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. 

Our Wedding - 3

 

God’s plan!  The best plan!!

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The Broad Place

Anniversary:  the yearly remembrance of an event or occurrence.

We typically associate the word “anniversary” with weddings, don’t we?  Which, by the way, Gary and I will celebrate such a remembrance this Saturday.  39 years!!!  I wonder how this is possible…and then I look in the mirror and realize that yes, indeed, this is true.

But there are other anniversary dates as well.  Many are full of happiness, yet sadly, many are just the opposite.  In my Bible, I often make a note beside certain verses that were especially meaningful to me during good times and during not so good times.  I jot down the date and make a short entry about what was occurring when that particular verse, or verses, impacted my life.  I call these my memorial stones, taken from the way that Israel would memorialize important national events by building a stone memorial.  Israel would thus remember what God had done for them there, just as I can remember what God has done for me through significant sections of Scripture during significant times in my life.

I came upon a memorial stone this morning as I was reading II Samuel 22:18-19.

“He delivered me from my strong enemy, from those who hated me, for they were too strong for me.  They confronted me in the day of my calamity, but the Lord was my support.”

I looked at the brief notation I had made, and memories came flooding over me.  The year was 2008 and the month was May, ten years ago.  It’s hard to believe it’s been that long since Gary and I were blindsided by the events that took place.  I really can’t say more about it, but I knew that God’s hand was in it as a direct answer to prayer even though there was much wrong involved.  Our lives have been forever changed…forever scarred…yet forever touched by the hand of God.

You see, after verse 19 comes verse 20:

“He also brought me forth into a broad place; He rescued me, because He delighted in me.”

So now, ten years later, I can truly say that God has brought us to a broad place.  But what does that mean?

Well, places of hardship and distress in the Bible are usually referred to as narrow places.  They are places of being closed in, confined, and full of danger.  But broad places are places of peace and security, where you can stretch and grow and see all around.

I can look back on the past ten years and see the progression in our lives from the narrow to the broad.  I can also attest to the fact that God was very present with us through the awful narrow passages, and He is also very present with us in the broad place.  We need Him in both.

You see, coming from the narrow to the broad doesn’t mean that we have achieved perfection.  Wrong done still carries a huge impact in our lives.  But God’s presence also carries an impact even larger than hurt and pain carries.

Time is ever so slow when we travel from the narrow to the broad place.  There are many, many dangers.  It’s easy to doubt God…to quit serving Him…to blame Him…to resent others…to gossip…

But the painful journey is also the perfect time to hear God speak to us through His Word.  It’s a time for us to take one verse at a time and ponder it, apply it, and let God use those verses to heal us.  It’s a time to learn to look to God and not to anyone else or anything else.  The most disastrous events in our lives cannot hold a candle to the amazing grace and love of God that He delights in showing us, if we but let Him.

David, King of Israel, wrote these verses in II Samuel 22.  He certainly saw his share of turmoil and rejection and danger and sin.  Yet he also wrote this, in II Samuel 15:26:

“But if He (God) should say thus, ‘I have no delight in you,’ behold, here I am, LET HIM DO TO ME AS SEEMS GOOD TO HIM.”

Do you see what David was saying…what he was doing?  David had a grip on God’s sovereignty, as Dale Davis says.  Part of the journey from narrow to broad is being able to understand this:  that we must be satisfied with letting God do to me what seems good to Him.

I did NOT say being satisfied with letting God do to me what seems good to ME.

Sometimes the cancer is not cured.  Sometimes the prodigal does not come home.  Sometimes the lay-off still happens.  Sometimes the grave is where we visit the one we love.  Sometimes restoration is not granted, as happened to us.

Yet regardless of all the “sometimes,” we can say that EVERY time, God knows what is best for my life.

So I hang onto Him, in total trust, and know that my good is of utmost importance to Him.  My good may come at great cost, but it is also of great value for all of eternity.

I’m stretching in the broad place today, thank God!

And so can you.

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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.

 

 

 

 

 

What Went Wrong?

Today is National Purple Day for Epilepsy awareness.  We are well aware of Epilepsy in our home because of our son, Aaron.  Aaron is 33 years old and has had uncontrolled seizures since he was in the first grade.  We were a military family living in Germany when Aaron unexpectedly had his first Generalized Grand Mal seizure.

