Whose Sickness or Health?

Today is our anniversary!  Gary and I have been married 42 years.  I don’t even know how that’s possible, but somehow it is. 

There we stood in my beautiful home church in West Virginia, young and in love, pledging our vows to each other. 

Now we’re old, although I really don’t feel like it most days…and we’re still in love.  Our love is deeper and more settled than those early years, rooted in all the ups and downs of life that we have weathered together.

On my mind today are those familiar vows that are so often spoken at weddings.  We promised to stay true to each other “in sickness and in health.”

Never ever even once did I think of the sickness and health part as being anyone other than Gary or me.  Having a child with lifelong health issues was not anywhere on our radar when we spoke those words to each other and before God.

Today our plans were simple.  We would eat lunch out together while Aaron was at his day group.  Time alone while Aaron was happily occupied was a perfect plan.

Just before 8:00 this morning I heard Aaron having a seizure.  This is not unexpected.  I knew at that moment that our anniversary day plans would be changed. 

Later, when Aaron was awake and hungry, here was our view for a late breakfast on our patio.

And it’s OK, truly.  Gary and I are very used to these sorts of changed plans in our life.  And I am not trying in any way to garner sympathy. 

What has been on my mind this morning is that when Gary and I spoke those vows about sickness, we in reality were referring to our life with Aaron as much as anything – though we had no idea of our future.

Aaron’s life of special needs has been very trying at times.  Yet through it all, Gary has stood right by my side.  He has never wavered due to the stress of it all.  The demands of our many years in the military, his own career decisions, our moves, so many doctors, hospital stays…well, I could go on for a long time about how Aaron’s life has impacted Gary’s in particular.

But Gary never bailed on me or Aaron.  He has led and sacrificed and given of himself to both me and Aaron over and over and over.

So our vows, as I ponder them this morning, have taken on an even sweeter meaning to me. 

Staying true in our son’s sickness and health is indeed the greatest gift of love that I have been given by my husband…my husband of 42 years!! 

Happy Anniversary, Gary!   I love you so much. 

We’ll do a rain check on our lunch. 

Who Did Gary Ask to Dinner?!

I was a senior at Piedmont Bible College in January of 1978 when this tall, handsome student came walking across the parking lot on a Wednesday evening.  We had a tradition at PBC on Wednesday evenings.  The guys would wear suits and it was a night for asking a girl to dinner.  Girls would sit in the windows watching to see who would walk over to Lee Hall, and if the guy didn’t usually accompany a girl to dinner then the tongues would fly as the girls tried to guess each new young man’s date.

 

On that night the new male student who walked into the sight of all those wondering girls was Gary Moore.  And walking back across the parking lot with Gary was me!  I would say lucky me, but I don’t believe in luck so in keeping with this being Bible college I’ll say that I was blessed!  HaHa!  But I was and I still am today, blessed to be walking with this wonderful man, Gary Moore.

 

My eye had been on Gary ever since I walked into the student center on our small North Carolina campus in January a year earlier and had instantly noticed this new second semester student.  He fit several of my very serious future husband requirements.  He was tall, and he was handsome.  Very spiritual, huh?

 

It was also convenient that I was the student council secretary/treasurer and that I had access to the student mail boxes…in which I inserted special announcements…and in which I also took a look at Gary’s mail to see if he was getting letters from girls.  Yes, I did that.  And yes, he was getting such letters.  So I gave up hope on ever attracting Gary’s attention.  I decided that it would be friendship that we would share.  But I sure did still notice him.

 

Things happened…I dated another guy during the fall of my senior year.  And Gary kept going home to Bryson City on the weekends…to see girls, I thought, but he was actually helping out in his home church.  He attended a mission’s retreat that Piedmont held at Groundhog Mountain that fall because I encouraged him to come.  I didn’t know that he thought I was wanting him to come so I could spend time with him, so when I drove up with the other guy that I was starting to date, Gary nearly decided that he had already had enough of me.

 

My boyfriend and I broke up before Christmas.  And just before I left to go home for the holidays, Gary came in the dining hall and gave me a Christmas stocking!  Except he also gave one to my best friend Janet!!  Now I was confused!  But when I returned from Christmas break, Gary finally asked me to dinner on that Wednesday night…and all the girls sitting in the windows were surprised that it was me walking to dinner with Gary.

