Speaking Truth in Love ...

Many eons ago, when Evan was about 9 months old, we had a doctor evaluate his vision.  He was a specialist.  He walked into the hospital room, did a quick evaluation on my son and announced to me and my husband, "He is blind.  Call my office and make an appointment."  And proceeded to walk out.  This kind of story isn't rare in the special needs community.  I think it's because our kids see so many doctors it's inevitable that we will run into some that haven't cultivated their people skills or bedside manor.  He was speaking the truth.  He just wasn't speaking the truth in love.

I am all for speaking the truth.  I went through a time in my life when I was lied to often by someone I loved and trusted.  There is nothing like being on the receiving end of a lie, especially from a trusted source.  It will change everything you believe about that person from that point on.  I wonder if even the most skilled liar realizes that their dishonesty is usually somewhat obvious to someone who has been lied to continually in the past?  Gaining that trust back is a long road.  That is if the trust is ever gained back.  So I would always rather hear the truth even if it is painful.  

But there is a way to speak truth without hurting someone.  Speaking truth in love ~  Bob Goff just put something out on Twitter that said, "Love is kind.  Treat each other like we're going to be spending eternity together."  I love following Bob on Twitter.  He reminds me in a fun way that one of the most important things Jesus said to us is to love.  Love the Lord & love our neighbor.  So when I am speaking to others my words should be expressing just that ... love.  Even my painful truth should be first expressing ... love.

Every so often I find myself wanting to give someone a piece of my truth in love.  But if there is one thing a special needs parent receives plenty of it's unsolicited advice.  So I am learning to keep my mouth shut during the times that God may not be giving me the opportunity to share my truth in love.  Because my truth may be all about me speaking and not so much about the other person hearing that truth.  

I'm learning just how much words matter.  God will give me the opportunity to speak truth if he so chooses.  And if he does, I need to remember to speak that truth in love. 

Bible Verse I'm Loving Today: 
Proverbs 18:21

21Words kill, words give life;

they’re either poison or fruit—you choose.

And on side note: You know that Evan is obviously NOT BLIND!  We did see a reputable doctor that first time.  And after that visit we received a second opinion from another reputable doctor.  (With better people skills.)  That doctor saw the same issues.  Seventeen years later Evan just picked at a single hair growing off of my husbands forehead. (We all have that one dang hair, don't lie!  Except me. I pluck that sucker before it ever sees the light of day.)  But he had no problem seeing that one hair. And while he does have some vision issues, heck, so do I! No comment from the husband, please.

Pray big prayers.  Pray bold prayers.  God thinks so much bigger than we do. 

My Favorite Book ...

Annie Downs has been doing this great series about her 31 favorite books for every young woman.  She's continuing the 31 days by asking others to link up with their favorite books for young women.  So I figured I would chime in on this because being a mom of only boys this of course makes me an expert on girls.  Whaaat?  Yes, when there are only boys in the house, the main subject is often ... GIRLS.

My favorite book is no secret to those that know me.  And I would recommend it not only to young women, but everyone.  It is Unbroken, by Laura Hillenbrand.  It's the story of a man, Louis Zamperini, that not only survived World War II, but survived horrific treatment as a prisoner of war.  This book told me things about WWII that I wish I had known when my grandfather was talking about his experiences.  It should be used as a text book in schools. I learned more about that war from this book than I ever learned in history class.  But not only did it tell of his war experience but of the post traumatic stress he endured after returning home.  The PTSD caused him and his family problems that they could not overcome … Until one night when he met Christ through Billy Graham.  By putting his faith in Jesus he was brought out of his PTSD and his family was transformed.  And now how many others have been transformed by his opening up and letting us into his life?  Angelina Jolie was at least so moved by it she's making a movie from this book.  I wonder what it told her about Christ?

The young women that I have known through my boys are smart, courageous, and adventuresome.  And they always loved a challenging read.  I think this requires a girl that is up to that kind of book.  But it also gives a lesson in our country's history that I never received from textbooks.  It is a real life story of what went on in our country.  It puts faces and names to those things we learn in school.  And it puts Christ in the bigger picture that our public schools just aren't able to show us.  

