Wednesday, July 11, 2007

In Which the Vileness of My Life is Found Offensive

Let's face it my darling peeps. My life is vile. And more directly, my beloved little man is vile.
Remember the blog rating where my blog was found to be R-rated and not suited for children under the age of 17? For the use of the word "poop" too many times. Poop is large part my life. I talk about, I stare at it, I wash it out, I clean it up, I try to contain it, I try to make it come out, I rate it (color, consistency, amount) I call doctors over it, I discuss it with the Bald Man, daily, I discuss it with others at least weekly, other people ask me about it, poop is huge at the House of Tangled. The daily rhythm of my life is not suited for children, and I don't even watch R rated movies, they offend me too!
Others choose to be offended by the poop of my life. Others choose to judge the poop, crap, fecal matter, bowel movements of what my day to day life consists of. I don't even have to swear to make it offensive. Seems as though my son's very existence and the way he IS, offends. Well guess what? Sorry and stick it up where ever you choose. If you have an opinion about it, shut up unless you are willing to come over here and relieve me of some of the vile hours of my days.
Now I am sure my beloved readers are wondering where this rant is coming from. And I assure you, it has nothing at all to do with ANY of you. Sadly, the ones who should read this post never will. But the good of doing this is, I need to get this off my chest and I know I will feel better once I do.
For any new readers and some older ones, please buckle your seat belts, keep your arms, legs and any other body parts you wish to stay attached to, inside the vehicle. We are going for a ride on the honesty train.
People seem to be under the assumption that children with disabilities are "special" and I mean, sweet, loving, holding flowers, blowing kisses and waving at others with a sweet and age delayed hello from their wheelchairs. Angels, precious little angels. Yeah, whatever. If mine is an angel he works for the other side. He is mean, angry, violent and destructive. He has ODD. Please read the checklist. See those 8 characteristics? They rule my days. Everything is a battle. I am not exaggerating, I wish I were. Every day, we fight to get him showered, dressed, hair combed, meds ingested, teeth brushed, shoes on. Each one of those things is a battle, every day. And like many battles, some are small, and some are large, depends on the day. But I will tell you now, he always resists each and every one of those things, every day.

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Daily, I am hit, I am scratched, I get called names, I get spit on, I get my hair pulled. Some days more than others, of course. Daily, I clean up pee and poop from clothes and from other places. He refuses to move his bowels without being forced to do it, often needing to be threatened with a time out or stopping a game or show he is watching. I am forced myself to deal with it, because he has soiled his underwear, again. On the weekdays I only have to do that 2 or 3 times. Weekends are oh so lovely, cause then I get to do it, usually at least 6 or 7 times daily. Even though I am saying "I", let us not forget my Bald Man who has to deal with it every day too.
We have been told, more than once, if we decide the job of parenting our boy is too much, he will be institutionalized. There just aren't a lot of places for children like him. He is hard, very hard.
In spite of all of this, we love him, we love him enough to deal with all the crap, every day, and still love him, not for what he does, but for who he is. A child, our child. We love him enough to dread that a day might come where we can't do this anymore. My deepest nightmare I pray I will never face. Enough that we have had only one weekend, away without him in almost 10 years. We love him enough to want the best for him, to rejoice for the things he accomplishes, like riding his bike. We love him enough to find the miracles. We love him enough to not hold a grudge when he is being ugly, so when he feels like it, we can still cuddle him and tickle him and laugh with him, even though just five minutes before, he had scratched me and told me I was stupid.
I deal with it in many ways. I talk to other parents who understand, who let me say what I need to. If I complain, they know I still love the boy, but he is driving me nuts right now! And if I have something to be happy about, no matter how small, they are happy with me. I blog about it, obviously! Knowing you love me and care about my family too. Another one of the ways is my black humor. I know you think the best of me, and if I say something in print, or on the phone, you know I would never say it to him. It is important to me that I acknowledge how tough it is, how difficult he can be, because if I pretend that everything is okay and he is oh so sweet, then I am being such a liar and I just couldn't do it.
I need to say it is hard and I do it anyway.
He is my Vile Child. My Beloved Beast. He is hard, but I love him anyway.

22 Kids Who Want To Play:

Yondalla said...

I'm sorry that someone(s) did or said whatever it was that made that rant necessary.

We had a brief poop issue here. Did I ever blog about it? It was pre-blog era. Brian got so backed up, without our knowing it, that he no longer had control. He involuntarily excreted small amounts daily.

He ended up having a medically performed enema. He had to miss school for it and had to wear "disposable underwear" for days.

Ah yes. I have had stretches in which poop was the center of my life.

BTW, my blog got PG-13 for "gay" "queer" (1 use) and "hurt".

Azul said...

Jo, no one in this world can know your heart like you do.

All of us on this CRAP ride of having a child different from most can commiserate, cry, laugh, whatever, and that's the closest we'll ever come to finding someone else that knows.

Whoever's given you a hard time, CRAP on them, I say. A pestilence of CRAP on their houses!

(There that oughta make sure that you keep your R rating.)

Chin up, lovely lady. You're doing your best. That's all the Little Man (and the Big Man) can ask of you.


elizasmom said...

This is a great post, Jo — I think this should be required reading for everyone who thinks they have it all figured out and that "All that child really needs is ...."

