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.
17 comments:
Thanks for saying it...sorry you have to.
How beautifully and painfully expressed. It's the "having to be grateful" that sucks. And having to find the tiniest thing to pull out and be excited over. I want to mention my own gratitude, years ago, to Laura, who pulled my daughter out of her hole and took her to get some help, way on the other side of the country. I have been forever grateful to Lsura. She is doing beautifully now, and that was the beginning. So, it sucked to need Laura's help and it was so good to get it. Anna(Winter's step mom).
I hear you. My daughter with special needs is 16. It sucks and I am exhausted. All. The. Time. We did intensive feeding here in Richmond, Va for 6 weeks when she was 2 and then 8 weeks when she was 3. It worked. Good luck to you all. And I think it's totally ok to be pissed off sometimes.
You know what? It does suck. It sucks forever. And sometimes all the small moments that make it all 'worth it' don't make up for that.
no buts. It just sucks.
sending you love and light and peace.
Sarah
I hear you, mama, and every word you said is fair. More than fair. If we don't let it out, you will implode. It will be unhealthy and what Simon needs more than anything are healthy moms.
So when something's crappy, call it what it is. And sure, your son might repeat it back to you, but it's truth and that's ok. xxoo
i hate it all for you. but i love this post.
holding space for you ALWAYS.
G
Holding space mama. It does just plain suck and you are a freakin warrior, even if you don't want to be one today. And that's ok. I'd say hand him off and you and Laura lay in bed together for a whole day. Just one day. And pretend you're without responsibility for one whole day. Get take out and watch movies you've been wanting to see, but haven't gotten the chance to bc of all that responsibility. You need a me day. Xo,
Thank you for being so honest with us. You feel what you feel, and don't ever let anyone tell you that's not okay. Everyone has the right to feel whatever they do.
I don't even know you but I just really wish I could just pull your whole family in and hold all of you.
{{ hugs }}
The hardest part for me has been giving myself permission to go through whatever I'm going through, without comparing myself to other families who have it worse or feeling grateful for the many blessings. It's ok to grieve, mourn, and be pissed!
I'm holding you and yours in the light.
I am so sorry. Sometimes life is just really, really hard and it is hard to come up for air. I'll be praying for you.
I'm sorry it is so hard. I'm holding space for you. Love from Minnesota. Xoxoxo
Thank you for saying that! The next person who tells me to just be grateful my son is alive (born at 24 weeks, almost 2, developmentally delayed, hypotonic) is going to get punched in the mouth.
We don't know each other but I have read your blog for about a year now and I am truly inspired by your family. I wish you all much success! <3
Jaime,
You're absolutely right. It sucks. Royally.
The annihilation of the hopes and dreams you had envisioned when you decided to become parents...the loss of the way you had expected your lives to be, Simon's life to be...
I used to find myself saying to the people who'd just heard testimony of the unimaginable, "It's okay."
Then one day a woman responded to me, "No. It's not okay."
None of this is okay, Jaime. And it is maddening when we have to rationalize away the hurt, even while at the same time that processing of thoughts is our way of healing, of reconciling our losses...
Hugs and healing...
Oh, and thanks for the temper tantrum bit...it's nice to know I'm not the only grown-up who wishes she could kick and scream while lying face down on the floor, or send objects flying across a crowded room...
Just found you through Momastery. It is not okay. You have the right to be mad...your anger is as it should be. I'm sorry.
Life is not fair. That's our family motto. Our oldest son Connor is almost 17. He has a severe seizure disorder and is developmentally disabled. He functions at about a 2-3 yr old level. A toddler teenager!
Your family is beautiful as is your writing. I'll be back to read more.
It's okay to be sick of all of it...and to say it out loud.
Becky
I'm a Momastery reader (happy birthday, Laura!!) and my heart goes out to you. Agree with the other posters...it is okay to be angry. As the parent of a child with a disability and a special educator too, I believe, that to sustain ourselves and our kids for the long haul, we have to acknowledge and even honor our emotions...to accept and hate the "this-sucks" qualities of a situation without trying to rationalize or sanitize. I'm sorry. I hope it gets better and I hope that in the meantime, the love and support of those around you helps you both get through it.
I have shared your blog with so many people and today, out of the blue, I found myself thinking of your family. Then when I opened up the Momastery page I saw G's reference to Laura's birthday. I am another one of those suburban Christian women (who like G does NOT hate gay people!) and so I believe there is no coincidence...so praying for you all in a special way today that it is a day of love and strength and affirmation for all of you.
Thank you for your honesty. It gives me permission to be honest, too. Your "temper tantrum" is a gift to me.
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