Category: Adult Autism

Seeing BIG!

Last Friday evening, a good old Kansas thunderstorm was trying to blow in from the west.

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By the time we were getting ready for bed, the winds were kicking up and the lightning was really flashing.  Aaron, who loves storms…especially nighttime storms…was very excited at the prospect of a lightning show, seen clearly from his upstairs westward facing windows. 

“Mom, I want to keep my blinds open,” he informed me as we went through his bedtime routine.  I knew he would want to do this.  Every time we have a storm when it’s time for bed…or the prospect of a storm during the night…Aaron wants to keep his blinds open so that he can see the lightning in all its bright glory.

I’m glad that he’s not scared.  In fact, I join Aaron in his love of watching lightning.  That’s why, after I told him goodnight, I went straight to the bedroom on the other end of the hall.  We still call this room “Andrea’s room,” even though she hasn’t lived here for years. 

I stood at the windows there, in the dark, enjoying the gorgeous light show at this perfect vantage point.  I was actually having a little worship service right there.  Seeing God’s power displayed like this in nature makes me feel so small as I’m reminded of how big God is.

I was also reminded of a time several years ago when Gary and I were going through some deep waters.  God drew me to Isaiah 40 one morning.  Reading of God’s might in creation really soothed my heart.  Isaiah said that the nations are like a drop in a bucket…we are like grasshoppers…that God stretches the heavens like a curtain…and that He created the stars and calls them by name.

A God with that much power and that much care over creation and over our affairs is surely a God big enough to handle my little problems that seemed huge to me!

These truths were going through my mind as I watched the lightning at Andrea’s windows and as I thanked God for His love and His power.  But soon my private viewing of this storm was interrupted.  I heard Aaron’s bedroom door open. 

“Mom?” he asked as I heard his bare feet padding up the hall.

“I’m in here, Aaron,” I answered.  “I’m watching the lightning.”

“Mom!!” he exclaimed as he joined me at the windows.  “I saw it BIG!!”

So there we stood, side by side, watching each streak and each flash of lightning.  Some were muted, but still beautiful.  Then would come a huge burst of light, sometimes with jagged bolts, so bright it actually made us squint our eyes. 

“There’s a BIG one!!”  Aaron would say loudly as he rubbed his hands together and laughed.

Soon he was back in his bed for the rest of the storm, his blinds pushed up so that he could fully see and enjoy each bright burst of lightning.

I’ve thought a lot since that night about what Aaron saw and what he said.  The lightning, so bright and stunning, was indeed impressive.  No wonder Aaron couldn’t just lie in his bed, looking through his windows.  No wonder he wanted to keep his blinds open so that he could fully see each flash.  No wonder he just HAD to find me and to share his excitement.

“I saw it BIG!!”

I want to see God like that in my life.  I want to see Him BIG, but not to just expect His bigness to be demonstrated in BIG events.

It’s like the lightning.  God didn’t only create the huge flashes of light.  He also created the softer, smaller bursts of light…even though they weren’t as impressive as the big and bold displays.  All of God was in all the varying degrees of lightning that night. 

I admit that I love the times when God is big and evident in my life.  And don’t the huge answers to prayer…the “just perfect” verse for the hard times…the miraculous displays of His power…knock our socks off and give amazing testimony to His provision in our lives?

But so do the smaller events…the still, quiet voice…like the little storm cloud that Elijah saw on the horizon, the one that turned into a huge storm.  Or later, how God spoke to Elijah – but not in the strong wind, not in the earthquake, not in the fire.  God chose that day to speak to Elijah in a gentle blowing, a soft whisper.  But  God’s power was just the same in the softness and smallness as it was at other louder and bigger times.  The same God Who sent fire from heaven to consume Elijah’s sacrifice was the God Who also spoke to his servant in a whisper.

On my birthday last month, I found myself sad instead of happy.  It wasn’t anyone’s fault.  Nothing bad had happened.  I just missed Andrea and Kyle, and Andrew, and extended family.  I don’t particularly enjoy holidays and special days for that reason.  But instead of feeling God’s presence, I was allowing my birthday party to be a pity party instead. 

I walked into Bath and Body Works to pick up some soaps.  I always shop with a coupon.  My mantra is “It was on sale and I had a coupon!”  Just ask my kids.  Anyway, I had no coupon because I had used mine a couple weeks earlier.  I sighed, bit the bullet, and went inside to shop.  My “no coupon” situation further amplified my sad day.  Silly, I know, but that was where I was on that morning.

All of a sudden, a stranger walked up to me.  She held out a coupon and asked me if I could use it.  She said she had no need for it.  I was so amazed!  Such a simple act, but one that clearly touched my sad heart.  I thanked her profusely, and then I told her that this day was my birthday.  She was so delighted to hear that!  She wished me a very happy birthday as she handed me the coupon and walked away.  And my heart was lighter.  I thanked the Lord as I drove home for that very sweet show of love for me in that moment…both the love shown by a stranger…and the love shown to me by my Heavenly Father.  For I knew, in that very common and small gesture, that God was reminding me of His love and care for me.

I saw Him BIG in that little act!

Sometimes God shows Himself big here at home, in common events that I often see.  Yet what I don’t always see is the bright touch of God.  The commonplace can all too often hide God’s touch…not because God isn’t showing Himself to be there…but because I too often keep the blinds of my heart closed.  I just don’t pay attention to what He is wanting me to see.

Aaron had a seizure at the supper table one recent night.  Gary and I had worked all day on projects around the house.  We were both dirty and tired, especially Gary.  When Aaron suddenly started seizing, Gary immediately went to his side and held him so that he wouldn’t fall out of the chair.  Thankfully, Aaron was safe.  As he came out of the seizure and was more aware of his surroundings, Gary knelt down by Aaron’s chair and just talked to him.  The look in Aaron’s eyes as he looked into Gary’s eyes was just precious.  I snapped this picture.

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As I have looked at it, I realize that right there was God’s big love shining out of Gary to his son.  I am so thankful for this husband who walks beside me in life, and who also kneels down to care for our Aaron. 

And also grateful that I looked through the open windows of my heart, blinds up, and saw what I know God wanted me to see.  His power and love was shining through Gary to Aaron, and also to me.  What a gift, all too often taken for granted!  Just like the Kansas storms that we get accustomed to seeing and hearing, so I can get accustomed to the care of this good man that God has given me. 

Oh God, may I “see it BIG,” every day.  May I see YOU…BIG…in the joys and the sorrows; in the small and the large; in the friend and the stranger; in the familiar and the new; in the mundane and the unique; and in our home, all around me, every day.   

