The Waiting Game

It all started a few weeks ago with a commercial that Aaron and I saw on television during Wheel of Fortune. There was Ronnie Milsap, playing a piano as he sang one of his signature songs. For some reason, Aaron was captivated. Maybe I made a comment about Milsap. I don’t really remember, but from that point Aaron was on a mission. His mission, that he gladly accepted, was to find a Ronnie Milsap CD. Of course, Ronnie Milsap CDs are virtually impossible to find on store shelves. We did find the Ronnie Milsap insert at Wal-Mart that showed where some CDs used to be, but none were to be found. This discovery just further fueled Aaron’s desire to find some Milsap music, but several stores and phone calls later found us empty handed.

Aaron knows that when one is empty handed, there is always…..AMAZON.COM!!!! His answer to every fruitless search on the planet is found….in his opinion…..at this amazing Amazon place. And Aaron, knowing that Mom was weakening in her search, knew something else. He knew that one should strike the iron while it’s hot, and that if Mom was on the amazing Amazon for one item, she might…..just might…..order two items while she’s at it. Or even THREE!!!

So Aaron used his very favorite internet tool…..GOOGLE. And on Google he found an epic disaster movie that he decided he could not live without.

10.0 EARTHQUAKE!!!!! Predictable story line…..cheesy acting…..unknown actors……painfully unbelievable….

In other words, the perfect movie in Aaron’s professional opinion. And trust me, he knows ALL about terrible B disaster movies.

So this past Tuesday, Aaron hovered behind my chair as I ordered The Essential Ronnie Milsap CD……10.0 Earthquake……and The Essential Charlie Daniel’s Band just for fun.

Aaron’s hounding and hovering surely paid off, he was thinking.

And then it began. The countdown, all too familiar to me. And a big reason that I really wanted to find Ronnie Milsap in a store, where I could buy the CD outright without the wait.

I had barely gotten out of my chair after placing the Amazon order when it began.

“Mom, when will it come?” Aaron asked.

“It’ll be a few days, Aaron,” I answered.

“So when will it get here?” he continued.

Oh dear. I was thinking that paying the whopping postage charges for overnight shipping might have been worth it. I didn’t want to tell Aaron that Amazon had said 4 – 6 days. Why not? Because then Aaron would want to know which it would be. Four days? Or six days? If four days, then that would mean Saturday. If 6 days, then that would mean Monday. We would be in constant uncertainty as he tried to nail down the four or six day business. Nope. So I made a decision at his next inquiry, which was soon in coming when I didn’t answer the previous one.

“Mom, how long will it take?” he queried.

I told him it might take a week. That’s a nice solid guess.

“A week?” he confirmed.

He thought for a few seconds.

“So……next Tuesday?” he asked.

“Maybe,” was all I would venture.

“So if it doesn’t come on Tuesday, then you lied?” he continued.

There is no winning in this waiting game with literal Aaron.

There were more questions that day, and the next.

Will it come in a box?

Will it come to the front porch?

Will it come to the mailbox?

We were 24 hours into the amazing waiting game from our amazing Amazon order, and I was already exhausted from Aaron’s desire for definitive answers.

On Thursday morning, Aaron was up before 6:00. I was NOT ready for that! And I was really NOT ready for this, the first words out of Aaron’s mouth as he stood in the kitchen.

“Mom, you said it might come in a week?” he asked.

“Yes, Aaron, it might come in a week, but we’re not sure,” I answered.

“Why might it come in a week or not in a week?” he wanted to know.

Here, Aaron. Drink your coffee and get back with me later.

On Friday, it went like this: “Mom, I think my video will come on the 15th.”

“What day is that?” I asked him.

“It’s another Tuesday,” he told me.

Tuesday to Tuesday is a week, and Aaron was hanging on to that hope.

Saturday: “Mom, what time does the mail come?”

AHHHHHH!!! With another nebulous answer, Aaron just walked away in disgust.

He stood at the window later in the afternoon, eyes hopeful as he watched Gary remove the envelopes from our mailbox. Was that a package that Gary removed?

Yes! YES!!!! Dad had a package. Could it be?

I was thinking it BETTER be!!!

And yes, finally Aaron held his long awaited amazing Amazon package! He was all smiles…..but no more so than me! Inside was Charlie Daniels, Ronnie Milsap, AND 10.0 Earthquake!!!!

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Aaron asked if we could listen to Ronnie Milsap later while I fixed supper. I agreed. He stood in the kitchen for a song or two, but before I knew it he had gotten a dining room chair and perched himself in it as he listened.

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He was pretty cute sitting there happy as a lark, listening to every word of every song. He kept the CD holder close by, and at the end of each song he would look to see what the next song was.

“Mom, Smokey Mountain Rain is the next song!” he would announce, rubbing his hands together in delight.

Ronnie Milsap continued to croon during supper, with Aaron trying to hear every word and every note.

Of course, I watched the stellar Earthquake 10.0 movie with Aaron later. It was as awful as I knew it would be. Aaron yelled and clapped and had a great time. I endured.

“Mom!” he said at one point. “Your face doesn’t look like you like this movie!”

