We just got back from 2 days at Children's Hospital Orange County. We went down so Simon could be assessed to see if he is a good candidate for a 3-week inpatient feeding therapy program. He is. He and Laura are going to go down there as soon as they have an opening (we're scheduled for early December but we'll see if another spot opens before then). The Ronald McDonald House was awesome. The Feeding Therapy team was amazing and totally in love with Simon after 2 hours. He'll be in great hands.
Okay, so that's out of the way.
Tonight I am so pissed. I am so pissed I want to have a total 3-year old, foot-stomping, thing-throwing, red-faced-screaming, totally irrational freak-out temper tantrum.
I just picked a fight with Laura about money and us getting financial support from our parents because I am so tired of being grateful I just want to crawl out of my skin. I'm tired of being grateful for gifts I don't want. Who wants to get gifts of money to pay for Occupational Therapy? Who wants to use the educational fund great uncles set up for their child to pay for plane tickets to a freaking hospital to teach him how to eat? Who wants get heartburn from free food made by Girl Scouts at a Ronald McDonald house?
Not me.
I'm tired of it. And I'm tired of being worried that I don't look/act/sound grateful enough for all the help we get. Right now, I'm not even going there. Cuz I'm tired of it.
I'm tired of working so hard to turn shit into gold.
I'm SO pissed that I had to wait until my kid was 5 years old before he said, "Mama, come sit next to me". Right now, I don't care that some other parents will never even get that. I'm pissed that we had to wait that long. It's not right.
I'm so tired of comparing ourselves to families that are worse off and being grateful that we're not them. I'm tired of saying, "Wow, things could be so much worse. We could have a kid that has x/y/z or doesn't q/r/s". I'm tired of it.
I'm tired of picking up crumbs and holding them up like they're Manna. They're crumbs.
This thing we are doing is so goddamn hard sometimes and I'm not even the one doing the heavy lifting. Laura is. She's the one that's about to get locked inside a hospital again for THREE WEEKS. She's the one that quit her job and lost her career and has ended up waiting on Simon hand and foot. Other mothers devote themselves to their children, but most other mothers are not still changing diapers and handfeeding at 5 years old. But Laura is. I'm tired of it for her.
I'm tired of living in a world where my Facebook feed is filled with news about kids dying. Or getting hospitalized. Or having to get all manner of godawful tests or diagnoses of crap I can't even spell. With hideous regularity. Yes, yes, it's such a treasure to get to expand our world, blah, blah, but right now I'm just tired of it.
I'm pissed that we need a scholarship for summer camp and pissed that he's going to be with 3-4 year olds instead of kids his own age. I'm pissed that we can't just send him to his neighborhood school and join the PTA and bake cookies like the other Moms. No, we have to have a 4-hour meeting about it and wait for someone to spy on him in his natural habitat (his current special day class) and tell us if he can hang with the socially-messed up but smarty-pants kids or with the not-so-smarty-pants messed-up kids. Whatever school he goes to, we will probably end up on some damn committee fighting for inclusion of kids that are all jacked up instead of shirking PTA duties. I'm tired of it.
I am not feeling grateful for any of this bullshit. It sucks.
Okay, so that's out of the way.
Tonight I am so pissed. I am so pissed I want to have a total 3-year old, foot-stomping, thing-throwing, red-faced-screaming, totally irrational freak-out temper tantrum.
I just picked a fight with Laura about money and us getting financial support from our parents because I am so tired of being grateful I just want to crawl out of my skin. I'm tired of being grateful for gifts I don't want. Who wants to get gifts of money to pay for Occupational Therapy? Who wants to use the educational fund great uncles set up for their child to pay for plane tickets to a freaking hospital to teach him how to eat? Who wants get heartburn from free food made by Girl Scouts at a Ronald McDonald house?
Not me.
I'm tired of it. And I'm tired of being worried that I don't look/act/sound grateful enough for all the help we get. Right now, I'm not even going there. Cuz I'm tired of it.
I'm tired of working so hard to turn shit into gold.
I'm SO pissed that I had to wait until my kid was 5 years old before he said, "Mama, come sit next to me". Right now, I don't care that some other parents will never even get that. I'm pissed that we had to wait that long. It's not right.
I'm so tired of comparing ourselves to families that are worse off and being grateful that we're not them. I'm tired of saying, "Wow, things could be so much worse. We could have a kid that has x/y/z or doesn't q/r/s". I'm tired of it.
I'm tired of picking up crumbs and holding them up like they're Manna. They're crumbs.
This thing we are doing is so goddamn hard sometimes and I'm not even the one doing the heavy lifting. Laura is. She's the one that's about to get locked inside a hospital again for THREE WEEKS. She's the one that quit her job and lost her career and has ended up waiting on Simon hand and foot. Other mothers devote themselves to their children, but most other mothers are not still changing diapers and handfeeding at 5 years old. But Laura is. I'm tired of it for her.
I'm tired of living in a world where my Facebook feed is filled with news about kids dying. Or getting hospitalized. Or having to get all manner of godawful tests or diagnoses of crap I can't even spell. With hideous regularity. Yes, yes, it's such a treasure to get to expand our world, blah, blah, but right now I'm just tired of it.
I'm pissed that we need a scholarship for summer camp and pissed that he's going to be with 3-4 year olds instead of kids his own age. I'm pissed that we can't just send him to his neighborhood school and join the PTA and bake cookies like the other Moms. No, we have to have a 4-hour meeting about it and wait for someone to spy on him in his natural habitat (his current special day class) and tell us if he can hang with the socially-messed up but smarty-pants kids or with the not-so-smarty-pants messed-up kids. Whatever school he goes to, we will probably end up on some damn committee fighting for inclusion of kids that are all jacked up instead of shirking PTA duties. I'm tired of it.
I am not feeling grateful for any of this bullshit. It sucks.