 

We never looked back from that point forward.  Love was blossoming for both of us.  But soon there was a big bump in the road.   A huge bump for me, and could have been for us…except for the integrity of this man I was getting to know so well.

 

I noticed that something weird was going on with my neck.  I couldn’t quite define it but things weren’t feeling right in there at all.  Before long I noticed that my neck was wanting to pull uncontrollably to the right.  I tried to hide it but eventually it became noticeable to everyone.  And the pain became severe.  My dear friend Janet talked to my parents, and I ended up going to different doctors in order to find out what was going on with my muscles.  It was a challenge to finish my last semester of college, especially writing my senior thesis, with my neck pulling and the pain being so bad.  Plus the drugs the doctors put me on were strong…things like valium and other calming drugs in an effort to quieten those muscle spasms.

 

Doctors didn’t have any idea about what was happening to me.  Several blamed stress, so they put me on some pretty strong drugs for that.  Nothing was helping at all.  I walked around most of the time with my right hand raised up to my neck.  Holding the back of my neck helped relieve the spasms a little.  I hung on for as long as I could, finishing my course work and knowing that I could graduate.  But the pain was so strong and the pulling so severe that just before I was to march in our graduation ceremonies I ended up in the hospital.

 

That was a tough time for me, but it was also a relief to be able to rest.  It was so sad that I didn’t get to march with my class.  I’ll never forget Dr. Drake, Piedmont’s president, coming to my hospital room along with Dean Reinert to present my diploma to me as I lay there in bed.  I think that was a first for them!

 

 

Mom and Dad were there as well, worried about me and wondering what was wrong with their girl.  And also there by my side was the man that had come to pick me up for dinner on that Wednesday night four months earlier.  He wore a suit on my graduation day, much like the suit he had worn on our first date, except now he sat on the side of my bed and we both smiled broadly, just as if I was standing in that auditorium along with the rest of my graduating class to receive my degree.

 

 

On a fairly superficial level, my illness was exceptionally hard for me as a young woman.  It changed my appearance, making me look weird as my neck pulled and as I held my right hand around my neck a large part of the time.  I didn’t feel pretty at all.  And pain took a huge toll as well.  It’s hard to be your best or look your best when you’re absorbed in pain.  So, on that level alone, I wondered if Gary would stick by me or if he would be turned off.

 

And what about the future?  We didn’t even have a diagnosis and had no idea what the long term would hold for me, for my body and my health.  What man would want to venture into that arena?  Gary and I were not engaged.  He wasn’t bound to me in any way like that.  Yet there he was, faithful to me with his support and his love and his attention.  He never made me feel weird or ugly or a risk too great to take.

 

I moved home to West Virginia to live with my parents, and tried to get well.  Doctors still didn’t know what was wrong.  Gary still wanted to be with me when he could travel from college to visit.  He saw the pain and the awful reactions to drugs and the huge unknown, but he stayed by my side.  And one day he even asked me to marry him!!  I didn’t waste a second before saying yes.  Time and rest helped me get better, but the effects of my illness were still somewhat visible, and I could definitely feel them.

 

We had a beautiful wedding, where I even sang a surprise song to Gary.

 

“God has given you to me, as my loving friend.

From beginnings love has grown, may its growing never end.

From beginnings love has grown, may it never end.

God is joining here today, families and friends.

Yours are mine and mine are yours, how the richness blends!

Yours are mine and mine are yours, how the richness blends!

You are handsome in my eyes, I treasure and adore.

But my heart determines this, I must love God more.

Though I love you oh so well, I must love God more.

I love you where you’re stongest, your strength can help me stand.

I love you where you’re weakest.

There I’ll care, I’ll help you there, and give your heart a helping hand.

God has given you to me, as my loving friend.

From beginnings love has grown, may it never end.”

 

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So we began our life together.  Today we celebrate 41 years of sharing this journey together and with God.  We have three beautiful children, and a wonderful son-in-law.  We have tons of memories.  We have each other still.

 

Doctors know now that I have something called Dystonia.  I will always feel the effects of this muscle disease in my neck, but I am so much better than I was back in 1978.  Gary didn’t know this would be the outcome, though.  Yet he loved me regardless, and he showed his strength and integrity when I needed it most.  He’s still doing that today, and I am forever grateful.

