Category: Epilepsy

How Aaron Rolls

Aaron and I had a day together on Thursday.  It was a day full of things that he loves…..pizza, buying a DVD, going to see a movie, watching Wheel of Fortune, and a back tickling session before bed.  Oh, and a doctor visit first thing…..which is the most important thing, but only to me.  That is definitely not the most important thing to Aaron.

We were having Aaron’s first visit with his new Epileptologist.  That’s a mouthful!  At least his name is easy…..Dr. Lee.  I never know if a new doctor is one that we will like and trust.  I also never know if a new doctor will like and understand Aaron, which is nearly as crucial in Aaron’s treatment – in my opinion – as his knowledge of medicine.

Aaron was his usual impatient self in the waiting room.  Aaron doesn’t tolerate waiting very well.  We should change the name of the room to the sighing room…..or the grumbling room…..or the impatient room.  And don’t think that Aaron doesn’t notice who came after us but is called before us!  Observant Aaron indeed notices, and indeed doesn’t care for my reasonable explanations.  This is one reason I carry a supply of mints in my purse.  They help a tiny bit to ease the pain of waiting, for Aaron and for me.

A nurse called us in, a new nurse to us.  We missed you, Jen, if you read this!  Aaron sighed as he passed her, and he sighed as he stood on the scales……after removing his shoes, of course!

“I’m tired,” he grumbled.  He wasn’t even particularly excited to see that he had lost some weight.  Why is weight loss wasted on the unappreciative, I wonder?

Aaron got up on the table and promptly lay down, but I promptly told him he had to sit up for his blood pressure check.  Watching him sit up was quite a sight for new nurse, with Aaron nearly rolling off the table……new nurse trying to help him sit……and him finally sitting upright after a few kicks of his legs.  Wow!

New nurse and I were filling in the blanks about Aaron’s meds and doses, and of course Aaron plopped back down on the exam table.  Now I was sighing.

New nurse left and soon in walked a young medical student.  He had questions of his own, some of which he asked me and some of which were unspoken but were written all over his face as his eyes darted off and on to Aaron.  He was kind, but young and inexperienced, I imagine, in the ways of special ones like Aaron.  It’s so interesting to me, and actually amusing, to see the looks on the faces of those who are trying to decipher Aaron.

By this time, Aaron was totally comfortable on the exam table.  This is how Aaron rolls.

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Medical student left, and soon Dr. Lee knocked softly and entered the room.  Medical student was with him.  Dr. Lee was instantly comfortable with Aaron, shaking Aaron’s hand as Aaron rested on the table and then shaking mine.  I knew right away, as we first spoke, that I liked him.  He was thorough, knowledgeable, in charge but in a soft way, and very good with Aaron.  He even did Aaron’s exam while Aaron remained in his prone position.   He went over lots of Aaron’s past history, and had a plan for future treatment as we talked.  But nothing new will happen until Aaron has a video EEG in June, which will require a hospital stay of several days while Aaron hopefully has some seizures after meds are removed.  Stressful, but a necessary and needed way to see what’s going on in Aaron’s brain now as compared to his last video EEG years ago.

Aaron was happy to finally struggle up and off the exam table, get on the elevator, in the van, and go to Sam’s for a quick pizza lunch.  Home to let the dog out, a run into CD Tradepost for his DVD, and finally we were at the theater.  We were finally going to see Rogue One!

I paid for our tickets, with Aaron standing close and observing everything carefully.  As I signed the receipt, I noticed that the girl behind the counter was having a bit of a struggle with our tickets.  She was holding one ticket, but seemed to be tugging on something under the counter where our other ticket should have been printed.  Soon she was on her knees, working on the ticket machine, I guessed.

“Sorry,” she said as her eyes peeked over the counter.  “My machine isn’t working.  It’s actually totally stopped.”

It did not escape Aaron’s attention that Mom was holding only one ticket.  His mind was calculating the fact that we needed TWO tickets.

“You mean we can’t go to the MOVIE??!!” he asked in a panic.

The girl assured him that we could go.  She was in the middle of calling the ticket taker on her walkie talkie to explain things.

“We can’t go to the MOVIE?!!” Aaron asked again.  And I scooped up my receipt and my ticket……ONE ticket……as I thanked the girl and turned to leave, taking Aaron’s arm as I wondered why this had to happen to us, of all people.  To Aaron, who must have everything just right……and a jammed, turned off ticket machine is anything but just right!

We walked toward the second most anticipated feature…..POPCORN!!  All the while, I was explaining to Aaron that all was well…..that we could go to the movie…..that the ticket taker knew we had both paid.

“But you only have ONE ticket!” Aaron argued.

I explained again as we stood in line.  It was a fairly long line for a school day, I thought.  And so did Aaron, who proceeded to sigh again.

“So we can both go to the movie?” he queried as we waited our turn.

I told him yes, very thankful that a second line opened.

“CAN I HAVE A LARGE POPCORN??” Aaron bellowed as we stepped up to the counter.  There was that look on the young man’s face, so I smiled and put him at ease.  Aaron was not going to jump over the counter, I wanted to tell him.

“So we can go to the movie?” I heard Aaron ask again as I juggled our popcorn order, cups of water, Aaron getting straws, and Aaron getting a HUGE wad of napkins.  HUGE!!!  Why does he always do that?!!  How many other people saw that?!

But that’s how Aaron rolls.  It’s like napkins are a security to him.

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He was super happy that we both made it through the ticket taker matter, and that our theater was only a short walk away.   I was super happy to see only two other people in the theater.  And VERY SUPER happy that we got the seats on the very back row, with the wall behind us.  Aaron could stretch, and make minor noises without disturbing anybody.  He couldn’t kick seats in front of him, or pull on them if he got up or got excited.

We sat down.  I exhaled, leaned back, and totally relaxed.  Only three more people came in, for a grand total of seven movie goers on this day.  Another reason to relax.

But Aaron was not sitting back.  He was not totally relaxed.  He had placed his popcorn on the floor, not to be picked up and eaten until the movie actually started.  Not when the lights dimmed.  Not when the movie instructions about talking, cell phones, etc., started.  Not when the movie trailers began.  Only when the Rogue One movie was actually and for real on the big screen would Aaron pick up his popcorn and start eating.

