My Own Awareness

     For some, autism awareness comes around once a year. They read about it, hear about it and may get involved in it. The month of April passes and they go about their year not really thinking about it much anymore. Which is completely normal by the way.

     My autism awareness comes when I open my eyes in the morning and when I close them at night. It comes in the grocery store when the ceiling tiles aren't where they should be. It comes at every bathroom that has hand dryers. It comes at dinner time. It comes off the bus in the afternoons. It comes in the obsessive conversations about doors and shutters. It comes when he's near me and when he's away from me. It comes in the form of love and it comes in the form of frustration. It comes with a sweet, loving, conflicted, frustrating little boy named Jacob...

To the little boy who can steal my heart and break it all at the same time,
To the little boy who's laughter can be obnoxious, yet the best sound you've ever heard,
To the little boy who is my deepest sorrow and my biggest delight,
To the little boy who is my constant reminder of my failures and my greatest accomplishments,
To the little boy who's chaos has become our normal,
To the little boy who loves to make messes, yet keep things lined up in a row,
To the little boy who's smile can mean something suspicious and sweet,
To the little boy who's hugs I never tire of,
To the little boy who can run around on pavement without shoes yet cries when his fingernail breaks,
To the little boy who's love is so overbearing, yet comforting,
To the little boy who makes me feel weak, yet so strong,
To the little boy who makes me laugh even though he doesn't make sense,
To the little boy who enjoys the simple things that make life not so simple,
To the little boy who's tears bring me joy because I see that he can feel emotion
To the little boy who may not remember the words but hums the tunes to his favorite songs...

Keep on singing, keep on humming, keep on being simple, keep telling your jokes that don't make sense, keep telling me you love me, keep hugging, keep smiling, keep laughing, keep stealing and breaking my heart.

You are my autism awareness, you are my joy, you are my life, you are my son. You are God's constant reminder of my need for Him. For that I am thankful.

"Rejoice always, pray continually,

give thanks in all circumstances,

for this is God's will for you in Christ Jesus."

1 Thessalonians 5:16-18

The Countdown

     It's the week of Near His Heart!! I'll be scrambling around as usual in the next few days finishing up last minute errands and details to make the night special. I'm blessed to be just a fraction of such an awesome planning team. I love the heart of everyone involved.

     Throughout the planning process our minds are focused on all of the families that will attend. We focus on making them feel encouraged, loved and uplifted. The joy that it gives me to see these families come and enjoy their night out makes the 6 months of planning worth it. I know full well what it means to them because I know first hand what it's like to live with a special needs child. I sometimes don't realize how much I'm blessed by Near His Heart; I'm so busy planning and getting things together that it's not until the week of the dinner that I sit back and think...Hey this night is for me too!! Most of the time, that thought comes in a moment of frustration when I feel lost as a parent of my sweet yet often challenging special needs child.

     Raising a child with special needs is obviously different from raising a child that's typical. However, I think the thing that surprises me the most is the emotion behind raising a special needs child. I get emotional about every decision that's made concerning Jacob. Jacobs hindrances with autism are frustrating, but it doesn't even scratch the surface when it comes to the emotion of my heart. I'm constantly doubting my ability to be his parent and I always second guess the decisions I have to make for him. I constantly have to make hard decisions regarding his future. I worry what life will be like for him next year at a different school, when he gets into middle school and high school. Will he go to college? Will he be able to work? Will he live at home forever? Will he ever get married? Will he have kids?  It's a feeling I've never felt when dealing with my typically developing, yet very rambunctious Caleb. Raising Jacob is a humbling experience on a daily basis. Not that I am humble by any means, but I realize often my need for Christ and his power to work through me and give me patience and humility with it all.

    There is a phrase in the song "10,000 Reasons" that is often my prayer daily. It's not a fancy phrase but it's so often the cry of my heart. There are days that are hard physically, emotionally and spiritually and this is the only prayer I have for that day...

"Let me be singing when the evening comes."

     I'm excited for Friday night to get here. It's a time that I enjoy ministering to other families while in turn these families minister to me. I love seeing their children, I love that they are filled with hope, I love that they have a night of rest, but most of all I love that they hear about the one that is the Great Comforter.

