Monday, September 26, 2011

YAY Daddy!

Carolina blue skies and a few puffy white's a beautiful southern September day...

Sitting in church looking out the huge windows...watching the little squirrel that always runs in and out of the huge oak tree...watching the birds....and the breeze blowing through the trees.  It's a perfect day.  Holding my husbands hand...and thinking about what the day holds for him.... I am full of love and excitement...praying little "thank you's" for giving us this moment.  I know we will never forget this day...

A few months earlier... the pastor had announced the baptism service at the lake.  I silently nudged my husband and he smiled.  After church... to my surprise...he told me that he was considering being baptized.

So here we are...September 11th....a day that many of us will never forget for so many reasons.  I am so filled with Joy for Jason...and yet so filled with memories this significant day in our history.  All week we've been watching the memorials...hearing the heroring stories of the survivors...grieving with the children that lost so much that day...and praising God for the miracles and the lives that were saved that day.  Reminiscing about the sudden focus the nation seemed to have on God and our country.  Churches were flooded...people were suddenly searching...realizing we had put our faith in things that maybe always weren't going to be safe, and secure....maybe we had put our faith in the wrong places?

But this year...this Sunday...I will forever remember September 11th for a whole new reason...a joyous one.  This is the day that Jason is going to be baptized.

As we got to the lake...I was more than a little nervous about the kids being able to handle the crowd...the water...the sand...the loud PA system....the general basic sensory overload.  Had I prepared them enough for the ceremony? This could be a rough afternoon and I knew it...but I was trying to relax and pray my way through it.  "Lord give me patience...and wisdom with these kids...please help everyone to stay calm Lord...please O please".

I hopped out of the car and began rushing to gather ALL our stuff...trying to get the kids calmed down from a crazy car stomach already getting nervous...

All the sudden....I turned towards the lake and stopped...I felt like the Lord wrapped His arms around me as I looked at the little lake...I felt such a peace.

Huge oak trees hang lazily over a picturesque scene.  A small sandy beach in the shade.... and an old wooden dock stretching out into a little swimming hole.  The autumn sun was still hot...but under the trees there was a nice southern breeze blowing and it felt wonderful.

Of course...the kids immediately ran towards the water....Addie stopped at the edge of the sand screaming "sand in my shoes...sand in my shoes....sand in my shoes".  I'm suddenly scrambling to take off her shoes and calm her down.  Little C keeps he stops at nothing...just plows down the beach and straight into the water.  I'm yelling for Jason to grab him.  And here we go folks...

I'm thinking thank goodness there's only two of them as my husband and I are scrambling around chasing Little C and calming Addie.  I'm constantly reminded of how different they little sensory seeker and my little avoider.  Both on the spectrum and both so incredibly different.

Moments later grandparents, great grandparents, and friends begin to arrive.  Picnic tables, chairs, blankets, homemade pimento cheese sandwiches, Nana's walnut cookies, and all the excitement begins.

Addie is avoiding the crowd.... hiding in a quiet shady spot under the swing set... digging in the sand.  A friend comes over and asks her to help him build a castle.... she politely ignores him while continuing digging in the sand.  So her friend just sits down next to her and digs his own castle.  I was so proud of her for letting him play near her...and play in "her space".  Especially with the overwhelming event going on around her.

Meanwhile, Little C is staying as close to the water as he can.  Trying to jump in at every opportunity.  As the crowd gets larger...Little C becomes more and more over stimulated.  He's running in and out of the crowd at full speed...shaking his head side to side....laughing and screaming.  Constantly seeking sensory input.  It's taking all of our energy to keep him from jumping in the lake or running off into the crowd.

As I'm attempting to chat with friends and family...My eyes are constantly darting from one kid to the other...making sure...someone is with them....they're safe....and ultimately watching for the warning signs of impending melt downs.