 

42 years ago, I walked across that parking lot with that tall, handsome man.  41 years ago, I walked down the aisle to say, “I do.”  And I am so thankful that I did!

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A Girlfriend

Tears stung my eyes one night last week as I listened to Aaron suddenly tell me about how much he loved his friend, N.  Oh, he’s talked about N for a long time.  Sometimes she’s his good friend…sometimes she’s his antagonist.  She is a fellow client at Paradigm, Aaron’s day program, and they have known each other for years.

Aaron’s developmental delays due to his autism and seizures have prohibited him from having some of the normal joys of life that our other two children have enjoyed.  He’s not able to drive.  Holding down a job would be very difficult for him.  Responsibilities that they have assumed as they have become independent have not been possible for Aaron.

Aaron has always had a pretty simple view of life.  He’s never seemed to really mind not moving on in life as Andrea and Andrew have.  It’s actually a blessing that he doesn’t have those desires.  He’s very happy to live as he does.

Yet when Andrea and Kyle started dating, we saw another side of Aaron beginning to show.  It was a combination of jealousy over Kyle’s relationship with Andrea, whom he dearly loves, and resentment.  But was there resentment over Kyle taking Andrea away?  Or resentment over Andrea and Kyle having something that he did not have?

Two years ago, Aaron went with Gary and me to see Andrea in Houston.  This trip had the different dynamic of Kyle now being in the family picture.  He and Andrea were not engaged yet, but we all knew that they would be someday.

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On one hot Texas afternoon, Kyle was showing us around Galveston.  We walked in the historic district, going into quaint shops and enjoying the sights before heading to dinner and the beach.

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Aaron, however, was in a very foul mood.  And when Aaron is in a foul mood, no one is in a good mood.

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Aaron didn’t want ice cream.  Aaron didn’t want candy.

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Aaron didn’t want to look at old architecture.

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Aaron didn’t want to have his picture taken.

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It was miserable.  WE were miserable!  He kept saying, “I just want to go out to eat and go to that lake!”  A really big lake, by the way.

In the parking garage, as we walked to our car, Aaron finally had enough.  With pent-up anger, as I tried to walk with him and cheer him up, he blurted out:  “Well, Andrea and Kyle are going to get married!!  Why can’t I get married??!!”

There it was…a glimpse into Aaron’s feelings and into his heart.  And there I was, with no words to console him.  What could I even have said to make him feel better?

In the following months, Aaron brought up the girlfriend and marriage subject more and more often.  He was putting two and two together, and there were some uncomfortable moments.

“Mom,” he said one day, “I want a girlfriend.”

“Oh, Aaron,” I answered.  “I understand that, but you don’t really need a girlfriend.  Just be happy to be friends.”

“But you were a girlfriend to Dad, right?” he asked.

Oh dear!  Busted!!

“Well, yes, I was,” I uncomfortably answered.

“What was it like?” he continued.

“Ummmm,” I struggled, “it was special.”

“I want to be special,” he said.

My heart!!  What does a parent do with this side of their special-needs child?!  No doctor or medicine or therapy can fill the normal void of my son wanting to be loved in the way that I had just described as being special!

As Andrea and Kyle became engaged and we planned their wedding, Aaron was resentful.  He didn’t even try to hide it.  And on the day that we told him about their engagement, he went outside and did his thing in the mulch, alone, as he crumbled mulch and I watched him out the window…my heart crumbling, as well.

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Gary and I have tried to be honest with him as he’s asked more than once about why he can’t get married.  I mean, could he marry one day?  But then we’re reminded of the very answers we give to Aaron when he brings up the subject.

We tell him he needs a job…that he would need to live somewhere else with his wife…be able to pay his bills…that there would be her medical issues and his medical issues…

And we feel mean to tell him these things.

Yet that IS the reality of Aaron’s life.  Reality can’t be sugar coated in an effort to make Aaron feel better.

Or in an effort to make us feel better, as well.  Letting Aaron marry would bring to our doorstep a host of issues that we do not even want to think about.

On that night last week, after Aaron and I had watched a rather emotional episode of the series we’re watching, instead of hurrying out of his chair he instead started talking.