In the meantime…..

As soon as we sat down………popcorn placed on the floor………napkins squished in one cup holder……..water in the other cup holder…..Aaron pushed up his shirt sleeve in order to see his watch, which is always pushed halfway to his elbow.

“It’s 2:02,” he said.

“OK,” I answered in my relaxed mood.

“When it’s 2:02,” he asked, “does that mean it will start soon?”

I knew we were in the countdown.

“It won’t be long,” I assured him.  “It starts at 2:15.  So how many minutes is that?” I asked him.

“Thirteen minutes,” he flatly answered.

We sat there in blessed quietness, me continuing to relax.

Aaron pushed his shirt sleeve up again.

“It’s 2:04,” he informed me.

I just shook my relaxed head.

And munched popcorn…….because I have no strict rules about the proper popcorn eating time.

Soon, the sleeve pushing happened again.

“It’s 2:10,” I heard in my relaxed state.

I guess it was 2:15 when the lights dimmed and the announcements started and the trailers played and all the other stuff happened on the screen.

The movie started, FINALLY, and Aaron promptly reached down for his popcorn.  It was only then that he leaned back, partially, and ate to his heart’s content.

I only had to hush Aaron a few times, and try to answer questions a lot of times, and wonder why Aaron was so obsessed over whether Luke was in this movie!!

“Where’s Luke?”

“Is that Luke?”

“Maybe he’s Luke?”

“Will we see Luke later?”

I am THE most uneducated person to ask about Star Wars, but Aaron will ask anyway.

But it’s OK.  We were on the back row, all relaxed…..with popcorn…..and a wad of napkins……and water to slurp with his straw……which is how Aaron rolls.

Actually, I’ve learned to roll with Aaron in most situations, relaxed or not.  That’s because Aaron is going to roll the way Aaron rolls, and usually there isn’t a lot I can do about it.

May as well roll with it, and smile, and enjoy the ride with Aaron……Aaron’s way.

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Choosing My Focus

I had my day all planned today, my to-do list made, and the order of that list firmly in my head.  Take Aaron to Paradigm, then the post office, return an item to Gordman’s, stop at the Vintage store to ask about milk paint, run quickly into Dillon’s, probably get gas, home for a quick lunch and indoor straightening, and then outside into this upcoming warm afternoon where I was looking forward to some leaf raking out of our drainage ditches and picking up branches and maybe pine cones and cleaning off the front porch and vacuuming out the van……whew!…..and pick up Aaron and home to make supper and then Wheel of Fortune and ironing and then bedtime before I know it. 

There.

What I wanted to get done today is based on what I need to get done tomorrow, and the next day, and the next.  We all know how that is.  None of these errands is life changing, by any means, so if they don’t get done today it’s really not a huge deal. 

And they won’t get done today, at least most of them won’t.  Poor Aaron had a night of hard seizures, so he’s having a day today of sleep along with a terrible headache……and the possibility of more seizures, so I won’t stray too far from him today.  My to-do list pales in comparison to what he endures, and to how I hurt for him. 

I’m extremely blessed in many ways and I recognize that.  Gary’s job allows me to stay at home with Aaron.  Gary is a faithful, hard worker.  Aaron’s seizure clusters don’t happen daily, so he has many days where he feels good and is able to participate in life.   And my greatest blessing?  That I know God and I know that He is in control of our lives, including Aaron’s life. 

Aaron came downstairs this morning, took his morning pills and some Ibuprofen for his terrible headache, and then lay back down on the couch with his soft pillow and his favorite fuzzy blanket and a trash can close by in case he needs to throw up.  And as I listened to him breathing in sleep, I thought that this…..

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This hard thing…..is what has continually over time drawn me ever closer to God.

If all I see, though, is Aaron and this sadness, then my faith will falter.  But I have learned to look beyond the seizures…..the sadness for my son…..the pain…..and to look at God. 

God….Who has a plan.  I read in Psalm 25 this morning, and was so filled with joy.  “O Lord, I give my life to You.  I trust in You, my God!  The Lord is good and does what is right.”  And other verses this morning that confirmed to me that the very thing that causes me the most heartache is the thing that also deepens my walk with God.  God does what is right, even when to me it seems far less than right.

It’s all in where I choose to put my focus.

Then my friend, Jill, posted an article on Desiring God…..an article on intimacy with God, written by Jon Bloom.  It was excellent!  And this statement in the last paragraph says it perfectly:  “Intimacy with God often occurs in the places where we must trust Him most.”

Yes!!  Lying on my couch is my son whom I dearly love, and whom I dearly wish could live a normal life, but God has not willed that to be the case.  But in that pain of my mother heart has grown a deep trust in God, learned over time and in the hard, broken places.

I’m reading “Faith of Our Father” by Dale Ralph Davis, and is it ever good!  Today I read about Abraham and his faith, but how faith isn’t always a piece of cake in the long term.  Our faith can waver, so that’s why we need to keep our eyes on the One in Whom our faith rests.  Davis says, “….if the object of faith is what matters, then don’t be overly worried about faith itself, wondering how much you have, anxious about the ‘amount’ of faith.” 

I’ve heard people say, “Well, God didn’t answer my prayers.  Was my faith not strong enough?”  No, no!  The strength of our faith has nothing to do with us but everything to do with the God that we trust.  He is the strong one!  And He DOES always answer prayer.  It’s just that sometimes the answer isn’t what we wanted, so we tend to think that He hasn’t answered.  In reality, what we’re thinking is that we just didn’t get our way.

I love Davis’ prayer at the end of this chapter I read today:  “We give thanks, O Lord, for the trouble you take to help us go on believing.  Teach us not to fret over the intensity of our faith, but convince us that even a weak faith may lay hold of a strong Christ.  Amen.”

Amen, indeed!

My faith can on some days be weak.  If I just look at Aaron…..his seizures……his autism and behaviors……his here and now…..and his future – then I can most definitely falter.  But like Davis said, may my weak faith lay hold of a strong Christ!! 

