tired, 2011 redux

**

Warning, dear reader. If you’re the kind who comes here for a daily dose of optimism, please feel free to skip this post entirely. No, seriously, just move right along and we’ll pretend you were never here. Surf on over to Huff Po or check out TMZ or go see what’s happening on PopEater. You could find pictures of Pippa in a bikini or see if you can keep a straight face while you read about Bristol Palin’s ‘corrective chin surgery’. 

You won’t hurt my feelings if you go; I promise. I’m not one to hold a grudge. But if you decide to keep reading, I make no apologies. You were warned.*

*

I’m much too young to feel this damn old. ~ Garth Brooks

*

I’m tired.

Bone damn tired.

World weary.

Autism weary.

Advocacy weary.

I’ve had enough.

Enough of the constant uphill battles. The red tape. The money. God, everything comes down to money, doesn’t it? I’m so sick of hearing about it, fighting about it, searching for it – not having it.

I’m tired of politicians letting us down. Of civil servants who forget to be either. Of blind partisanship and arbitrary division.

I’m tired of good people fearing that honesty might get them fired.

I’m tired of explaining why truth, whether we like it or not, is not situational.

I’m tired of lies – the big ones, the little ones, the really, really obvious ones.

I’m tired of scripts.

I’m tired of reworking, rethinking, reviewing, reframing and redirecting ALL THE TIME.

I’m tired of Elmo.

I’m tired of feeling like there just aren’t enough hours in the day. EVERY SINGLE DAY.

I’m tired of fighting the same battles again and again and again.

I’m tired of feeling like I’m short-changing everyone in my life – including me.

I’m tired of saying, “I’d love to, if only I could find the time.”

I’m tired of saying that I’ll do it if no one else volunteers.

I’m tired of no one else volunteering.

I’m tired of Mother Nature’s wrath – of tornadoes and floods and tsunamis and earthquakes and good God, why?

I’m tired of war.

I’m tired of watching people die.

I’m tired of hypocrisy.

I’m tired of hate.

I’m tired of watching people point fingers at everyone but themselves – until it’s time to take credit for something they didn’t do.

I’m tired of the twenty-four hour news cycle.

I’m tired of explaining.

I’m tired of apologizing.

I’m tired of feeling responsible.

I’m tired of being a grown-up.

I’m tired of the vague sense of unease that I haven’t been able to shake for months.

I’m tired of wondering what would happen to my girls if God forbid ….

I’m tired of fearing for the future.

Im tired of forgetting to live in the present.

I’m tired of feeling like I’m never done.

Ever.

I’m tired.

Just tired.

And today, that’s all I’ve got.

Sorry, guys. You were warned.

* Ed note adapted from the original, Oct 2008

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70 thoughts on “tired, 2011 redux

  1. Just know Jess, that you are not alone. There is a veritable ARMY of world weary moms out here…I cry as I write this, I am so exhausted….and up for the day on only 2 hours of fitful sleep. Too much stress, so little time. I am tired, stressed, and angry about much of what I have to deal with on a daily basis. Thank God my little sunshine brightens my day everyday, I don’t know what I ever did before I had her in my life :) Well said, and hugs to you. Thank you for sharing what many of us are feeling, as usual. God Bless

  2. I’m tired too…..I feel like you do right now too! I want to run away, but can’t. I want to get rid of autism from our lives, forever, but here it is to stay…..damn, I’m mad too. Just for one day, I would like to not have to deal with ANYTHING! And I mean literally…how much more can I and others like me take? It’s a rough road, and I’ve got a flat tire! Just know that you are NOT alone in this!

  3. Can I just say ditto!

    But wait,this week ms. brooke is going to do something amazing that will make you catch your breath!!

    XOXO from Japan!

  4. I was feeling just like you a few weeks ago, worse even (I have 2 on the spectrum and I’m a single mom)… so I read this…
    “Come to me, all you who are struggling hard and carrying heavy loads, and I will give you rest. Put on my yoke, and learn from me. I’m gentle and humble. And you will find rest for yourselves. My yoke is easy to bear, and my burden is light.”
    A little doubtful but I did it anyway.. and IT WORKED, it really really worked. God gave me new strength, like Ive never had before.
    Its worth the try ;)

  5. take some time Jess. A break from everything. Kick everyone out of the house on Saturday, no excuses.

