by Jess, Diary of A Mom
**
I never seen you lookin’ so bad, my funky one
You say your superfine mind has come undone
…
I can tell you all I know, the where to go, the what to do
You can try to run but you can’t hide from what’s inside of you
…
Any major dude with half a heart surely will tell you, my friend
Any minor world that breaks apart falls together again
When the demons are at your door
In the morning they won’t be there no more
Any major dude will tell you
~ Steely Dan, Any Major Dude
**
My sweet friend,
I know how much you’re hurting. I so desperately wish I could lift you from this place.
You’re not alone. Please hear that. Really, truly HEAR it.
YOU. ARE. NOT. ALONE.
I say that because I know how lonely that place feels. Especially when the people within arm’s reach don’t get it.
But I do. I get it. I promise you, I do.
We push and we push and we push and God, we push some more, don’t we? And sometimes we have absolutely no idea how we can possibly keep pushing. Sometimes we can’t.
Do you remember Sisyphus from the Greek myths? Poor schmuck was punished by the Gods – for what I don’t remember – and his penance was that for the rest of his life he was to push a boulder up a hill. Every time he pushed it, he managed to get just a little bit closer to the top. And every time he got incrementally closer than he had on the last run, the damn thing came rolling down. EVERY. SINGLE. TIME.
So let’s review – Herculean effort. Barely perceptible progress. Dramatic fall. Dust off. Start again.
Sounds familiar, doesn’t it?
And sometimes – sometimes – the pushing is just too damned much to bear. And we sit for a moment. We try to breathe. And then we find ourselves paralyzed at the bottom of that hill.
We chide ourselves because we know better than to stop moving. It’s the mantra of this club, isn’t it? Never Stop Moving. So we slap a palm to our forehead and shout to the heavens, “How could I have let myself stop moving?” And the guilt and the shame cement our feet to the ground. And now, no matter how much we may want to, we CAN’T move.
And then it starts. A pebble here, a pebble there. The business of life begins to fall to the ground. A rock and then a bigger rock. The stuff that simply must be done to keep ourselves, our family, our children moving forward. The ground is littered with What We Just Can Not Do Right Now.
And while we try to catch the falling rocks, there’s still this business of the godforsaken boulder. And the feet cemented to the ground.
There’s a low rumble, then a deafening roar as the avalanche begins. And really? There’s nowhere to hide. We duck and cover the best we can.
***
We all have moments that flatten us, my friend. And sometimes those moments are days and sometimes those days are weeks. But when the weeks turn to months and the rocks are piling up so high that they are threatening to destroy us, it’s time to get some help. Some REAL help.
And I know that there’s no easy fix. I know what it means to ‘get help.’ It means sifting through the rubble. It means facing down the demons that you’ve worked so hard and for so long to stuff away. And it’s terrifying.
I get that. Far more than I’d like to admit. I get that.
But here’s the thing. You’re facing down those demons every day whether you acknowledge them or not. They’re riding shotgun, sister. Always. And they’re sucking the life out of you.
Saying their name doesn’t make them real. They’re already plenty real. So say their name. Stare them down. Take back the power that you’ve given them. Release yourself from their strangle hold. It’s time.
You can do this.
First thing – Step out of the shoes that are stuck to the ground. Walk away from the guilt and the shame. You don’t need them anymore. You never did.
Ask for help. REAL help.
Walk in and say, “I’m ready.” If you don’t feel it, LIE.
Because the rocks don’t stop falling. The business of life simply doesn’t cease. The boulder has to be rolled up the hill. Our kids demand that we be whole and healthy and present.
And we deserve a life. A life with joy. A life with manageable demons.
It’s too much to do alone. Those dang demons are well-fed after all these years. But it CAN be done.
I’m here.
I’ll help in whatever way I can. I’ll even keep an eye on the boulder while you do what you need to do.
Please.
Take care of you.
With love,
Jess
Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters – ten year old Katie*, an utterly fabulous typically a-typical fifth grader, and eight year old, Brooke*, a loving, talented, hilarious third grader who has autism.
She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit ‘Like’ and probably now wonder what they got themselves into.
This post was originally published on her site and re-posted here with permission.
Amen!
Love you,
Mom
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love that….
so true, so difficult to remember. i’m going to use it, though…”they’re riding shotgun, sister.” i’m going to tell myself that the next time I find myself hiding.
Thank you.