I’m not a super parent, but I do have a super God!

And the more I trust Him, the more my faith grows. 

The impossibly hard times are times rich with learning, if we but let go of our pain and place our focus on God, Who loves us more than we can know.  When I open my hand and place it in God’s hand, then I have also let go of the pain that I sometimes hold too close. 

“Bible faith looks away from itself to the One Who promises and finds rest there.”  (Davis)

I can be thankful that God took my to-do list and added the most important thing to be done, at the very top of the list. 

Trust Him and rest in Him. 

And to be here for my Aaron…..this son that has taught me so much, even when he doesn’t know it. 

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New Year, Old Ways

A new year is upon us!!  Welcome, 2017!

A fresh start can be so nice.  New everything.  Out with the old, right?  Well, not always, as I have seen on the past two days.  We all know that to be true.

I ended my old year on a most familiar note…..playing SkipBo with Aaron right before bed.  I guess that’s our version of a party, which suits Aaron perfectly as he really does NOT like parties.  Parties have too much noise and emotion for him, thank you very much.  But SkipBo with Mom is orderly, predictable, with nice piles of sequential numbers, and plenty of opportunity to cheat.  Yes, cheat, of which Aaron is a master if not watched closely.

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The next morning, our New Year morning, saw Aaron blandly staring at me as I very happily wished him a Happy New Year!!  His lack of expression at these moments is often hilarious, but I can’t always laugh because he finds that emotional expression irritating or he thinks I am laughing at him.  Which at times I am, but in a good way that he just wouldn’t understand.

Anyway, Aaron’s main concerns on our New Year morning were:

1)      Can I have FOUR cups of coffee?  (Don’t worry.  The cups are half full).

2)      Are there coupons in the newspaper for me to cut?

3)      What time are we going to Chili’s for lunch?

Aaron had opened a gift during our family Christmas Bingo game.  The gift was a Chili’s gift card that was burning a hole in…..well, in my wallet because I don’t dare give Aaron gift cards to keep.  They won’t keep with him.  They will be lost or given away.

I told Aaron that we would go to Chili’s after church.  He wanted to know the exact time, so I gave him my usual ball park figure and he was happy.  He was not so happy with the coupons in the paper for some reason.  Still slow from his cluster of seizures on Friday night, the coupons did not make him show his usual sense of purpose.  However, he settled in on the floor with his coupon trash cans as he sat on his coupon pillow with his coupon scissors…..and his FOUR cups of coffee on the bench nearby…..and he began to clip the coupons, very slowly.

I was in the bathroom later when Aaron came to the door.  “Mom,” he slowly began.  “I was cutting coupons but there were too much.”

Pause.

“OK,” I responded.

Pause.

“There were too much,” he repeated.

“Yes, there were a lot today,” I replied.

Pause.

“There were too much coupons,” he said again.

Pause.

“There were too much,” he once again asserted when he got no Mom reply.

Pause.  Sigh from me.

“Aaron, just take a break.  You can finish them later,” foolish Mom said.

Pause.

“I ripped them,” Aaron flatly replied.

Pause.  Another sigh from me.

I was following Aaron’s train of thought, one all too familiar.  He didn’t want me to cut those coupons.

“Because you don’t do them right,” he continued.  “You don’t cut them straight on the line like I do.”

He made his exit on that note.  No surprise from me.  It might be a New Year, but we are still living in our old ways…..always, always.

And sure enough, there on the family room floor lay his unfinished little stack of coupons……ripped, just like he said.  Aaron’s thinking has always been this…..that if he can’t cut the coupons, NO ONE will cut the coupons.  Especially Mom, who is a dismal failure at coupon cutting.

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Those ripped coupons were a stark reminder to me that just under the surface with Aaron there is always that issue of how he handles stress in his life.  He reacts, and often his reactions are very inappropriate.  His behaviors are a huge concern to us.  So I stood there being reminded that we were on our first day of a brand New Year, brand new beginnings, brand new opportunities……and here we were, being slapped into our old reality of life with Aaron.

Some things just never change.  We know that.

But there were other reminders of wonderful things that never change, either.  Gary and I finally got to church on time.  Yes, we were one of THOSE people who totally didn’t see the memo on the changed time for church……one of THOSE people who didn’t give New Year’s Day a second thought…..and so on this New Year’s morning we drove to church TWICE.  And we laughed at ourselves.  We’re HOW old?!

Anyway, we walked into church to the hugs and handshakes of sweet friends.  And there was Joyce, who handed me a bag containing a huge bag full of Tootsie Rolls…..for Aaron, because of my recent Tootsie Roll blog.  How unexpected and sweet, in more ways than one!  Later, Aaron was also surprised and full of smiles at this kind gift.

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The care of friends is unchanging in our lives.  Such a blessing!

The worship and the message on our New Year’s morning was encouraging and challenging.  And we sang one of my most favorite songs – Great is Thy Faithfulness.  What a wonderful reminder of God’s unchanging faithfulness in our lives!

And later, as we sat with Aaron at Chili’s, Gary and I watched him ever so slowly eat his enchilada lunch and his salad.  His joy at eating out was very evident.  Never changing, his love of restaurant food!  And seeing that joy is always fun for us, despite our constant reminders to him that he doesn’t need to take 17 toothpicks…..don’t stare at the other people and their food……don’t make noises…..don’t clap…..please don’t loudly stretch when you get out of the booth.

Never changing.

I was able to salvage a few coupons later from the ripped pages.  I didn’t let Aaron see me as I quickly cut them out behind his back.  And I know that we will continue to try to salvage good out of the bad days that Aaron will surely have this year.  It’s our reality with Aaron, New Year or not.

But through it all I know, like that favorite old hymn says, that God will remain the same, too.  Faithful to us, as always.

 

            Great is Thy faithfulness, O God my Father,

            There is no shadow of turning with Thee;

            Thou changest not, Thy compassions they fail not;

            As Thou hast been, Thou forever wilt be.

 

            Great is Thy faithfulness!  Great is Thy faithfulness!

            Morning by morning new mercies I see.

            All I have needed, Thy hand hath provided.

