Camp Taylor: A Swing and a Miss

This past weekend we went back to Camp Taylor, a camp for kids with cardiac issues. We went two years ago and we were excited to go again.  This year it was amazing and...kind of a bust.

Fortune was frowning on us from the beginning. Simon got sick (spiked a fever) the Wed night before we went and missed school Thursday.  By Friday morning, he didn't have a fever  but didn't go to school. Our doctor said he should be good to go to camp the next day, though, in terms of contagion.

Saturday morning, we optimistically packed up and drove to the absolutely gorgeous Livermore valley.  Who knew it was so incredibly beautiful out there?  I so want to go back in the winter when the rolling foothills are all green.  The landscape is my idea of heaven.

The camp was held at Camp Arroyo, a YMCA facility that is used for many camps for kids with health issues.  It's brilliant- "green" built facility that gives you an outdoor experience but makes it manageable for medically complicated kids.  You get around by golf carts driven by volunteers, there is a huge climbing wall and ropes course, a swimming pool (the bathroom/changing room building was built using the dirt that was dug out to make the pool!), gorgeous patio off the main lodge/cafeteria and a big meadow with archery and  other fun stations.  It's breathtaking.

The meadow, taken from the archery range

When we first arrived, we parked our car and got ferried by golf cart down to the meadow.   We got hugs from familiar faces from the year before and then saw a family that we met our very first days at Children's Hospital Oakland.

Audrey, now 4, was one week old when we met her.  She was in the bed just around the corner from us and had open heart surgery.  The first time I ever saw her, I saw her heart.  Literally.  They had left her chest open and basically put a piece of medical plastic wrap over her beating heart in case there were complications.  It was one of the most intense things I have ever seen. And now, she was a walking, talking, 4 year old girl.  It kind of took my breath away.  She and Simon became fast friends, but more about that later.

We got checked in and introduced to our "Mentor" Casey.  The camp pairs every family with a teenager who has grown up with heart disease.  It's so smart, especially for the older kids.  Simon took to Casey right away and we romped around the meadow as a team.

There were HORSES!  A local horse club brought out 3 horses to ride and a big draft horse to pull the wagon.  Simon was so over riding horses. Please.  He does that every week with hippotherapy.  He was all about the wagon.  I think I counted 6 laps in that wagon.

Simon is the tiny little turquoise head

We were getting a little tired of the wagon, so we dragged him over to the archery range.  There were LOTS of jokes about our kids surviving heart disease only to get taken out by an arrow.  Lots.

Simon, learning about bows and arrows

The key is the funny face

Katniss, eat your heart out (Hunger Games reference for people reading after 2012)

Simon the Archer

After a few hours of play, it was time for lunch back up at the main lodge.  We were seated with Audrey and her family (planned?  coincidence?  Regardless it was awesome!), another really sweet family from a very rural part of the state (Dad is a walnut farmer!) with 2 kids (one with heart disease and one without) and Casey.

The other great thing about this camp is that it's for kids with heart disease and their siblings.  There is programming for siblings and it makes for a great mix of kids of all ages. Lots of chatting, lots of loud singing and then it was WAY time for Simon to take a nap.  We decided to drive to our hotel and check in.  There were only a limited number of cabins at Camp Arroyo, so first time families got those and returning families stayed in a hotel about 15 minutes away.  We would be missing the Heart Education session and Arts and Crafts, but it was no biggie if he was going to sleep.

He fell asleep in the car but, of course, woke up during the transfer and was WIDE AWAKE, thank you very much.  He was starting to have a bit of a deep, wet cough, but seemed basically okay.  I was exhausted so I laid down for 20 minutes and then Laura laid down.  She was completely wiped out.  This should have been a clue.  She looked so wrecked I tried to get her to stay there and take him back to camp for dinner myself but she wanted to go with us.

This ended up being the best time we had all weekend. Simon played at the ping pong table and the pool table on the patio outside the dining hall.  And learned to jump rope.  It was hilarious.

