Salads and Seizures

Aaron walked into the kitchen on Saturday morning a little over two weeks ago –  March 2nd, to be precise – and saw that I was boiling some eggs.  Ever hopeful that whatever I am cooking will be something he likes and something I am making for him, he stopped and watched for a few seconds.

“Mom, what are you making?” he asked.

I told him that I was making his favorite salad.  He stared blankly, as if he was utterly clueless about this favorite salad.

“You know, Aaron,” I continued.  “The salad you love so much.”

“The salad with Ranch?” he questioned.

“No,” I told him.  “You know, the salad with the eggs on top.”

Still blank.

“And the cheese and the bacon,” I explained.

“Oh yeah!” he finally said.

But he still gave no name to this mystery salad which really is his favorite salad!  Aaron has such a hard time with names of people and pets and, amazingly enough, food!

“You call it Egg Salad, Aaron,” I told him.  “But the real name is Seven Layer Salad.”

I knew he wouldn’t remember the name, but he knew it for now.  It was fun to watch his happy reaction to the thought of this salad for supper…whatever it’s called!

We were looking forward to our day and our weekend.  The day before, on Friday, Aaron had two seizures, and so he wasn’t able to go to his day group.  He missed movie day, which always makes me sad.  Thankfully, though, Aaron loves staying home and showed no regret at all.

On Friday evening, we all went to Wal-Mart to get Aaron’s weekend treats as well as some fun food for the weekend.  We were expecting a strong winter storm to hit on Saturday evening and into Sunday, so there was excitement mixed in with our fun.  We are snow lovers!  I had especially waited until Gary was home from work so he could go with us, just in case Aaron had a seizure in Wal-Mart.  We have learned that when Aaron has one or two seizures, he might have a drop seizure.  These seizures, drop seizures, are so dangerous and unpredictable.  This past year has seen Aaron have some serious injuries from falling.  Thankfully, our shopping trip was uneventful and was fun for all of us, Aaron especially.

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There were no more seizures during that night.  Aaron was happy as could be to think of his free day ahead…the anticipated snow…making chocolate chip cookies with me…steak for supper…AND his special salad!!  Whatever it’s called!  😊

Later that morning, before noon, Aaron was downstairs in Gary’s study.  Aaron was talking up a storm of his own with Gary, as usual.  I was in the kitchen, out of sight of the stairs.  Suddenly I heard a terrible crash…and then the noise that I definitely recognized.  A seizure!!

Gary was beside Aaron in an instant.  As I started down the stairs, Gary told me to get towels.  I was panicked and in tears as I ran for towels, hurrying them down to Gary.  There was blood all over Gary’s hands.  I knew this was serious.

As he started up the stairs, Aaron had fallen backward into a file cabinet, hitting the bottom metal handle with his head and actually bending it.  Aaron is usually not conscious for a period of time after a seizure, sleeping soundly, but not on this day.  He woke up, maybe because we were holding him and applying pressure to the gash on his head.  Or perhaps he awakened because of the pain.  He was combative and scared, something we’ve never seen.  He was fighting us, trying to get away and go up the stairs as we held him tightly.

Finally, Aaron calmed down.  He wanted to know why Gary’s hands were bloody, which of course was scary.  We explained what happened and told him we would need to take him to the ER.  Soon we were in the van, me sitting in the back with Aaron while Gary drove.   Aaron was coherent then.  The bleeding had stopped, but not his pain, of course.  Yet he was remarkably calm and understanding, a trait he often displays in these frightening times.  A gift from God, I’m sure.

I thought of other gifts from God as Gary drove.  We talked about how thankful we were that the sun was shining and there was no snow yet.  I was VERY thankful that it was a Saturday and Gary was home.  And we were thankful still that there is a good hospital and emergency room out here in the country not far from our house.

