Just Wait!

One night a couple weeks ago, I was with Aaron as we went through his normal bedtime routine.  I was particularly tired that night, having spent another long day getting me and Gary and the house and Aaron and our caregiver and our dog all ready for the trip back east that Gary and I were taking.  Seeming to feed off of my particular tiredness, Aaron was a particular slow that night.  I had hit the proverbial wall and just wanted nothing more than to lay my head on my pillow and go to sleep.

Speaking of, when Aaron is this kind of slow at night, even laying his head on his pillow is a drawn-out process.  It’s like he’s moving in slow motion as he makes sure his covers are pulled up just right, then pulled down just right, and then situated even further down so that he can ever so slowly sit on the edge of the bed and ease under the covers.  His head was still not quite on the pillow as he scooted his body over, but instead was leaning back on his headboard.  He even rolled his eyes back in his head like he sometimes does as he EVER SO SLOWLY…did I already say that?!…maneuvered his body a little lower under his blankets.  He looked like he was going to pass out right there.  Finally, he was situated with his head actually on the pillow where it belonged and his body totally under the covers.

But now Aaron had to get his arms out from under the covers for our goodnight hug and kiss on the cheek.  This part of the routine is necessary…arms under the covers, then arms out from under the covers…reaching up for me and our hug and a quick peck on his cheek. 

Yet nothing on this tired night was quick.  He was as slow as molasses in the winter, for crying out loud!! 

So I pulled the covers down for him and in doing so, I revealed my impatience to ever-observant Aaron.  He was more awake than I thought as he looked at me.

“Don’t be rushable!!” he reprimanded me sternly. 

I had to smile at his wording as I gave him a hug and a kiss.  Only Aaron could defuse the situation with his unique way of speaking. 

I’ve been thinking a lot about this issue of being “rushable.”  Seeing all the back-to-school pictures going around on FB…all the comments tinged with unbelief at how old a child is or what grade they’re in…and especially hearing the certain sound of mixed emotions regarding a child leaving for his first year of college or a job or marriage…has made me look at the reality of Aaron in a new way.  And yet it’s not really new at all.

Aaron had his first seizure a little over 26 years ago.  He is approaching his 34th birthday.  He is our oldest child and should have been the first to leave the nest for college or job or marriage.  But here he is, still in our home and still dependent on us.  This is through no fault of his own.  Gary and I know that we are on this path not only because of Aaron’s special needs, but even more importantly, because of God’s sovereign will in our lives. 

We know that God could heal Aaron, but for now He has chosen not to do so.  Over the years, I have quit focusing on healing.  I’ve learned it’s far more important to focus on what God has for me on this path, step by step, as I stay in His Word and as I seek to obey Him.  I want to hear from God, to learn, to grow, to be more like Him, and to share Him with others.  And God has used Aaron in SO many ways to point me to those very aspects in this life.

Yet I am not by any means a perfect example of peace in our situation.  I do not walk around with a cherubic smile on my face as I adjust my halo on my head.  Absolutely NOT!!  I get sad, and tired.  I think about our future, and definitely Aaron’s.  I get frustrated.  Sometimes I wish for things that are not in our picture now, and perhaps never will be.  And once in a while, I crack open one of those little doors of my heart and I peek inside, thinking of what Aaron is and what he might have been.  Those doors are hurtful and I know not to dwell there, but I am a mother and at times my eyes take a quick look as they fill with tears.

It’s at those moments that I know I must look at God and trust Him fully.  And I must let Him remind me that there is a very great reason for our paths of suffering…for all of us, for you and for me as we follow Christ.

Remember the story of Lazarus in John 11?   Lazarus was very sick, so his sisters, Mary and Martha, sent word to Jesus to tell him the news.  Jesus loved this family.  They were dear friends.  When Jesus was told that Lazarus was sick, He stayed two days longer in the place where he was.

Wait…what?! 

When we get news that someone we love is critically ill, we go to them right away.  But Jesus, instead of taking off right away to Bethany to see Lazarus, purposely stayed where He was for two more days.  Then when He did get to the town of Bethany, Martha and Mary both said to Him, “Lord, if You had been here, our brother would not have died.”   

Lazarus had died.  Jesus could have come sooner, but He didn’t and now Lazarus was dead and already buried in a tomb. 

And Jesus didn’t come sooner ON PURPOSE!

We know why Jesus didn’t go sooner and why He allowed Lazarus to die, because Jesus told his followers the reason right after He was told about the illness of His friend.  Jesus said that it was all being done so that the Son of God would be glorified. 

Aaron would say that Jesus wasn’t “rushable.”

Jesus let the situation continue because He knew the end.  Jesus knew that He would raise Lazarus from the dead in order to point to God…to give God glory…to show all those people another picture of the love and greatness of God.

Yes, it was hurtful to those that loved Lazarus.  It was especially hard on Lazarus to die, right?  But their hurt and pain was used by Jesus to point out the glory and the power of God.

How many times are we told in the Bible to wait on the Lord?  Wait for Him to show Himself.  Wait for Him to teach us.  Wait for Him to open a door, or to shut another. 