 

The Sprinkler Rainbow

“MOM!!”  Aaron yelled one evening not long ago as he rushed into the house.  “Come look at what Dad and I saw in the sprinkler!!”

It was just after supper and I was busy cleaning the kitchen as my mind was skipping to the next thing I needed to do.  That next thing was NOT to drop what I was doing and go outside to look in the sprinkler. 

Aaron commonly does this to us…insisting that we come here or go there or look at that in order to see or hear something that to him is just amazing…and to us is often not. 

Yet we have also learned, over our years of life with Aaron, two important lessons.  One is that taking the time to see what Aaron sees is sometimes a source of great joy and wonder and fun.  We might miss something fantastic if we don’t stop to look when Aaron says to stop and look.

And number two is that if we don’t just go ahead and listen and look, we will not have peace until we have heard and seen whatever in the world it is that Aaron is hearing and observing.  The price of peace is certainly worth a look and a listen.

So outside I went, following Aaron as he led the way through the garage and out to the front yard. 

“LOOK!!!” he exclaimed as he pointed toward the spraying water.  “A RAINBOW!!!”

I obediently looked, and sure enough…there through the mist…was a rainbow.

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Now I’ve seen rainbows in the water’s spray before as the sun shines on the droplets just right.  I’ve seen sprinkler rainbows lots of times.  But seeing the colorful prism through Aaron’s excited vision made that rainbow a very special sight indeed!

The moment was so sweet and brought a huge smile to my tired face.  Plus knowing that Gary had shared the discovery of that rainbow with Aaron, full of the facts surrounding the reasons why there even was a rainbow, brought me extra joy.  It was very well worth the extra minutes out of my day.

This past week I had what my good friend, Atha, would have called the “mulligrubs.”  That’s a real word, by the way.  It’s an old word for being down…on the sad side…having the gloomies.  Atha always understood me and I understood her, and we both understood those old down moments…or days.  Atha doesn’t have the mulligrubs anymore because she’s in heaven, but I’m still here on this earth where I sometimes battle the mulligrubs.

There are several reasons why I was gloomy last week, none of which are particularly important.  What’s important is that I was letting my emotions, my worries, and my stresses get the best of me.  Even my prayers seemed to bounce off the ceiling, not going very far, and this definitely left me feeling even worse.

God talked to me in my gloom, though, and reminded me of what Paul said to Timothy about contentment.  He said that godliness…WITH contentment…is great gain.  But how to be content?  Especially how to be content when the tendency of my heart in those moments…or days…is quite the opposite.  That’s because my focus was on ME…not on God…and not on what God was trying to get me to see.

But God, ever patient, reminded me of another truth.  It’s found in Psalm 50:23 and says, “He who offers a sacrifice of thanksgiving honors Me.”  This concept is nothing new, to me or to you, but I am ever amazed at how being thankful can quickly become buried under all my “me stuff.” 

It’s like me in the kitchen the evening that Aaron saw the sprinkler rainbow.  I was focused on the task at hand, and then the next task, and the next, and the next…becoming overwhelmed with all I had to DO.  But stopping to listen to Aaron, to follow him outside, and to observe the pretty rainbow added a splash of joy that I needed that day, even though I didn’t think I did.  I had to stop…to take the time…to really SEE what needed to be seen.

A sacrifice. 

A sacrifice is not only something that I give, but a sacrifice should cost me something.  Otherwise, it’s not really a sacrifice in the true sense of the word.

So what does a sacrifice of thanksgiving cost…to me?

A sacrifice of thanksgiving costs me…me.

It means I lay “me” aside and I dwell on other things for awhile…or other people…or other situations. 

It means I sacrifice myself in order that I may focus on God’s good gifts that are all around me.  When the going gets tough, and the burdens are heavy, and the heart is lonely, and the concerns are just too much…then is when I need to follow God outside of all that, and to look through His eyes at what is around me.

Through the mist that might obscure my vision, if I just stop and look, I’ll see a rainbow.  Splashes of God’s blessings and color all around me.

I have a loving heavenly Father…a house…food…eyes to see…ears to hear…clothes to wear…a car to drive…flowers that bloom (at least some of them!)…a faithful and hard working husband…hands and legs and hair on my head (even on my all-too-often bad hair days!)…our sweet new friend, Jess, at Subway – who remembers Aaron and just gave him some money for Chubby, his stuffed piggy bank…and Aaron!

Aaron…who consumes my time and concerns my heart and confuses my plans and convicts me that God is very real and very present in our lives. 

Aaron…who showed me the rainbow in the sprinkler, and once again helped me to also see God. 

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Feeling The Lines

Aaron walked into the kitchen the other night and my eyes were drawn to his feet.  Why?  Because this is what I saw.

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I poked Gary with my hand and motioned for him to look, and then we both stifled our laughter.

“Aaron?” I asked.  “Why are you wearing your slipper socks that way?”

“Because I get tired of feeling the lines,” he answered, matter-of-factly.

Who cares about the safety factor of non-skid lines NOT being on the bottom of your feet where they belong, right?  Comfort was most important to Aaron, as it always is…not safety, and certainly not style.

Comfort in areas other than clothing is also very necessary to Aaron.  However, these “other” areas are sometimes a mystery to us.  Or they are areas in which we know Aaron struggles because of his autism but are also situations over which we have no control.  And, I might add, over which Aaron has no control.  No matter how much we wish he did, or think he certainly could or should, he just doesn’t have the ability to corral his emotions and frustrations like a typical person does.

Here’s an example:  Aaron and I were recently in Longhorn Steakhouse for lunch before one of his doctor appointments.  There was a table near us where several businessmen sat.  They were having a normal conversation, but one of the men in particular was rather loud.  When his animated voice was combined with the normal give and take of the other men, their voices at times overtook our area.

I saw Aaron’s eyes dart over to their table several times.  Soon I knew that Aaron was bothered by the sound of their talking, especially the louder man.  They would talk, and laugh, and talk and laugh some more.  Finally, Aaron was downright staring at them, so I told him to stop doing that.

“Why do I need to stop?” he asked.

“Because you need to mind your own business,” I told him.

“How can I mind my own business?!” he impatiently answered.  “They’re talking and laughing!  I can’t stand it!!”

I was proud of Aaron for verbalizing his feelings to me.  I was also nervous that he would tell those men to be quiet, as he has done in other situations.  But he didn’t do that, thankfully, and I was able to keep him engaged in our own conversation about movies and aliens and other subjects that were far more valuable to him than all that silly, loud business talk!

Sometimes the slightest nuances can trigger Aaron.  Sometimes what triggered him yesterday might not trigger him today.  Or what upset him today is something that he laughed at yesterday.  We just never totally know or can predict with accuracy when his anger will erupt…or simmer.

