We've Got It All Backwards ...

In the last few months I've heard things like, "I could never do what you do.", "What makes him want to spend time with them?" and, "Why is she sacrificing that?".  All in reference to spending time with people with special needs and caring for those with disabilities.  Most were said with good intentions.  But when we elevate one person we lesson the other.  These statements lessen the lives of those with disabilities.

I'm going to let you in on a little known fact ...  WE'VE GOT IT ALL BACKWARDS!

They are the ones blessing us!  If you want to see the glory of God (John 9:3), spend time with someone who has a disability.  If you want to see joy in it's purest form, spend time with people who have special needs.  If you want to feel unconditional love, get out of a me-centered world and start caring for someone who depends on others to live.  There is where the true blessing awaits.

The people who are spending time with my son and others during school and their spring breaks, offering friendship because they want to, they make my heart burst with thankfulness for their love and kindness.  But you know what?  These people aren't kind to people with special needs because of their disabilities.  They are kind to everyone.  Those I know closely are just allowing Christ to work in their lives.  And if you are a parent and this was your child with needs, yes, you could do this.  Won't and can't are two different things.

Here's my second little known fact ... People with special needs are PEOPLE and they know what is being said about them.

Think about how it feels to hear someone say, "why would she sacrifice", "what makes him want to do that", "I couldn't do that"?  I'm here to tell you it hurts.  It hurts BIG TIME.  It's the kind of hurt that keeps a momma awake at night thinking about it.  What about the things I haven't heard? I have a son who can't tell me what hurtful things people have said to him.  I rely on kind people that surround my son and stand up for his rights.  The same rights you and I have. 

We've got it all backwards.  It isn't about what we are doing for those with special needs.  It's all about what they are doing for us.  Go spend time with someone with special needs.  Get to know the person behind what you initially see.  It takes time.  Sometimes there is pain and sleepless nights.  But isn't that true of any relationship?  Yes, you will be helping them.  But I guarantee you will be the one that comes away changed.

Bible Verse I'm Loving Today:

Matthew 25:31-46

Song I'm Loving Today:

NeedToBreathe "Brother"

Yes, I Remember ...

"Hey, Mom, remember that time you fell & grabbed that guy's butt to break your fall?!" my son said to me.  Ummm, yes.  Every second of every day.  It didn't help that the guy was wearing American flag pajama pants.  I practically see those pants in my sleep.  I've said it before, I have trouble letting go of some thoughts.  Also, I fall a lot.  So add my lack of grace to my over-thinking of things ... yes, I remember.

Evan thinks about things a lot.  He loves certain things like his bags, Apples to Apples cards and now plastic cups.  He thinks about them all of the time.  Even in the middle of the night he will call out asking where is his baseball bag.  Or lately I can hear him knocking cups together like he's just checking that they are still there.  After a knock or two he's okay and he goes back to sleep.  He doesn't leave the house without a favorite bag full of his favorite cards and favorite cups.  Leaving the house is one of the most difficult, lengthy processes.  Getting him to focus on just one bag and not every single one of his cards and cups can be overwhelming.  If you wonder why we are always late, this is usually it.  It has become a habit for us to get 'the bag' before we leave.  Evan doesn't often let us forget it but we have learned the hard way to think one step ahead.  Bring the bag now or go back and get the bag later.

I get after Evan sometimes about his obsessions.  I want him to stop obsessing so much and just once be able to forget about the bag, the cards, the cups.  What will he start thinking about next?  What will be the next obsession?  It can be so overwhelming to have to add these things to the day to day routine.  Life would be so much easier if I didn't have to remember to bring the bag full of stuff and could just leave it behind.  It's heavy.  Really heavy.  Sometimes everything spills out.  Sometimes it happens in private and sometimes it's in public.  Sometimes people look at us like we are crazy for carrying these cumbersome and useless things around. But try explaining that to Evan.

So I started thinking about Evan's obsessions and realized they aren't so different from my obsessions.  My obsessions are just more socially acceptable.  I am better at hiding my obsessions.  But like Evan I keep adding to my obsessions.  There is always the next thing I'm thinking about, worrying about.  It's heavy.  Sometimes my worries and obsessions spill out.  Sometimes in private.  Sometimes in public.  Sometimes others look at me like I'm crazy for carrying these worries on my heart.  But try explaining that to me when I'm in the middle of it all.  Life would be so much easier if I left my bag full of worries behind.