Learning to jump rope

I GOT THIS!

Laura ate first and I hung out with Simon (he had NO interest in food b/c of his cold) on the patio. Then we switched and while I was inside, the other 2 moms from our table were chatting and I joined in.  Before I knew it, we were recounting our most godawful, gut-wrenching, in-the-trenches stories in the way that other parents talk about their kid's little league games.

It was so cathartic to get be with other parents that "get it" about the trauma and it was so hard because I had to run out to relieve Laura and we were in the middle of happy camp and there were kids running around.  The kids need happy- normal space and the parents need a place to not have to be happy and okay, with people that understand what we're carrying all the time.  Laura wants to offer to facilitate a parents-only support group next year, with no mentors and no kids, so we can really unpack some of this stuff with other parents who understand it as no one else can. I can't wait.

Soon it was time for campfire and Simon was totally digging the golf carts so I foolishly thought that, though it was already 7:30 and he had been sick all week and not napped, that maybe we take a cart up and hang for campfire.  Hah.  Freak-out-melt-down-back-in-the-golf-cart-bye-bye.

Beautiful campfire site

His face just about sums it up

 *sigh*

 Right, of course we can't do the normal things everyone else is doing. Even the 2 year old is game for campfire time. Not our kid.  Nope.  Even at heart camp, we are on the fringes. This began a theme that continued all the next day.

He slept in the next morning which was great but also meant we kind of had to hustle to get to camp in time for breakfast. We traded off eating/playing with Simon again. He was grumpy. Laura didn't feel great.  But we were going to do camp, goddamnit.  

We spent the next few hours playing on the lawn and then swimming, where Simon pooped in 2 swim diapers and had an epic barf that I managed to angle at the grass.  Delightful experience for the swimmers, I'm sure.

That's how we hula hoop in our family

Mentors jumping a HUGE rope

Then we all went up to the climbing wall/ropes course area for Wildlife Classroom.  Oh. My. God. It was so cool.  This totally kooky couple has all these wild animals that you've never seen in real life and they're SO CLOSE.

Some kind of little fox found on the continent of Africa

Ocelot!

Some awesome kind of wild cat

Lemur!

Friendly lemur

Zip line! I was so NOT getting up on that thing.

Brave kids on the zip line

Simon, maxin and relaxin with our Mentor, Casey

Simon and Audrey, snuggling

Does this even need words???

Hah!  I got him!

Then it was time for lunch. Once again, Simon was having nothing to do with being near food or at the table.    Laura was off with him in a corner and I ate some food and then we switched.  I took him outside on the patio. Then he started a mantra of "I want to go home".  Loudly.  Within earshot of the director of the camp. The one who has dedicated her life to this camp and provides all this amazing stuff for free.  Yep, he saved the loudest, most pathetic, plaintive "I want to go home!" wails for her ears.  It was awful.

She came over to try to engage him and distract him and it was an epic fail, through no fault of her own.  She asked him to tell her about himself.  I wanted to tell her that was like asking him to speak Japanese, but didn't want to shut things down so I just let it go.  Nothing.  She gave him a huge stuffed snake.  His response?  "I want to go home!".  Every bit of training I got from my Texas blue-blood grandmother about how to be a gracious guest was being blown to smithereens by this child.  After 20 minutes of this, we decided to take him back to the hotel, even though it was only an hour until dinner.

Once we got in the car, I had a total freak out.  I was not having fun because he was not having fun and Laura looked like she was getting sicker by the minute and Simon's cough was worse and God should smite us for bringing germs to a cardiac camp and I wanted to die a thousand deaths for being rude by leaving early but really if I hear "I want to go home" one more time someone is going to get hurt.  We went back and forth- do we just get the iPad and let him plug in through dinner but that's not what CAMP is about (that was me) then what was the point if we couldn't go to campfire and what was happening the next day, etc, etc.  I finally said out loud, "Okay, Universe, I turn this over to you.  Please give me a clear sign so that we know what to do".  About 30 seconds later, Simon had the most nasty, juicy, hideous coughing fit and we looked at each other and said, "we're out".

