Wednesday, April 9, 2014

Addendum to SIX!

Every time I think about Simon turning 6, I feel a pang of sadness deep in my heart.  It surprises me each time. It's a very strange experience to feel sad about a living child's birthday. I've been wrestling with this for a few weeks now and think I've identified what the sadness is about.

When Simon was critically ill in the hospital and we were faced with the very real possibility that he might die, I couldn't help telescope out our lives over the coming 5, 10, 15, 20 years.  I thought about how painful each holiday, celebration and especially, birthday would be if he died. I spent real time wondering how many years would have to pass before those events were filled with mere sadness instead of anguish. Every birthday is a reminder of that time when I was mentally erasing Simon from my future as I stared into his tiny face.

His birthday "should" be a time of joy, but I have found that for parents like us, joy and sadness slip into places you least expect them.

So be it.

Every year that passes also marks a year closer to puberty.  Most parents have a sort of comical dread of puberty- of attitudes and pimples and awkward conversations.  Our dread of puberty is borne of PTSD, of never EVER wanting to back to where we were when Simon first got sick.  Stories about kids who were stable for years and then decompensated again when puberty hit are not uncommon on our Cardiomyopathy listserv.  There is something about the hormone soup and accelerated growth that upsets cardiac stability. Stability we have fought  for until we were half-dead ourselves...

I've been trying to enjoy this "coasting" period we have had for the last few years (at least in terms of heart disease). The idea of Simon getting that sick again and going back to that life of constant terror and disruption is almost too much to face.  It feels like sooner and sooner I'll need to get back up on my perch to scan the horizon for signs of trouble.

Soooooo Simon turning  six feels...surprisingly complicated.

And it's amazing.

Both/and.

Off to have a celebratory dinner with our surly, amazing, thriving, feisty six year old superhero.

Spiderman/crossing guard at attention

Monday, April 7, 2014

Six!!

This was the first time in six years that Simon ever expressed any interest in his birthday. He asked for two specific things (several thousand times) over the last month. "Is Elsa coming to my house?" and "We can have my party at Gymboree?"
So....he got both! He nearly fainted when you-know-who came to the door on Saturday and ran himself into an ecstatic puddle on Sunday.  
Take a look.
OMG! Look who's in my bedroom for my Birthday Party!!


I'm thinking..."How Cool Is This?!!"


Magic!



Thank you for the Balloon Sword. Do you want to marry me?!


This is just unreal!


Simon's Mexican Wrestling cape will be put to good use


Darth!


Jedi Knights sparring


Elsa is too cool!



 This is just the best birthday ever!!


Thank you Mama and Mommy! 







And I get a Princess Dress?! 


Marble Mania with Mamaw!!


Day 2 Birthday Part II


Storm Trooper ready to go!

 High flying super heroes!




Working on our Olympic Skeleton riding

 Dude! This is totally awesome!

Bubbles make everything better


Please note the larger kid on the left



Simon and Citlali reunited!


Good Peeps. Good Times.


This was Simon at the end of a long day, just running for Joy!



A moment of repose...


 ...and we're off again!


Happy Boy!

Tired Boy

He turns 6 on Wednesday. I'm having a hard time believing it.

Saturday, March 15, 2014

A Little Broken

I'm alone in the house. Simon is with his Aunties. Jaime is at a workshop all weekend.

And the computer has been calling to me. It's been calling for weeks but I've been avoiding it. I haven't wanted to sit down and write even though I have blog posts starting in my head all the time.

Shit has been hard. I mean really hard and I get a post started in my head and then feel like Debbie Downer and like the pity party should really just be for one.

I made it through CHOC. I made it through what seems like much rougher times. I made it through 4 months in the ICU, multiple appointments a week, no real breaks, many more medications than there are right now, heart failure, foot braces, throw-ups, much worse right?
I get to go to yoga three times a week. I have hours a day to myself. Simon is stable and growing and thriving (sort of).

Still, I feel like shit is the hardest that it's ever been. I'm a little miserable right now. I'm feeling more alone than ever and like I should but I don't have much in my life right now that's feeding me.