Sometimes his powers of observation are very acute. So I worked hard to rearrange my face and act interested. Aaron kept turning his head in my direction, matching the look on my face with my level of interest. 87 minutes. I was a far better actor than any of those unknowns on the screen, let me tell you. 87 minutes of fake interest should earn me an Oscar!

Well. Things should be a little more settled down here. The amazing Amazon package arrived….and in LESS than a week! We have fun new music to listen to, and I already checked off watching another lame movie so I don’t have to hear Aaron ask me every day about when I’m going to watch it with him.

Tomorrow Aaron has a doctor appointment in the afternoon. I will go to my Bible study in the morning, then come home to pick him up for our usual “Doctor Day Lunch Out.” I can hear it now.

“Mom, when will you go to Bible Study?”

“Mom, when will you be home?”

“Mom, where do you want to go eat?”

“Mom, what time is my doctor appointment?”

“Mom, what time did you say you’ll be home?”

“Mom, what time are we going to lunch?”

Another day…..another chance to enter Aaron’s world and to hope he can tolerate mine as well.

 

My Purpose

I don’t remember how long ago it was, but I do remember that I was having a very normal day. Nothing exciting. Nothing terribly interesting. Certainly nothing spectacular. One of those days that if asked, I would have a hard time really saying what I had done during that day. Not that I hadn’t accomplished anything, but what’s to talk about when it comes to errands, cleaning, laundry, and ironing?

In fact, that’s what I was doing when my phone rang. Ironing. Ironing Gary’s work clothes for the next day. My dear friend, Atha, was on the other end of the phone. I have to admit that when she asked what I was up to, I was a little hesitant to tell her. You see, Atha is Dr. Athalene McNay. She was working on starting her own business. She was a college and university professor. She never, ever made me feel inferior. She is one of my dearest encouragers and friends. It was my own self that made me hesitate before I just told her the truth. I told her I was ironing, feeling in my heart that somehow what I was doing sounded so mundane and boring and unprofessional compared to her life.

And dear Atha, who always lifted me up, said, “Patty, you are established in your purpose.”

I remember standing in that bedroom, overwhelmed by her simple statement. Suddenly I felt that ironing was pretty important after all. I told her how much I loved her words as I processed their significance in those few moments. I’ve never forgotten it. I think of it often. I relish what those words mean.

Established in my purpose.

I was surprised last week to walk out our back door and see our Forsythia bush in full bloom. It’s so early for it to be blooming, but we’ve had unusually mild weather for weeks now.   This past Saturday I pruned just the very top spindly limbs that were way too tall, but I left the beautiful blooms alone. This is the prettiest it’s bloomed in many years. We see it instantly when we walk out back. We can see it from the road behind our house. And when we drive up to our house, it and the other smaller one just jump out at us with their bright color from far away. Impressive. Satisfying to see. An instant draw.

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I’ve also thought of another bloom that caught my eye last year. I came out our front door one day and my eye was drawn down to a beautiful rose colored bloom. There it was, one lone Gerbera Daisy blooming while all the other plants were just green with no blooms in sight. It was just one little flower, it’s open side toward the house, all alone and hardly noticed. No one could see it from the road in front of the house, much less from far away. Some of its petals had fallen off, so it wasn’t even perfect. But I was drawn to that pretty little flower’s bright color every time I came outside. It cheered me and made me happy to see it. Its smallness didn’t diminish its beauty or its effect on me.

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The little daisy was as established in its purpose as is my big Forsythia bush. Both doing what they are intended to do…..bloom where they are, as they are, and to accomplish their purpose.

Established in their purpose.

Can I say the same? Can you? Do you know the purpose that God has for you?

I knew before I ever married that I desired to be at home with any children that God blessed me to have. I loved being able to do that! I loved home schooling them. I’ve always loved being able to keep our house running smoothly. And little did I know that God would give us Aaron, whom I still care for here at home. Atha knew that about me….knew my God-given desires and knew that I needed to know on that day the truth that she said. The truth that was a shot of encouragement in my veins.

I was established in my purpose.

I have to admit that my purpose doesn’t often seem very grand. I’m more like the small daisy, when many times I wish I could be a big bright Forsythia. We don’t like to admit it, but we all place a certain value on being big and bright and beautiful in the eyes of others. Being important and noticed. Making a splash.

Somehow ironing clothes doesn’t quite fit the bill.

But it fits the bill in God’s eyes, if that is part of the purpose that He has given me. All of us has a purpose. So let’s be established in it.

Like Paul said to Archippus: “See that you fulfill the ministry that you have received in the Lord.” (Colossians 4:18)

My established purpose is my ministry, whatever and wherever it is.

My wonderful friend Atha suffered a stroke in December. She is still in a rehab center as she recovers. It’s been a very difficult road. I plan to hold her hand soon and to tell her how her words have been impacting me once again. And to remind her that in the place she is now, as hard as it is, she has a purpose there.

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Be established in your purpose, Atha. God has a reason and a plan in all of this for you.

And I will remember, too, on so many levels, her words to me.

“Patty, you are established in your purpose.”

May all of us be just that!