We went back to say regretful goodbyes and then back to the hotel to pack our stuff.  By the time we got home, Laura was sick as a dog and has been laid out for the last two days.  We totally made the right choice  to leave but I feel horrible about a) possibly exposing the families to our germs when we weren't sure if he was totally well and b) having to leave early at all.  It just felt rude, even though it was necessary.

I've been mulling over part of what felt so hard about this time at camp that didn't come up 2 years ago.  Maybe it's that I've had more time to build up more expectations.  Or have more tender spots that I hoped would be soothed there. Not sure exactly...

 Apparently I hoped that at Heart Camp his stuff wouldn't get noticed but it did.  Person after person looked so concerned at his barfing and I had to keep explaining, "this is just what we do". People didn't seem to quite get it in the way I hoped they would. I kind of wanted to let the "Simon Tour Guide" role go but we still had to explain stuff more than I hoped.  Everyone was amazing and friendly and fighting their own battles, obviously.  It just felt like work-mostly because Simon required so much attention the whole time.  I had dreamed that we could let him run off with the other kids and have meaningful conversations with other adults and feel connected.  I just felt like we were only able to pick up crumbs and only got to have the same surface conversations we have with parents at the playground (albeit with better responses this time!)

At some point over the weekend, I remembered that all the other children at camp (except one other kid) had congenital heart defects.  This means they had something structurally wrong with the hearts that could be treated with surgery.  The most common question we got asked was "what kind of surgery did he have?".

Many of these children have restricted activity and big ole scars and probably some meds.  The difference is that there was some crisis, at birth, and then some surgery happened and then there was a road map.  They may have another surgery coming up but there is some reasonable idea of what might happen in the future.  We don't really have that.  We don't have a surgery or a fix or a clear idea of what to expect when he's 20.

Coming to that realization that our experience, while similar in many ways, was also very different from these families left me feeling profoundly alone. Even though (we heard) there were other kids with g-tubes, not a single other family tube fed their kid in public.  No one else's kid gagged and retched and heaved so loudly they silenced a room. No one else's kid wailed and cried and begged to go home.  No one else's kid couldn't hold up their end of an  age appropriate conversation (unless they clearly had some other diagnosis). Just ours.  And it felt awful.

I thought that being with other "heart parents" would feel like a relief.  Two years ago it did.  But Simon is 2 years older and more things are showing. Our experience this weekend reinforced that our particular constellation of challenges are unique.  We can fit a little slice with this group and a little slice with that group but aside from our Cardiomyopathy listserv group, we're kind of our own little island.  Or so it feels.  I know we're not ALONE, but I really just wanted to blend in for once.

Instead we had to leave.

Next year.  Maybe next year will be different. 

L'shanah haba'ah b'Camp Taylor! 
(Next Year at Camp Taylor!)

Written by:

Jaime

Sweet Child O' Mine

Our Littles carry so much with them. From the moment they are born they are like sponges. Maybe more porous at different times but still always taking in somewhat of their world around them.
For those of us that parent Little ones that have to go through so much during those first years (or even later years) it is amazing and heartbreaking to watch the ways it comes back/out/around again.

This morning Simon and I were just finishing up our morning routine. We had finished his tube feeding, he'd gotten his morning meds, the diuretic had kicked in and we were getting ready to change a diaper (his) and move from pajamas to clothes.  We were both in good spirits thinking about the day ahead. It included a meet up with folks we adored at a venue that induced huge smiles whenever it was mentioned (The Tilden Park Steam Train...duh!).

Blended food was prepared and packed with an ice pack. Shoes were on. Snacks in baggies and we were ready to go. Then, as I was just getting ready to ask Simon to head out the door I see him lie down on the kitchen floor and begin a familiar rant.