As the service starts...Little C is kicking and screaming....he's way too wound up...with the crowd, the music, the food, the's too much for him.  I try to calm him as my mom gives him a snack.  It's not working we start taking turns running around the little playground area as he screams and yells and dives head first down the slide.  Addie sits in the sand barefoot and silently digging...completely unaware that she's slinging sand on everyone near by.  Her friend keeps asking her to play...trying to engage her...and she randomly answers him VERY LOUDLY.  I was glad she was responding to him.  But we were getting some glances from the crowd.  She doesn't understand the volume of her voice...and appropriateness I sit down next to her.  Trying to prompt her to use a quiet voice and giving her the words to say to her friend.  My mom took over the duties with Little I could focus on keeping Addie calm.  And now I start to focus on the service....

Each person is lead into the lake...their testimony is read aloud...and someone is chosen to pray for them.  It's beautiful...and personal...and such an intimate moment between them and God.  It's how I always pictured a baptism should be.  Such a huge celebration...yet so simple...and so full of love from an intimate crowd of friends and believers.  Many tears...many speechless moments...such an emotional and uplifting journey.  People that have been through so much...cancer, depression, addictions, just life...and the Lord has brought them through.  Such amazing journeys...

As Jason made his way into the water.  I took Addie's hand and asked her to walk with me to see daddy.  She looked at me startled...I had interrupted her digging....she paused for a moment...and then followed me without complaint.  I was surprised at her cooperation and excited for her to see this amazing moment.  We walked to the front of the crowd and sat in the sand on the edge of the water.  We had read books all week about what daddy was doing and how Jesus was baptised...and that's why daddy wants to be baptised.  She sat quietly as the pastor read Jason's testimony...about how he grew he accepted Christ in high our lives have radically changed since the birth of our two children...and ultimatley how much closer he feels to the Lord now than ever.  I sat their in tears...listening...and watching Addie's wide eyes looking at her daddy.  Then my dad prayed for Jason....of course this really made me dad was tearing up through the whole thing.  It was a beautiful prayer and such an special moment.  Everyone was sitting silently as Jason was about to be's this surreal peaceful moment.  I looked at Addie...not sure what she would do once he went under water.  I hoped I had prepared her enough and that she wouldn't get upset.

"In the name of the Father...and the Son...and the Holy Spirit..." ...the pastor baptizes J.

As my husband was pulled up out of the water....Addie jumped up in front of everyone..."Oh no" I thought..."what is she going to do?"

All the sudden....."YAY DADDY....YAY DADDY....YAY DADDY"....she was screaming and clapping and jumping up and down.  It brings tears to my eyes every time I think about it.  I will never forget that moment with her jumping up and down...screaming.... with a huge smile on her face. It was so perfect unforgettable.  It was the PERFECT response.  I was so proud of her.

After the service...the children's minister walked over to me with tears in her eyes.  She said "you know it's almost as if she was cheering for her daddy and The Daddy in heaven all at the same time."  WOW.  So true.

I learned so much that day at the lake.  I was so proud of Addie and her most amazing response.  I was so happy that she had understood somewhere on her level that this was a special day.  I was so overjoyed for J and what the day meant for him in his walk with Christ. I truly blessed by all the people's journeys that walked into the water that day.  And I was amazed at all the stories from the September 11th 10 years ago. We all have a journey.

Some journeys may be rockier than others...some filled with hurt...some filled with blessings.  It may be different than anyone may be a journey like Addie's and Little C's.  It may be a butterfly journey.

But no matter how hard it may seem...and how crazy life hurtful or how blessed....I hope I can always remember to say....

YAY DADDY...Jumping and screaming and dancing...YAY DADDY!!!

Monday, September 5, 2011

Promotion Sunday...

This was “our” promotion Sunday....