It was a Sunday afternoon when Aaron fell back into my arms, thankfully, and began seizing on our kitchen floor.  I had no idea what was happening.  I remember seeing blood coming from his mouth…later learning that it was because he had bitten his tongue…and I remember yelling for Gary, who rushed into the kitchen and began trying to help Aaron while I called an ambulance.

The ambulance ride to the nearby military clinic…then another ambulance ride to the German Kinder Clinic, which is what we called the children’s hospital…was all a blur.  Aaron spent several days in the hospital, where the German care was good but the language barrier and the differing medical methods and practices were very difficult.  But the thing we did understand was the diagnosis of Epilepsy.

Over the years we’ve tried lots of drugs and other treatments, including hospital stays for video EEGs and surgery to have a VNS implanted, but the diagnosis is the same…Intractable Generalized Seizures.

Intractable – meaning not easily controlled or managed.

Generalized – meaning that the seizures quickly involve the entire brain instead of one small part of the brain.

OK, lesson over.

Because what I really want to do is to share with you the incredible strength and resilience of our Aaron…and of many others I know who struggle with seizures due to Epilepsy or other causes.  And to also share the incredible strength of God that He gives when needed the most.

This past Thursday night, Aaron had a seizure shortly before midnight.  I heard it on the baby monitor that sits on our nightstand beside our bed.  He had another just after 2:20 a.m.  And yet another seizure at 6:45 Friday morning.

He got out of bed not too long after that, heading to the bathroom and turning on the shower right away.  He cleaned up while I stripped his bedding and started the laundry process.  Soon Aaron was in the kitchen, telling me of his bad headache and asking if he could have his coffee.

He spent most of the morning here, as is so usual after these clusters of seizures.

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When he was more awake and feeling better, and after eating a little, he wanted to go with me to pick up a few groceries.  He was happy to come home with ice cream and cashews and sparkling water, and happy to have supervised Mom in buying what she needed to make for his supper request…Lasagna!!

Aaron went right back to bed when we got home, in his for-real bed now since part of his bedding was back on.  And at 3:33 – since Aaron appreciates such precision…he had the hardest of his four seizures.  Yet amazingly enough, within 15 minutes, he was out of bed…though slowly…and was happy for me to finish putting on all of his sheets and blankets.

Aaron always helps me change his sheets, but I certainly didn’t expect him to do that this time.  I told him to sit in his chair, but he didn’t acknowledge me at all as he stood by his bed, ready to help.

This is what I find so amazing about Aaron.  If I had been the one just finished with my fourth seizure, I imagine that the last thing I would want to do would be to help put sheets on my bed.  It was so heartbreaking for me to watch him stand there, part of the time with one hand on his wall and the other on the headboard of his bed, completely out of it.  Then he turned and bent over, just staring at nothing.  He couldn’t talk well at all, but when he saw a wrinkle in his cover, he reached out to correct it as quickly as he could.  I smiled as I saw his autism come out even through his very fuzzy brain.

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He stood there by his bed during the whole bed making process.  He tried so hard to function…to think…to speak…to move.  All of it was such a demonstration of how impacting seizures are on the brain.

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And it was also a commanding demonstration of how tough and brave Aaron is.  How he fights to keep going!  How much he wants his world to be his version of normal, even though it is anything but that.

He only had one piece of lasagna for supper.  That’s because he couldn’t taste food…another sad side effect of seizures.  His hand and mouth tremored, too…yet another side effect.   Then there’s the drooling.  And on the next day, extreme dizziness and needing help to walk because his legs didn’t work right for a while.  Even on Sunday, his sense of taste hadn’t fully returned.

Medicines that help seizures have side effects.  What is what, we don’t always know.  But decrease or stop the meds, and the seizures increase.  It’s a complicated situation.

It’s a reality for far too many people…far too many families.

But I want to answer the question that Aaron asked me on Saturday as he talked about his seizures.  He sometimes verbalizes his thoughts in profound ways, especially when he is thinking about being born to live a life with seizures.

“Mom?” he asked.  “What went wrong with me?”

A heart-piercing question from my son.

So to Aaron I said simply, and say here as best I can:

            Dear Aaron, nothing went wrong with you at all.  God made you wonderfully, as He tells us in Psalm 139.  You are fearfully and wonderfully made.  You were crafted by God.  I don’t know why you have Epilepsy, but I do know that God loves you and He has allowed this for a reason…one that we don’t understand right now.  But God loves you, and so does Dad and so do I.  We think you’re strong and amazing.  Even on our most frustrating days, and yours, we know that we can trust God because we know Who He is.  He is Sovereign, which means He is in charge and He knows best.  We’re glad you’re our son, and we will always be thankful for our Aaron.