"Simon's gone. Simon's lost. I'm not here. I can't go anywhere."

I hadn't even told him that we were moments away from walking out the door but clearly he felt it.
"I'm gone. I'm not here. Simon's not here."

It's not as if this is the first time he's done this. It's very sad to hear and we don't exactly know what it's about but we let him work it out either mirroring it back to him "you feel lost, you're not here" or letting him know how we would feel if it were true, "I'm sad you're not here. I miss you when you're gone. I hope you come back."

It's hard knowing the right thing to say so a lot of time we just go and be with him while he's saying his thing.
It's often the same. The same phrases, the same intonation, and roughly the same amount of time (a few minutes at tops).

This morning was different. He was lying on the floor of the kitchen and I went to sit next to him. For almost 10 minutes he just lay there on the kitchen floor in the fetal position. Then he pulled the little kitchen mat over his head and began again.

"Simon is lost. I'm not here. I can't go anywhere. I'm not here. I'm lost."  Only now it's escalating and he's getting louder and starting to sound frantic. It hurts my heart to see the tears, hear him crying and moving quickly into a painful sob. He doesn't want me to touch him but cries harder if I move further away than just taking my hand off his back. When he takes the mat off his head, I see his eyes red and wet (and yuck from the kitchen floor but I let it be). This is different.

And then, almost as quickly as it ramped up, it's over.

He's taken the kitchen mat off his head, sat up, and asked me for a snack.

He's 4. I can't debrief with him what the heck just happened. He's 4

We go about our day. It's sticking with me that something different happened this morning but I can't think about it too much because there are mini steam trains to ride and a carousel to check out. We have a lovely picnic with our friends, a quiet afternoon at home and then a fun evening replete with Dim Sum in China Town and an awesome park with a huge Chinese Junk ship play structure.

Bed time is nothing out of the ordinary until I can't find the one book that he wants to read. It's maybe an extra five minutes of me searching but there it is again.
"I don't want it." Now that I've found it of course...but right into "I'm gone. I'm not here."
"Simon's gone. Simon's not here. Goodbye. I'm gone."

I lay my head down next to him on his big boy bed and that upsets him more but at the same time he reaches out and tucks his hand down the front of my shirt for comfort.
He's also so tired that he can barely keep his eyes open. Once, when they close and don't reopen right away I think we are in the clear.
I am still for a few more minutes as he is and then remove his hand kiss his cheek and head out of the bedroom.

I am pouring rice milk into the blender when I hear his cry from the bedroom. Before I can stop pouring and put the container down he's quiet again. Are we clear?

Minutes go by and I've actually made it through making half a batch of his blended food before I hear him cry out again.

It's not even one of those cries that you wait and see. It's the wail that makes you stop whatever you are doing and get into the bedroom as fast as you can. It's not the one where you stop and listen, pausing to see if it's the 'I just really want to stay awake and you coming in to check on me will only prolong the good night routine that I so desperately want to drag on and on and on' cry.

No.

This is the I've just fallen out of bed' wail or the 'I just pulled my Mic-key button out' wail or the 'my arm is caught in between my bed frame and mattress and I can't figure out how to get off the mattress because my arm is stuck underneath it' wail.

Or, it's the wail of the child that has had too many blood draws, surgeries, spinal taps, picc lines, echo cardiograms, intubations, Dr's appointments, therapy appointments, etc etc.

I'm in the bedroom in less than 2 seconds. I pick him up and his arms curl around my neck as we move over to the 'big' bed. He moves away from me but not too far.

One round of  "I'm gone. I'm not here." and he's quiet. One arm across his face and one arm reaching out to my forearm. He's asleep even before my first tear hits the pillow.

I am completely overwhelmed by how much it hurts to see him work this out and how much I feel lost in how to help him.

I mean really help him.