This is one of the very most difficult parental aspects of raising a child…or having an adult…with the behavior issues associated with autism.  And even when you have had smooth sailing for a while, a storm can always be on the near horizon.

Another example:  Last week Aaron got out of bed and came into the kitchen.  I don’t remember what I said or did, but I think I told him good morning and I said it with a face that was a little more alert and happy than Aaron wanted at that moment.

He looked at me with bleary eyes, no expression at all, and then flatly said, “I wanted a normal face.”

And I knew, as well as I knew that the sun was shining outside, that Aaron was very irritated.  I mean, it was really pretty funny that he wanted a “normal face.”  But I know him well and I knew that if I laughed then I would be in for a very rough morning.

So I just turned away…and therefore he couldn’t see my rolling eyes and my smile…and I made no comment.  Sometimes silence…my silence…is definitely golden.

But my silence was also to him, at that moment, a cause for further frustration.

“How about if I tell Sarah about your face?!” he said with challenge in his voice.

Sarah is one of the staff at his day group.  Aaron thought that I would not like him to tell Sarah about my abnormal morning face.

Oh, Aaron!  Here we go, I thought.  So I poured his coffee and escaped to my shower, door closed on both Aaron and his unpredictable anger.  Thankfully, by the time I was ready to go a while later, he was over his mad spell and all was well.  Plus, I don’t think Sarah ever knew about my weird face…but if she did, I’m sure she smiled behind Aaron’s back as well.

My friend, Wendy, texted me yesterday about her particularly rough time with their Elijah the night before.  She went to see a play that her other children were in.

“I thought I had my props ready, the stage set, E primed and ready for our outing…but oh, no.  It couldn’t be that easy.”

She went on to tell me that he wanted to take his hot chips and his balls into the theater, how he ran in front of a car, how he sat and very loudly crunched his chips, and how humiliated she was.

How I wanted to hug my friend!!  How well I understand how she felt!!

We have had those terribly embarrassing and difficult moments with Aaron over the years.  In fact, when Aaron attended the day school here for special needs students, we got a phone call one night from his amazing teacher.  Mr. Z told us that Aaron had won the Student of the Week award for best exemplifying the classes’ word of the week, which I believe was “patience.”  He told us that Aaron would receive the award the next day, and that he just wanted us to know about it before it happened.

Gary and I were amazed and thrilled!!!  I felt like Aaron had won a Nobel prize!!  I hurried down to the family room to tell Andrea and Andrew.

“Guys!!!” I excitedly started.  “Aaron is winning the Student of the Week award tomorrow!!!  Guess what the word of the week is?!!”

And without skipping even a beat, Andrea answered, “Hateful?”

We laughed and laughed and laughed.  Of course, Aaron wasn’t there to hear any of this.  But really, that was a true question.  Andrea and Andrew had endured many experiences like Wendy described with Elijah.

At times, Aaron and Elijah just cannot stand to “feel the lines.”  None of the rest of us mind the lines at all.  In fact, we don’t even see the lines.  But our boys do…and so do many, many others who struggle with the issues of autism, be it noises or lights or people or social situations or food or any one of dozens of other frustrating cues that only they see and feel.

So, if you’re out somewhere and you see a meltdown happening, and you see a desperate and exhausted parent, and very humiliated siblings – please don’t assume that this eruption is a result of bad parenting.  Don’t assume anything.  Just give a smile, lend a hand if needed or possible, show some understanding instead of judgment, and pray for that family as you walk away.

And know that in that paralyzing moment of public shame, every parent would look at you and say with Aaron:

“I just wanted a normal face.”

 

 

 

 

True, Special Friends

Aaron attends a special needs day group on Monday through Friday.  This day group, Paradigm, has clients of various ages – all adults – that have a variety of special needs.  They are out in the community nearly every day attending a host of different events and activities. 

Aaron has developed friendships there over the years.  Like any group that is together as often as they are, there are ups and down.  Then you throw in the special needs, medicines and side effects of medicines, behavior issues, lack of filters, and so much more – and there can be plenty of noise and drama and action. 

But there is something else I have seen there that is very touching.  I have seen empathy for each other.  I have seen real caring.  And I have seen forgiveness.

Aaron is in a very good place right now with his behaviors.  He has, in the past, struggled with anger and has had eruptions because of his lack of control.  He has come home with broken glasses, broken watches, ripped clothes, and many tears…his not being the only tears, for sure.  So while he is still loud in his playfulness, and loud in his talking, and loud and sometimes inappropriate in his teasing – he is basically very happy and helpful. 

When he was having behavior issues at Paradigm, there were very many times when it was his friends who warmly welcomed him back the next day.  He may have hit one of them, or insulted them, or yelled at them…but they would warmly tell him that it was all right, that it was a new day, and that they still liked him. 

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When he would have a rough day, he wouldn’t want to go back to Paradigm the next day.  Almost always, though, with our encouragement he would return.  I remember times when he would want me to walk into the center with him, as if my presence would buffer him from either being rejected or from bolting back out the door before he faced his friends again.

I would hear his friends call out to him.  “Hey, Aaron!” one would say, and then another.  I was just amazed at their forgiveness and their fresh start as they helped Aaron pick up the pieces and have the courage to face them again. 

Once I walked with Aaron over to a table filled with his best friends…all girls, by the way.  😊  Aaron was very nervous about talking to them after whatever had happened the previous day, but they spoke to him as if nothing had happened at all.

Aaron’s eyes filled with tears as they darted around the table, afraid to make contact. 

“I told Mom I was afraid you wouldn’t like me,” he finally said, his voice trembling and thick with emotion.

He was so like a child, this adult man.

“We like you, Aaron,” one of the girls said.  And they all said those same words as they affirmed to Aaron that he was their friend.  What wasn’t voiced, but was as clear as the morning sun, was that they understood Aaron, and they loved and accepted him just the way he was.

Aaron has made huge strides in learning to accept his friends there, as well, on many different levels.  He is sometimes curious about their physical handicaps…wheelchairs, muscle issues, deafness, seizures, etc.

He has seen many behaviors that are disruptive, loud, angry, and irritating.  And other behaviors that are just very unique – the young man who wears a suit and tie every single day, or the one who keeps a towel around his neck, or the person who rocks – and so many, many more. 

He has been curious about those who can’t hear or who can’t talk well.  About those from different ethnic backgrounds.  Or ones who are from different countries.

“Mom!” he said one day.  “Giselda said she was sorry in a Mexican way!” 