“Mom,” he began.  “I love N, and she says she loves me.  When I come in Paradigm, she says hi to me.  She wants me to sit beside her, and she holds my hand.  That makes me happy.  It makes me feel good.”

The sincerity in his voice and his sudden cascade of words stopped me from moving off the couch.  His rushing words and his emotion also stopped me from brushing off what he was saying.  Instead, I sat there and looked at him as he talked.  He continued.

“Ever since first grade,” he said, “I wanted a girlfriend.  No one ever wanted to be my girlfriend until N.”

It was hard not to smile, and also hard not to cry.  In fact, my eyes did fill with tears, which Aaron really dislikes.

“Are you crying?!” he asked.  But when I told him I was, a little, he didn’t even get upset.  He just kept talking about N…about how he wanted her to be his girlfriend…and how no one else wanted to be her friend.

His relationship with N is complicated.  She is complicated and Aaron is complicated, and there are many issues.  N uses Aaron, trying to take his money and his food and all his time.  She gets angry, and sometimes makes Aaron cry.  Yet Aaron defends her most of the time, particularly when she talks him into giving her his money.

Aaron reminded me of the day that I had recently called Barb about N taking some of his money.  Aaron gets very angry when I do that.  He said the most amazing thing that night.

“Mom, when you called Barb about N taking my money, you messed up the boyfriend/girlfriend option!”

Where on earth did he come up with that?!  And how on earth did I not break down laughing?!

A few weeks ago, as I drove Aaron to Paradigm, this is what he said:

“Mom, N asked me to marry her.  On accident, I put it too far and I said yes!”

Again, I was laughing inside but knew that on the outside Aaron needed my understanding.  Thankfully, his “putting it too far” did not end up in a commitment of any kind.  But sometimes, in his heart, I know he wants to have this taste of a normal life even though he has no idea at all about what it would mean.

But Gary and I know what it would mean, and we know it can’t happen.  It makes me a little sadder for Aaron when he does talk about it.  Yet I think of the reality of what would happen if we said yes to this grand idea, and I’m jerked back to THAT reality and know that it can’t be a part of Aaron’s life.

God continues to give us grace and to soothe my heart when I hurt for Aaron.  And I’m very thankful that He gives us the strength to not “put it too far,” and say yes!!

I’m thankful, too, that God isn’t too far from us in any of this.  He knows and understands,  and His promise to be near the brokenhearted is always true!

Aaron and The Wedding

 

Two weeks ago we had…a WEDDING!!!  Our first wedding!!!

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Our daughter, Andrea, was wed to Kyle Kester in a perfectly beautiful outdoor ceremony at the Texas home of Kyle’s grandparents.  It had rained a lot there, even the morning of the wedding; but God told all the weather forecasters that He was sorry to spoil their forecast…that He had lots of people praying for no rain, so no rain it was. 

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It was a small wedding, the way Andrea and Kyle wanted it, and was full of close friends and family who helped with everything and shared in our joy.  Even my brother, John, married them…and his wife, Jeanie, was the coordinator. 

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Family.  When all is said and done, is there anything or anyone more precious to us than family?  And especially at an event as special as a wedding, family is there.  The pictures are taken, the hugs shared, the laughter abounding.  Family love is everywhere during a wedding.

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Yet when all the wedding photographs are finally ours to see and enjoy, we will look at our family wedding picture and have one missing member. 

Aaron.

Aaron could have been there…and yet he couldn’t.  Let me go back in time and explain.

Kyle, from the first time he walked into our house nearly three years ago, was a natural with Aaron.  We love that about Kyle.  He is patient…treats Aaron as an equal…knows how to talk to Aaron…and knows when to redirect Aaron more than most people do at this stage in their relationship. 

Aaron has a very close relationship with Andrea.  Aaron is the older by 18 months, but he still sees Andrea in somewhat of a mother role in his life.  He loves to talk to her on the phone, almost always about himself, but still he wants to tell her everything about his current movie or game or activity. 

But two things happened when Kyle came into this perfect picture.  The first thing is that, to Aaron, Kyle was taking Andrea away from him. 

