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.
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
Jealous.
