Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again.  Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!”  he exclaimed.  “All I do is WORK!!”

No one understands the humor of his statement like we do.  That’s because we all knew…and know…Aaron.  He worked the least but complained the most.  Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron.  Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston.  We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.

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This year we were taking lots of Andrea’s “stuff.”  That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle.  Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show.  He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work.  He was willing to do so, thankfully, and really was a huge help.  He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us.  Eventually, though, as we were nearing the end, Aaron’s impatience started to surface.  He knew that I still had other things to do before we could watch a show.  Bedtime was looming.  His routine was already a mess, and his nerves were showing.  He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings.  Goodness, no!  He doesn’t even understand what’s going on in his head and heart.  But he does SHOW his feelings by usually hurting ours.  Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame.  He blamed his anger on us for making him work.  He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said.  “You made me do servant work!!  I don’t like SERVANT work!!”

It was so hard not to laugh!  But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work!  Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us.  He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again.  😊

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He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.

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This past Saturday, he asked if he could help me with some pruning.

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He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants.  But when his version of normal is anything but, then helping becomes “servant work.”  Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him.  I’ll be honest.  Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times.  Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium.  Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.

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His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his.  Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary.  Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this.  God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength.  Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated.  My goal then isn’t about ME.  It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated.  When I do this, all too often, then I’m doing “servant work” in the way Aaron meant.  Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands.  Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended.  After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.”  (Philippians 2:5-7)

Servant work is God’s work, really.  And He’ll give us what we need to do it the right way, every day.

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The Skies From My Window

I believe the best lessons are learned when we have some clouds in our lives. Deeper trust and greater joy have been my experience during the stormier times of life.

He Said What?!

Many of you know that I love taking pictures of our pretty Kansas sky.  My favorite place to take those pictures is from the window in one of our upstairs bedrooms.  This bedroom will always be, to us, Andrea’s room – even though she moved from home several years ago.  When I see a particularly pretty sky I will run upstairs, open the window and lift the screen, and fire away with my phone camera.   

As I look back on these pictures, I find that no two are the same.  Absolutely every shot of our sky, on every day that I took those shots, is entirely different……if there are clouds involved, that is.  I don’t usually take pictures of a totally blue sky, though blue skies are nice.  But after a while, completely blue skies would be a little boring. 

Sometimes the…

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Wonderfully Made?

Today is World Autism Day.  It’s a day to bring attention around the world to the issue of autism – its causes, its impacts, its uniqueness – and so much more.  I can’t speak for others, really, but I certainly can tell you how autism has rocked our world.

I was a young wife but not a mother yet when Gary was in flight school at Fort Rucker, Alabama.  He was learning to fly helicopters for the army, and I was learning the bare beginnings of how to be a good military wife.  I particularly remember a warm Alabama day when I was outside our house on Sharon Lane, planting Zinnias, and wishing with all my heart that there was a baby – our baby – lying in a little crib inside.  I thought that life would be complete if we had a baby.

The army moved us to Fort Carson, Colorado, and in another house we did welcome our little Aaron Daniel.  He was perfect and tiny and complete, as was my happy heart.  A baby!  A son!

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I thought often of that stunning verse in Psalm 139:14:  “I will praise You, for I am fearfully and wonderfully made.  Marvelous are Your works, and I know this very well.”

Fourteen years later, I sat in a pediatric neurologist’s office in Tucson, Arizona.  I watched him talk to and examine our son…our Aaron…not so little now, but big and complex and confounding to us.  Gone were his sweet small innocent ways.  He was instead often angry, agitated, loud, embarrassing, and the center of much unwanted attention.

Gary and I at first thought that our unusual and perturbing Aaron was this way because of the effects of seizures he had endured since the age of seven.  Then we wondered if his behaviors were due to side effects from all his seizure drugs.  Or puberty, perhaps, added to the mix?

But Dr. Gray turned to me and told me that Aaron had Asperger’s Syndrome.  I was blank.  I had never heard of this, and I had no idea what he was talking about.  Only when he defined this syndrome as a form of autism did I have an idea…a small inkling…of what he meant.