    Tired sucks.

    sending you love and energy.

  6. I needed you to post this. Sometimes I feel like everyone is walking this path better than me (even though I know better). Reading that you as an advocacy icon still feel the same damn way, reminds me that the goals are huge, but the payoffs are dosed out in tiny little increments that must be swallowed with fervor and joy. The challenges will always be there and so will new ones. We are all tired. As one Mom to another, all I can give you is a virtual hug and tell you I’m with you and it WILL be okay -even if it’s not what we expected.

  7. there’s no question that this is a 25 hr/8 days a week job. I hope you find your quiet space to regroup and take a breath this weekend. Perhaps with a giant cupcake in a nice quiet bakery somewhere.

  8. we are all there with you. you’ll wake up in a few days maybe not so bone deep tired. maybe just a livable tired. and liveable tired is the best we can all ask for sometimes. i wish it for you (which sounds weird, but i hope you get where i’m going with it)

    sending hugs!

  9. Oh, I’m so relieved. Wait, that didn’t sound right! But I was being to believe that you simply weren’t human and must be a some sort of super robot, lol! What you do is amazing and it’s ok to stop and take a couple of breaths sometimes. Hugs :)

  10. Maybe, just maybe, as much as we love updates, that is one thing that can wait a couple of days, have a sleep, we don’t need you to get up at 4am just to have something to read…..it can wait, pretty much it all can wait – your body needs to heal, it was trying to tell you that last week from the sound of the posts then. Hope you feel better soon.
    Eva

    • Please listen to this wise woman. Repeat after me, “it can wait”. We can all get through the day without our update (no really, we can) because you def.need some down time. I know that’s only one tiny piece of your day, but there are others that can wait as well. Every moment does not need to be a teachable moment, take a few days to stop explaining/apologizing/worrying and being a grown-up. Have a dinner picnic on the family room floor, wear jammies all weekend, just clock out. It MUST be done.

  11. Never, ever apologize mama. No need. We get it, I get it, all of it. One foot in front of the other, breathe, I know you have no time, your pace is so fast, but breathe. Even if you have to remind yourself, because I have to lately, the vague sense of unease is stealing my air, breathe.

  12. Ass-over-elbows tired. And feel free to take the occasional break from us. And from Elmo. Headphones. Headphones. ;)

  13. how do you do that?
    I came here today, a little wary… not sure what was in store. Not sure for what exactly I was searching. Because this. is. exactly. how. I. feel. Exactly. *long, deep, weary sigh*
    Wish I could offer more than a healthy dose of commiseration and a hug.

  14. In my heart and in my prayers. We ALL get it. We’ve all been there. I myself had a knock down, break down, hysterical crying, defeated, disarmed night…just a few days ago. You need to vent, just like we do. That cloak comes back to haunt us still. Remember your own words Jess, and take a little of your own advice:
    ” You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.”
    ” Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

    A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.”
    We love you Jess. And we hear you. 100%, we hear you and understand.
    Barb

  15. Right there with you. So tired of all of it. Just got our “official” diagnosis of “severe autism”. No help in sight except the same stuff… and I’m tired. Wish I could bring you dinner tonight to brighten your day… because honestly, helping someone in a size closer to my shoes would be a blessing. I’m so tired.

  16. Thank God. I was beginning to worry about you. You’re human, your little back is only so big to carry such weight. Flop, be tired, wallow, roll around in it, shake your fists.

    You’ll get back up.

    For now, yes, we get it, we understand, and dammit, you’re entitled.

    Love you.

  17. You are such a warrior for Brooke, Katie and the autism community. However, you are human, a woman, an individual, who once upon a time had dreams, and they didn’t include everything that you are dealing with. Motherhood is the most exhausting job in the world add autism and multiply everything X’s 10! Runaway…rejuvenate even if it’s just for a short time. It helps and do it regularly, even if you have to beg, borrow and steal to make it happen.

  18. Me too. Grouchy, exhausted, bone-weary tired. This is why I haven’t posted consistently this month. No energy. No inspiration. Gotta shake this funk I’m in. Deep breaths. And a nap. A nap sounds superb. I say we all have a ‘Nap-In’ and for just a moment dream of what can be when we’re whole again.

  19. Never apologize for being human! Do something solely for you! Take a bubble bath with candles and a glass of wine, curl up with a good book, take a good long walk. You deserve it for all you do for us, your family and the autism community.