I mean take it all away. Poof! "It's gone "-kind of help.  The "my magical Shop-Vac has just made it disappear and now there's only rainbows and unicorns and trains and dinosaurs and scuba divers" kind of help.

My brain knows that this is not my job. It's my job to provide love and safe places and opportunities for him to feel his feelings and know that he is whole and perfect and that while this is a part of him, it does not define him.

FUCK THAT!

When my child who has been through so damn much and has survived and thrived and cheated death and is so amazingly beautiful is sobbing and shrieking in fear and all I can do is be there tell him I love him?!  THAT SUCKS!

It hurts. Really, my chest hurts. My migraine that I've had for the last three days takes a humbled back seat to the pull that I feel in my chest. Like a little fist (about the size of a 4 year old barely on the growth chart but with wicked blue eyes) has put it's small fingers around my own heart and is holding on for dear life.

He's been through so much. It's starting to bubble up at different times. The hard parts that have been pocketed.

The amazing parts have been there for years. The ability to connect with so many people. The strength and presence in new situations. The 'bounce back' from those hard moments that have to happen and then are done...those are the amazing gifts that Simon has internalized from all this- his absolute joy- these are huge.

And, now we're also seeing some of the darker parts. It's hard to suss out and so clear at the same time.
He's 4. Four year olds have mood swings. They are figuring it all out and it's hard. They want what they want and if they don't want it, they let you know.

And like I said in the beginning, those Littles that have been through more than their share of the hard stuff....I don't know. They have a little more to figure out, how it all fits, how to feel it all, how to feel the balance.

I don't really want to Shop-Vac away Simon's hard feelings. I want him to know that the dark parts can, in fact, become strength. I even think they can become tools for bringing grace and beauty and peace to his life.

AND, what parent wouldn't love the magical touch to make all of that happen in the blink of a PTSD filled tantrum, whatever your kid has been through...um I don't know...like...life.

My sweet sweet child. I don't think I could love him more.

But we'll see what happens tomorrow ;-)

Simon and Mamaw from a while ago- How can you tell...

 ...because of how long his hair is!

Simon and Peter Pan up in the Crows nest

Last day of Cub Camp

Seriously?! He's such a dude. Too cool for skool

City adventures at Yerba Buena

 Rockin' all of his obsessions at once (Scuba diver, robot, and his shirt had a t-rex on it)

Post water fight

 Fox hat and the shirt says it all

Big Robot

 Small child

Written by:

Laura

So Help Me...

I have had it up to *here* with stranger's responses to learning about Simon's health and development stuff.  Parents at parties, preschool administrators, anyone who really doesn't know Simon and has something to say about him.

I've had it.

I know people are so well meaning most of the time but if one more person says something uninformed/annoying/dismissive about Simon's issues, so help me...  (Mike Wazowski's little show tune "Put That Thing Back Where It Came From" from Monster's Inc is playing in  my head, of course).

When I'm talking to a stranger (particularly a parent) and Simon's heart condition comes up,  I give the short version of Simon's disease (his heart muscle got sick when he was a baby and he spent 4 months in ICU and has a lot of stuff going on as a result). Invariably the person asks, "so, can he have surgery to fix it?"

It's a totally valid question. 

And it makes me want to slap someone.

I usually take a breath and patiently explain again that it's the whole muscle that is sick so there is really no fix for it short of a transplant, which fortunately he doesn't qualify for right now.  However, behind my calm breath and pleasant smile I am  irrationally mad and dying to scream, "THERE IS NO QUICK FIX FOR THIS!  Yes, you heard me right, we will live forever with this anvil hanging over our heads. Besides, don't you think we would have gotten the goddamn miracle surgery by now if we could have?"