“I still want Andrea to be my sister!” Aaron exclaimed when he realized that Kyle just might be here to stay.  We explained and explained, over and over, that nothing would change…that Andrea would still be his sister, forever…and that she would still come to visit, and we could go visit her.  And that if they got married, he would gain a wonderful brother!

The second thing that happened to Aaron was the process of figuring out just who Kyle would be in our family, and particularly who Kyle would be to him…to Aaron.  Aaron struggles with just who is who in family relationships.  He may meet a couple and later say that the man is the woman’s dad, not her husband.  Uncles, aunts, and cousins are completely impossible for him to understand.  And brother-in-law?  Forget it!!

Aaron wants to forget in more ways than one! 

“I don’t NEED a grand-brother!!!” he blurted out one day as he expressed disapproval over the upcoming marriage. 

We didn’t even tell him that a “grand-brother” isn’t a thing. 

Many of Aaron’s thoughts about all this marriage business, and the dynamic driving his thoughts, will hopefully be the stuff of another blog one day.  Back to our decision now about Aaron and him coming to the wedding…

Andrea called late one Saturday night last December with the very happy news that this had happened:

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 Kyle and Andrea’s engagement was not unexpected at all, but the reality of it was cause for so much joy.  We were happy, happy, happy!! 

Yet with Aaron, we were slow to tell him the great news.  We knew that he would not be happy, happy, happy.  The next day, on Sunday afternoon, we told him what he suspected to be true…that Andrea and Kyle were engaged to be married.

Not long after, I looked out the window and this is what I saw.

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 Aaron was crunching up mulch.  This is his long-standing way of relaxing…of unwinding…of thinking…of dealing with stress. 

My heart just went out to him as I looked at him sitting there, alone with his mulch and his thoughts.  How difficult it was, and would continue to be, for him to adjust to this huge change looming in his relationship with Andrea.

I opened that door of my heart and I cried.  I cried off and on that whole afternoon…some happy tears for the engagement…some sad tears for the reality that is always Aaron.

My thoughts had already, for months, turned to how we would fit Aaron into a wedding.  Initially, I tried to figure out ways that we could make it work, having a wedding down in Texas where we wouldn’t have someone who could help us with Aaron.  I knew that Kyle’s sweet family would do whatever they could to help us.  But still…

A couple weeks after the engagement, everyone was home for Christmas.  We have such a fun time all together, laughing and eating and telling stories as we catch up.  But Aaron doesn’t have such a fun time.  He does for awhile, but then reality hits him.  He is not the center of our time and attention.  He must vie for his place, take his turn talking, and eventually come to the dawning conclusion that our interest in aliens and nanomites and volcanoes and outer space is waning after several hours…and most definitely after several days.

Then there is all the hilarity as we laugh and tease and hug.  The cherry on top is our annual Christmas Eve Bingo game, with gifts to be won or to be stolen…loud and long…and miserable for Aaron.  He does not like parties…he does not like emotion, including too much laughter…he does not like Dad being goofy as he directs the game…and he does NOT like having his gifts stolen. 

It inevitably leads to what Andrew calls, “Aaron’s Annual Christmas Meltdown.” 

And it is not a tradition that we treasure. 

But this is who Aaron is, down to his core.  He can’t help it and he can’t change it…and certainly neither can we.

So when we were all here this past Christmas, while Aaron was occupied in his room and with Andrea’s beautiful diamond sparkling on her finger, we had a family wedding talk.  Specifically we had a “how do we fit Aaron into a family wedding” talk.  And the consensus was unanimous:  Aaron would not fit into a family wedding.

It sounds harsh, maybe.  Unbending on our part.  Heartless.

But you see, Aaron doesn’t see things like we do.  He has no emotional interest in family events like we do.  What matters to Aaron…is Aaron.  I say this a lot, but it’s because it’s totally true.  Aaron wouldn’t care about a wedding, on many levels, just as he never cared about family funerals or celebrations or anything else that was full of other’s emotions.

Emotions drive Aaron nuts.  So does having his routine disrupted…sharing attention with others…sleeping in strange places…and having to be around lots of noisy people who are not aliens.  He would love it if they were aliens, but they are not.  Just another bummer!

And what if Aaron was having a bad seizure day on the wedding day?  That would have been just awful.