Jesus tells us in Luke 12 not to worry.  He's got this.  We don't need to worry about our life, food, body, or clothes.  He's got it all covered.  I can stop the worry and remembering already!  Now when Evan needs his bag of goodies I'm trying to remember I am not much different.  I'm carrying my own heavy bag along too.  We both have something we should be leaving in God's hands.  

Bible Verse I'm Loving Today:

Luke 12:25

Who of you by worrying can add a single hour to your life?

Happy Birthdays ...

We say with so many things, "I wish I knew then what I know now".  But this ... the love, the joy, the change in our lives that our Evan has brought us through disability ... I wish I would have known that on the days after his birth like I know it now.

Birthdays often bring reflection.  So as his birthday approached this year I was reflecting on those first days after Evan's birth.  I was remembering all of the things a doctor told us he would never do.  Some, yes, he won't be able to achieve.  Others, she had no basis on the day after he was born, to make those assumptions.  She had no need to place those burdens on our hearts. It's a common story from many special needs parents in the NICU (neonatal intensive care unit).  We were in a hospital known as a baby factory, not one known for special needs deliveries. Those memories of listening to her words while sitting on the sleeper sofa that I would later spend the night on are ingrained deeply into my soul all these years later.  

I would love to meet with this doctor and hospital staff now and give them some insight into the heart of the newly hurting parents.  It wasn't the birth I was expecting and I know my hormones were off the charts to say the least.  Believe me, I would first love to apologize to those lovely, patient nurses who bore my wrath.  But I would also love to tell the NICU staff, yes, facts are important.  Heck, I am a the Google, WebMD, NIH Queen!  I want every single detail of those facts.  If you don't give it to me I WILL find it!  But what I really don't need someone else's opinion on what my child may or may not be able to do decades from that point.  The enormity of those words may weigh on us for a lifetime so it's okay to tell us "I don't know".  

What I needed to hear was our child would still bring us immense joy and pride.  It may be different than we expected.  But it could actually be even better than we expected.  I wish I had known then that each of Evan's birthdays would bring me more and more gut-busting pride and thankfulness that God has allowed me on the inside to see Him doing big things in Evan's life and the lives of the people Evan challenges and changes.

This year Evan has told everyone, EVERYONE, "It's my birthday!"  But he has no idea that I am happier than he is that it's his birthday ...

Bible Verse I'm Loving Today:
Psalm 92:4

For you make me glad by your deeds, Lord; 

I sing for joy at what your hands have done.

Song I'm Loving Today:

Natalie Merchant: Wonder

Two are better than one ...

I have this handful of friends from back in the day.  Okay, they are from waaaay back in the day.  Girls that go back to my high school, even grade school, days.  They know most everything about me.  The good, the bad, the ugly.  They have all the dirt on me.  Not that it's any big secret or that anyone really cares, but I would bet big bucks that if they were asked to spill the beans about all of my ugly past doings they would choose to walk the other way.  They would take the high road.  That's just the kind of women they are.   I know, I'm pretty lucky to have friends like them.

This past year I've come to know a few of Evan's friends a little better.  They are people that have been around him but I didn't really know them until recently.  I'm learning he has friends like my old girlfriends.  People that love him just for who he is.  No expectations.  No standards to reach.  Nothing in return.  They just want to hang out with him.  So awesome!

These are the kind of friends I want to surround my boy.  I want him to have friends that aren't speaking badly of him behind his back.  (Because we all know that kind of thing gets around eventually.)    He needs friends that aren't 'talking out of both sides of their mouth'.  I want him to have solid friends that aren't acting one way with him but then we find they are a complete different person elsewhere.  The Bible also says in James 3:10 "Out of the same mouth come praise and cursing.  My brothers and sisters, this should not be."  I've been guilty of just this.  But I want to aim be the kind of person like these friends of my son and my old girlfriends.  Not only do they speak well of others but others have only kind things to say of them.  They are a joy to be around.  My son and others can't wait to see them again.  (Proverbs 22:24-25)  My son can't wait to get to school lately.  That's how much some of these people bring him joy.  He usually hates school.  Now that's the kind of joy I need to be aiming for!  It hurts to find out your your friendship has all along been based on being someone's charity.  I never want my boy to experience this falseness.  It is such a comfort to know these genuine hearts are surrounding my son.