To all of the Near His Heart families, we love you, we care about you and we enjoy seeing you every year!

 



     

Socially Acceptable Christianity

       I recently saw an article about the Duggars disowning a family member for being pregnant out of wedlock. I didn't read the article and I don't plan to. I don't even know if it's true or not. I really hope it's not true. However, this is not a bash the Duggars article. Although I don't agree with everything the Duggars stand for, It was simply the title of that article that brought this issue back up in my mind.

       So many times in the last few years I've witnessed Christians using social norms as the standard for Christianity. Society and maybe even some churches and pastors give us false instruction on how to deal with issues that are taboo or "against" the Word of God. The world expects us to act a certain way and we fall into the dangerous traps of giving them what they want. It's dangerous because sometimes our actions are actually very contradictory to what Christ lived while He was here on earth. Even more than that, He actually called people to do things that were opposite of what the world expected.

       Jesus began going against social norms the day that he was conceived in Mary's womb. She was a virgin. A young girl who would be mocked, ridiculed and made out to be a liar. I can't imagine being put in her position. Then, an angel appeared to Joseph and told him not be afraid to take Mary as his wife, when society was telling him to divorce her quietly. Then move ahead in the story to the time of His birth. He was a king born in a stable. That pretty much sums up my thought on that. HE was a KING born in a STABLE!!! A king should be born in a palace, on purple sheets, while his mother is being fanned with palm branches and eating peeled grapes!!

       Now, Let's go back to the old testament for a minute to a few stories that stand out to me. Rahab. She was a prostitute that hid Christian spies. God rescued her and her family from Jericho before destroying the city. However, the story doesn't stop there. Rahab (a prostitute may I remind you) was in the lineage of Jesus. He used this woman that was a disgrace to society, saved her from death (both physically and spiritually) AND then brought her to be in the line of Jesus.

       Now I know that this next issue is dying with time, but it was once very relevant and to some it still is. I grew up thinking that we aren't supposed to be with someone that is not our same race. I never understood that since I am part Irish, part Indian, Part English and part whatever else. I look at the story of Ruth and Naomi. To make the story short. Naomi and her husband left Bethlehem and went to Moab because of a famine. Now, in that day it was against Jewish law to marry someone outside of their nation. Naomi's two sons both married moabite women, one of whom was Ruth. Naomi's son's and husband both died and Naomi and Ruth returned to Bethlehem widowed and childless. I can imagine what the people in Bethlehem were whispering..."she disobeyed God, now her kids and husband are dead." or "She's a moabite, she'll never find another husband here." However, in a very interesting story, God redeemed Naomi's family with a kinsman redeemer named Boaz, who married Ruth. Not only did God redeem Naomi's family with this kinsman redeemer, but He restored them, then made them apart of the lineage of Jesus.

     My favorite story of the old testament though, would have to be that of Hosea. I like this story because it mirrors so closely the love that Christ has for us. Read this...

When the Lord began to speak through Hosea , the Lord said to him,

"Go, marry a promiscuous woman and have children with her."

Hosea 1:2a

Wait a second, you are saying that God told Hosea (who was a prophet and a man of God) to marry a woman who likes to sleep around? Yep!! Her name was Gomer and they ended up having three children together, all while she was cheating on Hosea. She ended up running away and found herself on an auction block where she was auctioning herself as a slave. Hosea found out that she was on auction, showed up and paid the highest price to buy her back. Is that not the perfect representation of what Christ did for us? God sent his son to this wretched earth to save us and after time and time again of us running from him and sinning against him, He paid the highest price by dying on a cross for you and me.

      When Jesus was on the earth preforming miracles He did some pretty abnormal things to show His truth and love. He spoke to a Samaritan woman at the well. Totally against society. He stepped in when people were about to do the socially acceptable stoning of an adulterous woman. He spoke to a tax collector and went to his house even though he was hated by everyone. He healed a lame man on the sabbath. He touched lepers. He allowed a man into his close group of friends that not only was an unbeliever but also a betrayer.