At our church...the promotion Sunday for everyone was last week...but we decided to wait and make this “our promotion Sunday”.  The regular promotion sunday is full of fun crazy events for all the kids.  It’s sort-of like “open house” at school.  It’s great for most families...but for a child with autism it can be very overwhelming.  All the parents being in the room...with all the kids...with the singing... and the noise....and a new classroom...and then they served snack (meals are a VERY hard thing for Addie).  So I had made the decision...
We had just moved...she had changed classes at school...and I knew she was pretty much DONE with all the transitions.  We took the week off...and waited until the next Sunday when things would be calmer and a little more normal for her.  
All week we had prepped and prepared for Addie to transition to a new sunday school class.  We talked about it over and over.  Where she was going to go...why she had to switch...what they might do in class...did they have a quiet potty...etc...  She has to know EVERYTHING.  We talked about it the night before...she prayed about it at bedtime...and I was hoping things were going to be smooth.  I was really feeling pretty proud of myself for all the prep work and the decision I had made to miss the "crazy" Sunday. I even had a nice “cheat sheet” made for her teachers...with all her likes and dislikes... and ways to help her cope in the classroom.  I was definitely giving myself a pat on the back...
So the morning came.  We got to church 30 min early to let her see her new her a chance to process the new room without the classmates and teachers.  The room was nice and quiet.  She walked in... and stopped...just staring for a few minutes.  I was holding my breath to see what she would do.  I showed her that they had already moved her nametag to the new room.  All the sudden her “light bulb” switched on and she said...”I like it...I really like it...I like my new room mommy”.....Phewwwwww....I sighed a huge sigh of relief.  “Oh Lord thank you....thank you for this quiet moment in her room...thank you for giving me the wisdom to prepare her”.  I was on cloud nine...feeling really excited for Addie....really proud of her...and of course a little proud of myself too.
About 30 minutes later...I started wondering what was going on.  There were no kids teachers....ummmm...had I made a mistake?!  I could hear the music starting in “big church” I knew something wasn’t right.  I peeked into the hallway and asked someone who was teaching this class.  The looked puzzled and said...”there’s no kids sunday school today...we’re commissioning the teachers...they have to come in the sanctuary with the adults.   Ohhhhhhh NOOOO...the loud sanctuary...she could never make it through a whole service....are they crazy??!!!  A cold chill washed over me.  I am the worst mommy ever.  Oh I am such an idiot.  How did I miss that did I not know?  I vaguely remembered something being mentioned about this....I vaguely remembered thinking we would have to skip that Sunday....but it hadn’t even registered with me all week.  
I looked back in the classroom at Addie who was now playing blissfully at the lego table.  Stacking and sorting the happy and comfortable.  What was I going to do?  What could I do?  I knew I was about to rock her little world...and there was nothing I could do about it.  
I thought about leaving...but little C was already happily settled in his new class.  The younger nurseries were still open....and we weren’t about to go and disrupt that.  So we decided to brave the adult worship service.
“Lord here goes nothing...please let the people around us be understanding...please help Addie to stay calm...please let her understand...please give me patience Lord”...I was praying as I approached Addie with her legos in hand.  “Addie...we are going to change our plans today.  Your new teachers are going to be in the big church with mommy and all your friends are going to the big church too.  Next week we will come back to your new class and you can stay here and play legos with your friends.”  She was dead silent...stopped in her building...staring at the legos...Then she exploded...  “No no no....I am in my new friends are going to teachers are going to play legos with me...there are two chairs...there are two chairs...there are two chairs”  She had been telling me that her teachers were going to sit with her in other lego chair.  So she began to chant about the chairs and nervously stack more legos.  I took a deep breath...waiting a few minutes to give her some time to process.  I repeated myself again...”Addie we are going to change our plans today...blah...blah...blah”.  “Oh Lord help me know what to do...should we this too much for her”  I was praying over and over trying to decide if I was pushing her to do something she couldn’t do or if I should try and give her the opportunity to work through it.  Then I got my answer...Addie suddenly stood up and walked out of the room.  
Walking down the hall...she was fumbling with her lips and doing her stimmy humming...I knew she was getting anxious.  I watched a few other families finding out about sunday school and quickly telling their kids that they needed to go to "big church"...and jelously watching as the kids barley reacted and calmly walked in the sancutary.  I had a moment where I was a little angry.  This is is she supposed to make it through a whole service.  And I thought about how it wasn't fair that the other families seemed to think it was no big deal to have last Sunday crazy...and this one too.  "Lord it just isn't fair that this is so hard for us...and it's so hard for's just not fair."  Just as I was having my own little meltdown in my mind...we got to the big doors with the music booming from inside.  Here we go....She froze at the big a trance she wasn't I picked her up and carried her into the big room.  My husband and I exchanged nervous glances.  We sat on the back row at the end...for easy escape.  There were lots of other kids in the service...siting quietly with their parents...coloring...eating “quiet” snacks.  It reminded me of sitting in church as a kid.  Again I was a little jealous.