I hope whomever is giving you a hard time backs off, and I hope you and Bald Man continue to have the strength to give the Little Man a loving home — but that, if it is no longer possible, that you do what has to be done next with the knowledge that you have done your level best for this boy, because from what you write, it is so very clear that you are doing exactly that.

Jenny said...

Wow, I have to say Jo, that photo is one of the most poetic photos I have ever seen in my life. I saved it to my hard drive. It's just filled with so much emotion and honesty and life. It's an honest portrait and everyone should be so lucky to have a photo so heartwrenchingly beautiful of their family.

Not So Anonymous Michelle said...

I'm so sorry someone pushed you to the point of needing to rant like this, I'm so sorry that you have to deal with that on top of what you already do with taking care of your son. It's terrible that people are insensitive and say hurtful or idiotic things. I always hope I never say things that come across wrong.

So many people should read this post and learn a little something about children and a mother's love and realize some little problem they are having with their child might not be so bad.

You're amazing!

bon said...

Wow. I am sorry you got pushed into this rant... but not sorry about the rant itself. Needed to be said.

I agree that sometimes we need to say these hard and bitter truths so that we can step back and look at them, then pick them back up, tuck them under our arm and keep trekking.

Heather said...

You are a truly gifted woman. Taking care of a differently wired child isn't all laughter and light, I am sure. It sounds to me like you have a very loving, well-meaning approach and I think that's the best anyone can do.

On the flip side, I think knowing your limits is always a good thing. Unhappy mommies makes unhappy families. There is no shame in knowing your limits and doing what needs to be done to see that your son is cared for, should you and Bald Man decide it's too much.

You have a plethora of support around you, so poo on those meanies for trying to make you feel bad.

Melissa said...

I don't know who harshed on you about what, but I have a flaming bag of.....fudge! Yes, fudge! to place lovingly on their doorstep. You wanna drive the getaway car?

Don't let the assholes get you down, Jo. You and the man are doing an awesome thing and you both rock. You're one of my heroes. Seriously.

PS-Since we'll probably already get in trouble for the burnt offering of fudge, should we find out exactly how badly condoms placed beneath windshield wipers haze things up for them? It's for the sake of research. ;)

Chag said...

Maybe you could print this post out and mail it to those who "need" to read it.

Priscilla Pseudonym said...

I can't dare think of what you go through when you're out in public with Little Man. The "well-meaning" grannies must have a field day jumping up in your face!

You are blessed with more love and acceptance than most of us are able to even imagine. Your son landed with the right parents--parents who can see through his atrocious behaviors to the sinless, innocent child within.

Hug Little Man for all of us who admire your family and wish we were pure enough in spirit to parent such a child.

squid said...

Oh honey. I am listening.

Granny said...

Of course you must talk about it since it takes up a huge part of your life.

I don't know where these people come from or what they think gives them the right to judge you.

Hugs from much too sunny California.

sparklykatt said...

Seriously, you are the angel! And we are all lucky you share your life with us.

I have a special needs son, who is perhaps 10% of the challenge that Little Man sounds like. Yesterday we had such an awful day. When my husband came home from work at 6pm I immediately burst in to tears and ran sobbing to the bedroom.

You are a strong woman to handle this day in and day out. He is a lucky boy to have such loving parents.

baggage said...

I hear ya. I hear ya.

Gawdess said...

Love to you.
Lots of it and respect too.
Always want to be hear to listen and know.
You are amazing. So is your family.
All of it.

K J and the kids said...

I can't imagine your struggles. I read and try and understand what you go through and feel bad and wish that I could help, but I have NO IDEA the time and energy that you have to put forth day in and day out.

I can say that I am so happy you have the heart and soul that you do. That you are taking the time with him. That you love him enough. Sometimes that's the only thing that gets you to the next day.

You are truly and inspiration and a blessing for that little man.

Jane said...

My dear, you are a rock of strength, and anybody who has the nerve to criticize the way you're doing things for Little Man deserves to be crushed into itsy-bitsy pieces of gravel.

FosterAbba said...

People who don't walk a mile in your shoes will never get it. Sorry you had to put up with people who are so insensitive.

Caustic Cupcake said...

Are you not allowed to have a bad day? Are you supposed to love every moment of your life with a special-needs child, and be selfless and courageous all the f-ing time?

If anyone thinks that, surely they haven't had to do it. I'm with Missy, and I will drive the getaway car.

You're a saint, a role model, and a brave woman. Moreover, you're allowed to have a bad day, and we will all understand that whatever you say about Little Man doesn't diminish how much you love him.

However much you love him, he is still difficult, and you're allowed to say it.

Susie said...

People who raise "special" children are special themselves. It takes a lot of heard work to care for a child with special needs and my hat goes off to those who do. Into everyone's life poop must fall and tough luck to those who don't like it.

Tereasa said...

I read this post earlier and must have forgotten to comment. It is such a good, honest post. I really appreciate it and have thought about it often while dealing with my "special" children. It's so nice to rant sometimes, isn't it? Lots of us understand.

Manuela said...

Oh, love... I"m so sorry I wasn't around to support you when you wrote this!

Nothing drives me batty like judgement and it sounds like you were handed a steaming pile of it. I'm so sorry....