      So, when I hear stories of Christians disowning and hating others it makes me wonder if we're just giving in to what society expects. Are we letting social norms form our faith into something that is far different than what God's entire purpose was and is. Are we just pharisees that abide by a law with no love or mercy, pushing people away because they are sinners? Or are we lovers of the truth? Are we willing to step outside of normalcy and follow Christ's example of meeting people in their needs first, loving them and then leading them to repentance?

"A new commandment I give to you, 

that you love one another as I have loved you.

By this everyone will know that you are my disciples."

John 13:34 & 35

      

    

      

Naked Thoughts

        I've been mulling this blog over in my mind for the last 24 hours.  This is one where I'm opening up and being vulnerable and sharing things that most people just think and don't actually say.

There are many times in life when my mouth opens and I insert my foot. Last night was one of those times.

A few things before I start...

1. Please do not read this blog if you can't finish it. Parts of this will seem very harsh and I don't want you to read half way through and not read the rest.

2. Judge me when you've read the whole thing, not half way through!

3. I love my son as much as the next mom, but human love is imperfect and I continually pray for Christ to love Jacob through me. 

So, now that that's out of the way... eh hem...Last night!

       Last night I was talking to a very sweet person about foster care and I asked the question, "Is it hard to care for this 3 month old baby when he's not your own?" She simply replied, "Not at all! It's like you and Jacob. You learn how to deal with things and you stay strong no matter what." To which I replied "Yeah but I can't give Jacob back."

Okay, so now I'm sure you are sitting there thinking "Oh my gosh, Corrie, you are such a jerk."
It wasn't until after I left that I realized how that sounded to everyone in the room. You are right, I am a jerk!! However, it's not in the way that you think. My comment was not directed toward what she said but it was an out pour of my own guilt.

When she was talking about how it parallel's to me raising Jacob, I found myself jealous of the fact that she could give the little boy back if things got hard (not that she would or wants to!!) Then I felt incredibly guilty for even letting that thought pass through my mind. Then, it came out of my mouth and I couldn't stop it. But, if I can be totally honest, I have thought that before. I think about what life would be like without Jacob. If I could give Jacob back, would I? I know that I wouldn't, but there are times that life gets so hard and so tiring that my mind will do anything to ease the pain. So yes, there are times that I wish I could give Jacob back. It's definitely not a rational thought though. It's an evil (yet very human) coping mechanism. Let's face it, Things would definitely be easier if Jacob didn't have autism. So, these thoughts creep in like little demons and set up camp in my mind.

I am not proud of where my thoughts go. I am certainly not proud to share these things with you, which is one reason I was debating whether or not I should even post this. However, all day I have been reminded of reasons why sharing could be beneficial...

Therefore, confess your sins to each other

and pray for each other

so that you may be healed.

James 5:16 

He must become greater

I must become less.

John 3:30

       A few people in the recent past have told me that I'm a strong woman and that I'm an awesome mom. I say this not to give myself a pat on the back but to say that it makes me feel like I fraud. While they are talking, in my mind I'm thinking "if only you knew what goes through my mind." I never want my christian walk to seem easy, seamless or put together. Our job as Christians is not to act like we have it all together and judge others that don't. It's to be open, honest and glorify God in our weaknesses. If sharing my depravity (which is human nature, I might add again) brings any glory to God, then it was worth it. I know that my thoughts are hurtful, hateful and whatever other words you want to insert here. But it's much more than just evil thoughts. It displays a lack of faith in the God that I so dearly love and worship. It shows a deeper lack of faith than what is seen. It's a subconscious lack of faith, if you will.

But He said "my grace is sufficient for you

and my power is made perfect in weakness."

Therefore I will boast all the more gladly 

about my weaknesses, so that Christ's 

power will rest on me.

2 Corinthians 12:9

        So here I am being completely honest and open. I am in complete awe of God's continual love and faithfulness through my weakness and in spite of my weakness. I pray His love flows through me like it's never done before, because without His love, I am nothing. It's time that I start filling my mind with these verses...

Trust in the Lord with all your heart,

and do not lean on your own understanding.

In all your ways acknowledge him, and he will 

make your paths straight.