We continued to be grateful that Aaron was seen immediately and that the CAT Scan showed no damage to his head or neck.  Aaron was so compliant during the scan, even though it hurt his head and the bleeding began again, worse than ever.

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But oh, how my heart hurt for our son!  I couldn’t let him know that.  Gary and I stayed strong for Aaron and for each other.  I really wanted to curl up in a ball and cry, but God gave so much grace to be fully there for Aaron.

And there was Aaron, fully talking up a storm about nuclear bombs, of all things!  Talk, talk, talk he did in his typical Aaron fashion.  He knows a captive audience when he sees one, let me tell you!!

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God gave special strength to Aaron, especially, as he endured 8 staples being put in his head.  I knelt by his side, stroking his arm and face and talking to him during the ordeal.  With each staple, he would flinch…eyes closed…and mutter a soft “ow.”  I felt like my heart was being pierced each time.

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I tell you, our children with medical issues…and I know a lot!…are true heroes.  They endure more pain IN their lives, and disruption OF their lives, than I can fathom.  And yet they just keep on going.  One of our sweetest blessings is that Aaron doesn’t feel sorry for himself or complain about his lot.  He LOVES to talk about what happens to anyone who will listen, trust me, and even to perfect strangers…but he doesn’t act like he resents this life that he lives.

However, once in a while, he does give us a glimpse into his heart and his thoughts.  He did just that on Sunday as we made his cookies, lots of snow outside our windows, and his head still bandaged.

“Mom?” he began.  “Saturday, I thought, would have been a good day, but it wasn’t.”

I really wanted to wrap him in a hug…which he would have promptly pulled away from…and empathize with him about what a bad day it certainly was.  But I knew that I needed to point him to a principle that God points ME to, over and over.

Thankfulness.

“I know it was a hard day, Aaron, but it ended good,” I reminded him.  “What did you have for supper?”

“We had steak!” he answered with enthusiasm.

“And what else?” I prompted him.

He thought a few seconds.  I was hopeful that he just MIGHT remember the name of the salad.

“Triple egg salad!!!” he exclaimed.

Triple Egg Salad??!!

How on earth did Seven Layer Salad become Triple Egg Salad?!

Whatever.

So, for that moment, we were both thankful for Triple Egg Salad!

And in my heart, for so many other blessings as well!

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Plan B

I heard Aaron’s first seizure at 4:00 a.m. night before last.  I went in to be with him until it was over, assuring that he was safe.  And always, when this happens, my fuzzy sleepy brain tries to remember what plans I had for the upcoming day, and how those plans may need to be re-arranged.  Usually one seizure means others will follow, though in recent days that hasn’t been the case.  We just never know.

Not long after Gary left for work, I heard Aaron getting out of bed.  He came downstairs, eyes very droopy and tired, with his typical post-seizure headache and stomach ache his first concern.  I told him that he should go back to bed.

“I can’t,” he replied.  “I’ve already put my time in my notebook.”

You see, Aaron keeps a log of the exact times that he goes to bed and the exact times that he gets out of bed.  Every.  Single.  Day.

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In his rigid and organized world, he needs a period of time before he will go back to bed.  I know not to fight this.

Aaron went about his morning as best he could, with me listening closely for another seizure.  His falling seizures sometimes occur after only having one seizure during the night, so I was on full alert.

I was hoping that Aaron could go to his day group.  Friday is movie day and he enjoys that.  But he didn’t feel like going anywhere, he said, and I could see that he really was struggling.  Besides, if he had a seizure while out with his group, that could be very dangerous.

I knew that my day now needed to be changed, my plans shuffled or canceled.  Nothing in my day was hard to change, but it was inconvenient…and not only for me, but for my friend whom I was going to see after dropping Aaron off at Paradigm.  My day would have been:  take Aaron to Paradigm; go to Lolly’s house for a visit; run to Aldi for some groceries before our weekend snow comes; home with groceries; pick Aaron up from the theater; take Aaron to Wal-Mart for his “end-of-week” snacks; zip into Sam’s; and home.