  20. You’ll get through it. We all do. Just know that you aren’t alone–if it weren’t for hiding in the bathroom with the faucets running full blast so I could just cry sometimes, I’d be a mess. This blog here? It’s a place where you can cry too. We’re here and we appreciate YOU.

  21. Oh How I needed this today!!! I am running out the door to not one, but TWO IEP Meetings, transitional ones at that, for my two oldest children, I had WAR start again with my Other in law who refuses to see Autism and spent Mother’s day stating what a failure I am as a Mom and that there is nothing wrong with my son, I just spoil Him…yes, I am Exhausted….so glad to see I am not alone!

  22. I wish I had some advice for you, but I honestly don’t know how I come out of those places. Every one of the comments before mine, EVERY SINGLE ONE, is perfect, though. Perfectly worded and full of sincerity and concise been-there-done-that wisdom. I’m feeling better after reading them and I was in a pretty good mood to start with! :/

    I have nothing of value to add, but I couldn’t read what you wrote and not say anything. so, I’m sorry sweetie. We love you and we hope you feel better soon. {{hugs}}

  23. I hear this in my sisters voice all the time and I can “fix it”! I can only home that during the worse times she knows I love her, respect her and pray for her. You, too Jess!

  24. Yep.
    And I’m tired of “experts” acting as if they know my daughter better than I do while I watch them search the page for her name.
    I’m tired of “trust your instincts” only applying when those instincts are what they want to deal with.
    I am tired of time flying but standing still at the same time.

    Hugs to you and hope for renewed strength and spirit.

  25. I hope that you can find some time to recoup, renew, revive yourself. I appreciate all you do for the community, but feel free to take a break. =)

  26. Jess–

    Here is a margarits recipe:

    2 fl oz good white tequilla
    3 tbls grand manier
    2 tablespoons fresh lime juice
    (add a tablespoon of simple syrup if you like ti sweeter or don’t have the best tequilla!)

    Here is a salsa recipe:
    2 cups seeded, diced tomatoes
    1/4 cup diced red onion
    1 tablespoon diced jalapenos
    1 tablespoon minced garlic
    Juice of 2 limes
    1/2 cup cilantro (I like cilantro so I go heavy!)
    1 teasopoon sugar
    Salt and pepper

    Now if you don’t have time this week, then tomorrow night or this weekend have Luau make these for you, then you need to sit somewhere quiet with a bowl of chips, a glossy magazine or two and a box of tissues and just let whatever comes next happen.

    Thank you for everything you do for all of us, take a little time for yourself, everything will be right where you left it when you get back.

    Hugs,
    Rebecca

  27. dear super woman,
    it’s nice to know you are human :) …that even super hero’s need to recharge. so get on it… try beginning with the word “no.” {it can feel liberating to say it even one time.} “no i can’t do it today” and “so sorry, i can’t make it.” in just a few hours, a couple of days, a weeks time, or even a month -you’ll be back in the game, doing what you do… on your time. driven by your inspiration. with new goals in mind, and the energy to accomplish and exceed them.

    {i’m a firm believer in the saying: nothing worth doing comes easily.}

    you are amazing!

  28. I am right there with you. I used to have another one on my list

    I’m so tired of feeling so alone

    but when I found your blog I realized that was one I could let go of. Thank you for that. May the love of this community and your family ease your weary mind.

  29. If you didn’t have a post like this, I would fear you weren’t human. I’m sorry and you so deserve to be tired. Take care of yourself. Thank you again for all you say – optimistic and realistic.

  30. You need to take a time out Jess and you need to take time for you. I know last week you were ‘down’ with a bug. Your body will keep hitting you over the head to get your attention if you don’t take time for YOU. You know what they say in the safety videos on airplanes – you have to put your oxygen mask on first. I learned all of this the hard way at the age of 53 when my body just plum gave out. But I learned – I learned how to take care of myself and to ask for help; to learn what is really important. I had an Occupational Therapist go through my must be done list or what I thought must be done and she highlighted those things that I really had to get done and taught me how to conserve energy. Step off of the hamster wheel girlfriend and take care of you. Breathe deeply. Take a yoga class with Luau. And know that it is okay to scream out and let us all know how tired you are. Sending love and light!