            Great is Thy faithfulness, Lord unto me.

 

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My Priceless New Year’s Gift

I was sitting by our Christmas tree this morning, knowing this is the last time I’ll be enjoying its soft beauty this year.  And it hit me.  Everything I do today will be the last time I do “that” this year, because tomorrow is a whole new year!  My brain, fuzzy from another long seizure night with Aaron and waiting for my first cup of coffee to kick in, tried to wrap itself around that fact.  2017 is almost here!

I’m not really as excited as that exclamation point may indicate.  I mean, a new year is always pretty cool to think about.  But life has a way of pulling us back to reality, especially as we get older, and for me my vision is narrowed to what I have on my plate right now.  I know I need goals, but on days like today, today is about all I can handle.

Up four times with Aaron and once with the dog last night made my reality at that moment very narrow.  It was the tree and the lights…..my coffee…..and the baby monitor beside me as I listened to Aaron after he returned to bed, my ears jumping into alert mode at each change in his breathing.

And one more thing……a word.  The word “grace.”  Sometimes that word may be overused, if that’s possible, and for me may lose its full meaning.  But this morning that word kept going through my tired mind.

Two meanings of this word popped up on my handy phone dictionary app.  They are:

1)      The freely given, unmerited favor and love of God.

2)      The influence or Spirit of God operating in humans to regenerate or strengthen them.

Perhaps my favorite grace passage in the Bible is 2 Corinthians 12:9-10.  I was drawn to that this morning, and though I know it pretty well by heart, I made myself actually walk upstairs to get my Bible.  Really, walking up the stairs took some effort this morning.  I felt like I should copy Aaron, who earlier went up the stairs monkey fashion on all fours, as he often does.

Anyway, Bible in hand, I sat down and opened to these familiar verses.  Paul had been given his “thorn in the flesh,” whatever that was…..and three times he implored God to take it away.  Implored…..past tense.  It seems that Paul was done with asking God to remove it, and was now able to say in the next verse that God “has said,” meaning that there was an ongoing result of God continuing to say these truths to Paul:

“And He has said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’  Most gladly, therefore, I will rather boast about my weaknesses so that the power of Christ may dwell in me.  Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”

One thing I had written beside these verses in my Bible, my memorial stone, was simply:  “Feb. ’92, Aaron.”  That was the terrifying day in Germany, 25 years ago, when Aaron had his first big seizure.  I’ll never forget that Sunday afternoon in our kitchen in military housing…..the terror of him falling backward into my arms…..blood coming from his mouth as he seized and I screamed for Gary……the frantic phone call……the ambulance……the German children’s hospital…..language barriers with doctors…..so much to absorb and to understand and to fear.

But God was there with us bringing His unmistakable peace and calm, due only to His grace.  It had nothing to do with Gary and me being strong, or having a certain personality, or any of that “me” stuff.  I was a momma wreck!  It was totally God pouring out His strength…..His grace…..onto and into me.

So here I was this morning, 25 years later……TWENTY FIVE!!!!…….and God pulled me back to these memorial verses.  Nothing has changed.  Aaron had four hard seizures last night.  God has not taken away this thorn, this reality, this sadness in Aaron’s life and in ours.  But he has, over and over and over again, shown us His grace….His love……His favor…..His strength…..in the middle of our pain and our struggles.

So am I, like Paul, “well content” with this weakness that God has given our Aaron and us?   That phrase means “to take pleasure in.”  Well, no.  I can’t honestly say that I take pleasure in Aaron’s seizures or in his autism.  But I must look beyond all that list of things Paul mentions “taking pleasure in,” and look at those words, “for Christ’s sake.”

For my whole life, really, is to point to Christ.  That’s what following Him is all about, after all.  And if I could handle it all myself, I wouldn’t need Him.  But I DO need Him!!  And therefore, what Paul said is so true.  “When I am weak, then I am strong.”

Strong because God makes me that way, and He makes me that way only because of His grace.  Back to that word again…..grace……the outpouring of His favor and strength upon me.

So I just found my resolve for this new year.  It’s to come back to the realization that I can’t change a thing, but I don’t need to change a thing.  Recognizing my sorrow and my pain isn’t meant to point to me and to make me the focus.  It’s to point to Christ and to talk about His grace through it all.

“So that the power of Christ may dwell in me,” Paul said.  That word “dwell” means “to pitch a tent.”  Christ’s power is here for the long term, for me, as I rely on Him and trust Him in the hard times and thank Him through all of it.

His grace is here for all of us who follow Him.  What a priceless gift!  So I close with the words of this old song written by Don Moen, perfect for this new year ahead.

 

                     He Giveth More Grace

He giveth more grace as our burdens grow greater,

He sendeth more strength as our labors increase;

To added afflictions He addeth His mercy,

To multiplied trials He multiplies peace.

 

When we have exhausted our store of endurance,

When our strength has failed ere the day is half done,

When we reach the end of our hoarded resources

Our Father’s full giving is only begun.

 

His love has no limits, His grace has no measure,

His power no boundary known unto men;

For out of His infinite riches in Jesus

He giveth, and giveth, and giveth again.

 

His grace is such a gift!  And so is our Aaron.

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You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights.  Gary was already trying to go to sleep, and I wanted to do the same.  But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much. 

“AARON!!” I hissed.  “Why are you in our room?” 

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied.   “Now go to bed!”

Not long after, it happened again.  Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron.  Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm.  Another bad report this past Monday just took all the wind out of me.  Gary and I feel like nothing is working, but something has to make a difference.  We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying.  Praying a lot.

I was so thankful for the verse that God gave me this week.  The portion that meant so much to me was this phrase: 

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.”  (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us!  One of us gotta have some relief!!” 

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness.  But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room.  Soon he walked up to me and handed me one of his sticky notes.  Here is what he had written:

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Bless his heart.  He really wants to do better, but finding that better is very difficult for him in certain circumstances.  Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday. 