Changing this day was far easier than having to reschedule a doctor appointment, for instance.  Yet having to switch from Plan A to Plan B can be irritating and at times difficult.  Poor Aaron can’t help any of this.  I’ve learned to be flexible.  And to be thankful that I don’t have to work, as having a job would be impossible.

As it turned out, Lolly came to my house.  She even brought some delicious little Brazilian cheesy bread balls that she learned to make during her years as a missionary with her husband in Brazil.  And cake!!!  She brought me…oh, and Gary 😊…some cake!!!

I was able to later run Aaron to Burger King for a take-out meal, knowing that if he had a seizure at least he was sitting down in the van.  Later, as he napped, he did have a second seizure.  I was so thankful that he was in his bed, safe from falling down!  And in the evening, we got to make our Wal-Mart trip.  Gary went with us so that we could both keep an eye on Aaron.  It was fun!  And Aaron wanted to make sure that I took a picture of him with this turkey breast that he LOVED for some funny reason!

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Not every Plan B in life is fun, though.  Many times, our switch from Plan A to Plan B is pretty devastating, and certainly not easy.  And as believers, we know that God has a plan and a purpose on this path upon which He places us.  Yet He never said that our path will be rosy.  Most often, it is not.

God told us to take up our cross and follow Him.  He did not say to take up our basket of May flowers and follow Him.

One of the most impacting books I have ever read is The Cup and the Glory, written by Greg Harris.  Harris talks about what it means to follow Christ.  Drinking the cup of suffering is what brings glory to God and great growth to us as His followers.

In Acts 16, during Paul’s second missionary journey, we see a profound example of God’s perplexing leading in Paul’s travels.  Blessings had been abundant to Paul and Timothy.  The Greek phrasing in verses 5-8 is so telling.  The words “on the one hand” are soon followed by the words “on the other hand.”

On the one hand, churches were growing and being strengthened…but on the other hand, as Paul tried to travel to Asia, he was forbidden by the Holy Spirit to go there.  Later, as Paul and Timothy tried to go to Bithynia, they were once again stopped by God.  They finally ended up in Troas, where they never intended to go.

That road to Troas led through high mountains and was very difficult.  Why did God take Paul away from his intended destination, only to place him in such a strenuous and uncertain place?  Why did Paul and Timothy have to walk so long and so wearily through barren land full of dangers, and with no ministry taking place?

But Paul walked.  He kept walking in faith and in obedience to God, not understanding the reasons but fully understanding that God knew those reasons, and that was all that mattered.

Harris says, “It’s easy to walk with God when He exhibits the visible hand of His blessing.  However, Jesus calls us actively and continually to walk with Him – even when we can sense neither His presence nor His blessing – and not merely when you see Him feed the 5,000.”

Our goal in life should be to keep our eyes on God, not on our destination.  We may head one way, a God-honoring way, only to be re-directed by God onto another path.  Keeping our eyes on God during those disappointing times is key to experiencing His peace in the middle of our puzzling questions.

Our main goal on our journey is to be God Himself.  To know Him, to honor Him, to serve Him…wherever we are…is where we need to be focused.  God alone.  Through our questions, our tears, our concerns, our anger…God knows, and He cares, and He has a purpose.  His purpose is far greater than we will likely ever know on this earth.

Plan A?  Not today.

But on the other hand, Plan B!!

“Trust in the Lord with all your heart and lean not unto your own understanding; in all your ways acknowledge Him, and He will direct your paths.”  Prov. 3:5-6

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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)

 

 

 

 

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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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.

What Is

It happened to me again several weeks ago.  An innocent conversation…a random comment…and I found myself having to corral my thoughts into line with some principles that God has hammered home to me over and over again for years. 

I want to be honest about what happened, but I also don’t want to alienate family or friends.  I don’t want anyone to think they can’t share their life with me.  So here goes.