So our only reason for having Aaron with us would be FOR us.  For us to say that Aaron was there.  For us to have the whole family together.  For us to have the photos taken (which Aaron would HATE, by the way). 

Andrea and Kyle’s wedding day was a day for them, and for both our families.  A day to relish each other and to enjoy every sweet moment to the fullest.  Aaron, honestly, would have made it impossible to do so.

Therefore, Aaron stayed back in Kansas.  Abigail “watched over” him, as Aaron says.  She and her fiancé Corey, and Abigail’s parents, David and Melissa, had tons of fun with Aaron.  At least I like to think it was tons of fun for them.  Ha!  It certainly was fun for Aaron. 

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And let’s not forget Gracie and Cosmo, who became Aaron’s furry friends.  He loved every minute of doggie licks and snuggles!

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We all live life wanting no regrets.  But when you have a child with special needs, especially behavioral issues, you sometimes must shift around your definition of “regrets.”  We do regret that Aaron couldn’t be at the wedding, but we don’t regret our wise decision to not make him attend an event that he would truly detest. 

Our special Aaron definitely makes our life unique and forces us to sometimes make very difficult decisions.  Often the best decision for Aaron, though, is the hardest decision for us to make, but Aaron’s needs and his happiness is what must come first.   

And trust me, we’ve all learned that lesson the hard way over the years…more times than I can say. 

Now the holidays are right around the corner, and we’re about to see how Aaron handles his new…

GRAND-BROTHER!!! 

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The Plan

Today is a super special day!  You see, it’s my anniversary…OUR anniversary!  The day that Gary and I said “I Do!!”  It was 39 years ago that I wore the beautiful dress that my mother had made, every stitch lovingly sewn by her hand.  39 years ago that I walked down that aisle of the brand new Johnston Chapel Baptist Church, the first bride to do so in our new sanctuary.  39 years ago that I joined my hand with Gary’s and we embarked on our new life together. 

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Doesn’t it sound perfectly romantic?  And it was!!  It was because we planned it that way.  Every bride plans her wedding day to be exactly as she wants it to be.  We’re watching our daughter, Andrea, plan her wedding to Kyle now.  It’s fun to see their special day taking shape. 

No bride and groom plans for things to go awry on their special day.  Sometimes things don’t go as planned on the big day, but the plan is for all to be as perfect as possible.  Perfect plans, planned with perfection…the dress, the tuxes, the flowers, the attendants, the food, the music…each checked off the list as the plans take shape. 

The PLAN!!

Fast forward 39 years, to this morning.

I had a plan for this morning.  I was going to sleep in on this Saturday morning.  My normal wake-up time is 5:30. That’s a.m.  So on a Saturday, I love having no alarm go off.  I love waking up when I wake up, which is never real late but any time past 5:30…A.M.!!…is late for me. 

Part of my careful plan is to even set the coffee-maker alarm for one hour later than normal.  Ahhhh…luxury!!

Therefore, you can understand my irritation when our old Great Dane stood up this morning in our bedroom where he sleeps, and halfway shook himself, and woke me up.  I knew…I just KNEW…what I was going to find.  Jackson doesn’t get up off his mattress on the floor very easily now because he is so old and stiff, but the one time that he will get off his bed is when he either has to go potty, or he already HAS gone potty.

This morning it was the latter.

And it wasn’t even 6:00 yet…which means it was five something…too close to my normal wake-up time for this Saturday morning when I had so carefully planned to sleep late!!

And yeah, there was poop involved, on the floor and on his bed.

I did finally go back to bed after the clean-up, but it just wasn’t the same.

Happy Anniversary day!

Dear Gary had given me flowers yesterday evening, and this morning they were joined by the sweetest card.  Then later, coffee cups in hand, we walked down to our little Mulberry tree with Jackson sniffing all around, and we picked mulberries.  It’s so us, this simple kind of thing.  It’s the simple life that we love in the place that we are.  I was planning breakfast on the patio with the birds and me and Gary, then making his favorite cheesecake, and on I went with my planning.

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Then the back door opened.  Gary and I saw Aaron coming across the yard.  He was early to get up, as well.  We both looked at each other, knowing what we each were thinking.  Aaron joining us wasn’t really in our plan for this morning quite yet.