As soon as we found our chairs....the band geared up even louder...the drums...the guitars....and then the singing started...and the congregation jumps to it’s feet clapping and dancing to the music.  This is usually my favorite part of worship...but I knew this would be a nightmare for Addie.  I look at Addie...standing in her chair...eyes wide and nervous....her hands firmly planted over her ears...she screaming “ loud....tooo loud....too loud”.  Of course no one could hear her over the booming music.  So I knelt down beside her...picked her up.  She was like a stiff board...her little heart was about to pound out of her chest.  “Oh Lord what have I done...this is a terrible idea....ok just calm down and explain this to her”  I whispered in her ear “we’re singing songs about Jesus....everyone is so happy and that is why they are singing so loud”.  She stopped screaming and looked at me.  She kept her hands over her ears...but she was quiet...she was just listening.  I winked at my husband...he smiled.  Even though I could still feel her little heart beating out of her chest....I knew she was calming down a little bit. 
Finally we made it to the last song...and it happened...
She took her hands off her ears and started to clap with the crowd!!!  I wanted to jump up and down and hug her...of course I refrained.  WOW...this was huge.  I quickly nudged my husband...he had a huge smile on his face.  She wasn’t smiling or singing...and it wasn’t really with the beat of the music...but she was clapping....she was trying to join in.  It was such an amazing moment.
I began to feel calmness...I began to feel relieved...”thank you Lord...thank you”  Maybe we are going to make it through this morning.  The music is over and we can sit and relax a bit.
Of course, I still was having my moments where I felt it wasn't fair as I watched the other kids and parents handling the service with such ease.  I wanted that for Addie and for us. All the sudden...the pastor caught my attention.  "It isn't fair" he yelled...I immediately turned my focus to the sermon....whoa...chills ran down my spine.  The sermon was about Jesus's parable of the man that hired the workers and agreed to pay them all the same.  At the end of the day some of the men had worked all day and some only about an hour...and he paid them all the same.  The ones that had worked all day were angry...they didn't feel it was fair.  (Hello ...that's me....yes Lord....I'm listening now )  The land owner told them not to be angry about his generosity to the ones that only worked an hour.  WOW!!  It really hit me.  I shouldn't be angry or jealous of other people's grace.  The Lord gives us exactly what we need.  We have exactly enough grace for today....we shouldn't worry about tomorrow....we should compare ourselves to's not a's not a race.  The ground is level at the foot of the cross...and none of us deserve any of the blessings that we have been given.  It's only by God's grace. I should be focused on Him and not on comparing myself to others.  It was such an amazing message...and one I really needed to hear.  It may not always seem fair....but rest assured the Lord is giving me and those around me exactly what we need.  Through His grace and mercy and perfect plan for our lives. 

During the service...I teared up at so many moments.  I watched Addie as she sat and drew in my little notebook that I usually take notes in.  I was flooded with memories...sitting between my parents in church.  It was such a special moment.  Then my husband put his arm around her...just like my dad used to do....and she casually leaned up against him as she drew.  He had the biggest smile on his face...and my heart just melted. 
The people around us were so gracious.  A few concerned glances...while she did her constant humming...constant twirling and fidgeting in her chair...constant clicking her pen as she drew...constant tapping the chair in front of her with her toes.  And of course asking every few minutes...”what are we going to do now?” (loudly I might add...Addie doesn’t like loud noises...but she doesn’t notice her own volume control and her voice is often loud when she doesn’t mean it to be).  But it was ok.... I was so proud of her.  She was siting in a crowd...with a PA system...with loud music...and here she was...handling it all.  

And guess what??!   She did it...she made it!!!  The WHOLE service...she made it!!!  And we made it.
I started my morning so proud of myself...thinking what a super duper job I had done preparing her...but I ended my morning so proud of thankful that we didn’t thankful that we had been blessed with this huge thankful that the Lord gave me just enough grace for today.   

