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Wednesday, June 6, 2012

You ROCK!

A friend at work sent me a post about parents of children with special needs, and it really hit home. I feel 100% guilty for admitting this, but just yesterday I couldn't help but feel jealous of my friends and family that have, per say, "normal" children.

Yes, it's a real thought and feeling that I get when I'm alone going over how many appointments we have a week....

When I have to leave for work at 6am to make sure I can get enough hours in to leave early for AV therapy in Baton Rouge.

When I have to make sure we have charged batteries for an overnight trip somewhere.

When I have to make sure we have clean undershirts to clip the battery packs to the next day.

When I have to pull over to stop Hunter from eating his ears while we are in the car. 

When I have to follow Hunter around the Little Gym because his ears fall off every time he lays or rolls or "plays" or anything.  
Those are only a miniscule of instances where I catch myself being selfish about the situation and wishing we didn't have all of this lagniappe stuff added to our daily routine. But all in all, I know we had Hunter for a reason and one that already partially has and will continue to reveal itself in the years to come.

Blair said one time that he wouldn't trade Hunter for the world. And what he meant was, he would never trade the deaf Hunter for another child. But he would trade the deaf Hunter for a hearing Hunter in a heartbeat. Only to save him the grief and uphill battle of being deaf.

Here is the post I was referring to at the top. And to my mommy friends that have children with special needs, I know you can relate to just about 99% of the things listed below. So to those of you with "normal" children (I am not trying to crucify you, whatsoever).... I'm just saying that you may get tired of the long list below, and you may feel a bit jealous that you have never experienced some of the these things before. But just like the Beauty of Holland, us "special needs" mommies have our own moments to share as well. I cried and I laughed while reading through this post below. I hope you all enjoy it as much as I did. And just remember, Sophia's Mom, E's mom, Evynn's Mom, Madison's Mom, Aiden's Mom, Sawyer's Mom, and Landon's Mom (to name only a few).....you are not alone.

YOU ROCK.
Yes, you.

And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.

What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.

You rock because you involuntarily calculate the thousand different variables in every situation and adjust for them on the fly. Because you are alert for the danger, the triggers, the anything, the everything that might turn everything on a dime. Twenty, thirty, hundreds of times a day. Navy Seals have nothing on you, kid.

You rock because you spend so much time preparing for what look to the world like tiny, insignificant moments. Because you know that there are no such things as tiny, insignificant moments. because you SEE miracles in your child’s smallest victories. Because you celebrate simple successes. Because you know how hard they are won.

You rock because you show your child patience even when you feel N.O.T.H.I.N.G of the sort.

You rock because you create a hard shell for the world, but remain tender for your child.

You rock because you have learned another language. Or two. Heck, you even speak Abbreviate – ASD, IEP, DSM, ADHD, ABA, BCBA, BT, RDI, GFCF, ADOS. See?

You rock because you look out for each other. Because you treat every child as if he were your own. Because you know that it really does take a village to raise a child.

You rock because you appreciate the people who make up that village. Because you see God’s angels along your path – and recognize them for who they are. And tell them how much they matter.

You rock because you don’t ever stop pushing and encouraging and expecting and demanding and believing and celebrating.

You rock because you know how important it is to take time for YOU.

You rock because you refuse to let anyone define your child by his challenges. Because you know there is so much more to who he is than a label.

You rock because you are a different kind of parent. Because you know that just because your child doesn’t have words, that sure as hell doesn’t mean she’s not communicating.

You rock because you do everything you possibly can to figure out what it is that she’s saying.

You rock because when a doctor says, “It’s never been done before,” you hear, “Good, it’s possible.”

You rock because when you get angry, you use the anger to propel you forward. To make waves. To create change. To make life better for your child.

You rock because you talk. Because you change hearts and minds and laws.

You rock because you’re not afraid to think big – really big when it comes to your kids. If programs don’t exist, you will create them. If the system doesn’t work, you will change it.

You rock because you never forget to think small. If people around you don’t understand, you talk to them. Teach them.

You rock because you raise your so-called typical children to know that typical is an illusion and compassion is everything.

You rock because you respect one another – even when you disagree.