Simple is Good

I can hear our Kansas wind outside blowing like crazy. We’ve had several days in a row of very strong winds, typical for flat Kansas. I can also walk by a mirror and see that I’ve been out in the wind as I look at my fly-away hair!! The winds remind me of living with Aaron in many ways. He’s like shifting winds most days. We never know what we’ll wake up to find with Aaron as far as his mood or his physical state or his general attitude.

Lately, though, he’s been mostly very happy. I wrote about that a couple blogs ago. It’s been fun for us to experience, and definitely a relief for the staff at his day group, I’m sure.

But I should have known that on the very next day after posting my happy blog, Aaron woke up in a mostly grouchy mood. Why does that happen? Anyway, he kept coming into the bathroom where I was putting on my makeup, fixing my hair, and doing all my getting ready things that morning.

“Mom, can you hurry?” he impatiently asked.

“Mom, why are you taking so long?”

“Mom, did you clean my glasses?”

“Mom, why aren’t you ready?”

I know that when he’s like this it’s better to mostly ignore him instead of returning his impatience, so that’s what I did. But not before I made one observation.

“Aaron,” I said. “You were so happy yesterday. So why are you angry this morning? What happened during the night?”

He just stood there and stared at me. I continued with my face preparation as he stared. Then he simply turned and walked out of the bathroom.

Soon he was back, of course.

“Well, All Star is boring!” he informed me. “I found that out during the night.”

It was really hard not to laugh. So that’s what he found out during the night? That All Star Sports, their activity for that day, was boring? Since when?!

Aaron went on to his day group and he had a reasonable day, from what I was told. I went in to his day group with him to talk to Barb about whether Aaron and I could take supper over to one of their residential homes on Friday. Aaron’s best friends, all girls, live there and he had been wanting to go back there again as we have done in the past. It cheered him up to have that planned at last. This was on Wednesday.

The next night, Thursday, Aaron had two hard seizures during the night. He stayed home on Friday, feeling crummy, but wondering over and over if we could still go to “Shawna’s house,” as he calls it. He insisted on going to get a few groceries with me, walking like a zombie through the store. He slept off and on during the day, but had no more seizures. We did take chicken enchiladas and No Bake Cookies to his friend’s house. I was so thankful that it worked out for Aaron to do that. He slept all the way there and most of the way home, but he had a good time at their house as we sat around the table, eating and talking. The girls had missed him that day at Paradigm, and they were so sweet…..rubbing his back and asking him how he felt. Each of them has significant special needs, so it’s just very touching to see them worry about Aaron.

Aaron was in bed a little after 8:00 that night, totally exhausted. But he kept coming back downstairs to be sure that it was OK for him to go to bed so early. It was fine with us, but not so much for Aaron and his rigid schedule. Bedtime is 10:00 or later!! Not 8:00!! But he slept for 12 hours and woke up a new person.

A very new person!!

Look at what Aaron did with Gary and I on Saturday.

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Aaron, who resists most work…..and definitely yard or garden work….actually got outside with us and helped!!

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And he helped happily!!

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He gathered up the big Crepe Myrtle limbs that I pruned, and he pulled up old tomato stakes with Gary in our garden.

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And Jackson supervised all of us.

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It was a really a pleasant afternoon, and a surprising one for us as we watched Aaron willingly help.

Simple pleasures mean the most to us. The warm sunshine, the fresh air, trying to find the pecking woodpecker we heard, laughing at Jackson encounter our neighbor’s trying-to-be-brave cat, and ending the day with a simple supper…..Wheel of Fortune and Blue Bloods…..and a couple games of Skip-Bo.

The older we get, the more we know that simple is good. Simple is better for Aaron. And the things that make him happiest inevitably do the same for us as well.

Fixing My Broken

 

I sit here at the kitchen table, one ear on the washing machine and the other on the baby monitor. Our washing machine was having some trouble two nights ago, so yesterday when Gary got home from work he opened up the back and got it all fixed. At least we hope it’s all fixed. That’s why I’m listening as it washes a second load this morning, wanting to be sure it’s working as it should.   A broken washing machine is no fun!

And my other ear is on the baby monitor because Aaron had two hard seizures last night. He’s been out of bed this morning, drinking his requisite three cups of coffee and then back to bed. He will sleep off and on today as he recovers. I’ll continue to listen for further seizures, which he often has during the day following his night episodes. Poor Aaron. He and I are still hoping to take supper over to Shawna and Aaron’s other friends at the house in which they live. He keeps asking if we can still go and I keep hoping that we can. Why do seizures have to so often mess up his fun times? It makes me sad for him. So in a sense a broken Aaron is no fun, either…..for him, certainly.

I don’t look at Aaron as broken, but I look at his seizures that way. They interrupt his life so often and so it breaks my heart for him. They break into his routine and into his plans, mess up his sleep and his following day, make his bitten tongue so sore, his head hurt, and all the rest that goes along with these awful things.