But what I love is how Louis continued to tell others of the transforming power of Christ.  How it was Christ that changed his addictions, his wounds of war and how through Christ it was the only way he was able to forgive the wrongs that were done to him.  These are such great life lessons for all of us, not just young women.

My favorite book for young women is Unbroken, by Laura Hillenbrand.

Who I Could Have Been ...

Maybe you've seen them.  The blogs that are making the rounds that a few special needs parents have written about who their children might have been had they been born without their disability.  It's a raw and honest look at their hearts that I can appreciate.  However, it isn't one I personally dwell on much at all.  I tend to look more at who I could have been had my Evan been born differently ...

Without Evan's daily needs I would have been bored.  And we all know where boredom leads.  You know the saying, "Idle hands are the Devil's playground."  When Evan is around there is no being lazy.  He keeps us on our toes.  (Or in the ER.)  Without him constantly asking me to get up off the couch I might just be sitting there, eating sleeves of the newest Oreo flavor (Is it white fudge-covered season yet?!) with my nose pressed into a book or watching reruns of Sherlock over and over.

Evan keeps me constantly learning.  One of my favorite things is learning about science and medicine without actually going to med school, of course.  (See previous paragraph about the couch & Oreos.)  If I didn't have Evan's constantly changing medical history I would possibly be craving this knowledge elsewhere.  I'm thankful one of my interests is fed right here at home.  And my love for learning is put to use immediately.  

I've mentioned before that Evan keeps me humble by calling me a punk multiple times each day.  But I am truly humbled daily by the fact that I cannot raise this boy alone.  I need my husband.  So often we are prone to seeing only the weaknesses in others.  Evan's needs give me the benefit of seeing my husband's strengths on a daily basis.  Sure, this can be maddening for an independent girl such as myself!  Needing someone else to live life is, without a doubt, humbling.  So for this independent girl, I can't help but wonder if without disability would I see my need so plainly?

I don't dwell on who Evan might have been without his disabilities because on this side of seeing Jesus again, I don't believe there is such a person.  I believe that this is exactly how my God intended Evan to be.  Psalm 139:13 says, "... you knit me together in my mother's womb ... I am fearfully and wonderfully made."  I believe this is true for you and for me.  So why would it be any different for Evan others with disabilities?  

So many times we think God isn't doing anything in the lives of our children with disabilities because we aren't seeing the changes in them.  But maybe God is working in not only our children, but those around them also to bring Him glory?  So I am so thankful for how God knit Evan together.  When I look at who I could have been without his disabilities I don't particularly like that me.   I can't wait to see who we all become when God is finished working on us. 

Bible Verse I'm Loving Today:
Psalm 139:13-16

13For you created my inmost being; 

you knit me together in my mother’s womb. 

14I praise you because I am fearfully and wonderfully made; 

your works are wonderful, 

I know that full well. 

15My frame was not hidden from you 

when I was made in the secret place, 

when I was woven together in the depths of the earth. 

16Your eyes saw my unformed body; 

all the days ordained for me were written in your book 

before one of them came to be.

Community ... (Not the TV show, but kindof that too, I guess?)

Community.  I'm starting to see God's purpose in it.  And I wasn't thinking of the TV show Community when I started this, but yeah, they are dead on when it comes to what I'm talking about here too.  It's a quirky take on a group of friends doing life together.   Sometimes life gets messy.  But the mess is always worth the community.

I've been seeking and learning from some other special needs moms.  I've said before, this doesn't always come naturally to me.  So I'm not talking about tons of women knowing all my stuff.  I mean it's one, maybe two other people.  Because we all know how women can behave.  (Women.  And their behavior.  Just look at reality TV shows.  You don't see any "Men Behaving Badly", "Dance Dads", or "Real Husbands of Atlanta/Nashville/Whoville.  Holy cow, I think I found my next blog post ...) Back to reaching out ~ It's not that I really had to reach out, our lives are kindof on display of late so I don't need to say much.  But one conversation leads to another and before you know it we realize we are all dealing with a little of the same thing with our special needs kids.  Different but the same.  Who knew?!  Funny how that happens in community.  Sometimes we are able to help give each other answers.  Sometimes every one's answer is a little bit different for their family.  And that's okay.  But what it ends with is this.  I'll pray for you and you pray for me.  Community.