“And we know that ALL things work together for good to them who love God, who are called according to His purpose.”  (Romans 8:28)

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The Cold Snap

We have a little bush in our front flower bed, a perennial that we planted probably 17 years ago.  In fact, I can’t even remember the name of this little bush, so I just call it that – Little Bush.  This hardy bush keeps its leaves on all year long, which is part of its charm.  In the summer the leaves are green with some maroon mixed in, and in the fall and winter the leaves are mostly maroon.  Small berries also grow among the leaves in the fall, so by Christmas it seems to be all decorated for the season.  I really like my Little Bush!

Last year, though, probably starting in March, I noticed that Little Bush didn’t look so healthy.  Its leaves that always stay were falling off, until finally only stark, naked branches were there.

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This was quite unusual, and I was worried.  Was I finally going to lose my long lasting little bush?  Was there something that I could do to save it?

I kept looking at Little Bush, wondering what had happened.  Then one day an article in the newspaper caught my attention.  The headline said something about how certain trees and bushes in Wichita were losing their leaves.  I read the information with interest because of my little bush.  The writer explained that earlier in the winter we had experienced several nights when temperatures had dipped to -10 degrees or lower.  These frigid temperatures had damaged some trees and bushes that normally held their leaves all winter.

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There was my explanation, I thought.  This cold snap had damaged Little Bush.  Then the article went on to assure gardeners not to worry but to be patient…that most trees and bushes would begin to grow again in the warmth of spring because their roots were not damaged by the extreme cold.

So I waited and I observed.  I checked my little bush routinely and sure enough one day I saw tiny new leaves emerging on the empty twigs.

 

As time went on and the days passed, the warm spring sun and the rains did their restorative work.  Little Bush grew…

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And grew…

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Until finally Little Bush was back, as pretty as ever!

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I’ve had some cold snaps in my life, too…times and events that came unexpectedly and with little or no warning.  Everyone has.

Cold snaps hurt.  And they take many various forms.

An illness.  A diagnosis.  Sudden death.  Lingering death.  Rejection.  Accusation.  Betrayal.  Job loss.  Divorce.  A prodigal.  Regret.  Guilt.

I remember my dad’s victory over lung cancer…how relieved and thankful we were when treatments were complete and he was in remission.  But before the five-year mark came the blood work and the testing and the phone call…liver cancer…inoperable…four more years of chemo…hospice…

Cold snap.  Recovery.  Then another cold snap.

But through it all, our family verse brought us each the warmth and the hope that we needed: “God is our refuge and strength; a very present help in trouble.”  (Psalm 46:1)

Sometimes our hard times…our cold snaps…make us feel like David when he said, “My tears have been my food day and night, while they say to me all day long – “Where is your God?”  (Psalm 42:3)

Where is God in our pain?  Oh, He hasn’t gone anywhere!  He’s a very PRESENT help in our trouble, remember?  He’s right here with us.

Right after David said his tears were his food, he said, “Why are you in despair, oh my soul?  And why have you become disturbed within me?  Hope in God, for I shall again praise Him for the help of His PRESENCE.”  (Psalm 42:5)

My little bush had hope because its roots were secure, and so do we who know and follow Christ.  We have hope in our despair because we know that God is sovereign…He is in control…He has a plan…He is present…and He has a purpose for the cold snaps that rock our world.

“I called on Your name, O Lord, out of the lowest pit.  You have heard my voice.  Do not hide Your ear from my prayer for relief, from my cry for help.  You drew near when I called on You.  You said – “Do not fear!”  (Lamentations 3:55-57)

God is near in our pain…near in our pondering…near in our praise that arises even out of hurt and unanswered questions.

I love these lyrics of Jeremy Camp’s song, He Knows:

 

All the bitter weary ways

Endless striving day by day

You barely have the strength to pray

In the valley low.

And how hard your fight has been

How deep the pain within

Wounds that no one else has seen

Hurts too much to show.

All the doubt you’re standing in between

And all the weight that brings you to your knees.

 

He knows

He knows

Every hurt and every sting

He has walked the suffering.

He knows

He knows

Let your burdens come undone

Lift your eyes up to the one

Who knows

He knows.

 

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