But oh, little did any of us know what this REALLY meant.  Not until you travel on this unknown path of autism, with its myriad displays affecting every area of life…ours and Aaron’s…can you understand autism’s daily, minute by minute, impact.  Impact on Aaron…on Gary and me…and on Andrea and Andrew.

So, what was I to do now with that powerful, affirming verse from Psalms?  You know, the one that so eloquently said that God makes each baby…fearfully and wonderfully designs each one.  Really?

I choose.  I choose to trust God, totally…or not.

And then, even in my trust, I look up the words I don’t understand.  Really.

FEARFULLY:  means to reverence – so I know that I am to look on God’s design of Aaron and deeply respect what God has created.  I am to be in awe of what God has formed.  Of WHO God formed in my womb.  And trust me, some days I’m totally in awe of who and what I see in this son of ours…and not always in a good way!  And even as Gary and I shake our heads, we do know deep in our hearts that Aaron is exactly who God formed him to be.

WONDERFULLY:  (This meaning is the BEST!!)  This word means to “put a difference; to distinguish; to show marvelous.”

Aaron NAILS this one, people!  Oh my goodness, he is so different than the average bear…and he cares not one bit that he is!  He distinguishes himself everywhere we go and in everything we do…and he doesn’t mind one bit that he does!  AND…he does show himself…sometimes marvelous and sometimes not, at least in our way of defining “marvelous.”

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I decided to use some words to illustrate a little of who Aaron is, showing some recent pictures to boot.

Aaron is BLUNT:  NO picture to show here!  But earlier today I told him he could go to Dillon’s with me, so from that point he was impatient to leave.  He walked in the bathroom, where I was fixing my hair.  Wanting to leave NOW, he stared at me for a few seconds and then said, “You could just go to Dillon’s on a bad hair day!”   😊

Aaron is PERSISTENT:  Aaron talks and talks and talks and talks.  The other evening, he followed Gary to the bathroom, standing outside the door as he continued to talk and talk and talk.

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Aaron is PRECISE:  Look at his notebook in which he logs his times that he goes to bed and the times he wakes up each day.

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Aaron is LOVING:  He loves to share.  If you have junk to get rid of, just let Aaron loose with it, and he’ll give it to anyone that he sees.  He’ll also give away things that you prefer to keep.  Anyway, he has a big heart.  And he especially loves animals!

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Aaron is TOUGH:  He recently had 8 staples put in his head after a drop seizure on our stairs.  Tough hardly describes all he has gone through over the years, physically and in other areas as well.  But he was thrilled to get to keep those staples when they were removed…a trophy!!

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Aaron is THOROUGH:  Here he is yesterday, watching the movie credits with great intensity and delight.  After all, movie credits are part of the movie and are to be watched!  Totally.  To the very, very end.

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Aaron is RIGID:  We want him to wear a helmet for a couple days when we think his seizure pattern may indicate that he’ll have a dangerous drop seizure.  He does NOT want or intend to wear this helmet.  His Aunt Sandra struck a bargain with him, saying that she would make and send him a toboggan hat to wear if he would wear his new helmet.  So, he wore the helmet for an agonizing maybe three minutes.  He DETESTS how it feels!!  Tactile issues have never been ones he can overcome, from the time he was a little boy.  Here the helmet lays, where it was ungraciously tossed by a very frustrated Aaron.

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Aaron is FUNNY:  He does make us laugh, some days more than others.  He delights in the things that most of us ignore or take for granted…the cows in the field, the horses, things laying on the ground that he finds, funny commercials, store decorations, and on and on.

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And I could go on and on about our Aaron.  He truly is “fearfully and wonderfully made.”

In many moments, Gary and I don’t grasp that truth.  Have no doubt, there are deep tired sighs that you will hear often in our home.  We get frustrated, lose our cool, feel guilty, and then repeat the process again.

But also have no doubt that we know…we KNOW…that Aaron has been used by God to make a huge difference in our lives.  He has distinguished himself as God has taught us more about Him and about us than we would most likely have learned otherwise.  And Aaron has shown us just how marvelous God is in our weakness and in our pain and through our tears.

And God reminds us of how marvelous Aaron is, created with a purpose.

Yes, fearfully and wonderfully made!!

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