Ambassadors to Purgatory

I have decided Laura and I have become defacto Ambassadors to Purgatory. We keep meeting parents with kids just diagnosed with “something”. When we find them, we lift our wings and pull them in close to give them a crash course in how to live in the awful middle space between potential disaster and normal daily life.

“This is called an IEP. Your kid needs one. If someone tries to fight you on this, here are the ninja moves you will used to take them down”.

“Here is the language you will need to use to let X, Y and Z institution know that you mean business. If you use these words, they will know they better not fuck with you. ”

“Here are the proper tools (blender, adaptive stroller, etc) you will need when heading out for this territory”.

“Don’t ever turn down any help offered. Ever. That includes this advice”.

I want a shiny badge. Or a sash. Or maybe our own punk rock band. It’s kind of the perfect name, right? “Introducing Ambassadors to Purgatory! Ahhhhhhhhhhhhhhhhhhhh!!!!!!!!” There could be lots of screaming and throwing things and jumping up and down. It’s what I often feel like doing. Might as well get a stage for it.

Wherever we go, we find parents with kids that have just been diagnosed with some “issue”. Sometimes we can spot them a mile away and make our way over to them, sometimes they know about us and awkwardly hover until they figure out how to “come out” and sometimes we just stumble upon them in the line at the post office.

We’ve both gotten our 20 minute "here's how you're going to figure out how to live with this awful reality" pep talk down pat. Mine usually includes a) find a listserv for parents with kids who have your kid’s issue, b) don’t go searching on the internet, c) take any help offered to you, d) if you have a partner, make a regular date night mandatory, e) the address of our blog, f) connecting them to any other people we know who have this issue, g) reassurance that yes, it could be worse (parents will often say that), but also, whatever situation you are in SUCKS and it’s okay to be really, really pissed about it. This doesn’t have to be pretty.

Sometimes, though,I don’t feel like a glamorous ambassador with a pressed suit and an attache. Sometimes I feel like a grizzly old mountain man with half his face eaten off by a bear, warning people about bear attacks. Every once in a while, I have to check myself to not give too many gory details about how hard it can get, about what it actually feels like to have the flesh ripped off your body or wonder if you’re going to make it. I scan for the tell-tale glaze in their eyes or the shortness of breath or the pale face that tells me I’ve skipped to the Advanced Placement Survival Course when we’re still on introductions.

Then I will say cheerily, “It’s such a mix, you know! I have met some of the most amazing people and just been broken wide open by this whole thing in the best possible way”. Often, I really want to say, “Wow, you guys are totally screwed and it sounds like you best get into therapy ASAP cuz this is going to be a shit-show of epic proportions”. Still fine tuning the level of detail given to the newbies. So far no one has passed out or run away screaming. Yet.

Obviously Laura and I are both “helpers”. She’s a social worker, I work in public health. It’s just part of who we are. We both seek out people who look like they could use a little extra something, hunt around for whatever we have that might be useful, get close to people we just met because…well…they’re human and we’re human and I think humans are meant to connect to each other.

Most of the time I LOVE this quality about both of us. How could we pass up an opportunity to give even a modicum of support to other parents if we have something to spare? Connecting to someone in crisis, providing much needed information, support and resource, listening. I love it. It helps me feel like there is some purpose for what we have been through.

There is a cost for all these connections though. We carry the stories of all these people we are connected to and all the tragedies they face, in banged up little suitcases in our hearts. Sometimes I find myself thinking about the parents 3000 miles away who have lost a kid, or the family in the hospital in Spain or what the future might look like for the kid with the degenerative disease that is picking up steam. It’s like I have a whole teeming city in my brain and heart while most folks have a tight little village.

Lucky for me I’m a city girl. When people disparage Oakland, citing crime and Occupy Oakland and conflict, I just say, “that’s the price I’m willing to pay to live in an interesting, diverse, vibrant, urban area. It’s the price of admission to an amazing place”.

When someone says to me, “How can you spend so much time listening to other people’s stories and getting so involved”, I think I will now say, “If that’s the price of admission to be connected to other human beings in the best way I know how, to share what I’ve been given, to be an Ambassador, it’s a price I’m willing to pay.”

I think we are all Ambassadors to different things in our lives. Figure out what yours is and go help someone. Maybe it’s bike repair. Maybe it’s information about pregnancy and childbirth. Maybe it’s personal finance. Maybe it’s making things look pretty. Ours happens to be kind of gnarly, and so be it.