What is very sweet to me is to see how this setting is now so very normal to Aaron.  I hope that makes sense.  We might walk into Paradigm and see special needs.  Aaron walks into Paradigm and sees friends.

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Not long ago, as Aaron and I stood at the card counter trying to pick out a greeting card, Aaron remembered that he wanted to tell me something.

“MOM!!” he bellowed for all around to hear.  “I forgot to tell you something!!”

“You did?” I asked when he paused in order to see if I heard him.  How could I not?!

“YES!!” he continued.  “Guess what?!”

Aaron is great at making an effect.

“What?!” I obediently asked.

“Shauna got a NEW wheelchair!!!” he exclaimed.

My emotions tumbled at that point.  I didn’t let Aaron know this as I responded with excitement and asked him to tell me all about it.

You see, most 33 year old men would be saying things like:  “Guess what?  So and so got a new job…or a new car…or is having a new baby.”

But Aaron was just as excited about Shauna’s new wheelchair as anyone else would have been about those other life events.  It was sweet, but sad to me in a way, too.  It was just something that drove home to me once again, out of the blue in front of the card counter, the reality of Aaron’s life.

As I dropped Aaron off at Paradigm a few days later, Shauna and some of his other friends were coming down the sidewalk.  Aaron quickly lowered his window.

“Shauna!!!  Come and show my mom your new wheelchair!!” he yelled.

So she rolled over to the van to show off her new ride, and I loved every minute of it.  Aaron was so very excited as he jumped out, rubbing his hands together in pure delight.  Shauna was all smiles. 

How could I be sad when there are so many reasons to be thankful?

Watching him walk into Paradigm with his friends just gives me every reason in the world to be happy as I drive away, on so many days. 

And to the business owner across the street who one day called the Paradigm clients “a circus”:  I would choose that “circus” over yours any day of the week. 

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Unknown Ground

I wrote last Thursday about my mostly happy, musical day with Aaron.                    Singing We Go

But there was also the issue of his wet bed, which I thought was due to him drinking too much water before bed.  Pretty sure I was wrong.

Aaron’s new seizure pattern and the hard end to our mostly happy day certainly pointed to that reality.

I was cleaning the kitchen after we ate a late supper.  Aaron walked through the kitchen and then I heard a noise.  I looked over and saw him face-planted on the kitchen table.  What on earth?  I thought he had stumbled and fallen on the table.

“Aaron,” I asked as I headed toward him.  “Are you OK?”

That’s when I saw him falling over and I knew that he was seizing.  I yelled for Gary as I ran to Aaron, catching him somewhat as he hit the chair and then went down on the floor.  Gary helped break the fall, too, and then got a pillow for Aaron’s head as the seizure continued for awhile and then eased.

I knew, as I watched him, that Aaron must have had a seizure during the night…a seizure I didn’t hear.  This is his new pattern.  A low front with storms came through during the night.  Every seizure in the past 2+ months have come during low fronts, with one seizure at night and then one or more seizures the next day while he’s up and about, out of nowhere.

All this academic stuff, though, did nothing for my racing heart and the feeling that I had been punched in the gut.  Just looking at Aaron as he lay on the floor was heart-breaking, to say the least, and was a very unwelcome confirmation to us of this new chapter in his seizure journey.

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“What are we going to do?” I asked rhetorically to Gary as we stood in the kitchen.

“I don’t know,” he answered, wearily.  “This is unknown ground to us.”

And as quickly as Gary said those words, God spoke to me.  I don’t say that lightly.  But I know that it was God speaking His words of hope to me…to us…as surely as I know Gary’s voice.

“It may be unknown ground,” God said.  “But I have told you that I know the path that you take.”

Such comfort washed over me at that moment!  I mean, I still felt the physical effects in my stomach from the fear of seeing Aaron fall.  I felt weak and teary-eyed and worried.  But really, the “peace that passes understanding” kept rolling over me as I thought of those words: “I know the path that you take.”

This is hope.  This is true, biblical, God-focused hope that the world does not offer or understand.  Haven’t we seen that recently in the spate of suicides of very successful people?

There are two kinds of hope.  When I relate them to our situation with Aaron, I see that we have the first kind of hope quite often.  Gary and I hope that Aaron will improve.  We hope that he’ll be safe.  We hope that something we try will help his seizures to decrease.  We hope that we can find caregivers for Aaron, especially during our daughter’s wedding in Texas.

This kind of hope is a feeling, not based on any certainty, but just…well…a hope.  We hope for the best, but aren’t sure if it will happen.

But there’s another hope, one that comes from knowing God personally through our relationship with Jesus.  This is the hope that Paul, for instance, talks about in Romans 5.

This hope is one directed toward God’s promise, and CERTAIN of it’s realization.

This hope is IN God…in His character…in His Word…in His promises to me…in WHO He is!!

And this hope is why I was instantly filled with God’s peace as Gary and I talked about our new and unknown ground upon which we are walking.

This certain trust born from my relationship with my known Savior is what this world needs, and doesn’t have.  Nothing in this world can manufacture this kind of purpose and peace and comfort.

Nothing!

No amount of fame or money or success or promotion or self esteem or anything else that we strive for can bring us this certain hope.

Only a personal relationship with God will result in such hope.

Our problems may not go away, but that desire is not on what I am to place my hope.  Hoping in a desired outcome is normal, but does not bring me any lasting assurance at all.  I’ve learned that much in my life.

My only assurance is in knowing that God is sovereign.  He is in charge of my life.  He loves me.  He knows what’s best for me…for Gary…and for Aaron.

Sometimes His best is hard, but it’s always best.

So God’s best…God Himself…is my only hope.  And it’s enough, because God is enough.

Edward Mote says it perfectly in the old hymn, The Solid Rock:

 

My hope is built on nothing less

Than Jesus’ blood and righteousness;

I dare not trust the sweetest frame 

But wholly lean on Jesus’ name.

 

When darkness veils His lovely face,

I rest on His unchanging grace;

In every high and stormy gale

My anchor holds within the veil.

          

On Christ the solid rock I stand;

All other ground is sinking sand,

All other ground is sinking sand.

 

To end our evening, as I stood in Aaron’s room and looked out his window, God seemed to smile at me as He gave me this little touch of beauty from heaven.

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God knows the path we take.  All is well.

 

 

 

Singing We Go

Aaron LOVES listening to CD’s when we drive places…and yes, we still use CD’s in our van, and sometimes in our kitchen, because we’re old and our van is old and Aaron LOVES CD’s. 

Why does he love CD’s?  Well, he can hold the case and look at the title of each song that is playing, as well as the number of the song on the back of the case.  This is orderly and sensible, which makes great sense to Aaron. 