I stumbled on this today after reading your DOAM post. Right now my feet are cemented to the ground and I am pounded down with guilt and shame that I feel overwhelmed and angry…angry at autism, angry at my life and the dreams that have been torn away because of autism and cognitive impairment, angry that I wasn’t ready, didn’t know, want to run away, want her to leave, all sorts of messed up feelings, just angry, so very, very angry. I don’t know where to go to get help nor do I have the money to get help if there is help to be had. You are right about the demons. They do ride shotgun even if you don’t acknowledge them and eventually, they pull you down and stomp all over you. I now lay in the dust stomped on, in despair, lonely and alone.
To eachsecondmatters: YOU ARE NOT ALONE. The greatest gift you can give yourself right this very minute is to simply accept that you feel the way you do and that it is a normal reaction. Then breathe—deeply, slowly. And again and again until you feel your heart rate slow and you can begin to see a but past the swirls of dust and haze.
There are so very many of us in varying states of emotions, finances, health…if we hold on to one another and pool our knowledge, our faith and our compassion, we can make it through.
Your comment doesn’t give any information about your child’s age or how recently she was diagnosed or how her autism presents itself. You may have seen DOAM’s post “Welcome to the Club” but if you haven’t…read it here: http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/ and begin reaching out. You can find support and camaraderie online but it sounds like you also need in-person supports, too. Start with your local Autism Speaks or Autism Society chapter/affiliate. also, if income or insurance for your own mental health services is at all a factor, start with your state’s office of health and human services or the NAMI website (nami.org) to find a provider in your area who might work on a sliding scale.
Keep coming back. Wishing you strength and peace.
Um, that should say “see a BIT past the swirls…” Oops!
Hi, Niksmom. My daughter is 11 years old. I adopted her and her older sister in 2010. At that time no testing had been done on her (easy way for the state to get around a diagnosis). I had only been told that she was “mildly” cognitively impaired. I had suspicions about the ASD and took her to the U of M neuropsych center an had her tested. The testing came back that she was ASD and eventually I found out that she also had severe short term memory loss, auditory processing disorder, high anxiety, depression, PTSD, and the list goes on. She is not severe ASD but enough ASD to make me crazy and you throw all the rest of it in and good luck with that. The schools so far have refused the ASD diagnosis and refused her support of PT/OT/ Speech so I have to get them outside of the school for her. I have filed suit against one school and won but moved her to another school with an ASD program only for them to remove her halfway throught the school year, etc. I live in Bridgeport, MI. There are no resources here. Everything has gone belly up including support groups. Everything helpful to me is a minimum of 2 hours away from me. When I went into the adoption, I asked for something completely different than I received. I thought I had accepted it until I realized it destroyed (or at least looks that way right now) the majority of my dreams. I am looking at a child I wil have to care for all of my life. I am looking at a child that cannot commuicate. She uses words and lots of them she hears, but she has no concept, really, of language or how to communicate and according to testing only understands about 50% of very basic communication. I do mean basic.
I really do love her. Right now, it doesn’t feel like it. Right now, I am tired of the constant roller coaster of disconnect and connect and desperation and longing for the connection to her, the desperation of wanting communication and understanding with her.
But right now I am angry because her world has shattered mine and then I am angry at myself for being so selfish. It seems to be a vicious cycle.
She cannot help what she struggles with. It is not her fault and I see her trying. It is my fault that I am angry and then am ashamed that I am angry and my tolerance level and ability to deal with her is so short and I feel ashamed. I did not adopt a little broken, discarded, girl only to be angry at her. It is not her fault and I must continue to move the earth, moon and sky to give her all she needs and see that she knows she is loved. Saying it sounds so easy. Doing it is so so so hard.
I will come back again. But right now she is coming home from school and I must find my game face and get ready to go get her sister and then take her to PT and speech.
I have no support around me. I don’t know any special needs parents. I just fordge this path alone and do what I can with God’s help.
Thank you for being here for me. I really need that right now.
I am so sorry you feel that way right now. I know it’s hard. I’ve been where you’ve been and very recently too. Please if you need to vent email me at boywondersmom1004@yahoo.com.
You aren’t alone and there’s help. Just ask.
Thank you, Jersey. I may just do that! Thank you so much.
eachsecondmatters,
Your story is so moving. As a special needs parent and auntie, I get how you feel. A few thoughts: 1) The rollercoaster of emotion is completely normal. It may be the worst part. Forget the guilt. It comes with the territory. 2) I’ve found that I am better off not looking too far ahead. I look for the little moments of joy in each day, and they add up. They do. 3) You are not alone. Not now and not any more. 4) Take care of yourself. That’s what this project is all about. Finding little ways each day to feed your soul will, well… feed your soul. And theirs.
thank you. xo
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