This person was talking to me about his upcoming retirement, and then the plans that he and his wife had.  Later, as Gary and I drove away, I shared with Gary how I had that twinge of longing as our friend talked.  And how I knew better than to dwell on it and to therefore give Satan that opportunity he always looks for, the opportunity to push that door fully open that I have allowed to crack open, even just a little bit. 

You see, our life with Aaron is a life far different from typical couples our age.  Gary and I are not fully free to do many of the things that our peers are able to do.  And that’s OK…truly OK.  But sometimes the comparisons come, and if I am not careful then I can wallow in misery, and therefore open myself to sin and defeat.

The very next day…literally…after this conversation, I was at my desk as usual in the early morning.  I opened my Bible and my study book to the section of I Samuel that I was reading and was soon amazed at how God spoke to me in those quiet moments.

I read about Saul’s son, Jonathan, and his deep friendship with David.  Saul was the king of Israel, but because of his sin and disobedience, God had told him that his reign would end with him.  His family would not inherit the kingship.  This meant that Jonathan would never be the king.  But who would be the next king?  David…Jonathan’s dear friend.

Jonathan knew this.  He knew that he would never be king.  In fact, in I Samuel 18, Jonathan gave his robe, along with his armor and his sword, his bow and his belt, to his friend David.  This act was a symbol of the fact that Jonathan was surrendering any right he had to the throne…surrendering it to David.  And not only that, but Jonathan continued to be an even better soldier and leader than his father, the king.  Jonathan certainly behaved in a godly, kingly fashion, even though he knew he would never assume the throne. 

As Dale Davis says in his book, I Samuel: Looking on the Heart: “For Jonathan, then, the kingdom was not his to seize, not his to rule, but his to serve.”

And then this, which impacted me so greatly: “Maybe a tragic life isn’t tragic if it’s lived in fidelity to what Christ asks of us in the circumstances he gives us.”

Did you catch that?  Living in loyalty to Christ IN the circumstances He gives us! 

That’s what Jonathan did.  He lived royally even though he would never in reality BE a royal.  He lived in covenant relationship to God, faithfully, IN his circumstances.

This is exactly what I am supposed to do, every day.  I thought that morning of I Timothy 6:6, of what Paul told Timothy.  Paul said that “godliness with contentment is great gain.”  The note in my study Bible says that this is “an inner satisfaction with the situation that God has ordained for him.”

But how on earth is that possible, day after day…that inner satisfaction with situations in life that are so often very UNsatisfactory?!

This satisfaction is only possible when I realize that it doesn’t come from ME.  I can’t manufacture this deep peace.  Only God can do that in my heart as I surrender all my rights to Him and then obey Him by trusting Him. 

It’s realizing that God Himself loves me, and He is the One that has given me what I have in this life, hard as some of it may be.

My circumstances are not the hand I have been dealt.  My circumstances are not bad luck…or good luck.  They are not the luck of the draw.  Nor are my circumstances due to karma, or any other such nonsense that we sometimes are inclined to believe. 

God chose me and He saved me, and as His child I know that each occurrence in my life…every situation…is entirely under His authority and in His plan for me.  I know He loves me and I know that I can trust Him, totally, to do what’s best for me and what will cause me to give Him glory.  What a waste if I don’t!!

So when the pain comes to my heart and my life…when I’m inclined to settle in the negative thoughts and desires and questions that pop up so unexpectedly…I have the responsibility to do one thing right away.  That one thing is to talk to my Father and let His loving arms surround me with His peace.  And then obey, like Jonathan did.  Just live in obedience, step by step, and know that God will honor that obedience in my life.

He may not honor my obedience by taking away my situations, but that’s not why I am to obey. 

So the bottom line in all of this is just this: 

May my circumstances not dictate my response, but may my response be dictated by God’s character.

What is…is…because God is the One in charge.

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And He is a very, very good God.