It’s pretty hilarious, actually, to watch Aaron go through this process, and to hear his voice.  He watches the CD player in the van, for instance, and as soon as the number of the song pops up, he then repeats the number to me and tells me the song title.  It doesn’t matter that I haven’t asked for this information.  He gives it anyway.

The current CD that we are playing becomes his sole focus for however long it takes us to finish this CD.  It’s usually several days, so for that period of time we hear all about the singer or the group.  Again, it doesn’t matter that we haven’t asked for this information.  We will get it anyway, an any time of the day or night. 

At this moment in time, Aaron is listening…again…to Ronnie Milsap.  He adores Ronnie Milsap.  He knows all about Ronnie Milsap…where he was born (near Gary’s hometown!)…his childhood…his blindness…and definitely his songs!  And I can’t tell you how many times Aaron has said, “Mom, when Ronnie Milsap sings, he goes like this!”  At which time Aaron jerks his head around just like Ronnie Milsap does, because Aaron has watched him on YouTube and has keenly observed Ronnie Milsap’s head jerking and swaying as he keeps time to the music.  But when Aaron copies those movements, it’s quite hilarious…and to people in cars beside us, it’s probably quite puzzling.

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Another musical trait that Aaron displays, proudly and loudly at times, is to sing a main phrase of the last song that he has heard before we exit the van.  There was the day, etched into my memory, when the last song that was playing before we entered Wal-Mart was Shania Twain’s classic, “Man!  I Feel Like a Woman!”  So yes, Aaron walked around Wal-Mart singing…more like saying…with his unexpressive and flat voice, “Man!  I feel like a woman!” 

That was a very interesting day.

Aaron had a doctor appointment today, so I decided that it was a good day for a morning haircut and beard trim on our way to lunch.  We drove to Great Clips, and on our way Ronnie Milsap was singing.  Aaron reached down between our seats to grab the CD, look at the number displayed on the CD player, and then match the number to the title index on the back of the CD box. 

“Number 6,” Aaron intoned.  “All Together Now Let’s Fall Apart,” he read with no expression. 

We soon sat in Great Clips after confirming our on-line check-in.  Aaron was ready for his hair cut NOW, but I told him that we needed to sit and wait…that it wouldn’t be long. 

I hoped.

Soon another customer entered and walked up to the counter.  Aaron immediately thought that she would delay his haircut.  In disgust, he uttered his favorite saying lately.

“Oh, puhleeeese!” he muttered.

“Aaron!” I then muttered close to his ear.  “Don’t say that!”

So I began tickling his back, which always calms him, and sometimes gives me hope that he’ll be quiet.

Then another customer entered.

“Oh no!!” Aaron said. 

Now I was REALLY tickling his back, pushing him down so that I had better access, and also so that his face and mouth were facing the floor!

He then decided to sing.

“All together now, let’s fall apart,” he spoke/sang in his usual monotone. 

No joke, I thought!! 

But soon his hair cut was done, lunch at Longhorn was happily completed, and we ran home for a few minutes.  I needed to let Jackson out to potty, and I also had another chore to do…a bit of a yucky one.

Aaron had informed me, just before we left for Great Clips, that he MIGHT have wet a little…maybe just a little…in his bed during the night.  It wasn’t a seizure, but instead a result of TOO much water before bed.  He has been read the riot act on that, by the way.

More of the story and the extent of the damage was found just before we left, with no time to clean it up.  I couldn’t stay too irritated for too long, though, when at Longhorn Aaron agreed to ask the blessing before we ate.  He stretched his hand across the table for me to hold.

“Dear Lord,” he began.  “Help me not to pee in my bed again.  And thank you for this food.”

How could I stay mad?

So at home, I gathered up his bedding…ALL of it…his many covers included.  I examined the carpet, and then knelt down in the tight spot between his bed and the wall.  The spray bottle wouldn’t work at first, but eventually it did.  But my legs wouldn’t work well, either, as I struggled to get up.  Just then, I heard Aaron at his desk…singing…

“All together now, let’s fall apart,” he once again flatly sang.

He has no idea how my loud laughter made getting up off the floor even harder!!  And how much it helped dissolve my frustration.

I have two Ronnie Milsap songs that I have decided are Aaron’s songs, though he is clueless about them. 

The first one was playing in the kitchen last night. 

“Number 11,” Aaron said with no emotion.  “There’s No Getting Over Me,” he read. 

“That’s a funny name for a song,” he added.

But it’s a PERFECT song for YOU, Aaron!!  There’s no getting over you!! 

And I don’t want to, either!

The second song?  It was playing when we pulled into the driveway after his doctor visit today.  It’s on the second CD disk, in case you’re wondering.

“Number 1,” Aaron said, of course.  “I Wouldn’t Have Missed It For The World,” he finished.

BINGO!!

 

 

Happy, Helpful, and Forgiving

It’s beyond time for an Aaron update.  I do believe I could write every day about life with that young man of ours.  I wish I had that kind of time, so since I don’t, I’m sitting here wondering how on earth to corral my rambling thoughts on recent…or not so recent…Aaron antics.  And not only his antics, but what those actions show about the real Aaron, deep in that brain of his.

Aaron has been mostly happy lately.  He is showing that happiness in various ways.  One way is by being extra helpful, so he’s been taking out the trash and the recycling; setting the supper table; carrying in groceries; and even helping others in ways that are…well…a little intimidating.

I saw that for the second time yesterday as we left Sam’s.  We were walking to our van when Aaron spied a lady near where we parked, putting her items in her car trunk.  She had a couple heavy packs of drinks.  Before I knew it, Aaron was running toward her.  I knew what he was going to do because he had done this same thing last week at Wal-Mart.

“Aaron!” I said.  “Come back here!”

But he was determined to help this random lady.  She looked up, a tad startled at first, but then she quickly relaxed when she saw Aaron.

“Hey!” Aaron blustered.  “I’ll help!!”

She smiled and actually let him!  Then she looked at me with a big smile, which made me very happy, as Aaron proceeded to put her two heavy drink packages in her car.  She thanked him as he stood there with a huge smile, rubbing his hands together in his Aaron way, and then came back to the van.  And I don’t know who was happiest at that point…Aaron, or me!

The lady last week at Wal-Mart was kind but said no to Aaron.  So as I did then, I once again explained to Aaron that his offer was very nice but that he had to understand that running up to various women at their cars might be scary to them.  Aaron thought this to be strange, even after I explained it to him.  It’s so amazing that he doesn’t get it, that social norms elude him. 