You rock because you seek the advice of those who have come closest to sharing your child’s path. Because you never, ever drown their voices out of the conversation. Because you know how vital their perspective is. Because you know that this IS a conversation.

You rock because you give your child the space to fail – giving them the ability to succeed.

You rock because you function on ludicrously little sleep.

You rock because even when you wake up convinced that you can’t, you do.

You rock because you doubt yourself and because you know that that’s okay.

You rock because you never doubt your child. And because you won’t let anyone else doubt him either.

You rock because you know that it’s okay to be human.

You rock because you accept help when it’s offered. And offer it when you can.

You rock because you know that no one – no one – could possibly do this alone.

You rock because you know how much richer your life is for all of the people who are now in it and all of those who will be in it in the future.

You rock because you tell your truth – and because you want nothing more than for your child to be able to tell his. And because you know the difference.

You rock because you know what matters – and what doesn’t.

You rock because you know that diagnoses mean insight, information, and community NOT excuses, limitations or anything that we don’t give them the power to mean.

You rock because you apply what you’ve learned as a special needs parent to absolutely everything you do.

You rock because you know that ego has no place in a conversation about what is best for a child.

You rock because you learn as much from your children every day as you teach them.

You rock because you refuse to stay home and hide. And because sometimes you know there’s no choice.

You rock because you haven’t eaten a hot meal in years.

You rock because you long ago convinced yourself that you really don’t like your food too hot.

You rock because you’d fight the demons bare-fisted if you could.

You rock because you make no assumptions.

You rock because you know that it is in our weakest moments that we find our greatest strength.

You rock because in the deepest depths of the mud and muck, you find humor.

You rock because at the end of the day, you’re still you.

You rock because you cast your own insecurities aside – or work through them step by step by infuriatingly tiny step – to do what you need to do for your child.

You rock because you never become too much of a therapist to remember that you are a mother (or a father) first.

You rock because you play to your child strengths to help guide him through his challenges.

You rock because you know when to listen to the experts – and when to follow your gut.

You rock because you know that pain is never a competitive sport.

You rock because you know that EVERYONE has a story. And because you treasure the gift of discovering it.

You rock because you blaze a path for those to come.

You rock because you’ve learned that everything is personal.

You rock because you know that courage is not the absence of fear.

You rock because when you know it’s not working, you try something different.

You rock because you make what feels like Sophie’s choice. Dozens of times a day.

You rock because you ask questions.

You rock because you can Google circles around thirteen year-old girls.

You rock because you know that sometimes the best way to be heard is to listen. And because you know that sometimes – just sometimes – you need to shout.

You rock because you bring cookies to IEP meetings – even the ones to which you’d really rather bring something with a trigger.

You rock because you know there is no more courageous act than asking for help.

You rock because you read that one last book at bedtime. Three times. And because you know that it’s okay if sometimes, you Just. Simply. Can’t.

You rock because you know that you matter. And because even when you forget, you listen when someone (ahem) reminds you.

You rock because you still seek balance, no matter how absurdly unattainable it might seem at any given moment.

You rock because as much as you may want to drop-kick the next person who tells you that God doesn’t give you any more than you can handle, you don’t.

You rock because you know that, ‘What we typically do ..’ and, ‘Well, common practice is …’ are really stupid ways to start a sentence.

You rock because you know that Individualized Education Plans (IEPs) are meant to be just that – individualized.

You rock because you know that your path is just that – yours. And because you might silently judge a fellow mom for wearing really ugly shoes (c’mon people, we’re not saints) but you’d never judge the road upon which she chooses to set them.


Dear Friends With Special Needs Kids,

I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.

YOU ROCK.

6 comments:

  1. There is an excellent book called Your Child's Strengths by Jenifer Fox that speaks to discovering and nurturing the strengths in all children. It also tells you how.

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  2. I love this. Thanks for sharing! {you rock, too!} ;)

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  3. Love it, it's true that we dont hear that enough! Thanks for reminding me!

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  4. oh Elise! I love this post! Thanks so much for sharing!

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  5. Monique BroussardJune 21, 2012 at 8:56 AM

    E!!!! This is the most touching writing EVER!!! Thanks for ROCKING for everyone!!!!!

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