It makes me think about how we live among so much brokenness. There are so many broken issues and broken people all around us. Just this week I visited my dear friend, Atha, who is still struggling as she recovers from a stroke. Our friends in Texas, Steve and Dona, are working hard on his stroke recovery. Another friend’s son died from cancer early this morning. A friend is undergoing heart tests this morning. Our own daughter will soon have more medical tests run as her body continues to show a problem as yet unfound. Scrolling through Facebook…..looking at my prayer list……visiting with others on the phone or at lunch only confirms the deep hurts and problems that many are facing.

Our broken world is marred by sin, fractured back in the garden as Adam and Eve willfully disobeyed God. We and our world continue to bear the consequences of that sin in a universe imperfect now, not as God planned. But it’s not hopeless. Not at all. God made a way for each of us to come back to Him through His own Son. Jesus paid the price of sin, and for all who are called and respond to God through Jesus, there is life and hope.

God fixes our broken.

But we still have this life here, lived in broken bodies and in a broken world.

I watched Aaron on Sunday morning as he cut the Sunday coupons for me. This is his Sunday routine, performed faithfully for me as only Aaron does. In fact, he won’t let me come near the coupons with a pair of scissors because I don’t cut them correctly. Aaron cuts on the dotted line as best he can. Not near it. Not beside it. Not close to it. He cuts ON the dotted line.

Then he takes the little strips of paper that he has cut off and he meticulously snips them into tiny pieces as he holds the strip over his special trash can that’s just for that purpose and no other. It takes lots more time than necessary, but he doesn’t care about that. He has always, and will always, clip coupons and paper strips in this fashion. It’s very fascinating to watch.

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After the coupon is cut, he slowly and methodically places it into the coupon box. He doesn’t just toss it in. He slowly and carefully puts each coupon in its position, all neat and orderly. Look at the coupon box from this past week.

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As I think of the brokenness of life and of our world this morning, I’m reminded that for believers God is much like Aaron as he clips my coupons. God is full of purpose and planning for my life. He carefully cuts, always ON the dotted line, and He puts events and people and order into my life in the exact way that He knows is best. He is structured and precise as He takes each individual element of my life and places it exactly where it needs to be. His timing is perfect. His placement is always on spot. I may not understand it all. I may not like it all. But I know the One Who is doing the clipping and the snipping and the placement of each single area of my life, and of those I love.

And I know that I can fully trust Him to do it right. It’s called sovereignty.

“The Lord will accomplish what concerns me; Your lovingkindness , O Lord, is everlasting. Do not forsake the works of Your hands.” Psalm 138:8

Someday, maybe not until heaven, I’ll be able to open that box that holds my life events. I’ll see it all together, clearly, and I know that I’ll see order. I’ll see the plan of God. I’ll see each piece of my life put down just where and how God wanted it, always for my good and for His praise.

Even when I mess it up, God brings order back into it as I allow Him to do that. He loves me that much, like the verse above says.

So I’ll let God do the clipping, even when I don’t understand it or even agree with all of it. Because I know I can depend on Him to do it right, every single part and piece.

He keeps His ear on us, and He fixes our broken. He’s the only One Who can.

Too Often Unsung

I’m about to make somebody very uncomfortable today. That’s not my intention at all. But I know this somebody very well and I know that this will be the result of what I am writing. This somebody is my husband…..my friend…..my Gary. It’s not his birthday. It’s not even our anniversary. I just want to give a big thumbs up to this man who does so much for me and for our family. He doesn’t like lots of attention. Sorry, dear.

I watched him spend hours…..HOURS…..this past weekend on my blog. He tried to fix the problems with my old blog. It took forever! He finally realized that there was no way to go forward with it, so then he dug in and got me started on this new blog site. It took lots of work to get it up and running, and to understand all the in’s and out’s of it. I still have questions, but it’s so nice to know that I can go to him for answers or that we can work it out together. And all of this work he did while he was coming down with the respiratory crud that his co-workers so kindly shared with him.

This little venture of mine…..this blogging and writing that I love….is important to him as well. I can’t express what that means to me. Yet what I do has always been important to him. He has worked hard in both the military and civilian world to make it possible for me to be where I desired to be – at home with our children. He supported me in our many years of home schooling. And he supports me now as I continue to be with Aaron. WE continue to be with Aaron. I couldn’t do it all without Gary.

He’s a loving husband, appreciative and kind.

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He’s also a very hard worker at home.

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And always has been…..and continues to be…..a fabulous dad.

To Aaron:

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To Andrea:

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To Andrew:

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I am very blessed, and I am very thankful, for this man in my life. I just hope he still speaks to me after he sees this.   🙂

I love you, Gary!

 

 

 

Happy, Giving Aaron!

I wanted to write a quick blog tonight in order to test my new blog site. I have switched to WordPress now for blogging since I was having so much trouble with Blogspot. Gary couldn’t fix the problems, and if he can’t fix them they can’t be fixed.  That’s a mouthful, but it’s true. Anyway, more about all that in another blog. I just want to test my new site tonight. Bear with me as I work out the kinks. Who am I kidding?! Bear with me as Gary works out the kinks and I sit beside him wringing my hands. 🙂

I have to say something about Aaron, though, right? He has been so happy lately!! I’m almost afraid to say it! He’s just thriving in his friendships at Paradigm, his day group, and is enjoying doing what he loves to do the most…..giving. Here are some things he has recently taken from home, on three different days, to give to his friends.