I had just seen this demonstrated a few minutes prior to the parking lot incident, while we were in the self-checkout lane inside Sam’s.  A man in the other lane beside us was trying to get the attendant’s attention.  She was talking to someone else and was unaware that this man needed her help.  He continued to try to get her to notice him.  What I was noticing was that this exchange was bothering Aaron.  He was bothered by the fact that the man’s voice was rising, and he was bothered by the fact that the attendant didn’t hear him.  Therefore, Aaron decided to be helpful once again.

“HEY!!!” he yelled out. 

Well, well, well.  This did get the attendant’s attention.  And Aaron got a very annoyed look from her, with a raised eyebrow to boot.  I apologized to her while correcting Aaron, and then she realized about Aaron, and she was kind and understanding, and Aaron’s face turned very red, and I have no idea what the irate man was doing. 

WHEW!!!!

It was another teaching moment for Aaron, with me doing the teaching and Aaron looking around for someone else to help. 

OK, where was I?

Oh yes, I was talking about how happy Aaron has been and how he shows it.  He was so happy to see my good friend, Jennifer, in Sam’s that he gave her a big hug.  Yeah.  SO big and strong that I texted her last night to see if she was hurt.  She said she’s not.  Oh, Aaron!  Just another social norm and boundary that Aaron doesn’t get. 

Sam’s was pretty exhausting yesterday, can you tell?

In fact, by the end of the day, Gary and I were at the end…of our patience and our wits and our nerves.  I don’t know, it was just such a tiring evening with Aaron.  He wasn’t bad at all.  But goodness, he LOVES to talk!!!!

That’s another way that he shows his happiness.  Talking!  Almost incessant talking!!  He’ll be in his room for a few minutes and then we hear him barreling down the stairs.  He finds us no matter where we are…outside, downstairs, in the garage, on the porch or patio, or in the bathroom.  It matters not!  Aaron has something to say and he WILL say it, even if he’s said it a million times before.  You think I’m exaggerating?  It certainly doesn’t feel like it to me and Gary.

We often tell Aaron that we just talked about this…that he needs to look that up on his computer…that we don’t have a clue about it…and we even throw up our hands as we say, “I DON’T KNOW!!!!”  But Aaron is not easily deterred as he pushes on with his comments and his questions and his observations…over and over and over. 

I wish I could say that I’m ever the wise and patient mom.  I wish I could give examples of how to always be on top of these issues.  But in all honesty…and I do try to write this blog with all honesty…I’m just not.  Not always patient and calm and understanding, much as I want to be. 

At the end of last night, when I was at the end physically, Aaron and I were in the kitchen.  He was talking again and I was just so done.  He, I thought, spilled a little water on the kitchen floor and that was it.  I didn’t yell, but I talked through…I’m ashamed to say it…gritted teeth. 

“Just clean up the water,” I said, in my “gritted teeth” voice.

I hurt Aaron’s feelings. 

“Shut up!” he responded.  More than once.

This prompted a stern rebuke from Gary.

Well, the rest of the evening went fine as Aaron and I went through his bedtime routine.  But when it came time to give him his hug and a kiss on his cheek, he put his arms under his covers and said no.  No goodnight.  No hug.  No kiss. 

“Because you were mean to me,” he said.

So I left his room.  But before long he was at my bathroom door.

“OK, Mom,” he said.  “I’ll say goodnight.”

He walked into his room with me following.  He got under the covers, held out his arms for my hug and accepted my kiss on his cheek.  Bless his heart.  He so wants our love.

Forgiveness is a big part of our life.  We have to forgive each other a lot. 

God forgives, too, and I’m surely thankful for that.

And God understands, as my dear friend Linda reminded me this morning.  She understands this kind of weariness as she reminded me that Jesus often tried to get away to be alone…but the crowds still followed Him.  I’m so thankful that God understands, and ever thankful for the forgiveness and peace He gives.

I’ll end on a funny note.  I am sometimes amazed at how quickly Aaron can be irritated by me.  I mean, really – ME?!  Be irritating?

It is very puzzling, though, at what can set him off.  Like the other morning, when feeding our Great Dane and fixing his pills in some peanut butter, I dipped into some peanut butter for myself.  This really bugged Aaron. 

“MOM!!  You act strange!” he said angrily.

“How do I act strange, Aaron?” I asked.

He stared at me a minute.

“In lots of DIFFERENT ways!” he replied as he turned and walked away.

Now if that’s not the pot calling the kettle black!  HaHa!!

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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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Long Time and Long Day

My goodness!  It’s been such a long time since I’ve written anything new on here that I had to look back at my last blog to refresh my memory.  I haven’t been able to write about life because of life being hectic and so busy.  When I don’t write for awhile, I feel like I’m covered up with things that I want to talk about.  There are too many happenings to share coherently.  So I hope I will just pull back, focus, and be as brief as possible (since WHEN??!!).

Let me say here that I do write more snippets of life with Aaron on my HeSaidWhat Facebook page.  (https://www.facebook.com/hesaidwhat84/).  You might want to check that out, like it, and follow along.

Now, where was I?  LIFE!

Gary and I did make it to Houston after our crazy few days with Aaron’s seizure injuries, written about in my last blog.  Poor guy!  The morning we left, before Casady (awesome friend!) came over to stay with Aaron, Aaron got out of bed and had blood on his face and pillow.  It was more of a pink blood, but still I was worried about his tooth extraction site.  All was well, though, and he did fine while we were gone.  He only had one seizure during his sleep while Casady was here.

We enjoyed being with our kids in Houston, so much!!  Time with Andrea and her fiancé, Kyle…and our son, Andrew…was great!  It’s always too short, but we’re thankful for every minute.

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It was wonderful to spend time with Kyle before he had to go back out to sea.  Sweet to do a little more wedding planning with Andrea, and to hear about her genetics lab that she manages and of the exciting new project that will soon launch under her leadership.

And it was loud and fast and fun to be at Royal Purple Raceway for the NHRA race that weekend, where Andrew is working now for Leah Pritchett and Don Schumacher Racing.

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We got to take Kyle’s mother, Marie, with us on Sunday and introduce her to this sport that you have to see and HEAR and feel in order to fully appreciate.

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Side note:  Leah was the #1 qualifier that weekend and broke a track speed record!!  And this past weekend, in Atlanta, she and the team took home the Wally!  That means they won the race, for those of you who were like me a few years ago and have no earthly idea what a Wally is!

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Even Aaron, who used to be very jealous of Andrew and who bad-mouthed racing, has become a huge fan.  This past Friday, I picked Aaron up at the theater after his group had watched a movie.  It went like this:

 

Me: Did you like the movie?

Aaron: Not really.