We've been searching for our son's place in church.  With his special needs and being a teenager we are finding it's becoming more and more isolating for him and us.  We've never been the game night, group potluck, kind of family that was over-involved anyway.  But we miss the little we did.  We want it for our sons.  Disability is difficult on our own.  But so is cancer, losing a job, divorce, aging parents, wayward children, pornography, alcoholism ... the list is never-ending.  I think God made us to come together in our time of need, our time of celebration, whatever the season of life.  We need Community.

As Christians we can have a tendency to retreat from the things of this world.  We can get caught up in our own little world and want nothing to do with those things that might stretch us, scare us or even hurt us a little.  But I don't think that's how Jesus saw us living this life.  That's not how he lived life.  He lived life speaking with the messy people.  Sinners just like me.  John 1:14 says, "He made his dwelling among us..."  I wonder if he would have been out amongst the trick or treaters?  desiringGod put out a blog that addresses just that regarding Halloween.  I love this.  So many times our churches say Halloween is EVIIIIL.  And yes, it can be just that.  And creepy.  And something I shelter my children's eyes from.  (Believe me, The Exorcist & Amityville Horror movies still haunt me both day and night!)  But the fun, dressing up like a cute little puppy, going door-to-door, candy-collecting in the neighborhood kind of Halloween?  Man, that's the stuff of memories!  Some of my favorite childhood memories are of Halloween fun with my brother and sister.  There was nothing more exciting than dumping our candy haul on the kitchen table after walking all over the neighborhood with each other and our friends.  I want my kids to experience the excitement of getting the "good" candy.  I want them to feel the disappointment of receiving the "healthy snack".  They should know the consequence of the terrible costume choice they made is wearing the mask that is smothering for at least a little while.  I want them to cherish every one of those memories someday.  

And I really want them to know what it means to be involved in a Community.

Bible Verse I'm Loving Today:
John 1:14

  
On second thought, if you are dressing your children like my brother & I are dressed here then maybe you should be staying in the house after all.  

I don't even know what I am supposed to be.  A witch? A clown? A witchy clown?  And my brother, well, he is just darn cute in this picture.  But the thing is, he wasn't really into "cute".  He was more the "shoot your sister with a BB gun cowboy" type.  

Both of us remember this Halloween.  We both have big smiles on our crazy faces.  So we must have had enjoyed ourselves and had a pretty good candy haul that night.

Are You In To Hire?

Unless you have a child with special needs I'm betting you haven't heard of the new campaign titled I'm In To Hire. 

You've heard of the Kennedy family - you know, 'THE' Kennedy Family - Whatever your political standings or religious and moral beliefs, leave that out of it, the Kennedy's have done more for the special needs community than anyone I know.  Their various foundations have created and support Special Olympics, The R-Word/Spread the Word to End the Word,  Best Buddies and now, I'm In To Hire.  The I'm In To Hire campaign is a branch of Best Buddies International.  Which is a program I so badly wish we had in our area.  It's a volunteer program that teams up people, typically other teens and college-age friends, with those with disabilities in one-on-one friendships and in workplaces.  It is such an awesome program.  When our special needs kids are young friendships aren't that difficult to find.  It isn't odd to have other mom's involved all throughout elementary school, even in the middle school years.  But once high school hits, kids start gaining independence.  Even in church youth group no one wants the mom hanging around while the other boys open up about struggles they may be going through.  So forging friendships becomes really difficult for our special needs kids.  Besides mom hanging around, the intellectual differences have become really noticeable at this point.  So finding true friendships and job placement becomes really difficult.

I'm In To Hire ... It's a campaign that is promoting the business benefits of hiring people with intellectual and developmental disabilities.  There are a LOT of people in this world that don't see those benefits.  People that are more concerned with the almighty dollar?  They may see some increased liability?  It takes more time, manpower, more heart?  I don't know all the reasons for not hiring those with disabilities, but what I do know is there is a boatload of us out in the world with kids that need a place to work once they leave high school ... and no place to go.  Many of us aren't blind to the risks employers would be taking and are even willing to volunteer along with our kids just to get them out in the world.