Proverbs 3:5 & 6

Count it all joy, my brothers, when you meet 

trials of many kinds, for you know that 

the testing of your faith produces perseverance.

Let perseverance finish it's work so that you

may be mature and complete, 

not lacking anything.

James 1:4

Come to me, all you who labor and are heavy laden,

I will give you rest.

Take my yoke upon you, and learn from me,

for I am gentle and lowly in heart,

and you will find rest for your souls.

My yoke is easy, and my burden is light.

Matthew 11:28-30

So do not lose heart. Though our outer

self is wasting away, our inner self is 

being renewed day by day.

For this light and momentary affliction 

is preparing for us an eternal weight of glory.

2 Corinthians 4:16

A Few of My Own Secrets

I just read a really good article titled "6 Secrets Special Needs Moms Know But Won't Tell You."
I'm not a reader. I don't love reading. I don't have time to read. However, when something is related to what I'm going through I can't help but read it. This lady has some excellent points but I decided to elaborate a little more on her points and apply it to my daily life.

1. Special Needs Moms Are Lonely - I think this is a total understatement. I can have a ton of friends around and still feel alone. Mainly because no matter how much they try to understand, they just don't. It's not their fault. No one can understand what it's like until they've lived in your shoes day in and day out. Before Caleb was born that feeling was way worse. I couldn't join in on conversations about achievements that my child had made because Jacob wasn't at the same stage as their kids. It still happens now when they ask me about Jacob and school. School is just different for us. Unless you understand our struggles you won't ever understand why I talk about the things I do.

2. Special needs moms have to work extra hard at preserving their marriages. - As if divorce isn't already rampant in our society, special needs parenting ads so much more stress to a marriage. In the article the lady states:

"I put extra pressure on my husband; he is my best friend, and sometimes I expect unrealistic BFF behavior from him at the end of the day." 

If anyone is guilty of this, it's me!! Erick is the only person on this planet that knows exactly what it is like to live with not only a special needs child, but OUR special needs child. I get into a rut of expecting him to fulfill all of my friendship/relationship desires and I get frustrated when he doesn't care about every single facet of my day. It gets worse when my relationships with my friends are suffering. Which is often because I don't have the energy or time to keep every relationship healthy. which brings us back to point #1.

3. Special needs moms are not easily offended. - I totally agree and disagree with this point. I never get offended when people are curious about our lives with Jacob or Jacob himself. Ask away! I know that people are curious and are interested to know about autism and the hindrances that come along with that. I do, however, get offended when you act like raising a special needs child is no different than raising a typical child. I have both and it's totally different in every single aspect, and acting like it's no different is devaluing the struggle of our daily lives. Also, it takes me back to point #1.

4. Special needs moms worry about dying - This thought crosses my mind almost daily. Sometimes it's a fleeting thought and sometimes it lingers. I'm pretty sure that I have a scenario planned out in my mind of what would happen if each of our family members died. Maybe it sounds morbid, but it's a thought that I can't get away from. The thought of me AND Erick dying frightens me. I'm not really sure if anyone would be up for the task of taking care of a special needs kid and my other little wild child. It would be a huge undertaking and would really be hard for everyone, especially Jacob. 

       I was lying in bed with Caleb the other night singing a lullaby to him. I want to remember these times forever. I want to remember that at one point he had no worries in this world. One day, when Erick and I do pass, he will have the responsibility of taking care of Jacob. I hate, hate, hate that this responsibility is going to fall solely on him. I thank God often that he has given Caleb a strong, loving, proactive personality. It will benefit him in the long run and God's provision in that amazes me. 

5.  Special needs moms are fluent in the transforming body language of touch - She doesn't really elaborate much on this. I had a few thoughts that were different from hers. Jacob really changes with touch. He loves and craves massages (Ha! Don't we all!) His moods can change with a simple rub on the back. Or rubbing his legs when I'm putting his shoes on. It calms him like nothing else can. 

       Another thought was the touch from Jacob. He doesn't touch much but when he does I cherish it. He just recently starting bear hugging me, on his own! His hugs usually consist of him leaning his head toward you so you can kiss his head. I love it when I'm cooking supper and he runs in and bear hugs me and says "I love you mommy." Absolutely nothing like it! Which was a nice segue to to point #6.