Me: Why not?

Aaron: Well, it was about a volleyball game.

Me: Oh, I love sports movies! Why didn’t you like it?

Aaron: I don’t like volleyball. I only like drag car racing.

 

We never thought we’d see the day!

So Aaron has had a few more falling seizures since our return from Houston.  He scraped his neck on the edge of his desk.

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He fell the following morning as we headed out the door, but I was able to somewhat break his fall, thank the Lord!  Our unfinished floor would have been brutal for landing!  He did bend his glasses but that’s no big deal.  Then he had another seizure that night but was sitting, which was a blessing.

I think I’ve figured out a pattern for these seizures, somewhat.  I changed Aaron’s appointment to his Epileptologist in order for him to be seen sooner.  Gary and I have decided to try CBD oil, and our doctor agreed to that plan.  It arrived today and I’m anxious for Aaron to give it a go…and praying that it will help his seizures, and aid in other ways as well.  Aaron has lost lots of weight and has been over drugged, big time, so we really weren’t wanting to go back to adding more meds.  We have lowered his seizure drugs and are hoping we can stay there.  I was reminded this morning as we drove to his day group about how very tired these drugs make him.

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Scenes like that tug at my heart.  I so desire for Aaron to live as normal a life as possible…to feel alert and strong…to be happy.  Many things beyond his control so often prevent that from happening for him.  Seizures…autism…behaviors – all of it can make his life challenging.  One minute he has me laughing…then he has me crying…later I want to throttle him.  So it went on Tuesday.

Our van was in the shop for new tires and some other necessary work.  I couldn’t take Aaron to Paradigm, his day group.  He was quite happy about that, for no matter how much he loves Paradigm and his friends there, he thinks that staying at home is the absolute BEST!  Here is what I wrote on my Facebook page about one of our morning encounters that day.

 

Aaron is staying home today because our van is in the shop for new tires and a check-up. Therefore, I can’t drive Aaron to Paradigm.

Therefore, Aaron is following me around as he talks…and talks…and talks.

Therefore, I have already told Aaron several times that he needs to go find something to do.

It is only 8:37.

Aaron found something to do. He is watching Falling Skies, so he hurried downstairs to tell me that the Queen Skitter Alien is big. Why is she big? Why is she the Queen? Why is there not a King?

Therefore, we discussed Queen Ants and Queen Bees, including their size, which is large. Huge, even, according to Aaron.

There ARE times that Aaron does connect the dots. Usually in ways that are unwanted.

Therefore, Aaron just barged down the stairs with this tidbit:

“Mom!! You’re the Queen, because you’re HUGE!!”

Therefore, I gave Aaron my best stink-eye stare, which he finds quite funny.

Therefore, it’s gonna be a LOOOONG day!!!!!

 

I had no idea when I wrote that about WHAT a long day it was going to be.  Aaron was first funny…

And then Aaron pulled at my heart.  I was outside watering and weeding some, and Aaron decided to “play in the mulch,” as he calls it.  He has always, since he was a little boy, enjoyed breaking sticks and leaves and mulch into tiny pieces, and watching it fall into his trash can.  It’s a very autistic behavior which relaxes and calms and focuses him.  But there is something about it, especially now that he’s an adult, that just touches my heart for him.

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He also decided to lay back on the sidewalk for a minute, and I wondered what neighbors or passersby may have thought if they saw him.  I often wonder that when it comes to Aaron, actually.

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Later came the frustration.  GREAT frustration!

Aaron was not having as much fun staying at home as he thought he would.  He was at loose ends, seemingly bored though constantly denying it, and was continually following me around the house…talking and talking and talking.  I had lots to do and we had no way to go anywhere, except to take our Jackson for a lingering walk around the yard, so Aaron was trapped.

I was trapped!!  In desperation I threw out a life line.  I know better than to do what I did, but I did it anyway.  I told Aaron that when Dad got home from work, we would go to the shop and pick up the van.

What was I thinking??!!  I know not to tell Aaron that something is going to definitely occur…or sometimes to even tell him that it MIGHT occur…because if it doesn’t, then Katie bar the door!!  And I know not to tell him far ahead of time, because the event then becomes his major focus.  I think he had sucked all the oxygen out of the room and I was light-headed.  Not thinking clearly, you know.

Aaron wanted Dad to come home, way before it was time for Gary to be home.  He asked and asked and asked when we were leaving.  I watched the change coming over Aaron with each time he asked that same question, over and over and over.  His focus had narrowed to that one upcoming event, and he wanted it to happen NOW.

When Aaron is like this, his mood becomes angry and impatient.  He wants what he wants, immediately, not later.  It’s totally impossible to veer him from the one thing upon which he is, at this point, obsessing about.

The more I said, the angrier Aaron became.  He was rude and belligerent.  I was tired and frustrated.  I walked away from Aaron several times before saying something that I knew I would regret.  Funny Aaron was now fuming Aaron.

It truly is amazing to see how his mind works at times like this, though I would rather not.  We’ve often said that at these times, Aaron is like a train on a track and there is no derailing him.  A milkshake might have done the trick, but that wasn’t an option.  It was a long late afternoon.

Then Gary got home, unaware of the tension in the house.  His phone rang right away and I listened as he was being told that the van wouldn’t be ready until the next morning.  AAAAHHHHH!!!!

But Aaron was spent, I guess, and with a new person in the house to talk to, he cheered up dramatically.  Gary is amazing, coming home from a demanding job and then dealing with the demands of Aaron.  Aaron was content to later watch some television with me, and then play a game of Skip-Bo…which he won, happily!

Recently, a friend sent Aaron some money for him to use in whatever way he wanted.  As we strolled through Wal-Mart, Aaron found this:

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Aaron flashes the peace sign all the time, so this figurine was perfect for him.  He wanted it right away, so some of Bill’s gift was used for this gift for Aaron.  It’s a perfect fit!

And it’s a perfect reminder to me that peace always returns after the rough spells – both peace in our home and peace in my heart.  That’s because I know the God Who made Aaron.  I know Him personally and He guides my every step, orchestrating each day.

God’s peace is only one of His many gifts to me.

Aaron is another one…another of God’s gifts.  I need to remind myself of that fact at times.

Actually, God has many ways of doing just that in my life…of reminding and refreshing me.

And for that…and for Aaron…I am grateful.

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Topsy-Turvy Times

I got a phone call last Thursday afternoon, soon after I had gotten home from running errands.  I saw that it was from Barb’s cell phone.  Barb, who works at Aaron’s day group, often lets Aaron use her cell phone to call me.  Or Aaron often uses her cell phone even without permission so that he can call me and tell me something about his day, and then insist that Barb and I need to talk…and we laugh every time about that as we talk for a minute and make Aaron very happy.  So I was sure that this call was just another call from Aaron as I answered the phone.