I think the "can't he just get surgery" thing strikes a nerve for me because when Simon first got sick and there was talk of a transplant I was pretty against it, for a lot of reasons.  When he started to get sicker and it looked like nothing was helping, I finally made peace with the decision to consider a transplant.  I felt so much hope that day, like finally we were going to be able to DO something instead of just watching him slowly die before our eyes.  When we met with the surgeon and decided not to do a transplant given how awful the whole thing sounded, I was crushed.  It was like I had been treading water in the ocean for 5 weeks and someone tossed me a life preserver and then ripped it out of my arms a few hours later.  There is no quick fix for this.  There is no magic day when it's all over and we have a carefree life.  This is it.

The other scenario involves talking about Simon's delays.  More times than I can count, a stranger who has interacted with Simon for a VERY brief period of time responds to my disclosure of Simon being in Special Education with, "Well he seems like a pretty average 4 year old to me". I know they mean well, but there are a myriad of ways I interpret this statement, depending on the person or situation.

•  I'm reassuring you that no one can tell that he's different, so you don't have to be embarrassed
• "He doesn't LOOK like a retard"
• I know better than the team of 10 people who set up your son's IEP

When someone says this to me, I am tempted to run down the extensive list of all the ways he is NOT like other kids, tick off all the things Laura and I and his teachers see that make him different.  But since that might cause me to burst into tears in front of a total stranger, I don't.  I've also decided that usually it's not worth the breath to break it down for someone I will never meet again. So instead I just say, "yeah, he has a lot of stuff going on".

If I do go into detail at all, they invariably have a story about how they knew another kid who wasn't potty trained until they were 5 and is fine now, or have we tried chocolate pudding to help with the eating issues or some other equally useless suggestion or anecdote.  I *know* they're trying to be helpful.  It seems like it's just what comes out while they're processing what I've just disclosed.  AND it's pretty awful to have to sit there and listen to all the ways they want to make it all okay.  It's not. 

We have great, wonderful, full lives with an incredibly sweet, loving, charming son.  And our lives are more complicated and frustrating and filled with fear than we ever imagined because of Simon's disease. We've come to terms with it and it's exhausting to watch other people go through the denial phase about our lives.  Clearly I don't expect strangers to have a clue about how to deal with this but I'm also really, really tired of it.

Another mother at a preschool we were considering asked, upon learning about Simon's illness and being in a Special Education class said, "does he have emotional issues besides his health issues?".  I'm pretty sure she wasn't asking about his PTSD around haircuts. I, of course, interpret this as "Clearly your kid is not normal. Is he a weird destructive psycho that is going to mess with my precious child?".  So help me...

When it comes to interacting with institutions, I'm just about ready to kill someone.  With the institutions, it's not so much people's ignorance/attitudes but policies that are the problem. If one more director of one more program apologizes for not being able to take Simon because he is not potty trained, so help me...

After literally hours of phone calls/searches/begging, Laura finally found a camp for a few weeks through Oakland Parks and Recreation. After a month of conversations with 3 levels of hierarchy, we came to an agreement that they would take him but only if someone comes by every few hours to change his diaper and give him a tube feed.  In the interest of Laura's mental health, we decided to pay our teenage babysitter to sit around for 5 hours down the street and pop in every couple of hours to change a diaper or give a tube feed.  So we are now paying for camp AND a babysitter while he is at camp. 

I'm happy to say Simon is having a blast but the blood, sweat and tears it took for us to get him into that camp makes me just want to lie down and go to sleep for the next 15 years. 

There is a way that being Simon's Mama feels very similar to being femme lesbian.  No one can really "tell" that I'm gay, so I have to decide every time I meet someone new if/how/when to come out and be prepared for an awkward response .  No one can tell Simon has all these things going on so I always have to decide if/when/how much information to give if I want to have an authentic interaction with someone if he comes up.  Honestly, it's exhausting.

I'm just tired.  I'm tired of having to do so much thinking about how much information to give people and what they're going to do with it and running into snags with every single freaking program Simon is in (except his special day class, so far) and begging and pleading to be let into programs with typical kids and having Simon pigeon-holed for being in special education and worrying about if he's catching up or socially off or ever going to be able to hang with kids his own age and how many more times will we have to have these torturous negotiations with institutions that offer crappy services anyway and AHHHHHHHHHH!