For me, it’s as if Jesus is repeating Aaron’s words:  “Don’t be rushable, Patty.  Quit striving.  Be still, and know that I am God.” 

I don’t know why Aaron has his special needs.  I don’t know what tomorrow holds, or next week, and certainly not next year.  But I do know that God is God…that He is good…and that He wants Aaron, through us, to bring Him glory.

We do that by trusting Him, by pointing out the wonderful ways He speaks to us through His Word, and by resting each day in His plan for us and for Aaron.

When I try to rush God…to come up with answers why…to explain and understand everything…to have plausible reasons…then I am not letting Him be sovereign in my life and I am not bringing Him glory. 

Don’t be rushable, Mom!!

Got it, Aaron. 

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The Reality

Three years ago, we planted sunflowers around the perimeter of our vegetable garden.  Aaron was SO happy that Gary and I had finally agreed to grow these giant flowers.  Aaron had wanted sunflowers for a long time.  They did not disappoint as they grew and grew and grew that first summer.

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Last year, Gary and Aaron planted some of the seeds that Gary had harvested from our first sunflower crop.  Again, the mammoth flowers grew steadily and gave us much beauty to enjoy.

This year we decided not to plant a vegetable garden.  Time constraints during the planting season, very late winter weather, some traveling, and severe drought caused us to make this decision.

One day, though, we noticed some plants emerging from the soil.  Sure enough, we soon realized that our sunflowers had returned.  We hadn’t planted a single seed this year.  These were volunteer sunflowers that had sprouted from old seed left in the ground from the year before.

Just a few days ago, there in our garden, was a welcome splash of color.  Sure enough, one of those volunteer sunflowers was blooming.  And it wasn’t long before Aaron also saw it.

“MOM!!!” he loudly exclaimed.  “Look at the sunflower!!  Let’s go see it!”

We walked over to the garden and looked at the pretty bloom, all bright and perky and sunny.  And of course, I took a picture.  Isn’t it pretty?

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But if you take a closer look, you’ll see more than one pretty sunflower.  And most definitely, if you take in the whole scene, you will have a new appreciation for how much we appreciate this flower.

Look at the sunflower stalk.  You notice that it’s missing something.  It’s missing leaves…lots of leaves.  The deer that call this area home have helped themselves to our sunflower leaves.  We didn’t really expect any of our sunflowers to bloom this year because of the damage done.

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And look at the background behind and around our struggling sunflowers.  The ground is parched and weedy and really quite ugly.

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So here is the reality of our garden this year.  It looks forsaken and ignored and certainly not a place of beauty.  It’s drab and dreary and dull.

Except for…this.  This beautiful, unexpected flower.

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What’s your reality today?  Oh, I’m not referring to your yard or garden.  What’s the reality in your life today?

Here’s a picture of mine.

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Many of you will know exactly what we are dealing with today.  After a welcome break of two and a half weeks seizure free, the low front that came in last night also ushered in seizures for Aaron.  I wasn’t really surprised, yet seizures are always concerning and sad.  And the loud thump very early this morning as Aaron fell out of bed during a seizure was most unwelcome, especially for poor Aaron.  Thankfully, he was uninjured, all wrapped up in his multiple covers like a cocoon.

Wet carpet, wet bedding, wet clothes…really, the least of my worries.  Another seizure a short while ago, and watching closely while Aaron is up and about, are my main concerns.  I can also change my schedule today, but I cannot change this reality that is a continual part of our lives.

That’s why reading the short devotional for today in the old Streams in The Desert was powerful and moving to me.  Listen to what George Matheson says about waiting for hope:

“Thou hast made waiting beautiful; Thou hast made patience divine.  Thou hast taught us that the Father’s will may be received just because it IS His will.  Thou hast revealed to us that a soul may see nothing but sorrow in the cup and yet may refuse to let it go, convinced that the eye of the Father sees further than its own.”

The eye of God sees further than my eye sees.  I see my surroundings in life, often ugly and stressful, but beyond what I see is what GOD sees…what God allows.

I have hope.  You, if you know and follow Christ, have hope.  Aaron may not be healed on earth.  But I have the hope of heaven, where he will be healed and where all will be perfect.

And I have here-and-now hope in God, which brings me peace…joy…strength.  We who follow Christ all have this wonderful hope, despite our heartaches and our deep valleys.

Look at what else Aaron and I found in our little sunflower patch.

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Future blooms, waiting to pop open and brighten up our dull garden even more.

Know that God is a God of hope.  Know that He will work out your problems for some good, unseen as it is now in your life.  Know that He has reasons beyond what you may ever know on this earth for the dark days you are facing.  Know that He will never leave you or forsake you.

“Strive to be one of those – so few – who walk the earth with ever-present consciousness – all mornings, middays, star-times – that the unknown which men call Heaven is “close behind the visible scene of things.”  (Streams in The Desert)

“For I hope in You, O Lord.  You will answer, O Lord my God.”  (Ps. 38:15)

 

 

 

 

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.   

 

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.

 

 

 

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.