His whale:

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His fluffy dog:

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His other stuffed dog:

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And today, along with the above dog, he took gum and green pepper slices that he shared. If he keeps up this giving, his room will be all clean!

He was also very happy that today was Shawna’s birthday, so with Barb’s help he made her a card at Paradigm and then signed it. That made him feel so good!

Today he also wore the necklace pen that Stephanie made for him last week. He loves it!

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If you want to have your day brightened, come with me sometime when I go to pick Aaron up from Paradigm at the end of the day. Today I just sat in the van watching the “kids” – who are really young adults – get in their various vans and cars as they left for the day. Many go to group homes and so ride together. In some ways, it’s heart breaking to see the van with wheelchair accommodations lifting some of Aaron’s friends up in the van for their ride home. It could also be sad to see the various special needs of the clients as they spill out of the building and mill around in the parking lot.

But if you get beyond that, you will see big smiles…..hear laughter…..and see friendships all over the place. Finally, out the door bounded Aaron. There was Yolanda coming behind him, holding her dog leash. I soon saw that the other end of the leash was around Aaron’s wrist and he was laughing up a storm. He came to the van with Yolanda following and holding the leash, opened the door, and just burst out laughing. Yolanda was laughing, too. She’s much older than Aaron but she had youthful delight on her face. Yolanda doesn’t hear, so in her difficult-to-understand speech she told Aaron goodbye and that she would see him tomorrow. He said, “OK!” and that was it. But he was, once again, so happy. It truly warmed my heart.

I remember when Aaron first went to a special needs school here in Wichita. After a few days there, he came home and said, “Mom? I notice something about that school. All the kids there have problems. What’s my problem?”

I didn’t know what to say as I tried to swallow the lump in my throat. But then I told him that he didn’t have problems. Yes, he had Epilepsy and Autism, I told him. But he didn’t have problems. He and all his friends were wonderful in their own right.

So that’s what I told myself today as I watched these amazing young adults with their limps and their unique looks and their wheelchairs and their……specialness! There are issues and there are concerns and there are so many things to think about with each one.

But each one is special and valuable. The problems they face put me to shame, but they live daily with their challenges.

I can learn a lot from them. I can learn a lot from Aaron.

As we drove away, Aaron started talking. Of course. And I listened, wondering what new thing he was about to teach me today.

Set Sail!

 

It’s a good thing that I looked in the cabinet this morning, checking on a key ingredient that I needed for my chicken dish that we’ll eat for tonight’s supper.  I thought I had plenty but I didn’t, so I quickly added it to my short grocery list and was able to stop at the store later to pick it up.  Being prepared is important!

 

This small episode fit perfectly with what I read this morning during my quiet time.  I actually learned a new word…..a Greek word.  Well, most Greek words are new to me, but this particular word made a huge impression on me.  I hope it will do the same for you.  The word?

 

Pleroma.

 

Impressed yet?  Hang on.

 

Pleroma was part of the ancient world’s shipping vocabulary.  It has to do with being complete or being full.  Here is what Raymond Brown says about pleroma in his book The Message of Nehemiah:

 

            Pleroma….described the ship’s complement.  Before leaving port the vessel was carefully checked to ensure that there was an adequate crew and that the cargo included sufficient food, drink, medical supplies, spare cloth to replace torn sails, ropes, in fact everything necessary for its journey.  That was the ship’s complement or completeness. 

 

A departing ship today, and especially in ancient times, definitely had to be careful to have all necessary supplies before sailing.  No ship would leave for a journey until it was filled with supplies….filled with all it needed for the time on the open sea.
OK, so why was this word such a blessing to me today?  And why do I pray that it’s a huge blessing to each of you reading this as well?

 

Because pleroma is the word that John uses in John 1:16.  “For of His fullness (pleroma) we have all received, and grace upon grace.”  Again, Raymond Brown says:

 

            John’s Gospel began by assuring its Christian readers that, however great the pressures of life, all their needs would be met out of the abundant completeness and inexhaustible sufficiency of Christ.

 

You see, God doesn’t push His children out on life’s voyage without preparation.  Just like a ship being loaded up in the dock before setting sail, so God loads us up with all that we need for the ride that is ahead of us.  We don’t even know that He’s doing all that work on us most of the time.  All the equipping and the completing comes as we live day by day, getting to know Him better through His Word and through the growth that comes with each new trusting time in our lives.

 

Then the waves come crashing in and the journey is long.  The ocean is big and scary.  Don’t think that when you’re slammed in the face with an unexpected trial, God didn’t know beforehand that it would come.  He knew.  He in His sovereignty ordained and allowed it.  But not before He prepared you for it.  God completed you, and is still completing you, with all that you need for the rough waters all around you.

 

Pleroma!!

 

Grace upon grace.  Unmerited favor from God, over and over again.

 

Blessing upon blessing as we sail through the waters and as we experience God’s complete provision for all we need, before we even knew we needed it.

 

God prepared you, and me, for every single event in our lives before we needed it.  And He then stacks grace upon grace as we live through the tough times…..blessing upon blessing…..growth upon growth.