It's exciting to see the people God is placing around my son without any of my doing.  As a mother I work so hard to make things 'right' for my children.  And yet, there are so many circumstances that I have no control over.  I recently read in A Praying Life, by Paul E Miller, that some of the best parenting we can do is in prayer.  It is an amazing sight to see our prayers come to life in our children's lives when God starts to do his thing.  I am so thankful for these young people that are allowing God to doing great things in their lives and seeing my son be a part of that also.

Bible Verse I'm Loving Today:
Ecclesiastes 4:9-12

Two are better than one,
    because they have a good return for their labor: 
If either of them falls down,
    one can help the other up.
But pity anyone who falls
    and has no one to help them up.
Also, if two lie down together, they will keep warm.
    But how can one keep warm alone?
Though one may be overpowered,
    two can defend themselves.
A cord of three strands is not quickly broken.

A Closer Walk With Thee ...

"My own personal Hell."  "I wouldn't wish this on anyone."  "You have no idea what I'm living." 

"I'M DONE!"

How many times lately have I heard someone else say these things?  I've said at the very least every day "I'm done!", if not something similar to the others.  It seems like a lot of people lately are going through things that they wouldn't wish on their own worst enemy.

I don't like strife.  I don't like living it.  I don't like being involved in it and I don't want any part of it.  I will run from it at the first warning sign.  I want the good life.  Easy Street.  Fame and fortune.  I would bet most of us prefer things this way. 

Too bad that usually isn't what brings us closer to Christ.

If given the choice I would be alternating swimming laps in the pool on a warm, sunny day with reading a good book while frying my fragile skin in the sun's rays.  All.  By.  My.  Self.  

Thanking God for my incredible husband and family didn't make that list.  Tending to my family's needs didn't make that list.  Asking the Holy Spirit to be involved in my family's day didn't make that list.  Crying out to Jesus didn't make that list.  Even thanking God for my comfort and joy didn't make that list.  Prayer of any kind whatsoever didn't make that list.  

So is it any wonder that God keeps me close to him through trials?  I know I can be pretty adept at creating my own imperfect circumstances.  But I also believe sometimes God allows things to happen in our lives to better us or bring us closer to him.  No, they aren't our definition of "the good life".  They are difficult.  They are the hard stuff in life.  They mess up everything about our routine, our work, our families.  But they bring us closer to Christ.

This can be a bitter pill to swallow.  Going through trials are never easy.  And it can be even worse sitting by while a loved one goes through a painful trial without any way to make it easier for them.  Understanding that whole "my ways are not your ways" can be truly difficult.  But for lack of a better word, I have this "peace" that there are bigger things going on than my trials.  

So I'm learning to get more comfortable with the tough stuff.  That doesn't mean I like it.  That doesn't mean I don't react irrationally first.  But I'm learning to roll with it.  I'm learning to look for what God has planned in it.  When the unexpected shows up.  When I just don't see any change.  How is he drawing me closer to him?  How quickly can I get back to where I feel his comfort?

It's just a closer walk with Thee ...

Bible Verse I'm Loving Today:
2 Chronicles 6:19

"Yet, Lord my God, give attention to your servant's prayer and his plea for mercy.  

Hear the cry and the prayer that your servant is praying in your presence."

The Gift of Receiving ...

I am fairly terrible at receiving most gifts.   I just don't how to say thank you graciously.  Receiving compliments is the same way.  Whatever it is in my psyche, go on, analyze, no matter how sincere,my response comes out stuttering and BLAAAAH.  And the bigger the gift the worse it gets.  If I'm given a significant gift that I could never equally return, AAAHHH!  How does one say thank you to something like that?!  I can hear myself before it even comes out of my mouth.  I know it's going to come off like I don't really care.  But that's not it at all!!  I just don't know how to thank someone for giving so unselfishly of themselves. I so badly want to return their generosity in some way.  I am a terrible gift giver anyway.  I want to be a good gift giver.  I spend hours scouring stores and websites trying to find the perfect something to no avail.  So how do I repay someone for giving me an awesome gift when I am so lame at it?  But what if there isn't any way?  What if I could never repay the gift?  Then what?  How do I rest in just accepting a gift without feeling like I MUST repay this?