I am pretty sure a big part of why we are here on this planet is to help each other in whatever ways we can.

Pin on your badge and get out there and do your thing.

Written by:

Jaime

The Skin I'm In

It's nice skin. I think it is, at least. It's always been one of my favorite part of me. It's pretty soft in places, a nice color and parts of it definitely tell the story of specific times in my life.

Two very small cat scratch scars will always remind me of Charlie (the chicken cat who took a flying leap off my chest from were he was sleeping when someone came through the front door.) A funny shaped burn scar on the inside of my right knee from when I was learning about fire making/tending/cooking at camp one summer. Five scars; three on my hand and two just below my ribs from my motorcycle accident in 1996. The very mild dent and scar on my forehead from when I was showing off being a stunt man when I was 9. "Look Ma, I can walk into this parking meter and not hurt myself."- Seriously though I had done it several times before and not gotten hurt.

It's my skin.  No one else's. I take it with me whereever I go. It changes color when I'm out in the sun. It sloughs off at certain times and heals itself. Supposedly, on a seven year cycle, every single cell of our outer epidermis will regenerate. We are forever in our skin but it's forever changing.

This weekend my skin and I took off for the weekend. We had an amazing 46 hours with our dear friend Anna. It was a much needed break from a rough month prior, and more than anything, a time to connect with a dear friend, sans child and tube feedings, medications, laundry, dinosaurs, and blended anything. It would include an overnight at a swanky timeshare (thanks to her in-laws), a concert, meals out (where we might even have to wait in line!), lots of adult conversation, uninterrupted sleep, and maybe even some reading time with a book where nothing rhymed or had pages with pictures on it.

It was lovely. I even made it a good 26 hours into our weekend without crying.

And then I realized that my skin and I still carried all that was inside of me.

We were sitting at the Dolores Street Cafe, the two of us, along with three other dear friends. Some fine acoustic folk music was playing and for some reason my eyes drifted from the musicians up front to the crowded room where an array of San Franciscans (and others) were tightly packed, eating salads, sandwiches, and various cold and hot beverages. There were short-haired ladies, long-haired men, more than a few that I couldn't tell, and generations from before and after me. It was a nice crowd, I thought. People were making eye contact and smiling, moving chairs so that others could squeeze theirs in. Sliding over on benches to get just one more hiny placed. It was a nice crowd.

And then I felt it. It was like a wave of loneliness pressing down on my chest.
No one knows.
No one knows here (except for my friends with me), that I have a child at home who is tube-fed.
No one knows that I administer medications to him three times a day.
No one knows that he has a surgically-placed port sticking out of his belly that I turn several times a day so that his ever-leaking (however minuscule) stomach juices don't build up and cause irritation around his skin.
No one knows that he is delayed in interactive speech, gross motor skills, cognition, and has low muscle tone.
No one knows about the appointments, fear of fevers, echocardiograms, blood draws, and lifelong diagnosis that he lives with; that I live with.
And on and on.

I felt so alone and feeling alone in a room packed full of people can sometimes make you feel even more along.

I know that every single one of those people in that room was leading some kind of extraordinary life. We all do at some time. Everyone has a story, and up until 4 years ago, I knew that my story  was mostly in line with your typical life story. It had ups and downs and long stretches of 'that's just how it is'. I had life altering moments, great love, heartbreak, play, work, and some travel.

Almost exactly 4 years ago my life became a-typical. Everyday was significantly different from the majority of people that I knew and shared space with. Every moment became worth more because the full spectrum of life experience was held in it. The spectrum that included new life and possible death. My life became about so much more than me and not just in that way that a new mother gets to learn that lesson, but in the new parent of a child with a lifelong critical illness with special needs kind of way.

Sitting in that room with all those people. I was still me. I was still me in my own skin.
But, I was without my anchor. I was without Simon, who has brought me to this new life. A life that I relish. A life that I could not and would not choose to change, unless it meant a cure for the future without changing everything that we have learned from and gained from, that we have gone through already.

This kind of time away from Simon has happened four times in four years. I get chunks of time here and there but an overnight or even two nights is more like a once a year occurrence (which is amazing!!). It's without Simon, without Jaime, and away from our home. It's meant to really let me recharge and reconnect with myself (and sometimes a friend) in a way that I can't when I get a 2 hour chunk of time "off".