If one more person or one more institution says or does something annoying in relation to Simon, so help me...

Written by:

Jaime

The Day After

It is the day after.

Four years ago yesterday Simon was diagnosed with Dilated Cardiomyopathy (the left ventricular non-compaction sub-diagnosis came later). We began our 112 day stay in the ICU at Children's Hospital Oakland. We began to live a whole new life as a family. I began a whole new life as the stay-at-home mom of a child with core medical and developmental 'special' needs. Life as I knew it was intrinsically changed. Intrinsic- native, innate,  natural, true, real.
It happened in a matter of hours but has lasted for every moment of the last 4 years and will continue for I don't know how long.

At 6am-ish 4 years ago, Jaime strapped him into the sling and took him for an early morning dog walk.
At 6am yesterday I woke him up and got his 4 meds and 10oz tube feeding ready.

At 6:30am 4 years ago, she came back and let me know that she thought she heard a funny cough from him and she hoped that he wasn't catching his first cold.
At 6:30am yesterday we turned on Sesame Street, Simon named each of his medications as I pushed them through his G-tube, and we started the pump to give him his blended breakfast.

At 10:00am 4 years ago Simon took his 2nd nap of the day. I thought it was a little odd since usually we had a solid couple of hours of waking time between his first and second nap of the day but didn't think much of it.
At 10:00am yesterday we met up with the Cubs at FairyLand for a day camp field trip. I am the only parent with their child because of our special agreement with the camp that Simon have an aid with him to administer tube feedings and diaper changes as well as help out with herding since Simon is considered globally delayed in development.

At 12:00pm 4 years ago Simon is finishing up his 3rd nap of the day and I have an inkling that something is 'off' but I am more focused on getting his diaper bag packed with everything I need to go to see Jaime for lunch and then go right to Mommy and Me swimming time. My Dad is visiting for a few days and it will be his first time with Simon in the Pool. Very exciting.
At 12:00pm yesterday, we are saying goodbye to the Cubs at FairyLand because Simon has pooped in his diaper and I don't have his pump bag with me for diaper changes and/or Lunch which it's time for anyway.
(I am not a bad Mom, there was miscommunication between me and the camp staff about whether or not I could drop him off but not 'be' with him since he does so much better hanging with the group when I am not there. I thought I could be five minutes away at home and come for lunch and/or a diaper change if need be so that he could still get the camp experience.)

By 1:00pm yesterday Simon and I are back at home, lunch is done, and we are getting ready to head out to Little Farm in Tilden Park. We need to pick up Celery and Lettuce to feed the cows, chickens, goats, and sheep.
By 1:00pm 4 years ago we had turned around on the freeway back to Walnut Creek and our pediatrician. I remember feeling sad that we were going to miss swim time and maybe i should wait an hour so my dad could get to do this with Simon.  Something in me said no and what ever this was needed to get looked at.

So we turned around and started what would be a never ending 'medical' life. A simple wheeze from our baby demanded a dr's visit. Confirmed wheezing from a dr means an ER visit. A chest X-ray ordered to rule out Pneumonia. A chest X-ray for the lungs inadvertently shows a heart much larger than it should be. An ambulance ride. Another ER. IV lines. Admittance to the ICU.  Intubation. So many needles and lines in a little body. No sleep. Pumping breast milk. Lots of beeping. All the time beeping. Touching Simon in anyway that I could. Needing to hold on to Jaime at all times. Not being able to hold Simon. Learning the words, the terms, the possible outcomes. That first meeting with a pediatric cardiologist. Who knew I would ever need to meet with a pediatric cardiologist?! Hearing that we would be in the hospital for at least 3 weeks and thinking that was such a LONG time. Hah. 4 months later....