 

God loves His children.  He’s a good God.  He would never leave us incomplete, lacking what we need.

 

He alone is really all we need.

 

So even when we don’t understand our situations….or don’t like them….or are hurting….afraid….turned upside down….

 

Pleroma!

 

You are complete.  You are filled.  You are ready to sail!

 

Trust your Captain.  He’s got your course all charted, and He’s got you more equipped than you realize.

 

Of His fullness we have all received.

 

You Might Live With Autism If….

 

Here are a few snippets of life with Aaron from the past few days – otherwise known as:

 

You might live with autism if:

 

·       You poor one cup of coffee for Aaron, knowing that he always has three cups.  You tell him that you are brewing more coffee and will pour his other two cups when the fresh coffee is ready.  But he won’t let you take the one cup to his room until the other two are poured and ready to go.  You don’t take ONE cup of coffee to his room…..ever!  You take THREE cups!!

 

 

 

·       You hand him a piece of sausage that he wanted in a napkin, to be eaten similar to a cookie.  Silly you!  Sausage goes on a plate, not in a napkin.  You just do it with no argument, because you know that arguing about these critical matters is useless.

 

 

 

·       Aaron has watched four seasons of The XFiles.  For Christmas he received the remaining five seasons.  He decided to finish watching The XFiles, but instead of starting with season five, he is going to start watching from the beginning – again.  You try to talk him into just starting with season five since he’s already watched the first four and he seems to agree, but later walks back into the room, obviously in discomfort.  You give your blessing to him starting with season one, despite how long it will take now to watch the entire series….because you know he’ll do it that way anyway.  So you may as well remove the burden from his shoulders and let him fully enjoy the ENTIRE series, watched the way he wants….all together the way they should be.

 

 

 

·       Aaron had a couple seizures during the night, so on Saturday he was very tired.  He decided to lay back down later in the morning.  Then you have this conversation:

 

Aaron – Will you get me up?

 

Me – Sure.  What time do you want up?

 

Aaron – Before 1:00

 

Me – OK, I’ll get you up before 1:00.

 

Aaron – What time is that?

 

Me – I don’t know.  Just sometime before 1:00.  What time do you want that to be?

 

Aaron – I know!  Get me up at 1:00.

 

Bedroom door closes.

 

Bedroom door opens.

 

Aaron – How about 12:30?

 

Me – 12:30?  Are you sure?

 

Aaron – No.  Let’s do 1:00.

 

Trust me.  I got him up at 1:00.  Not 12:59.  Not 1:01. 

 

1:00!!

 

 

 

·       Aaron has a bad headache after having seizures.  While we changed his sheets, because it was Saturday and we always change sheets on Saturday, I asked him how his head was feeling.  He told me it still hurt, so I made a sound of concern.  You know, a soft murmuring sound…..mmmm.  Aaron’s response:  “You’re weird, Mom.”  He doesn’t appreciate soft murmuring sounds of concern….or crying…..or most hand gestures…..

 

 

 

You might live with autism if:

 

·       You go on a walk with Aaron and he finds a “thorn seed pod,” as he calls it, and he carries it proudly home.  It is given a place in his room among all the other treasures he has found on walks, in stores, at his day group, etc.

 

 

 

·       You go on another walk and Aaron finds a feather this time, which he carries for the remainder of the walk, trying to feed it to our Great Dane…who has no interest in feathers that anywhere matches Aaron’s.

 

 

 

·       You go to the grocery store and as you look up from the self check-out register, you see Aaron sitting on the empty display shelf in the front of the store.  Smiling.  Content.  Not one bit embarrassed. 

 

Which is how I know I should be with Aaron, even after I say, “Let’s go, Aaron.”  And he answers with, “OK, babe!” 

 

“How come you say only Dad can call you babe?” he asks for the zillionth time. 

 

And for the zillionth time, I know that life will never be mundane or usual with Aaron. 

 

You might live with autism if:

 

·       You know it’s really all right that life will never be mundane or usual with Aaron.  Most of the time it’s fun.

 

 

 

·       You think of song titles at times like this.  Titles such as “I Like You, Babe.”

 

 

 

·       And thinking of what Aaron says, not all the time but most of the time, makes you smile.

 

 

 

 

 

 

Stuff It!

Several years ago I wrote this short piece about Aaron and the covers on his bed.

 

Helping Aaron change his sheets today reminded me once again of another characteristic of Aspergers – an insistence on sameness.  Aaron wants every wrinkle pulled out of his covers when we’re putting them on his bed, and there is one smaller blanket that must be centered.  Not only that, but he likes several blankets, in addition to his sheet, and they must be put on his bed in a particular order. 

 I remember once, several years ago, that as I helped him change his sheets I decided that there was a better order for the blankets to be put on the bed.  My order made it easier to tuck the sheet and blankets under the mattress.  So I matter-of-factly showed him my plan as I changed up his plan for the Order of the Covers.  He said he didn’t like it.  So very patiently I showed him again that my Order of the Covers was a good Order of the Covers.  The same covers were included as always but in a different order.  Aaron stood there pondering and the only word that he heard, as I would soon discover, was the word “different.”  Not the word “better” or the word “good,” but only the word “different” – which is not a favorite word of Aaron’s.  He complied with my plan at that time, and so we completed the bed making with the new Order of the Covers.  I trotted happily on my way without giving that exchange a further thought. 