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Aaron wondered what we were doing.  He was unimpressed with the fact that we were picking mulberries.  He wanted us to be back in the house, where we could see that he had his coffee and where we could listen to him talk.  But we continued picking our mulberries while Aaron walked back to the house, a little in a huff because his morning wasn’t beginning as planned, either.

Soon I did fix our breakfast, where Gary and I were once again joined by Aaron.  He was still a bit huffy and on edge, but bacon helped.  I thought it was quite ironic that he was wearing a shirt that said, “No Bad Days.”  HA!!

I wish it could be that simple, but with Aaron it’s just not.  A day not going as he so carefully plans can set him on the wrong path for sure, and Gary and I are dragged along as well.  But breakfast, and joining me as I watered the flowers, and going with Gary to the hardware store, did a world of good for Aaron…and for us…and so our day has been going along just fine.

Not perfect, though, as we would like to plan for our anniversary to be.  But it’s us, with Aaron, and it’s really what it’s supposed to be.

39 years ago, in that pretty church with all our plans coming together, I would never ever have dreamed of having our 33 year old special needs son still living with us.  It’s not that we don’t love Aaron.  It’s just that having ANY child with special needs, and all that this life entails, would never have been in our master plan. 

But our life, with Aaron, WAS in God’s master plan for us…because He is the Master of our lives.  We’re not.  It really is that simple.

Yet not that easy, on many days and in many ways.  We have questioned and struggled and been angered plenty of times over these years.  And still, God reminds us that our plans are not always His plans.  He tells us that He knows the path that we take, because it’s the path that He put us on.  It may be a path with suffering and pain, with questions and even anger, but it’s always with God beside us and under us and all around us. 

I’m thankful that God also forgives us, because we don’t do this very well on some days.

I looked at my cup of tea this morning as we ate breakfast on the patio, Aaron included.  My tea was in a wonderful mug that our friend, Terri, helped Aaron make for me while we were out of town last week.  He wasn’t sure that he would like painting, as he calls it…and he still isn’t sure that he liked painting.  But he is very proud of that mug.  He even opened the running dishwasher the other night when friends were over so that he could show them his mug that he made for Mom. 

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I will treasure that mug.  I will treasure our Aaron, even on the trying days, with God’s strength.

And I will treasure the careful plan that God has made for our life, including the trying days, with God’s strength. 

Our life began with a plan, and our life will end with a plan. 

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God’s plan!  The best plan!!

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Rocking Together

Yesterday was one of those days.  It was a culmination of several of “those” days that actually became one of THOSE days.  Am I making sense?  Let me once again offer some quotes from Karen Williams in her excellent article – Understanding the Student with Asperger’s Syndrome.  For Gary and I, the title should read – Understanding Our Son with Asperger’s Syndrome (If That Is Even Remotely Possible).  Williams says, under the category of Emotional Vulnerability:  “Rage reactions/temper outbursts are common in response to stress/frustration.”   She goes on to say that those with Asperger’s “………..are easily overwhelmed when things are not as their rigid views dictate they should be.”

I would add that, likewise, parents of Asperger’s children (or adults who behave like children) are at times overwhelmed when things are not as their child (or adult who behaves like a child) wants them to be.  Williams adds, “Affect as reflected in the teacher’s voice should be kept to a minimum.  Be calm, predictable, and matter-of-fact in interactions with the child with AS, while clearly indicating compassion and patience.”

As a parent with an adult (who sometimes behaves like a child) with Asperger’s, I do whole-heartily agree with Williams.  I would also add that perhaps the parent should have a pillow to scream into; a punching bag hanging in the garage to punch on; a blog to write in……………OK, just kidding.  Sort of.

Aaron’s been hung up on a computer game and it’s been all consuming to him.  Saturday was one of those days when he just would not get off the computer to shower, take his pills, or even eat.  Aaron has to reach a certain level of a game before he will turn it off.  This is why we removed Nintendo and PlayStation from our home years ago.  He does much better on the computer, for some reason, but occasionally will revert to these old behaviors.  When this happens, we take the keyboard away and hide it.  Aaron has come to expect this and is usually agreeable about it………..as if it’s almost a relief to have the temptation removed.

