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 yelled 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


Andrea said...

Oh Laura, I'm sorry you feel this way. I doubt this helps but you are so not alone!

I don't have to deal with all the medical and feeding issues and we have had no major complications since ohs. I just deal with the "normal" struggles of caring for a 1 and 3 year olds (their not listening or following instructions is exhausting) and yet I yell and loose it almost every day. I am ashamed because of course it is not their fault, it is me feeling like you describe about my successes, career, rejections, etc that make me be on edge.

I know you don't feel it right now, but there is a reason so many people love, support and follow you! The right opportunity may come as soon as you can take advantage of it!

i wish i had your openness and ability with words, maybe I wouldn't have 35lbs to lose :)

Anonymous said...

Reading this and loving you.

xo Skeeter and Amanda

Anonymous said...

I started reading your blog about a year ago. I am a regular reader and loved your stay at the hospital because you wrote every night and it was a treat for me to get to read something by you every day. So, add writing really well to your list of accomplishments for the last six months. You are a writing rock star and in the world of blogger to book authors, yours is the book I would buy and read.

I hope you find a few things to fees your spirit. I know a little of what it is like to be in a vortex of blah and sucky. I will be saying a metta meditation for you.

Caitlin Featherstone said...

Laura, I haven't seen you since our Smith days and I still think of you as the unattainably cool Laura Fitch, but I know from being married to someone with Chronic Fatigue Syndrome and being the little sister of a kid with multiple handicaps that that never-going-away-these-little-victories-are-not-enough feeling can drag you down faster than a crisis any day. And it doesn't that you are really cool and great at things outside the house. Big love to you.

Anonymous said...

Many years ago, when we found out my son needed a bone marrow transplant, my dear friend wrote me a short e-mail that summed it up and seems appropriate for you right now. " it sucks. You can do." You are in my thoughts.

Amy Levenson Schroeder

Anonymous said...

I am also a stranger and regular reader. I only read a few blogs, but check yours daily in hopes of finding one of your well-written and thought provoking pieces. I am also a parent and it is HARD! I also for the first time in years have a bit of time to myself and it almost makes it worse. I think when there is no time you are just so busy making it through that you can't look up to see what you are missing. FYI - you have had a lot on your plate recently (i.e., moving/remodeling alone put many people right over the edge). Even though you are a stranger and will be trying to send strong thoughts your way. You are awesome just for being you.

Next in Line said...

Sometimes getting that little bit of rest takes things out of survival mode and it is only then that you can see and feel exactly how worn out you are. I hope you can find something that will start to nourish and refresh your soul. Something that will give you a little spark. In the meantime, can you find peace with where you are at? I think it is might just be a normal part of this transition.

Lizzie said...

I think you are amazing.

winter said...

I love you. I admire you. You light the fire. I believe in you 1 billion percent. I hear your anger and I welcome it. Have it. Yoga is for one part of you, screaming and hitting (pillows, inanimate objects) is for another part of you. You can call me and rage anytime. And I won't stop telling you I think you're amazing and I love you. I wish for you all these things you want--and more. I don't have any words of wisdom, I can only say I'd want you to be my chaplain, my mom, my ninja and I'm so glad you're my friend.

Anonymous said...

I've been following your blog for years and was a friend of Jaime's at Mount Holyoke. I have a 10-month-old son and a 4.5-year-old son and both are physically healthy, stubborn, amazing, impossible, and wonderful. Just dealing with the incessant negotiations of my older kid and the wildly physically brazen baby (my wife had the cute little maniac), has been enough for this mommy, mommy, mommy, mommy, mommy, to lose my shit, shit, shit, shit. I have no idea what you're going through and really, no one does, that's what's so impossibly hard about it. But just no, there are other impossibly hard moments that somehow, we do get through. I have no advice, other than I couldn't survive my kids without copious exercise and copious wine. Sending my support your way, today and for the next shitstorm that rains/reigns on you. --Sarah Gus Andrade

The Fitch-Jenett Family said...

Thank you. Thank you for all the support, kind words and solidarity. Thank you.

Anonymous said...

The dark cloud that has decided to have a party over your head....will move one day, and the sun will come out. Until then, it sucks!!!! and sometimes life sucks, but you still have so much to be thankful for. Those jobs...well they loose, because I think one day when you get a job out of the house that pays you way less than you are worth, you will rock it because of everything you are going through. Hang in there lady and please vent, post and whine all you want but keep writing because I miss reading your others I'm always checking in to see what is happening at the Fitch-Jenett House. ...keep, keeping on, there is no other option. :)


Anonymous said...

Hi Laura, you probably don't remember me but I worked at IB in the 90's and I found your blog by googling your name. Know why? Because that is the kind of impact you have had on countless of people's lives. Your , patience, physical capabilities, kindness, sense of humor, and ability to listen to 40+ opinions of strong women and make them feel heard, as well as counseling scores of budding young women who looked up to us. And that never meant that you were perfect. Or that you didn't sometimes make a decision which may have been more self-satisfying than community-serving. What you meant to all of us was the sum of your efforts which was exponentially greater than any one experience or day or even year that you gave of yourself to be a light in that community. And though you now feel the satiety of the shit-sandwich you feel you are not even half-way through eating, please also know that the sine to this cosine is coming. It's just getting through another mouthful in order to take a swig of some cool refreshing water to help you along. And that water may come in the form of a quick stay-cation, or making a contact for a potential counseling opportunity on the horizon, or Simon having one of those awesome days of eating, being happy, and relatively non-combatative (as well as any little boy can be) :-) And maybe you can't see it now, or maybe you don't really give a fuck b/c you STILL HAVE A SHIT SANDWICH TO EAT but it's ok to smear on some black eyeliner and listen to The Cure in the dark. Don't think of the purge just concentrate on the wallow, because either way your spirit will heal over, as it has all those other times, and you will be The Fitchie you (and we) know and love the most.

The Fitch-Jenett Family said...

Wow and thank you. But, who are you?