That verse God gave me early in the week was perfect.  We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways.  The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth.  In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened.  I was out with my little elderly friend, Nora, when I got a text.  This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago.  Dona and I rarely text, so I was surprised and a little alarmed to see her name appear.  I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with.  We briefly texted, with her telling me that I had just been on her heart and mind.  God at work, without a doubt.

I could hardly wait to get home and call her.  We talked for quite awhile.  She told me again that she kept thinking about me and so she prayed.  I love it when God does these things!  He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s.  We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt. 

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!!  He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!”  he boomed.  “I want to give you a rose!!  Because I love you!!”

And with that, he gave me the biggest hug!  I thought my heart would explode!

The love note…..the rose……the hug. 

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night.  BAM!!  There he is again, full of talk and excitement, no matter how tired we are. 

“Are you sure you want me gone?” he asks.  No, Aaron, not gone…..but resting.  Go rest, and let us do the same.

His behaviors can be so very tiring.  This past week has been emotionally exhausting for us, as well as physically.  We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone.  We just want him to be happy, and to know how to behave in a way that makes others happy, too.  We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief.  I know He’s listening…..I know He cares……I know He’ll answer.  He’s already impressed others to pray for us.  That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life.  One so often shows me the other. 

I just have to be making an effort to look sometimes. 

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How Quickly Things Can Change!

This past Saturday, I took advantage of the beautiful weather and spent some time in the garden.  I ended up with a large bucket full of tomatoes.  Our tomato plants have produced beautifully this year!  It’s certainly the best tomato year we’ve ever had.  I’ve canned quite a few quarts, and as I looked at my overflowing bucket I knew that there would be more canning soon to come. 

Aaron was in a very happy mood over the weekend.  One of his favorite staff from his day group came over for pizza on Friday evening.  When he left, Aaron got to spend some time petting our neighbor’s cat, Dallas.

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There was a favorite television show to watch that night, too.  And the next day there was time outside, time playing Skip-Bo, and tacos for supper that night.  It doesn’t get much better than that!  Simple joys are sometimes the best joys.

Aaron was in such a helpful mood on Saturday, too.  He helped me cook the tacos and set the table.  And then he offered to help me wash the tomatoes from the garden after supper.  We got them all cleaned up, with Aaron stacking them higher and higher on the counter.  We laughed when four of them fell on floor and we had to reposition the tomato tower. 

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On Sunday afternoon, Gary and I had hoped to take Aaron to a corn maze.  However, Aaron started complaining of a sore throat.  We could also tell that he was getting a cold.  We’ve learned not to tell him in advance that we might go somewhere, just in case it doesn’t work out, so he was none the wiser when Gary and I cancelled the corn maze idea.

On Sunday night…..actually, early in dark morning hours on Monday……Aaron had a seizure at 1:20.  Then another and another, until finally he ended up having five very hard seizures in five hours.  He was already struggling with all the head congestion, so the seizures were a little scarier than usual.  He bit his tongue and wet his bed – all the bad stuff that points to hard seizures. 

He slept all day yesterday, Monday, on the couch while I washed all of his bedding.  When he did awaken, he sounded terrible because of his congestion and his swollen throat.  He was running a fever.  He was terribly weak, the seizures having taken quite a toll and then his illness making matters worse. 

He very slowly made it up the stairs in the late afternoon, on all fours like a monkey because when he’s weak he feels safer that way.  He climbed in bed and immediately fell back to sleep.  He got out of bed for an hour, later in the evening, and then slept all night last night. 

I took him to the doctor this morning.  Aaron had pneumonia last year and was in the hospital for a week.  That was my fear now, but thankfully he doesn’t have pneumonia.  In fact, we’re treating this as a virus and waiting to see what happens.  Too many antibiotics last year was really hard on his body for months afterward, so we want to avoid those drugs if at all possible. 

Aaron ate a little lunch when we got home.  Now he is sleeping, again.  Poor guy. 

And I’ve been thinking how quickly things can change.  Sickness with Aaron is more serious than it usually is with most of us.  Sickness on top of five hard seizures has just done a number on him.  He is very slow and wobbly, and extremely tired.

It’s amazing how we could go from this:

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To this:

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To this.

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Hopefully, what Aaron has right now is nothing terribly serious.  But the stark change that he has gone through, literally overnight, is a reminder to me that we just never know what a day……what an hour……might hold for us. 

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In James 1:2, James told us to consider it joy when we encounter various trials.  That word “consider” means to make a judgment.  It’s up to me to decide how I’m going to view my hard times.  It’s my call.  And various trials really mean “multi-colored trials.”  I think we all would agree that trials come in all different colors.  God uses a wide variety of situations in my life to grow me and to teach me. 

But again, it’s what I do with my trials that can make all the difference.  It’s like Aaron’s pile of tomatoes, stacked up on the kitchen counter.  I could have left them there, where eventually they would rot and be no good for us or anyone.

Or I could do what I did Monday while Aaron slept nearby on the couch.  I could use the tomatoes for something good……for something that will benefit us during the cold winter that’s coming.

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It was my decision what I did with those tomatoes.

And it’s my decision what I do with the trials in my life, so often unexpected and unwelcome.  God is waiting to grow me through the troubles I have.  I don’t have to understand them, but I do have to make the choice to let God use them in my life for something good…..and in the lives of others as well, I hope. 

Not to become bitter, but better.  And then in future cold days that may come, I will benefit from the lessons learned…..learned in the hard times. 

 

 

 

 

 

 

I Almost Missed It

A little after 6:00 yesterday morning, I heard a loud thump coming from Aaron’s room.  I opened his door to find him lying on the floor beside his bed.  He had obviously fallen out of bed, but why?  I didn’t hear a seizure, so I assumed that he had just been too close to the edge of his bed and ended up tumbling out onto the floor.  But he wasn’t waking up and I was wondering what had happened.  He’s too big for Gary and me to lift, so I had to leave him there after checking him for injuries and hope that he woke up soon.

He did awaken and climb back into bed.  Later, when he got out of bed and had taken his shower, he came into my bathroom where I was readying for the day.  “Mom,” he said in a low voice.  “I don’t feel well.  My head hurts.”