  31. I don’t rejoice in you being tired. But something about what you wrote lifted a little load off my own shoulders. As another poster wrote, I guess it is the load of feeling alone. Suddenly, in all of our weaknesses shared here, I feel stronger. I pray others do, too.

  32. Thanks for the warning, but I doubt you’ve detoured anyone, we can do hopeless, guilty, and angry better than most people I know.
    When we are tired and weary you lift us up and when we lose hope you always say the right thing. We come here daily because you understand us, (hint hint- so we understand where you are today). We’re not looking for a savior, just a friend who gets it and girl, you get it! So move over and let us, your online family, take the reins. We’re good, we can take it, and we don’t mind helping.
    Noted, today sucked, I get it. There was something in the air that stirred mine in the wrong direction causing a huge meltdown and he spent the day w/the IEP teacher hiding in a tent. The news on tv is heart wrenching and everytime the phone rang I cringed afraid it was the school- I just wanted to crawl into a hole. I really did think it couldn’t get any worse and then I came across your post and realized it happens. Yep, shit happens, my granny was onto something with that one. It totally stinks that you can’t fight the battle without getting the scars…
    There’s a line from a song that always pops in my head on days like this, “Falling from grace right on my face. To hell and back and hell again I’ve gone”. That pretty much sums up today for me. I’ll keep wishing for one day w/o autism and the crap that comes with it, but I know it is what is.
    Thanks, I really needed your post today and I hope you get something from all of us, too. :)

  33. Yep, Elmo, Baby Einstein… constant quotations from various movies (Bolt, Toy Story, Cars,etc….) It’s funny how you just get used to that being your “norm”, and occasionally I wonder just what other mom’s would think if they saw our “norm”. On bad days I sometimes see other mom’s with non-challenged kids & feel a bit jealous, thinking “oh, how nice your life must be!” I know that’s bad…. I occasionally miss the luxury of how easy and carefree life felt before autism invaded our world. We can all relate, and as others above have said it is good to see other mom’s have these days too. I also agree that you should just take a few days off!! Allow yourself that luxury.
    Now I have to tell a story that I now get a chuckle out of. One night I was laying beside my son in bed having the usual tucking in routine. He was being so sweet and as we laid face to face he had this sweet little angelic smile on his precious face. He was looking directly into my eyes, and I got a little teary eyed & whispered “I love you baby”. We laid there a few moments and he opened his mouth & in his quirky little voice said “RECTANGLE!!”. Ahh, we treasure these moments, don’t we? Sometimes you just gotta laugh.;)

    • @Jennifer… when I was pregnant with my daughter, Ryan reached over and patted my belly (very out of character for him) and smiled. I thought we were having a sweet bonding moment and said, “Ryan, are you excited about your baby sister?” To which he said… not kidding…
      “SAVE MONEY! LIVE BETTER! WALMART!” and flapped his hands like crazy. It was hilarious! I’d almost forgotten. Your sweet RECTANGLE! reminded me… thanks!

      • @Crystal- that is hysterical! My husband & I got a good laugh out of that. Thanks for sharing!

  34. Jess- I have been reading your blog religiously like a good book! It helps me to stay positive and find humor in the journey ahead of me. My son is 2 and a half and was diagnosed with PDD-NOS in November. Just know that you have touched my life and taught me how to be strong. Thanks!

  35. Dearest Jess, Thank you for sharing these honest feelings. And please know that all of us are here for you to carry the load when you feel you cannot walk a step further.

    Although we all still share the scratchy, uncomfortable cloak you referred to in your Welcome to the Club post…because of you we also share a new, soft and comforting cloak of the community you have created. I hope you can curl up in this new cloak and let the love of all of us surround you. May peace be with you.

  36. Hi Jess,
    I’ve said it before and I’ll say it again. You really are the only voice out there that unites us all. So please take care of yourself and by that I mean go schedule some joy for you and Luau. Go see Wicked which is traveling this summer and sing along. Loud.
    Darlene
    http://www.allseasonsacademy.org

  37. Boy, you summed it up just right. I am tired too. For all those reasons and more. I’m tired of the endless sleepless nights because they wake EVERY NIGHT! I’m tired of potty training and urine soaked laundry EVERY DAY! Seriously how many years it going to take. But then, she comes over to sit and read a book with me or snuggle with me. And, I remember, I keep doing all these things, keep volunteering, keep fighting for more, for better so that they can have a better life, so they can have more.