On the way home I saw a billboard for the ice capades...something I’ve always wanted to do with Addie...but didn’t think she would be able to enjoy it with the crowd and loud music.  I poked my husband and pointed at the billboard...he smiled and said “maybe so”.  

I am so proud of her and how far she has come this year.  A year ago she would never have been able to set foot near those big doors with the loud music without crumbling onto the floor in total meltdown....she would have never been able to overcome all that she had today.  There are so many times that I question she ready for this yet?...can she handle this?  And sometimes she can't...and we fail miserably...but if we never try then we will never know.  She has done so many things that I never thought possible.  How can I put a limit on what God can bless us with.

I'm so thankful for God's grace and thankful for this milestone for Addie...and so thankful that "it's not fair".  I am a different person...a different parent...a different friend than I ever thought I could be.  This journey has blessed me and changed me beyond my wildest dreams.  

I'll never forget this promotion Sunday...because it truly promoted us all...

Saturday, September 3, 2011

Our Perfect Storm...

This is our perfect storm...and our journey through it...

Let's set the's two years ago.  My husband and I have great jobs..."typical healthy children" (so we thought)...a great house in a perfect neighborhood....everything was smooth sailing.  We weren't wealthy by any means...but comfortable.  We shopped at the organic grocery store...took vacations...enrolled the kids in Little Gym, etc...

Then it hit...without warning.  The climate was just perfect...the circumstances mounted quickly...the waves grew taller with every gust of wind...the clouds kept getting darker...the wind howled...and many times it has felt like this boat was going to break in half.  

With the birth of our son...our lives quickly changed.  He had a slew of medical problems right from the start.  So huge medical bills quickly piled up.  We also started having Addie tested at this time.  She had just turned 2 and we knew something was wrong.  Carting the kids from one specialist and therapist to another.  I quickly had to cut my hours at work to make it to all the doctors appointments.

Next came my husbands job.  He was working two jobs to make up the difference.  Then he lost his full time employment...and with that our health insurance.  We began sinking fast in all the bills.

Selling the house was the next logical step.  But since the market had depreciated in our area we were forced to do a short sale.  So on top of rushing around to doctors and therapists....we were going through all the "fun" that the mortgage company puts you through to avoid foreclosure.

We finally found a rental house that a co-worker would let us rent inexpensively until we could get our feet on the ground.  The house needed a ton of work...and this was a huge challenge from the start.

Suddenly we found ourselves... yes, two college graduates...waiting in line for food stamps, at the welfare office, and applying for medicaid.  It was a humbling experience to say the least.  Its a place I never ever thought I would be.  I felt like a complete and utter failure...and there was no way out.  On top of that...I felt so guilty for ever judging people in this situation.  For the first time I looked at the homeless person on the corner and thought of how quickly that could be me.

About a month after loosing our house....and moving....we got the official diagnosis for Addie...Autism.  We started early intervention...speech groups.  We just dove in with both feet.  Jumping into an unknown world.  We grieved...we reeled...we were spinning with Addie.  I felt like the waves were never going to end...and there was no light at the end of the tunnel. (see my post - My Little Butterfly)

Meanwhile the kids medical problems continued to was a tough winter.  Many trips to the ER...several hospital stays...and more specialists than I care to mention.

Then came little C's diagnosis and evaluations....early intervention again...more therapy...more doctors. (see my post - Another Butterfly Is Born...)

Many days I felt like my life had swallowed me whole.  I didn't know who I was anymore.  I was in survival mode.  I felt like the waves were too big...and I didn't even want to wake up to see what tomorrow would bring.  The fear and anxiety were unbearable.  I was having heart problems and anxiety attacks...this was no way to live.

I think in the midst of all that despair.... the Lord knelt down and wrapped His arms around me.  He had been there the whole time I just hadn't noticed.  I had been so focused on the wind and the waves and the storm clouds brewing...that I hadn't noticed so many of Christ's amazing blessings in my life.