I looked at him and saw a red mark on his forehead where he had hit his head on the lower shelf of his nightstand when he fell out of bed.  Poor Aaron.  Sometimes it seems that if something’s going to happen, it’s going to happen to Aaron.

After talking to him for a few minutes, I decided to let him stay home for the day.  I was mentally shifting gears then as I rearranged my schedule somewhat, knowing that Aaron would be home.  It’s really not a life changing big deal, usually, to keep Aaron at home on days that I don’t plan on him being home.  But I do have to shuffle some things around that are on my list for that day.  Like I said, not a big deal on most days……but it can be an inconvenience. 

There’s another element, too, in keeping Aaron at home.  I’ll be honest…..I enjoy my alone time and am refreshed during my breaks from Aaron.  I feel selfish to say that, but all parents understand what I mean.  As I make a decision to keep Aaron with me all day, I know that I might end up frustrated as the day progresses.  He likes to shadow me all day between his times on his computer, talking constantly about things that either don’t interest me or that I have heard over and over and over. 

It’s at those times that I know I have a decision to make…..basically, be content or be miserable.  Be understanding or be irritated.

I was thinking about these things this morning as I heard a man on the radio talking about his unplanned health issues that have severely impacted his life.  He said that he has learned not to let his joy be dictated by his circumstances.

On a much, much smaller scale, that is the decision I faced yesterday.  And it’s the decision that I face on many days, not just concerning Aaron, but concerning every aspect of my life. 

Do I allow my circumstances to dictate my joy……or do I let God dictate my joy even IN my less than ideal circumstances?

God tells me to be content in every situation, with thankfulness to boot.  I don’t even want to tell you how many times I mess that up!

I thought back on yesterday with Aaron and was struck by what I would have missed had I not kept Aaron at home…….other than tons of talk about the movie Battle Los Angeles; his new delight in playing Battleship on his computer as he expounds on EVERY. SINGLE. WEAPON.; and whether Charlie Daniels is from the north, the south, or the west, and is he a cowboy singer or a country singer; and so much more.  Really.  Much, much more.

So what would I have missed?

I would have missed his heartfelt hug, so rare on most days from Aaron.

I would have missed him at lunch, saying, “I’ll wait for you to eat with me, Mom, so we can pray.”  Then holding his hand and listening to HIM pray his simple, sweet prayer.

I would have missed him asking if he could do the watering of my porch plants.  Look at his tongue!  🙂

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I would have missed him going with me to Dillon’s, where he asked if he could buy two thank-you cards for Barb and Brandy at Paradigm.

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I would have missed watching him prepare those cards, and ask if he could include a Papa Murphy’s coupon in each one.

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I would have missed the opportunity for God to once again speak through these simple things to my sometimes stubborn, selfish heart.  I am living the life that God planned for me.  It’s not a bad life at all, but not necessarily the path of life that I would have chosen if I had been given the option to plan it all myself.  I mean, I’m the age where I should be an empty nester and have freedom…..right?

Nope.  Not at this point, and maybe never.  But there is so much joy, even in the frustrations, because I have learned that God is good and His plan is good.  HIS plan……not mine, always. 

So yeah, my circumstances should not dictate my joy.  My joy is dictated by God IN my circumstances. 

Being thankful is a huge part of my joy.  It’s really the key that opens the door to joy, but it’s the hardest thing to do sometimes.  It’s pretty cool that Aaron wanted to buy those thank-you cards yesterday.  I need one to continually hand to God, every day, many times.

I bet Aaron could help me with that.

Oh wait……he already has.   

 

Aaron’s Love Songs

It’s been awhile since I’ve really written about Aaron.  So many days I want to write, but somehow life prevents me from doing what I would love to do.  I mean, do we really need clean clothes, food on the table, errands run, garden tended, a somewhat tidy and clean house, etc., etc., etc.?!  Then so much time goes by that I lose my momentum……lose the feel of those special Aaron moments…..and so I go on, hoping to recapture them and share them later.

Aaron and I are coming off of a fun, long Labor Day weekend.  It was sad for me because Gary’s Uncle Bob went to heaven on Friday morning.  This was awesome for Uncle Bob, but of course has left a huge hole of grief in the hearts of those that he loved and who returned that love so deeply.  He was a great man.  As Gary checked the price of plane tickets Friday evening, the realization quickly sank in that we could not both go home for Bob’s funeral.  I was very thankful that Gary did go.  At first he said no to that idea, but he really needed to be there with his family.  He’s so glad he did.

Aaron was my shadow for a large part of our long weekend.  We went out to eat……watched movies here at home…….took walks around our back yard with Jackson……washed and ate garden veggies…….enjoyed sitting on the patio and seeing our Hummingbirds at the feeders……watched Wheel of Fortune……and did a little shopping. 

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And I captured one of the best pictures of Aaron ever as we ate at Jose’ Peppers.  Isn’t this just great?

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On our Wal-Mart trip, Aaron went on his way to the electronics while I browsed some on my own…..knowing that I would probably find Aaron later, when I went to pick him up, with some discovered jewel of a movie in his hand.  Sure enough, that happened…..but I was able to dissuade him from the need to buy it now since his birthday and Christmas are looming on the horizon. 

In his other hand, though, he carried a CD.  Any of you who know Aaron know that he loves music.  He loves listening to music any time that the van door closes and the engine starts.  He becomes super focused……another word for obsessed……with whatever current artist is filling his ears with music.  He will announce every song as the number on the CD changes, then sit back and listen closely.  Then at home he will look their songs up on his computer and love every minute of watching them perform.

When it was Neil Diamond, for instance, Aaron one evening said to Gary, “Dad!  Mom and I are listening to Neil Diamond!  Mom likes number 11!!”  Then he paused, because surely Dad knew what song is #11.  When he realized that Dad was not at all adept with knowing #11, Aaron patiently said, “It’s Song Sang Blue.”  Never mind that it’s really Song SUNG Blue.  Aaron isn’t concerned with grammar.

Aaron continued telling Gary about Neil Diamond.  “He always carries a gu-tar.”   “Why does he like a gu-tar?”   “Is that his favorite instrument?”   “He has funny hair.” 