  38. This is going to sound cheesy….
    But you’ve inspired me to start a blog. I’ve been reading yours for so long now, and it just seems like a really wonderful way to release some of the thoughts floating around my head at 3 am.

    The support of fellow moms in this journey is priceless. I hope you know how many of us are behind you, in front of you, around you and with you.

    Here’s hoping Friday the 13th is a better day than yesterday :)

  39. Jess- I have read “Diary of Mom” for the last 2 1/2 years. Sometimes religiously…sometimes letting weeks or months go by. I have never replied with comments…I have OFTEN cried..many times sobbed loudly, but I am ALWAYS humbled and always greatful to have stumbled upon your blog those years ago. You see, I too was one of those moms you reference at times, those moms who log thousands of hours scouring the internet suspecting one of their children may be showing signs of autism. Those moms comsumed with worry, crippled by fear…who on some days find it difficult to eat and on many days find it difficult to think (your letter “welcome to the club” captured that raw emotion like nothing else I had read before or since). And so began the weeks, months and years of watching and worrying, evaluations and intense early therapy. During that time and in the years that have followed I did my best to educate myself, to be prepared to navigate and advocate for my child should that become necessary. All the whille reading your blog…inspired and in awe of the mom you are and of all you do for Brooke, for your family, for the “community” and for world. I wanted you to know that I had long decided that if I was going to be a mom of a child with autism….you were the kind of mom I was going be. My own child (our third), while a “late bloomer” and quirky at times, was never diagnosed and appears to be doing fine now – but that experience ..the process…the FEAR and worry has permeantly changed me in a way that is hard to describe to those who have not experienced it. The irony is – regardless of that – you are still the kind of mom I want to be…the kind I can only hope to be, the kind like most of the moms who read and comment on your blog are on a daily basis. I want to be that mom who helps to start that Inclusion Group in our schools, who requests…demands…that my friends, neighbors, and the grocery clerk at the store strike the word retard from their lexicon, who suggests that people step back and take a breath before passing judgement, and as you know – the list goes on and on. And so while you may know that your words are meaningful inside “the community”, they are equally powerful “outside” as well. You often talk about making changes, broadening acceptance and promoting education..one day..one person at a time. Please count me among those – Jess – you have changed the mom I am….the mom and and human being I strive to be…and for that I can’t thank you enough. God bless you all – keep fighting the fight – we ARE listening and want to help to make the world a kindler gentler place for all the “Brookes” in the world.

  40. Oh…..I had not read this post until I saw your facebook status that you were going for walk and you quoted from one of your own posts about taking care of yourself…..I hope that your walk was good….I hope that you are able to take more long walks, get a manicure or pedicure, call a friend for a “girls night” of sitting in front of the tv to watch a movie with popcorn and icecream, do not volunteer(even if nobody else signs up)…if nobody signs up to volunteer-oh well(it just will not get done)…tell your friends you need help….have one of them create a Take Them a Meal Sign up Sheet and let them bring you meals for a week(you may think this is too much but it is not)….you would do this for a friend who had a child who just had a baby or if they were going through a difficult time….if you ask they will help…..let otheres hold you….you have done enough holding…..fall into the hands of others….they will be there….now this one might be hard….but do not blog for a week….just take a break from it…we will all be here when you get back…i promise…..you need a vacation…..this includes a vacation from us(your readers)…..from one mama to another mama…..rest…..or it will break you….and nobody needs a broken jess….sending restful thoughts and days ahead of others holding you

  41. Pingback: Wrap-UP Sunday | Mama's Turn Now

  42. I’ve been saying the exact same things for weeks. I’ve struggled. I’ve almost given up. Almost. I haven’t yet, but I’m not saying I’m past the possibility either. I know how you feel because every single word could’ve been mine, and then some. I don’t send ((hugs)) because you can’t feel them. I don’t send encouragement because I have none. All I send it gratitude for articulating the exhaustion in a way that reaches so many.

  43. Today I wrote a post called “Cumulative Stress’ and tweeted “Cumulative stress has just worn me down to a nubbin.” I so know where you are coming from.

    I wish the autism fairies would just come in and sprinkle their pixie dust and freeze everyone else in the world other than us autism parents. We could frolic and sleep to our hearts content and no one would/could possibly need anything at all from us for 48 hours. Then the world can start again and go back to normal. You in?

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