I might not be here. Yet on any given day that eventuality could become a reality. For anyone. And I am proud of my kids and would it be easy - of course not- it is never ever easy to lose someone. But our destination will ultimately be the same and we don't know how long it really takes until we get there. Our routes may be different and some of us just happen to be on the route with the big hills and lots of twists- but it will always be a drive to remember.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)