 Until the next morning.  Aaron usually makes his bed before leaving the house, but something that next morning didn’t seem right about his bed and so I took a look.  AH HAH!!  After we had gone to bed the night before, Aaron got up and changed the Order of the Covers back to HIS Order of the Covers.  “Well, well, well,” I thought.  Two can play this game!  And I changed the Order of the Covers back to MY Order of the Covers.  HaHa!  That’ll show him!  Neither of us said a word that night before bed, but don’t you know that when I got up the next morning he had changed the Order of the Covers back to HIS Order of the Covers again?!  We went back and forth then for several days in our silent battle over the Order of the Covers.  Finally, though, I faced reality.  Did I really want to spend the rest of my life remaking his bed every morning?  Was this issue really worth that?  Nah, I didn’t think it was. 

 I conceded.  He won the Battle of the Order of the Covers.  Good grief, I may as well admit it.  He won the whole war! 

 

Well, as of last August Aaron has a newly painted room along with a new bedspread, new valence on his windows, new pictures on his walls….new, new, new!  I wrote about his insistence on keeping his books on the floor beside his bed, despite the NEW lined basket that I have in his night stand for just that purpose.  Aaron doesn’t really care about new lined baskets nearly as much as he cares about his routine of keeping his books and notebooks on the floor beside his bed in a tidy little row.  So just like I quit fighting the order of the covers, I also quit fighting the books on the floor. 

 
 
Now we have yet another war.  This one concerns his bedspread.  His nice new bedspread.  I noticed something funny about it one day as I helped him make his bed or change his sheets….I don’t remember.  But I do remember that something wasn’t right about his bedspread on one side.  I pulled and tugged, only to find that the whole right side was tucked in, like a sheet.  But you don’t tuck bedspreads in like you tuck in sheets. 

Aaron noticed me looking at the bedspread as I tried to figure out what was wrong with it. 

“Mom, I like stuffing it,” he said.

“Ah, stuffing it,” I replied as I began to understand what he had done.

“Yeah, I stuff it,” he went on.

Well, I proceeded to unstuff the bedspread as we made his bed.  I explained that we don’t tuck bedspreads in like we do sheets. 

“Why?” Aaron asked.

And I explained that bedspreads are made to hang down nicely, all smooth and pretty, and not be tucked in. 

“So I shouldn’t stuff it?” he asked.

“No,” I answered.  “You don’t stuff it.”

So you can guess that over the next few weeks I have often found that his bedspread has been stuffed.  I have then unstuffed it.  But at night, as he and I get his room ready for bed or maybe after I leave the room, he stuffs the bedspread again. 

The other night he saw me staring down at the stuffed bedspread once again.  I looked at him and didn’t have to say a word. 

“You don’t want me stuffing it, Mom?” he asked

“Right, Aaron,” I answered for the umpteenth time.  “You do not stuff your bedspread.”

“You mean you don’t want me stuffing it because you can’t see it?” he wanted to know.

And I told him it was something like that.  Explanations don’t matter one bit to Aaron, I have learned.  Pretty hanging bedspreads matter not at all to him, either.

So today I found once again that his bedspread had been stuffed.  I asked him to please tell me why he stuffed it.

“Well,” he began in all seriousness.  “I lean my feet against the side and they halfway come out under the blankets.”

Aaron doesn’t like his feet coming out halfway under the blankets.  I didn’t even bother to ask him what position he had to be in for this to happen.  I know that we are in another war and that Aaron will win this bedspread war as he also won the war of the order of the covers.

So now instead of saying, “Bring it on!!” – I say, “You know, it doesn’t really matter in the great scheme of things.”

I will make his bed the way I want it made on the days that I have the opportunity, but otherwise, stuffed it will be.

I’m just thankful that Aaron makes his bed, to one degree or another.  And maybe we’ll come to a compromise…..stuffed at night, unstuffed in the morning. 

A sleeping bag on top of his bed is sounding better all the time, actually.

Can You Be Sure?

Aaron had a seizure at 4:30 this morning.  It was around two minutes long, shorter than some but always too long.  No seizures at all is definitely preferred, but that doesn’t seem to be what God has planned for Aaron in his life.  His nocturnal seizures are why Gary and I still sleep with a baby monitor on our nightstand.  Aaron knows that I go into his room when I hear a seizure and that I’m there to help him as needed. 

Aaron got out of bed around 7:00.  I would need to look in his log book that he keeps to see the exact time. 

OK, I just snuck in his room and took a peek.  He wrote down his getting out of bed time as 7:02.  Isn’t he funny and amazing?

He drank his three cups of coffee, as always…..and he bugged me about a fourth cup, as always.  He said his head hurt, too, as always it does after a seizure.  I can only imagine.

And as always after a seizure, he decided to go back to bed.  He told me his plan, but he wasn’t forgetting about that fourth cup of coffee.