Sitting in church one sunday I was hit with my story.  It's the story where the disciples are out on the water and they are caught in a huge storm (Matthew 14).  They try everything they can on their own to save themselves from the rocking waves and boat.  Then just when they are about to sink...they call on Jesus.  (hello...that is sooo me!!!...I got chills as the pastor read the verses.  I was frozen to my chair hanging on every word).  Then when Jesus came to them on the water they didn't even recognize him.  (wow...yes...I don't see God in this storm).  They were so focused on the wind and the waves that they couldn't see him.  When He calls Peter out on the water...Peter walks towards him until he becomes afraid.  He stops looking at Jesus and starts to sink.  Immediately Jesus pulls him out of the water. (even my lack of faith and will not let me sink...yes...yes Lord I am hearing you).  Then Jesus calms the storm.

WOW all the blessings the Lord had been giving us...and I hadn't always recognized Him midst all the chaos.  I had trouble accepting gifts and help from others...I had fear...I had self pity...I had pride...I had too many things in the way clouding my vision.

When I opened my eyes and focused on Him.  I could see....I could suddenly see so many amazing things that have many unexplainable many acts of grace and mercy.

Seriously...get ready for some chills.  Here are just a few......(because I could go on for days)

Our house sold in 10 days...let me rephrase that - we had 4 offers in 10 days...yes, in this economy.  When our air conditioner died the day of the closing...the Lord gave us $500 at the closing table....on a short sale (this doesn't happen).  And guess what?! was the exact amount to fix it!

When we didn't have money for groceries...the Lord provided for us.  Several times food literally arrived in the mail from family members....they didn't even know how desperate our situation was...but they just felt lead to help us.

When we couldn't afford Addie's new school that she needed desperately...the Lord provided.  A week before we had to pay the tuition...someone felt lead to sponsor her and paid it for us!!  (see my post...Butterfly School)

The old rent house had a fridge that didn't work (it was actually duct taped together and full of mold).  So a dear friend calls and says..."don't argue with me...I'm not taking no for an answer...I'm bringing you a fridge...those kids are not eating out of that moldy thing".  An hour or so later...a beautiful working fridge came literally to our door step.

When the dishwasher broke in the rental house.  The next day at work someone said..."Hey, does anyone need a dishwasher?"  YES...this really dishwasher!!!

The landlords let us work off a few months rent by painting, stripping wallpaper, cleaning, and fixing lights, etc...  Our friends and family gathered together and helped us.  It was amazing to see the Lord gather all these people to help us.  We felt so loved.

The kids have been blessed over and over again with the best possible therapists and specialists.  We have been spared so much.  Every time we have been in the hospital I see other kids and families there that are not going home as quickly as us...and I know how truly blessed we are.

Addie had a private speech therapist that wanted to work with her at no crazy is that?!  And then we were given blessings through the Greyson Foundation to continue some of her other therapies.

Jason's job situation has slowly and steadily improved.  Finding and searching for a new job grew him in so many ways.  He's more confident...more sure...and more hard working than ever.

We were able to move to a safer home a few weeks ago.  Then our new apartment complex had a mix-up that worked in our favor...and we got a much nicer place than we could have ever afforded.

Over and over again...we have been blessed.  Over and over again the Lord has shown himself to us.  We may not always see it...and the stormy waves may still be coming...and I still call out "why me"...and I complain....and sometimes my pride gets in the ways and I struggle with accepting these heavenly gifts.  But he still picks me up....despite my shortcomings...He is still there guiding me and wrapping His arms around me.

I thought I was going to break under all the weight.  But I didn't.... the Lord held me up...He didn't always calm the storm...but He brought me through it.  He never let me sink.  He has made me stronger...more understanding...more blessed and thankful than I ever thought possible.

He never said life was going to be perfect..."For in this world you will have troubles...but take heart because I have overcome the world." John 16:33  Even though we don't know when or how....He has already overcome our perfect storm.  He knows how it's all going to end.  He has a perfect plan for all of this.

Many times I wonder so many moms with special needs children.  Why did He chose us to have these butterfly children.  And like so many families going through job loss and financial struggles.....why do we have to go through this colossal perfect storm.

But I think sometimes He has to bring us to our knees... so that we may stop....and look up into His face.  It's only then that we can sit peacefully in His presence...with His strong loving arms wrapped around us.