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