“Can I have a fourth cup when I get out of bed?” he hopefully asked.  And I gave him some hope that he could.  He has no idea what all I would gladly do for him on these seizure days.  I try not to show my hurting heart generosity too much, either, because good old Aaron will jump on that like a tick on a dog.  Forget the fourth cup of coffee!  Let’s go for five or six!

After Aaron had the assurance that a fourth cup of coffee was a real possibility, he started to walk away.  But he came back to the top of the stairs, one more request on his mind.

“Can you make sure I don’t have another seizure in bed?” he asked me.

Oh, if only I could!  I might have to think about granting a fourth cup of coffee, but if I could grant that my son have no more seizures then I would do it in a flash. 

I knew what Aaron meant.  I try to get him to express himself more clearly, so I asked him how I was supposed to do that.

“Can you hear if I do?” he clarified.

“Yes, I’ll hear if you do,” I answered.  I assured him that I had the baby monitor on right beside me and that I would be listening.  He was satisfied with my answer and with the knowledge that Mom was keeping her ear open, so off he went to bed. 

It’s sad to see that Aaron shows this fear of having a seizure.  I don’t blame him one single bit.  He doesn’t remember the seizures, but he’s seen friends at his day group have them and so now he knows what they look like.  And he certainly knows what they feel like when he wakes up with a bad headache, sometimes a bitten tongue, losing his sense of taste, and other complications.  It’s a very hard thing to see your child endure this.  Harder still to see your usually unexpressive adult child begin to verbalize his fears. 

Victory in the verbalization…..sadness in the expressed reality.

I am Aaron’s strength right now.  I am his comfort and his hope.  Me….and the baby monitor.  Aaron is depending on us to be there for him and to help him if he has another scary seizure.

This morning I had planned to write about Nehemiah and the guarantee that he gave the children of Israel as they built the wall of Jerusalem.  I didn’t know I would have this illustration from Aaron.  I would rather not have it.  I would rather use another example from some other scenario in my own life that doesn’t involve him.  But this is where God has us.  This is His sovereign plan, one that I trust even when it hurts.

The Jewish people were rebuilding the wall of Jerusalem, but there were enemies who didn’t want them to succeed.  These enemies used words of discouragement and ridicule, but when they saw that the Israelites were serious about rebuilding the wall they changed their tactic.  The enemies became intimidating, threatening to kill not only the workers but their families as well. 

The Jews became scared.  The enemies’ threats were working.  In Nehemiah 4:10, it was said that the worker’s strength was failing.  That word, “failing,” meant to stumble or totter.  The workers were literally tottering under not only the physical work they were doing, but especially they were stumbling emotionally and spiritually under the continued threats they were facing from their enemies. 

They were scared.  And in verse 14, Nehemiah said that when he saw their fear he spoke to them….to the nobles, the officials, and to all the people who were so afraid.  Here’s what he said:

“Do not be afraid of them!  Remember the Lord Who is great and awesome, and fight…..”

This verse has been on my mind for a couple weeks now.  I’ve had some fears and concerns in my life.  Health issues for Aaron, for Andrea, for Gary.  Aaron’s behaviors that impact him and us so much.  Andrew adjusting to a difficult new job.  So many other things that jump around in my brain during the dark night hours when I’m unable to sleep…..

I could name fears that I know so many of our friends are experiencing.  Life has changed in a moment for some.  Then there’s the continuing impact of those changes.  Strokes….dementia…..upcoming surgeries…..serious infections…..the diagnosis of a child with a potentially life changing syndrome…..ongoing multiple children with special needs….exhaustion…..job uncertainties…..

Our life stresses are like the enemies of the Jews in Nehemiah.  They surround us, threatening us with their potential or certain life changes.  We sometimes stumble under the burden of it all.  Fear is very debilitating.  Our mind goes places it shouldn’t but it’s so hard to keep from doing that.

This is why Nehemiah’s words have meant so much to me lately.  I need to refocus my focus.  I need to choose what I allow my mind to dwell upon.  The answer is simple, but difficult, because the enemy wants me to stay glued to my fears and my worries…..both the known and the unknown.

But…..REMEMBER!!

Remember the Lord!!

The Lord Who is GREAT and Who is AWESOME!!

God’s got this….all of this.  Whatever the enemy is throwing at us, whatever we see around us, whatever we hear in our head in the dark of the night….is NOT what we are to remember or to dwell upon.

Our God is great and He is awesome.  The battle is His, not mine! 

And so I fight, but I’m not the one fighting.  I am allowing God to fight for me as I pray and give Him my battles and my fear and my worries.  When I feel that familiar fear being thrown at me from the enemy outside the walls of trust, I remember and I remind myself that God is the One Who will fight for me.

The Lord Who is GREAT!

The Lord Who is AWESOME!

I’ll hear you and I’ll be there if you have another seizure, Aaron.

“Can you be sure?” he asked.  “Yes.  I’ll be sure,” I answer.

I’ll hear you and I’ll be there in your fears, God says to me.  

“Can you be sure?” I ask.  “Yes.  I’ll be sure,” He answers.

“Our God will fight for us!”  (Nehemiah 4:20)

Remember!  The Lord!