Yesterday he was not relieved.  We removed his keyboard Saturday night, so on Sunday he clipped coupons and then napped while our small group was here for lunch.  After his nap, when the small group was gone and a friend who had stopped by had left, Aaron fully expected that his keyboard would be returned.  We had not made it clear that we were not returning the keyboard at that time.  Mistake number one:  Not being clear and consistent, and expecting Aaron to follow along.  Consistency has always been an issue, especially with me.  And inconsistency and change does not work well with Aaron.

Aaron was talking to Gary and me about all of this, and followed Gary downstairs to his study, where they continued to have a pleasant conversation.  Gary was very upbeat and happy.  Aaron was holding a container of his favorite Pringles……………and was becoming agitated.  Soon I heard a strange noise and when I walked downstairs I discovered Gary staring quietly at the mess.  Aaron had thrown his container of Pringles across the room and there was a huge pile of chips and crumbs all over the floor as well as some of Gary’s bookshelves.

Well, well, well…………now what?  Aaron grabbed the container, twisting and squeezing it in sheer frustration as he continued to escalate.  Gary and I followed him upstairs, talking calmly to him………….no affect in our voices at all.  If we yelled, we knew that Aaron would go through the roof.  His eyes were darting around, probably trying to find something else to break.  We stood there, using soothing tones that calmed Aaron a little but were not totally defusing the situation, when suddenly Gary asked, “Aaron, do you want to go to Dairy Queen and get a blizzard?”

It was amazing to see Aaron’s face.  His struggle was so evident as he tried to process this offer.  He was slowly deflating, but he wanted to still be angry.  He paced around the family room and then angrily said, “OK!!  I’ll go!”  He put on his shoes and socks, and then Gary asked him if he wanted to take the van or the truck.  Aaron calmed down even more as he said that he wanted to take the truck, so off Gary and Aaron went……….with Aaron sitting up in the truck with his dad.  I knew what an effort it took for Gary to do this.  He was tired after a hard weekend of working outside, studying for Sunday School, and teaching that morning.  I knew that Gary wanted nothing more than to rest, to relax, to have time for some things that he wanted to do.

His love for his son was evident…………..both of us were loving Aaron at that moment but not really liking him.  While they were gone, I vacuumed up the mess downstairs, wishing that the messes that Aaron makes in our hearts were as easy to dispose of and forget.  When they returned home, Aaron was a different person.  He was full of talk about his M&M Blizzard, their run through the car wash, what road they were on, and the barber shop that was nearby………….”You know, Mom, they have that red and white sign that looks like a spinning candy cane!!”

Later, Aaron and I sat on the glider on the front porch as a thunderstorm moved through.  I love doing that and was happy that Aaron joined me when I invited him to come out.  There the two of us sat on the glider, trying to rock as the wind blew and the thunder rumbled and the rain came down.  We talked………..mostly Aaron talked, of course……………and I kept trying to rock.  You see, Aaron likes to sit forward on the glider and when he does this, he rocks in his own rhythm……….which is the opposite of the way I am rocking.  When I went forward, Aaron went back.  Then when I was going backward, Aaron was pushing forward.  This is not conducive to smooth rocking!  I told him to sit back and relax so that we could rock, and for a minute or two he would.  Then he would sit forward again………..and again we would not be able to smoothly rock as he was moving against my every move.  I just observed, and smiled, and laughed softly at the awkwardness of this supposed rocking.

And I realized how Gary and I have to rock together in our life with Aaron.  We don’t always accomplish this feat, believe me!  Any married couple will agree that it takes time to develop unity in every area of marriage.  Aaron and his issues have certainly been difficult for us at times.  We haven’t always agreed on how to handle discipline, especially, as well as other areas.  Time and maturity and experience have taught us so much.  So many times, I have rocked one way while Gary is rocking in another direction.  This makes for jerky, unhappy motions in our marriage and in Aaron’s life as well.  He needs us to be unified………..and Gary and I need to be a solid unit as we deal with Aaron’s life and decisions that involve him.

Gary blessed me yesterday in how he handled Aaron with love and wisdom.  We were rocking together and the result was smoothness and pleasure in the end as we saw Aaron relax and calm down.  We never know what we’ll face today or tomorrow with Aaron, but we do know that if we rock together with God in the center, then life will be much happier and certainly more peaceful.