And later, as he and I played Skip-Bo, Aaron suddenly asked, “Why do you like number 11?  Is the sound of that song kind of cute to you?”  So Song Sang Blue was thoroughly discussed, dissected, analyzed, and hopefully understood after we were done.

Back to Wal-Mart and the CD in his hand.  Aaron loves, loves, loves Ronnie Milsap.  He was totally thrilled as he held out his newly found CD for me to see.  “MOM!!  I found Ronnie Milsap!!!!”

Yes, it was Ronnie Milsap all right……Ronnie Milsap Gospel. 

“Aaron, I’m not sure you’ll like this so much,” I told him.  “It’s gospel music.”

“Please, Mom?!!  Can I get it??” he begged.

So I said yes, and we immediately put it in to play as soon as the van door closed and the engine started.  As the sounds of How Great Thou Art filled the van, Aaron bent over and rubbed his hands together every bit as much as if the Beach Boys were singing about girls on the beach, as Aaron says.

Aaron repeats a phrase of the last song, usually, that we listen to as we drive home.  We hear it over and over and over and over for the rest of that day.  So on Monday, many times, I heard Aaron singing these four words – “How great Thou art.”  “How great Thou art.”  “How great Thou art.” 

And on Tuesday, back at his day group, Barb texted to tell me something and then she said, “Aaron was singing How Great Thou Art earlier.”  HaHaHa!  Isn’t that just the best?  Maybe that’s why he was having such a great day.  And he also took some of our garden tomatoes to share, giving some to his friend Yolanda, a fellow client.  Look at this picture of happiness.

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Last night Aaron wasn’t feeling well at all.  He said his head and stomach hurt, and at 8:30 he wanted to go to bed.  “Maybe I suddenly caught a germ,” he quietly said as he and I went through his bedtime routine.  But he was off, not even asking if it was going to rain or checking on the outdoor temperature, which he ALWAYS does!  He did ask if I would have the monitor on.  I know why.  I know he’s afraid of having seizures, and that just breaks my heart for him. 

Friends and family prayed, and there were no seizures during the night!  I was so, so thankful for that!  Aaron got up this morning after sleeping for nearly 12 hours, saying his head still hurt.  Yet he always says this in the morning, so I wasn’t too sure.  He sat across from me at the kitchen table, giving me a stare down as he hoped I would tell him to stay home.  As the morning went on, he improved.  Coffee and a shower works miracles!  And so did the offer of a Quik Trip stop on the way to Paradigm!

Later, sausage biscuits and Mike & Ikes in hand, we headed down Kellogg on the way to his day group.  The artist of choice now filling the van was Alan Jackson.  Aaron picked up the CD case and said, “Mom!  Look at #5 and #11.  They’re BOTH about LOVE!!!”

So as #11 played, I made a kiss sound in rhythm to the music……and received a resounding whack on my arm from Aaron!!

“What’s up with that?” I asked.  “I thought you liked the songs about love.”

“Well, love is too weird,” he explained.  “When people are in love, they have to kiss!!”

I just smiled.  I can’t change Aaron’s mind about love being weird, but what he doesn’t know is how much he is loved.  He knows it, but he doesn’t know it.  Does that make sense?

Good days……bad days……laughter……frustrations……joy……worry……fun……anger.  We have it all with Aaron, magnified on most days. 

But when we’re feeling like singing “Song Sang Blue” on one day, there are many days that we’re singing a love song about Aaron.  But don’t tell Aaron.  He’ll think it’s weird……and then give us another sharp slap……

And it’s back to “Song Sang Blue!!!”

 

 

Who Is Aaron Supposed to Be?

I love this picture I found on FB this morning. 

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Aaron certainly has opened our eyes to a whole unique and special way of viewing his world…..which becomes our world as Aaron pulls us in, willing or not.  It doesn’t matter to Aaron if I am busy or tired or embarrassed or if I’ve heard or seen the same thing a zillion times.  To him, each experience seems refreshingly new and fun and definitely shared.

Like yesterday at the grocery store.  I decided to run back to the produce section after I saw the pretty cantaloupes in a fellow shopper’s cart.  Aaron loves everything about the grocery store, except maybe for the aisle with toothpaste and body wash.  If you lived with him awhile, you would see that those items are not a priority or an interest of his.  Unfortunately.

Anyway, I was examining big round cantaloupes while Aaron was pointing out the cool, spritzing water that was spraying over the vegetables nearby.  You would think that this was the first time he had ever seen this gentle spray, but it isn’t.  It’s probably the 753rd time I’ve told him what it is, but he was as excited as if he was seeing it for the first time. 

I turned and headed for the registers after deciding against any cantaloupes.  I knew that Aaron was lagging behind.  I was already in the florist section when I turned to look for Aaron.  There he stood, large and loud Aaron, holding up an artichoke.  His face was just a huge smile as he held his prize up for me to see.  I had to smile, too, standing there among the sunflowers and daisies.  What is it about artichokes that always, always grabs Aaron’s attention?  We have examined them, cooked them, and researched them…..but still Aaron will find those artichokes and hold one up for me to see as if it’s the very first artichoke that we have EVER encountered. 

I smiled and then shook my head no as several surrounding people were turning their heads to see who Aaron was showing his artichoke to.  I could see them making the connection……wondering, I’m sure, about Aaron. 

Maybe if we all saw our world through Aaron eyes, we would smile more and laugh louder and keep our curiosity sharper, even as we age. 

So let me share with you a few snapshots of Aaron in his world.

Making a funny face while we played Skip-Bo, trying hard not to laugh:

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Putting a clothes pin on his earlobe, which is totally nothing new…..but you wouldn’t know that if you looked at how intense and serious he was on this night.

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Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.

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Waiting for me to go through the Wal-Mart line, and smiling like this when I looked up and saw WHERE he decided to wait……the chair at the bank desk. 

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Noticing after he got his teeth cleaned that the digital clock on the counter was flashing.  “Your clock is destroyed!” he exclaimed as he pushed by his hygienist and tried to fix the clock.  Incorrect time is intolerable!