And I did it. I didn't think about what time it was and was he getting his Lasix on time or was he getting tired now or did he get fed close enough to waking that we could maximize on hunger as got closer to the next feed.

Still, in that moment at the cafe, I felt it. I felt what I carry with me all the time. I felt the difference that is my life in relation to the lives that (probably) most other folk in that cafe are living. It's different in a different way. Then Ty (from GirlyMan) sang about being "not quite lost, not quite found. Just somewhere different now" and I cried.

I cried because I felt so alone. I cried because my life is so different.
I cried because Simon is alive.
I cried because I love him so much.
I cried because I was away from him.
I cried because it was good to be away.
I cried because it's a great song.
I cried because I have amazing friends.
I just cried.

It was good.
 
And then I was back. Back in my skin that I am mostly really comfortable in. Back in my skin that has its scars, and tattoos, and changes to nice nut-brown in the sun. I still felt my extra-ordinaryness. I still felt different. But it was ok. I felt more in line with the bigger thinking about how we all have our stories. We all have our extraordinary moments.

It was a feeling more about connectedness that isolation. It even felt sweet.

Like the guys in San Quentin used to say "it's all good."
It's fucking hard, but it's all good.

Oh yeah, and i went to yoga 4 times last week! I went today and I'm going tomorrow too! Fucking proud of myself. Goooo Laura!

A visit from Mr. Clay always inspires Love

Summer Chillaxin'

 Bounce House Fun

 

How he fell asleep the other night

Written by:

Laura

 

Mahalo, Mamaw

We just had one of the best vacations of my life!

My Mom (aka Mamaw) turned 65 this year and for her birthday, she decided that she wanted to take her family to Hawaii for a week.  I know, crazy right?  I remind you that this is the woman that drives an hour each way every week to give us a date night.  I am forever racking my brain to figure out how to pay her back for the weekly generosity.  After this trip, I have a monumental challenge.

This post should also be "Mahalo, Laura".  Laura made it possible for me to have one of the best vacations of my life with Simon there.  While I was reveling in the delight of the warm, tropic breezes and enjoying our excursions , she continued to manage all the logics of Simon's care.  She blended and froze*6* double batches of his food in the short week between this trip and the trip we had the week before to Albuquerque.  She made sure all his documents for travel were up to date.  When we were out and about in Hawaii, her internal clock kept Simon's feeds and meds and (potential) naptimes happening when they needed to happen.  She calculated how much colder the ice packs were that we brought and if we were out, how far in advance his food needed to get off the ice pack so his food wasn't frozen when it was time for a feed.  She kept Simon and his care front and center in her mind on this trip as she does always, and it gave me the space to have an amazing experience.  And, as you might imagine, keeping track of all those details in a new place, with 5 other people in the mix made for a trip that was not as relaxing and enjoyable as my experience.  She still had fun, but it really wasn't DOWN TIME.  I think any primary parent will attest that traveling with your charges, even if the locale is beautiful, is a little like taking your laptop to the beach.  The scenery is pretty but you still have to work.   It was a learning lesson for me.  Figuring out how to take more of those pieces on is something I really want to be mindful of on our next vacation.

 

 

Saturday (6/23)

We (me, Laura, Simon, my Mom, my stepdad, my Aunties Judy and Kris) all met at the Oakland airport in the morning to wing our way to the island of Hawaii.  After an uneventful flight (Simon napped!) we landed in warm, sunny Kona at noon, with a full day ahead of us.  We got our rental cars and headed out to our amazing condos at Holua Resort at Mauna Loa Village. Ours was a gorgeous 1 bedroom bigger than our apartment at home, with a full kitchen, king bed and best of all, a fold out couch in the living room, which meant that we got to sleep in a different room from Simon for a week.  Ahhhhh sleep. 

We hit the grocery store, came home to unpack and then went out for some of the best Thai food ever.  After lunch, we went for a dip in one of the *8* pools in the complex. Laura and I put Simon to bed and then headed out to our balcony to read for a bit in the warm night air.  It was delightful. 

View from our balcony

Directly under our balcony

 

Living room of other condo

Pool directly outside our unit

 As you can see, it was a pretty awesome place to stay!