So what are we doing you ask?  Well, some rely on local sheltered workshops.  They are great options for those that can make that setting work.  Our local workshop is not-for-profit and commensurate wage based.  Huh?  That basically means their pay is based on their output.  However many nuts/bolts they put together is what they get paid for.  My Evan HAAAAATES this kind of work.  Did I mention he hates this?  He will sit in a chair for hours

on end and put three of these things together, if forced, and come home with a paycheck for about $1.16 for four days.  Yep. How many people do you know that like to screw nuts & bolts together?  All day long.  Day after day.  In the same chair.  At the same table. In the same cold room.  In the same 100 year old barn, turned warehouse, turned sheltered workshop.  I think you get my point.  I know it's a place filled with wonderful people, with their hearts in the right place, trying to do the right thing, with what resources they have been given.  But I just can't make my son sit in a place he absolutely detests for the rest of his life.  The rest of the world has job options, choices.  What's the saying, "Do what you love & you'll love what you do."?  So the opposite has got to be, "Do what you hate & you'll hate what you do."

So we won't be setting our son up for failure, for hate.  We are in search of something more.  We don't have oodles of money laying around, no special needs family does.  Special needs is expensive - doctors, therapies, surgeries, special schools, so many ER visits, gas to get there, extra insurances, etc. (This really explained it well.)  But when the only other option for your son is sitting around the house for the rest of his life, you have to start thinking about possibly starting your own business.  Lots of special needs parents are doing just that.  These parents bought a coffee house for their son's workplace.  This Georgia cupcake bakery is my favorite story and one I would love to emulate.  (But not the actual baking cupcakes part because no one would eat what I bake.  Gag!)  They know there is a bigger purpose in the lives of our special needs kids.  A purpose that Christ is fulfilling.

I am not quite sure what direction God is leading our family in the business world.  We pray every day about this.  Sometimes we pray a lot, depending on how bad that day may be going.  But, if what I'm starting to see happen actually happens ... 

Yes, I will be worried about the almighty dollar ... all of the special needs people that work in my business will be earning a wage based on so much more than output.  Just being a smile at the door can make my day better in ways no daily total output can equal. They are valuable members of our society and deserve to earn more than pennies a day.  I will welcome those that want to volunteer along side a 'Buddy', maybe that's a parent, and I will strive to find that thing that gives each person joy, validation and a way to share with others their God-given gifts.  

And I will definitely be In To Hire ...

Bible Verse I'm Loving Today:
Ecclesiastes 3:15
God seeks what has been driven away.

I'm Done!

She's done.
This is kindof how I feel sometimes.

We get some of our best sayings from our kids.  But Evan has had some really good ones that have stuck with us through the years.  There's "Mom's a punk.", said in jest I think, I hope.  And "Mommy's beautiful!", if he's trying to get something he wants.  But our favorite and the longest lasting is "Beat your butt".  Now if you don't know Evan, I'm sure you've figured out by now that his speech can be a challenge for many to understand.  But for whatever reason, this comes out clear as a bell every single time he says it.  EVERYONE understands him when he says this; pastors, school principals, grandmas and aunts.  And he loves to tell people that he is going to Beat Your Butt.  Those that know Evan have fun with it.  We know it is, believe it or not, a term of endearment.  But try and explain that to the grocery check-out girl.

Lately, his new saying is "I'm Done!"  As in, "I'm done with haircuts!", "I'm done with school!" "I'm done with doctor!" and my personal favorite, "I'm done with Luke Bryan!".  (Aren't we all?)  Anytime he doesn't want to do something, anything, most things of late, he informs us, "I'm done!"  And like I eluded to, he is done with most things that involve any kind of work, stress ... or the music of Luke Bryan.  

And you know what? Lately, I'm done too.  I want to put myself in timeout, lock myself in the bathroom.  I want to stick my fingers in my ears and sing "La-la-la! I can't hear you!"  I want a permanent vacation.  I want to be the ostrich with her head stuck in the sand.  But unfortunately, life doesn't work that way.  