But it wasn’t Aaron.  On the other end of the line was a staff from Paradigm who was using Barb’s phone to call and tell me that Aaron had fallen during a seizure.  Aaron was standing when he suddenly fell, seizing, and had hit the cement floor.  She said they were sure he would need stitches in his chin.  She was right.

I left for Paradigm as quickly as I could, thankful that our old Great Dane was beyond caring about the groceries left around the kitchen within his easy reach.  I walked in and found Aaron surrounded by Barb and the nurse, sitting in a chair with paper towels being held on his chin.  He was alert, ready to tell me all about his injury and ask if we were going to the doctor.

Which we did.  We went to the hospital nearest our house, out in the country, where the ER wait is next to nothing and the care is good.  The girl at check-in put an ID bracelet on Aaron’s arm…his arm on which he wears his watch, way up high.  There is plenty of room on that arm for both bracelet and watch, but Aaron doesn’t think so.  Immediately when we sat down in the waiting room, Aaron had me take off his watch.  I knew that here, as is true everywhere, Aaron’s way of doing things would be the way that things would be done, if he had any say in it at all.

He would sure enough need stitches, we were told.  No surprise there.  Aaron was taking it all in stride.  He doesn’t panic, thankfully, but he has questions during times like this, wanting to know about the process and the procedure…would he feel it…how many stitches would he need…and could he go home after this was all done.

When things were quieter, as we waited for the doctor and Aaron leaned his head back on the pillow, I looked at him and felt so sorry for all he goes through.  I couldn’t linger long there, though, in those thoughts because I knew I would cry and I knew that my crying would greatly bother Aaron.  He doesn’t have the emotional feelings about life that you and I have.  This is to his benefit, really.  But I do have those emotions, especially as his mother.  Looking at his split chin and his scuffed, swollen cheek just brought home to me the fact that life is hard for Aaron.

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Aaron doesn’t enjoy the pain he experienced.  He doesn’t like his seizures.  But Aaron also doesn’t complain about it or seem to feel at all sorry for himself.  That’s what I mean about the fact that he doesn’t display the emotional feelings about his life that others might do. He’s mostly concerned about the facts.  Will stitches hurt?  How many stitches will I have?  Can I go home afterwards?  What’s for supper?  When can I wear my watch again?

Not – why do I have to be the one with seizures?  Why can’t I drive like others do?  Why do I need so much help all the time?  Why is life unfair to me?

I’m SO thankful that Aaron doesn’t express those feelings…that they don’t even seem to be on his radar.  Once in a long while he’ll say something telling, though, like the time he asked me what went wrong with him.  Or is God mad at him and gave him seizures.  But those thoughts are verbalized very seldom.  Aaron is mostly about the here and now, and about living life in the routines that matter so much to him.  Predictability and sameness in his days are far more important to him than weightier matters such as the fairness of his life.

Gary and I are left with those weightier matters that are heavy on our hearts.  And I was feeling it as I watched Aaron flinch several times as he endured the stitches.  He told his Aunt Sandra about it that night as they talked on the phone.

“That doctor put on the numbing medicine and then he put on the stitches!” Aaron told her.   Somehow he can always make me smile.

But by the end of the evening, as I told my friend Sarah, I just wanted to crawl off in a corner and have a good cry.  That wasn’t to be, though.  As soon as Aaron got in bed later that night, within five seconds after I left his room, he had another seizure.  They happen so quickly!  Thankfully he was laying down in bed for this one, safe from falls.  I was in bed myself as soon as I could after that, very tired…too tired to take time to cry.

The next morning I sat at my quiet time desk, early, wondering what God would show me from His word.  He didn’t disappoint me.  He never does.  I’m reading through II Samuel – again – using a devotional commentary written by Dale Ralph Davis.  In chapter 7, God was explaining to David why he would not be the one to build Him a temple.  And this phrase, read so many times before, jumped out at me as I read it…and then read what Davis had to say.

God was speaking: “In all the places where I have travelled around with all the sons of Israel…”

God lived in a tent among His people as they wandered in the wilderness.  As Davis says, “Do you see what God is saying about Himself?  He is the God Who travels with His people in all their topsy-turvy, here-and-there journeys and wanderings.”

The God of the universe travelled with His people while they spent years in the wilderness…years spent there because of their sin and disobedience.  Davis continued: “That is only a pale glimpse of the condescension of the covenant God, the God Who will not enjoy rest until He gives His people rest , the God Who stoops down to share the hardships of His people, the God Who is not ashamed to say He has been ‘travelling around in a tent’ with them.  See how close He is to you!”

On my tired, sad morning as I hurt for Aaron once again, I was overwhelmed with joy for what God had shown me.  God never lets me down, especially when I need Him the most!  I don’t deserve His kindness to me but I sure did thank Him for His hand on my shoulder that moment…His arm around me and His promise to be with me so fresh in my life as I sat at my desk.

His presence doesn’t necessarily take away all pain or grief.  But He sure does pour comfort over me.  And the certainty that He has a purpose for all that goes on with Aaron fills me with peace.

It’s not a peace based on my feelings.  It’s a peace based on my God.

I felt that same peace as we realized over the weekend that Aaron had probably damaged a back molar during his fall.  I took him to our dentist yesterday, who confirmed that the tooth was broken beyond repair.  Off we went to an oral surgeon, who thankfully was able to extract the tooth right away.  And there I sat once again, watching Aaron sit in another exam room for yet another procedure.  I listened to his questions that he asked the dental staff and that he asked me.  I watched his eyes focus an all the items in the room, processing each one in the way that he always does.  I hurt for his fear that he expressed.

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But I also thought of my travelling God, and how He was right there with us in that room.  I was thankful for that, SO much!  Thankful, too, for the sweet nurse who told me about her young son with seizures, and how we talked about prayer and our faithful God.

When all was done, Aaron was done…ready to lead the way out the door.  Ready for his large chocolate milkshake from Sonic – with NO straw!  Ready for his mashed potatoes and a few deviled eggs for supper.  Very ready to show Dad his tooth and the roots, placed in the little pink tooth box that he can carry around and proudly show to everyone.

Ready to take a walk, in his pajamas, with Gary and Jackson.

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Ready to bring me his treasure that he had found, and that Gary had explained to him.

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Ready to touch my heart with his lopsided, numb grin as he showed me the dandelion seeds.

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Ready to be used by God once again to show me so much, in ways he doesn’t even know.