 

 

Sunday (6/24)

Despite the fact that Simon woke up at 3:30 a.m. due to the time change, we had a great day.  We watched tennis players right outside our condo (Simon is a little obsessed).  We also learned about a new game called Pickleball that I describe as a senior citizen version of a cross between tennis and ping pong.  Simon could not get enough of Pickleball.  Like, ever.  We sat for an hour at a time watching people play.  I'm all about free, convenient entertainment for my kid, so it was awesome.

We went to beach with a totally treacherous way in (craggy lava insanity) but it was worth it.  Simon played in the shallows with me and every one else took turns snorkeling.  While my Mom was hanging onto a boogie board, a dog climbed up her back to get onto the board.  While she got a pretty good scratch, my Mom (and the rest of us) thought it was bizarre and quite hilarious.  Surfer dogs.  Gotta love Hawaii. 

We forgot to take pics.  Oops!

 

Monday (6/25)

 Our first venture to the local beach looked like this: 

Yep, that's a big ole sea turtle.  RIGHT THERE.  

It also looked like this:

Famous Hawaiian Shave Ice

That night, we went out to dinner to celebrate my Mom's birthday (it was May 11th, but it's never to late to celebrate). We had tasty food and an amazing view of the sunset and a garden for Simon to romp around in with his aunties when he got tired of sitting.

Auntie Judy and Simon checking the garden

Simon next to fresh lemongrass growing.  I had no idea that's what it looked like!

 

The FJ Family with Grandpa Eddie

 

Tuesday (6/26)

This day was totally over the top.  Simon and Laura had a 9:15 a.m. appointment with a dolphin.  No joke.

First we drove through what looked like moonscape to get to the Waikoloa Hilton.

We were in a hurry to get there so that Simon and Laura  could get up close and personal with dolphins.

We rented a room for the day (who knew you could do that!) so we could have  a fridge for Simon's food, showers and a place to take a nap if we needed to.

View from the balcony of our room

View from the front door of our room

Then we went swimming in the amazing pools

Swimming is HARD work!

 

Please note my step-father in my Mother's hat in the background

 

Some of us went down waterslides:

That afternoon, our friend Chewy, who lives on the other side of the island (a few hours away), flew in from a visit to California and crashed with us for a few nights so she wouldn't have to drive back any forth before her Mom flew in on Thursday.

Laura, Chewy, Mamaw

 

Wednesday (6/27)

Chewy brought coconuts, avocados and mangos in the back of her truck.  And a machete.

Simon, chilling in the parking lot drinking fresh coconut water from a bamboo straw Chewy happened to have in her truck. I love a prepared woman!

In the morning we went to a Farmer's Market and cracked fresh macadamia nuts, samples bizarro fruits and poked around at odds and ends.  That afternoon, we went to a playground and Simon ran around like a wild man.

 Later that day, we went into the town of Kona and stopped in a Flea Market to get fresh fruit.  We got mangos, mountain apples, lychees and pineapple.  The woman threw in a free strawberry papaya just because.  They were all awesome.  We walked around Kona for a while:

Beautiful flowers everywhere!

 Simon, goofing in Kona

 

Thursday 6/28

This day was not so good.  In the morning as we were planning our day, my Mother began to have chest pain with pain radiating down her arm. I sat through a "Women and Heart Disease" lecture about 15 times at a former job and the thing I remember most was that women often have vague symptoms, don't want to bother anyone and often don't go to the hospital to get help until there is already damage.  We talked about what to do for about 5 minutes before I made the executive decision that we were calling 911.

My stepdad and I spent all day in the ER of the podunk Community Hospital with my Mom while they ran all sorts of tests.  The highlight was the "IV intepretive dance" I created on the spot to distract my Mom while they put a bigger bore IV in so they could do a CT with contrast on her lungs.

The low points were listening to all the trauma and drama around us.  There was some nasty stuff going on, including the middle aged woman we were sharing the tiny curtained off area getting diagnosed with, wait for it...Congestive Heart Failure.  I felt a little lightheaded with that gone. There was also a young guy with some major trauma who ended up getting intubated.  I was really ready to get the hell out of there. (FYI, she ended up getting discharged the next morning with antibiotics for a suspected lung infection and started feeling better within 24 hours.)

When I was home that night after my stepdad came back to be with my Mom at the hospital, I just sat in the car with Laura and cried uncontrollably for about 5 minutes.  It was kind of bizarre and totally the appropriate response given the PTSD we likely both have from Simon's hospital time.