6. Special needs moms know how to savor the gift of a child saying "I love you" - When Jacob genuinely says I love you, it's the best thing I've ever heard. Sometimes this is rote speech and replaces the things that he's trying to say, which is really frustrating. However, when he says it and means it, it's precious. He also likes to say this when he's in trouble, which shows me that he knows how to manipulate as well! He's a loving child, with a lot to offer and I love it when we share these 3 little words.

WWJD

      I've been living strictly by this acronym for 7, almost 8, years now. It's hard and frustrating to always ask myself this question. However, it really benefits me in the long run if I will follow the answer and not stray much from it. I know what your thinking! She's crazy!! WWJD was just a dumb fad 15 years ago. I can assure you though,  it's not what you think. My question is nothing of Christian connotation but of daily survival.

What Would Jacob Do?

     This is the question I've asked myself for the last 8 years. It's a simple one, yet so complicated. The fact that my life is constantly dictated by my oldest child is sometimes frustrating and dis-heartening but it is necessary. I sometimes feel guilty because at some point Caleb is going to realize that the decisions we make revolve around Jacob. I hope he understands when that day comes.

It's like this...

    "Where should we go eat?" -- Jacob can only eat at such and such.
    "Can we go to a movie?" -- Jacob doesn't do good in movies.
    "Can I get a cookie at the grocery store bakery?" -- No, Jacob can't have those.
    "Can you come to my birthday party?" -- Jacob doesn't do good at parties with a
            lot of people, and he can't eat any of the food
    "What are we eating for supper?" -- Something that Jacob can eat too.

Or with big decisions

    "Should we move into a different house?" -- I wonder how Jacob would handle that
    "Where should we go on vacation?" -- We need to go somewhere that Jacob will           enjoy
    "Should we have another kid?" -- I really don't think that would be good for Jacob         or us.
 
     Jacob can't help that he dictates life for us though. It wasn't his choice to have autism. I used to be angry about it and sometimes it still gets the best of me; but for the most part I understand that it is what it is and I might as well enjoy the times I have with both of my kids.

    I can want what I don't have, or, I can be joyful in the awesome, sweet little boys that I do have and live life to the fullest with them with no regrets.

It's not having what you want,

it's wanting what you have.

~Sheryl Crow~

   

   

Small Steps, Big Victories

Another trip to the beach is under our belts. Each year brings new challenges but also wonderful victories. Jacob changes so rapidly that things that may not have bothered him last year could potentially bother him this year and vice versa. You never know what his reaction is going to be to things.

He has once again amazed me. His courage, encourages me!

I want you to take a quick look at his picture from the bay last year and his picture from the bay this year.

                                                               2013                                                                                                   

2014

I love to watch him grow and conquer his fears. You will never quit hearing that from me. His small steps are undeniably huge for him and it delights me more than life itself. With all the struggles and hardships we have it makes the victories that much more special. 

The best part about this trip is that getting in the bay is not the only success he had. He really outdid himself this time!!! Before you see these next pictures I want you to understand that Jacob has never ridden ANY ride ANY where until this last fall at Caleb's birthday party (which was a total shock to everyone)

. Not only has he never ridden, he's never shown a desire to ride and always protests even if we tell him he doesn't have to ride. Not only did he ride some things at The Track but it was HIS idea...yes I just said that, yes I'm writing that because I'm still trying to believe it myself. Let me say it one more time for clarity...HE made the decision to ride some rides and for that there is no scale large enough to weigh how proud I am of him and probably no measuring device long enough to measure how much courage it took him. Ok I'll quit gloating and show you the pictures.

I'm actually proud of both of my boys for this. Caleb will hop on any ride any time but he knows that Jacob is typically scared and this was him during the swing ride. Constantly checking on his "brudder."

 I know that each year we will see growth in both of our boys. It makes me have hope for Jacob and with each year I pray that Caleb continues to be Jacob's best friend.

We had a great time at the beach with or without Jacob's triumphs (of coarse, that made the trip better) but I will leave you with some other pics from our wonderful trip!