I do laundry. I make phone calls to insurance companies, Regional Centers, summer camps, and therapist offices. I take art to get framed. I walk the dog. I'm even planning our trip back to CHOC with a side visit to happiest place on earth.

Simon is changing. He's interacting with language and play in ways that are brand new and so exciting. He's running faster and swimming like a young Michael Phelps.  He's READING! He can eat solids and purees and drink like a champ.

 He is also fighting with every fiber of being. He's fighting at meals. He's fighting sitting on the potty. He's fighting coming and going and getting dressed, undressed, staying, changing, waking, sleeping, you name it.

Mostly with me. Some with Jaime.  But mostly he saves it for me.

I'm tired. I'm tired of fighting to get almost every bite of food in him. I'm tired of working so hard and then going for our 2x a month weigh in and having him not have gained an ounce. I'm tired of the spectrum and having him ask me the same question 40 times while we're driving in the car. I'm tired of him choosing what he wants to do after a meal (as incentive to have him finish his last few bites) and then when I say "Great, when you finish your blahblahblah, then we can...." and having him say "Never!" and then choose something else that he wants and we go around again.

I'm tired if him being so smart and stubborn and feeling his world so out of his control that he just exerts that indomitable spirit that kept him alive in the ICU all over the fucking dining room table.

I'm tired of him refusing to eat for three meals in a row today and then going to hang with his Aunties and making me miss him.

I'm tired of feeling terrified that we're going to need to go back to tube feedings. Or, that we're not gonna go back because we're all really fucking stubborn and it will just continue to be this hard for who knows how long.

I'm tired of people telling me what a great job I'm doing.
I'm not. I yell at my kid and this morning I made him choke because I wanted him to finish his fucking milk that had his stool softener it and put a cup to his lips and tipped it before he was ready. I did that.

I'm tired of being the stay at home mom. I'm tired of not 'working'. I miss people. I miss feeling good at something. I know I can load a mean machine full of dirty clothes but I fucking miss chaplaincy, social work, camp counselor-ing, anything where for even a moment I felt strong and secure in how I was being in service of.....

It doesn't help that I got two rejections from Chaplaincy programs on Friday night right after Jaime left for the weekend and Simon had a meltdown before fighting me tooth and nail on last snack.  Awesome.
It's not even as though I could have accepted one of them for next fall anyway because I can't see how a 40+ hour a week residency (with on-call days) with Simon starting ABA therapy, continuing on with OT, Speech Therapy, PT, and a regular school schedule that lets out at 2:45 every day except Wednesdays when it's 1:30, would work.
Still, it would have been nice to felt wanted. To felt like I was able or chosen for something else even if I couldn't do it next year. Rejection sucks. It sucks rusted buckets.

I want to be a chaplain. I think I was a good one for a few months last spring.
I want to go back to work. I want to earn money for this family. I want to stop feeling like................this.

I even tried to find a therapist to talk to and failed at that. I called three people that even remotely looked like someone I wanted to talk to and all three were unavailable for one reason or another.

So let's see...what are my successes in the last few months.....
I got a really good deal on a washer and dryer for the house because I went to two different Best Buys in one day. Grandma Esther would be proud. Then she might slap me gently across the face and tell me to snap out of it.
.....

ok, I know there are more but I can't come up with anything.  The pity party is in full swing right now. The goth band is playing and the bad food buffet is out.
Tomorrow is the Purim carnival at our synagogue and while Simon is going as Iron Man, I'm feeling bad for the black cloud costume I can't seem to take off.

Sorry for the sucky post.

Here are some photos.

 Working out with a new friend who's which Ninja


 Princess Elsa



 It may have been 2 sizes two small but he was gonna wear it dammit!
 To infinity....


 Getting ready for push off


The entire length of the pool, one breath!


 Ready to make Hamentaschen


 Checking for bad guys



 Playing Star Wars


 First Flamenco lesson (I wish)



 So much fun
Just lovin' it
Jealous.