We decided to go to Kona and walk around town to clear my head.  It was perfect.

Iris, an incredibly sweet Israeli woman we met who was working at a shop on the strip.  We stopped and chatted for at least 30 minutes.  Of course, she fell in love with Simon.

 

Simon was desperate to see hula dancers and we managed to actually find a Luau across a little inlet and "poached" some hula.

Friday 6/29

We found the MOST amazing playground on this day

Each picnic table is in the shape of one of the islands

 

Picnic tables in the shape of each of the islands

Hand carved portraits of each of the kings and queens of Hawaii

We also got Simon some up close and personal hula at the shopping center near our condo.  The video didn't turn out so well from this, but Simon dug it.

This night Laura and Ed went on a night snorkel to swim with Manta Rays in the ocean!  No pics of this, but Laura said it was amazing and she had a 9 foot diameter ray inches from her.

No pics from their adventure, but for the record, this is what they were swimming with:

Saturday 6/30

This day we went to a cultural festival at a fascinating place called The City of Refuge.  This is the blurb from the National Park Site to explain what it represents:
Imagine you had just broken the sacred laws, the Kapu, and the only punishment was death.  Your only chance of survival is to elude your pursuers and reach the Pu'uhonua, a place of refuge.  The Pu'uhonua protected the kapu breaker, civilians during the time of war and the defeated warriors.  No harm could come to those who reached the boundaries of the place of refuge.

Mom making a beautiful garland for her hat.

 

Cool sand wheelchairs!

Kava (an herb often used to help reduce anxiety/insomnia).  Usually drunk in Hawaiian culture as part of a ritual but they were just serving samples.

Simon trying Kava.  It made my tongue and throat numb for a while but I sure felt mellow!

Simon fell asleep on the way home so we went to the South Kona Fruit Stand where we got mangosteen, rose apples, mangos, soursop, passion fruit, loquats and apple bananas.  Yum. Laura fell in love with this kittie there:

That afternoon, Laura, my Mom, Simon and I went to a beach that was less for snorkeling and more for waves.  Holy crap.  It was 10% fun and 90% terrifying for me (I'm a chicken when it comes to the ocean) but Simon LOVED it.  Twice he got slammed by a wave and knocked under (well, the adult holding him did-  once me and once my Mom- and he went under too) and each time, once he stopped sputtering, he demanded, "BACK IN THE WATER".  He is Laura's boy, that's for dang sure.

Simon and Laura post-ocean, both with slightly maniacal looks on their faces

 

Video of Simon surfing the waves

Please notice my dorky sun protection suit and glowing white legs and then notice the color of my son's legs.  Redhead at the beach v. Laura's genes at the beach.

Laura managed to even surf a little with our boogie board!

That night my Mom gave Laura and I date night and we went back into Kona and had some of the best fresh Ahi tuna (caught that morning) and walked around town once more.

Sunday 7/1

On our last day, Auntie Kris sprung for us to take a *Submarine* ride and go over 100 feet down in the water.  It was so cool!

Real, live shipwreck. 

Me, muffling Simon's very loud singing on the very small submarine

Laura and Simon on the boat to the sub

Mamaw and the Aunties on the boat to the submarine

Simon, on the boat to the submarine

When we got off the boat, we saw a big crowd gathered at the beach just across the parking lot from the dock.  Turns out there was a very rare monk seal chilling on the beach!  I found out later it was incredibly rare to get this close because there is a state law that mandates a 100 foot distance from them if you see them.  The line the marine specialist on scene drew was only about 10 feet and then at one point, the seal started halumphing up the beach directly at us (I got up with Simon and booked it) but it was only about 5 feet away for a few seconds.

Finally, just before we drove to the airport, Laura made a run here for the most amazing fresh poke (the tender delicious bits of fish left on the skeleton after a fish is filleted).

The plane was a bit late but I could care less because the waiting area is outside and it was a gorgeous day.  The flight was uneventful and thankfully the last half of the flight looked like this:

We got in at around midnight (ouch) and couldn't go to sleep until about 2 a.m. so the wake up at 6:30 the next morning (which was really 3:30 a.m. Hawaii time) really hurt.  But honestly, SO WHAT?  We got to go to HAWAII!!!!

Written by:

Jaime