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Recovering from three strong night seizures.  We had to cancel his therapy appointment, which to Aaron meant cancelling our lunch plans.  I was nervous about taking him into a restaurant, fearing another seizure, so instead we went through the drive-through window at Little Caesar’s and got him pizza AND breadsticks.  He was happy.  I was happy.

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And finally, sunflowers.  Aaron has wanted sunflowers for such a long time, so this summer while I was in Houston to see Andrea, he and Gary planted sunflowers around our garden.  He has watched them grow and grow and grow, until now they are much taller than he is.  Now he can’t wait for them to bloom.  He was looking at the sunflowers one day when they were much smaller.  “When are they supposed to be the size they’re supposed to be?” he asked.

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I smile at the way he phrases things.  His unique way of expressing himself is a big reason I started this blog.  I can remember wondering, when Aaron was much younger, how he would turn out.  In a sense, I wondered when Aaron was supposed to be the Aaron he’s supposed to be – to borrow Aaron’s wording. 

Well, Gary and I pretty well know that Aaron is now the Aaron he is supposed to be.  Some days that can be discouraging, I’ll admit……on the seizure days or on the hard behavior days or on the days when we are tired and really don’t want to see another artichoke.  Yet Aaron is who he is supposed to be because he is who God created him to be. 

But God gives grace when we need it the most.  He really does.  I don’t think I even realize sometimes in just what forms His grace comes to me.  Yet I do know, often in retrospect, that making it through the frustrations……the fears……the failures…..is the hand and the grace of God upon us. 

And I am so thankful that God gives me pause more times that I can count……moments to pause and enjoy Aaron’s world through Aaron’s eyes.

So you see that the sunflower in the above picture is just too perfect.  Aaron is waiting for his sunflowers to be the size they’re supposed to be and to bloom.  Gary and I see that Aaron is who he is supposed to be, and that every day he blooms in our lives, teaching us to see the world through different eyes. 

I pretty well know, too, what Aaron would say if he looked at this sunflower picture.  “What?!” he would probably say.  “That sunflower is wearing shades!!”

Better to see you with, Aaron.  Better to see you with. 

 

 

 

 

God, Are You Listening?

Gary and I are far beyond the baby years, and we have no grandchildren yet, but we still sleep with a baby monitor beside us every night.  It sits on my nightstand as we listen for Aaron’s nocturnal seizures.  It sure is a handy tool to have!  Most of Aaron’s seizures are at night, in his sleep, so the monitor enables us to hear him and to go help him. 

Aaron never remembers his seizures, which is a blessing.  But he has seen others have seizures at his day group, so he has seen what they can be like.  And he is well aware of how he feels afterward, with a terrible headache or nausea or waking up in a wet bed.  Sometimes he loses his sense of taste for a day or two.    It’s a reality of his life that he accepts remarkably well……probably much better than I do.

In the last couple years, though, Aaron has shown a degree of fear concerning his seizures.  He’s not one to sit down with me or Gary and verbally express his fears.  But every single night as we go through his bedtime routine, he asks me two questions.

First:  “Mom, is it going to rain tonight?”  He just must know if it’s going to rain.

Second:  “Mom, are you turning the monitor on?” 

Sometimes I beat him to it and after our goodnight hug I answer those two questions before he can ask them. 

“Good night, Aaron.  Sleep good.  I’ll see you in the morning.  Love you!  And it’s not going to rain, and I will turn the monitor on.”

But if I’m going downstairs to fix the coffee pot or whatever, Aaron always says, “Do you want me to bring the monitor down to you?”

And on many nights, just for extra measure, we will hear Aaron walking up the hall and barging into our bedroom if the door isn’t locked.

“Mom, is the monitor on?  Is it on right now?” he asks.

Sometimes when I’m extra tired I get impatient with this routine, and then I feel guilty about it.  That’s because I know why Aaron is so concerned about that monitor.  I asked him about it once, knowing that my questions can put thoughts into his head, but still wanting to hear what he had to say.  So I asked him if he was scared of having a seizure, and he told me that he was.  We didn’t talk deeply about it, but his answer was enough to pull at my heart and make me think as I often do about how I would feel if I was in his shoes.  Seizures are definitely scary, and Aaron most definitely wants me or Gary there with him if he has one.  Of course he does.  I would feel the same way.

So every single night, and also for every single nap on days that he is home, I make sure he knows that the monitor is on and that I am listening.

The monitor did its job last night…..three times, actually.  Aaron’s first seizure was a little after 11:30, and then two more followed during the early morning hours.  He’s sleeping on the couch now – has been for a few hours since he woke up before 6:30 to discover his condition, change pajamas, and make his way downstairs.  He took his morning meds and went right back to sleep, waking up awhile ago to ask for his cups of coffee, and then back to sleep again.  Seizures take such a toll on his body.  They take a toll on my heart.

But this morning…….as God always, always does…….my heart was comforted by reading from the book of Psalms. 

“He who keeps you will not slumber.  Behold, He who keeps Israel will neither slumber nor sleep.”

I can hear me now. 

“God, do You have your monitor on?  Are you listening in case I need you?”

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And God, Who is always patient with me, tells me once again that He doesn’t slumber or sleep.  Did you know that “slumber” means “nodding off?”  Like I do sometimes while Aaron and I are watching Wheel of Fortune…….and then Aaron yells, “MOM!!!  You’re not watching!!!” 

But I don’t have to do that with God…..and neither does Aaron.  God won’t sleep deeply and He also won’t even nod off.  He’s standing by Aaron’s bed with me during every seizure.  Then He stands by my bed when I lay back down and try to go back to sleep, which is often hard to do.  He knows my fears for Aaron and He understands my hurt for him, but He also reminds me that His plan is sovereign……His plan is best……even if His plan isn’t understandable to me. 

It’s just really comforting to me to know that God never sleeps, even at night, and that He is beside me as I stand beside Aaron.  And when I feel uncertain and ask Him once again if He’s really there……if He’s really listening…….He just gently reminds me that He is always there and He is always listening.  

God’s just a very good Father to me and to Aaron, and to each of us who know Him.  Even if our view of Him is through our tears and our fears, we know that God is right there with us through it all.