I want to be done with those things that hurt my baby who isn't so much of a baby or anywhere close to it anymore.  It's painful to see your child that was once stared at with smiles because his disabilities were cute now being stared at with trepidation and given a wide berth.  Is it because they don't want to risk speaking with someone they don't completely understand?  Maybe it's the struggle of how to explain special needs to their own gawking kids?  Or maybe they've seen the more unpredictable side of growing into an adult with special needs and don't want to be near that either?  It has been a pleasant surprise to see a couple of unexpected people connect with us.  I wonder if they're more understanding because they may have experienced the strain of finding a place of acceptance ... And it's a disappointment to see others become silent when I thought they would be my son's biggest champions.

So yes, I want to be done.  Done with the pain of seeing my son rejected.  Done with seeing him in physical pain.  Done with the pain that comes from those that I hoped knew better.

And as usual, God has something bigger for me to learn from the trials of this world ...  I am reminded of Christ's battle before and on the cross.  God the Father is very familiar with seeing his son rejected, in great physical pain and seeing those who fell away when the going got tough.  And if he didn't let Christ out of it, if he saw it was for the better good, (duh, Christ saved us with that big plan!) he must be seeing our much more minor trial is somehow for our betterment as well.  And Christ, after knowing it was his Father's will to continue to his sinless death, offered forgiveness to others.

I've said it before, I know God's plan is way better that whatever scheme I could set up. So, while I so badly want to be done, I guess I may as well settle in and let him do his work.  

Bible Verse I'm Loving Today:
Luke 22:42
“Father, if you are willing, take this cup from me; yet not my will, but yours be done.”
Song I'm Loving Today:
Done by The Band Perry  (Please enjoy the Perry brothers haircuts - or lack there of.)

Fashion Doesn't Take A Day Off ...

So I was reading one of my new favorite fashion blogs, ONE little MOMMA, and I thought, "I NEED to be a fashion blogger!"  Seriously, she even writes on one of her pages that if people want to send her their stuff they can.  She, of course, will pre-approve whether or not she wants to write about it in her blog.  So people are basically sending her free stuff just in hopes that she will write about it to get their stuff advertised out there to the masses.  Wow.  So I have decided to stop writing about special needs and disability and start my fashion blogging.  Because #1: I know sooo much zilch about fashion, #2: What the world really needs is more fashion bloggers sarcasm, and #3: I really just want people to send me free stuff not sarcasm. 

Some time ago my husband was admiring my #OOTD.  That's fashion world secret code for Outfit Of The Day.  He said, "Fashion doesn't take a day off."  But what he really meant was, "Will you be putting something else on before someone sees you?"  Because pretty much, I wear the same thing every day ~ Nike jogging shorts and some form of hand-me-down t-shirt that I may or may not have slept in.  In the winter I just add a sweatshirt, hand-me-down soccer pants and some UGG boots to that sweet ensemble.  Can't you just envision the young fashionistas rushing to my website to check out my #OOTD?  All the young women of the next generation that I could be influencing!  Yeah, this right here may be the main reason God gave me boys.

One of the other awesome things I've found in the fashion blogging world is companies will throw fabulous blogger parties at their place of business just to get the bloggers to showcase their business. How do I get in on this?!!  I would gladly spend a long weekend at the StitchFix warehouse and get pampered by them only to come back home to tell all ten of you readers about how StitchFix did my hair, dressed me up, gave me delicious food to eat, toured the city, all while I slept in a hotel room by myself, taking a shower without interruption, without taking blood sugar all night, or getting puked on once! Sign me up!  I have heard of StitchFix in the past but recently it has become really appealing.  There was a time going to the mall and spending hours wandering from store to store searching for the perfect piece of clothing was my dream come true.  Now, I can't think of anything worse.  Having someone else pick out a shirt for me, ship it to me and all I have to do is mindlessly put it on sounds pretty good about now.  If you've tuned into previous blogs you know that it's been difficult to even get to Target. Whoops,I almost slipped into writing about special needs there for a moment.  I forgot.  I am now a fashion blogger!!  Here is me in my usual #OOTD.  Young girls, don't all rush to get yourself an outfit just like mine.  Seriously, don't.

Oh, and the #1 reason I will never be an actual fashion blogger: Selphies.  They make me feel like more of a moron than I already do on an everyday basis.  How do real fashion bloggers take so many pictures of themselves in the mirror and not feel like a blooming idiot?

Bible Verse I'm Loving Today:
Philippians 4:8

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.