Everyone has a different version of what they could or couldn't repay.  Often I don't want to tell others about a gift I received because I can never tell how it will be understood.  Some may be jealous of the gift and I immediately feel this overwhelming guilt that I was lucky enough to have received it.  Another may have the good fortune to have bought themselves three of what I was given.  They will never understand the gratitude I feel and how humbling it is to be in the position of never being able to repay someone else.  So once again, I keep my mouth shut.  I can't tell anyone about the giver's generosity.

Evan is so great at receiving gifts.  He makes everyone feel great about the gifts they give.

 As soon as he even hears about a gift coming his way he can hardly contain his excitement.  It's all he can talk about.  Gifts are what motivate bribe him.  No matter how big or small he loves every one of them.  It is the first thing he talks about when he gets out of bed. The first thing he asks about when I pick him up after school.  The first thing he tells EVERYONE about friend or stranger.  If you gave him a gift he will thank you for that gift FOREVER.  Every time we see you he will thank you for that gift FOREVER.  He will hug you, thank you, tell everyone about that gift.  He has absolutely no problem receiving gifts.

As Christians, we are told to be generous when someone is in need & to 'rejoice with those who rejoice'.  There are so many verses in the Bible about giving to others.  But there just aren't as many on HOW ON EARTH DO I PAY THEM BACK?!!! (Except not repaying with evil, but that's not what I had in mind, of course. I was thinking more like a nice spaghetti dinner.  Which maybe would be evil considering my cooking skills.)

It's the Christmas season that reminds me of the only gift that none of us could ever be jealous of or buy three of for ourselves.  I suppose that's one reason why God chose to give it to us the in way he did.  I especially want to tell others about this gift the way Evan tells others about his.  I want to wake in the morning speaking of this gift.  This gift should be what I am telling all of my friends or strangers about.  I will be forever thankful for this gift.  It is the gift we can only receive and none of us could ever repay.  

The gift of Jesus. 

Bible Verse I'm Loving Today:
Luke 2:10-11 

"But the angel said to them, 'Do not be afraid.  I bring you good news that will cause great joy for all the people.  Today in the town of David a Savior has been born to you.  

He is the Messiah, the Lord."

I'm Thankful For ... Jerry Seinfeld!

Yep, you read it right.  This Thanksgiving I was a little thankful for Jerry Seinfeld.  And not because I love a good Seinfeld show.  Which I do.  Recently Jerry has taken some heat because he said he thought he was 'on the spectrum' during an interview with Brian Williams of NBC NightlyNews.   Meaning, the Autism Spectrum.  Then because of that heat he retracted what he said and then said he wasn't actually medically diagnosed as having Autism. He said he meant he thought he understood what it was like to be on the upper end of the Autism Spectrum.  He gets it.  And honestly, I'm thankful for someone who says, "I get it."  There aren't many people who get my boy.

Recently, my husband and I both separately complimented a young woman because she "gets" Evan.  She didn't feel the need to ask 500 questions about why Evan is the way he is.  She didn't act scared of his different behavior.  She didn't have a problem just glancing to one of us when she didn't understand something he said.  Every moment wasn't a teaching moment or therapy of some kind.  She had fun with playful teasing just like she would any other of the kids that were there.  She let Evan be who Evan was meant to be.  And it is obvious Evan responds to this woman and the way she treats him.  He seeks her out.  He wants to spend time with her.  She makes no demands of him to be something he isn't.  She loves him for who he is.  And because of this, he wants to be around her.  Don't we all want this?

Times like that are rare for us.  Those people are rare. 

So if Jerry Seinfeld says he relates to Autism.  More power to him.  I do keep in mind he is a celebrity.  So unless he comes over for dinner I may never know his true reason for saying what he said.  (I hope he doesn't come over for dinner.  I think his wife is a way better cook than I am.  I know, most people cook better than I do.)  I'm thankful Jerry says he understands the way those that act a little different are behaving.  

I'm even more thankful for those people in my life that love my Evan and love my family for who we are ~ the quirks, super loud 'WooHoo's', occasional hair pulling and not so nice screaming.  All of it.  Those people that make no demands.  Those that love us for who we are.  I'm thankful for you.

Bible Verse I'm Loving Today:
1 Corinthians 13:5

"It does not dishonor others, it is not self-seeking, 

it is not easily angered, it keeps no record of wrongs."

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.