It all happened yesterday. 4 years ago yesterday. It was one of those days when the lines between the past and present are gossamer thin. I was feeling it all again. I think I will every year. Some years more and some years less. But yesterday Simon and I were in it. He was having a hard time too. We both were. He wouldn't get out of the car. He threw crayons and cups and syringes. His homeopathy (5 drops of water) made him throw up. He lay down on the floor in Trader Joe's and just cried because the cart that he likes to play on (the motorized one) wasn't there and on and on.

Yes, we've come so far. Simon didn't die. He's thriving. He is loved and loves back so strong. We have community and family support the likes of which I had never even thought to imagine. He has made it through colds and fevers and Hand Foot and Mouth disease. His heart function has improved. His eating is slowly but surely improving. we have health insurance. We have family. It's all true.

And yesterday I was angry. I was so angry I didn't know what to do with myself. I didn't choose this. I didn't apply for this. I hate cardiomyopathy. I hate it with a fury born from the same powerful root that is how much I love my son. It's for both of us that I hate it. I'm not saying I hate my life. I don't at all. Some days are harder than others but I wouldn't trade it for the other.

There's the wish-full fantasy-full trade ins that I think about sometimes. Given a time machine and powers that don't really exist,  I go back and re-imagine a life with no ICU, no tubes, no dilated left ventricles, no therapy appointments, no delays....it's hard to imagine a parenting life like that. I know it happens. I know there are also other stressors that pop up. "My kids a biter" "My kid eats boogers like they're candy" "My kid has tantrums that register on the Richter scale". Still...wouldn't it be nice....

I do think about what it would have been like to go back to work in November of '08. I do think what it would have been like to have to choose between pre-schools based on which one had the curriculum/hours/snacks we liked more and not which one would acquiesce take him in spite of his medical and learning needs. I wonder how it would feel to manage our families finances without feeling the bank break save for the significant contributions from our parents.

I do think about that. Not very much though. There's just not enough time. Mostly I feel in the moment. The good ones, the hard ones, and all the ones in between. It's something a lot of people spend years and large amounts of $$ trying to get to.

The thing is...I didn't sign up for this enlightenment. It's not based on choosing to meditate every day. I didn't go to a retreat and come back with new sense of my place and rhythm in the world. I didn't solo in the wilderness for months, unless you consider the ICU a kind of wilderness and I certainly wasn't solo.

There is gratitude for sure. But how much more enlightened would I be if that gratitude didn't have to come in the face of surviving great trauma. How great would it be to feel the support of community without having to have them feed me and my family (literally and figuratively) through lean lean times. Maybe I wouldn't feel it at the same level, maybe I would. I won't ever know because these last 4 years happened this way and not another.

I have never done anything this much for this long (except be in love with my wife and that certainly hasn't been static). I have never had one job for this long. Not school. Not anything where I can say I have pretty much done the same thing over and over again day in day out.  That's not to say that Simon hasn't changed. Puhleeeez. He is certainly not the same person that he was one year ago, let along 4. But somehow it feels so much the same, being the stay at home mom of that amazing infuriating little guy. The world that I inhabit (mostly by myself) between 6am when we wake and 6pm when Jaime gets home from work has not changed much since 4 years ago.

So I drink in another August 1st marker. I remember that day like it was yesterday (which it was) and feel immense gratitude for how far we've come. I feel immense anger at having to come from there at all. I feel sadness for the life that was lost. I feel relief that there is still this life to work on, making it as joyful as possible. I feel fear for what the future holds. I feel tired and pissed off and guilty.  I feel held by so many and so much so that feeling all these feelings is just fine. I feel.
I feel like it's time go pick up Simon from day camp. Because it is.




Check out my beautiful son

Naked Chef

 Perfecting his Burning Man look

Dino Decals make the room brighter

Riding Custard (bareback!)

Dude is up on his knees!

Working on Standing (and having Custard take a few steps!)

August 1st 2012

We're here. Thank you for being a part of getting us here.

We love you.

Written by:

Laura

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