Category: Epilepsy

Love, With a Little Sad

Recently, Aaron has been listening to the Phantom of the Opera movie soundtrack.  He has seen the movie and heard the music before, especially listening to the CD over and over.  But time has gone by, and Aaron doesn’t remember what the story is about.

During lunch a couple days ago, as he asked questions and I told him the story, I realized once again the sadness wrapped up in the Phantom’s life.  I couldn’t hide it from Aaron if I was going to tell the story correctly.

“You know, Aaron,” I finally said, “it’s really in many ways a sad story.”

Aaron thought for a minute.

“You have to see it as love,” he said.  “Love with a little bit of sad.”

His comment blew me away.  I was legitimately speechless.

I’ve thought a lot about what Aaron said.  I realize that he, in those few words, so perfectly described our life with him.

This life of parenting a special needs child is not a cake walk.  Yet we know that what God has allowed in our life is for a reason…and God’s reasons are always good.  Maybe His reasoning doesn’t make sense all the time, but God is good in all that He does and allows.

Gary and I have choices to make every day as we parent Aaron.  Yet no matter what moments we face each day, we love Aaron fiercely.

What is our focus?  Is it love, or is it sad?

We can’t ignore the sad.  That would be denial.

We’re sad when Aaron has seizures.

Sad when sometimes those seizures cause serious injuries.

Sad when his seizure meds make him so sleepy and tired.

Sad when he must be poked with needles so often.

We’re sad when his behaviors break his own heart.

Sad that he still refuses to travel to meet his new nephew.

But wait.  I need to remember what Aaron said.

Love, with a little bit of sad.

We want our life to be lived with a major on love and a minor on sad.

Like the love we felt for him last night as we stood outside watching the beautiful lightning to the west, hearing the distant thunder along with Aaron’s deep happy chuckle.  

Seeing the love he has for animals of all sorts.

The way he takes huge delight in the unusual.

We love the joy he shows in sharing.

And the big smile he gives when I pick him up from his day group.

I love how he looked on the exam table at his last doctor’s visit, reading his UFO book that he couldn’t wait to show his doctor.

I love how he leans way over to listen to the music that comes out of the self-checkout register at Dillon’s, oblivious to all the stares.

I love his random love notes. 

 

And that he’s willing to take an occasional picture with Mom.

I love looking out the window and seeing this scene.

I love that behind every hard, frustrating, stressful, and sad moment…I can hold on to this fact – that God has given us our special Aaron to love and care for.

We have to see it as love…love with a little bit of sad.

Photo Worthy

We just finished the Thanksgiving season with all the family gatherings, delicious food, and lots of photo opportunities.  Now the oranges and golds are being replaced by the reds and greens of Christmas.  More pictures to come, for sure!

Already our social media is brimming with the pictures that others are sharing of their Christmas decorations.  So much beauty and creativity!  I love doing that every year, sharing the warmth and glow of the season.

But the brightness all around us, even if we only see it in a photo, sure can make the other side of life seem even darker than usual.

Other’s picture-perfect moments, if compared to some of ours, seem off-the-chart wonderful…and ours.  Well, the line on our chart is going in the opposite direction.  Way down.

Several years ago, I saw this picture of Mary and Joseph after the birth of baby Jesus.  It’s probably the most accurate portrayal of the nativity that I have ever seen.

The call of God on their lives to be the earthly parents of Jesus came at a huge cost to them.  They knew that their reputations would forever be tarnished.  Gossip and judgmental stares would be their lot. 

But can you imagine the long trip to Bethlehem for the census?  The discomfort, hunger, dirt, and fear? 

Then the baby being born in an animal stable.  We don’t know for sure, but did they have help delivering baby Jesus?  How Mary must have wished for her mother to be beside her! 

Can you imagine how alone they must have felt?  No family that we know of to surround them with love and care.  No beautiful nursery ready for baby Jesus.  No comfort of a soft bed for Mary or Jesus.  No kitchen full of food, or a meal train at the ready.

Joseph and Mary submitted without reservation to God’s call on their lives.  That special call might seem sweet and incredible to us but to them I can pretty safely assume that on most days it was anything but that.

Over this past week, mixed in with all the beautiful pictures of family gatherings, I was receiving other pictures from our dear friends.

 Dan and Wendy have loved and cared for their Elijah (Speedy) for many years.  Speedy has an extremely severe form of Epilepsy.  He was hospitalized yet again during Thanksgiving, for six days.

Lots of tests.

Still, lots of unanswered questions.

Always, always there is so much love from these amazing parents for their Speedy.

But the pain…the grief…is so real. 

Raw…and deep.

Wendy and I talk a lot.  We speak the same language that comes from special needs parenting.  We can be real with each other.

We understand what Dale Davis was saying in his commentary on the book of Luke when he talked about the benediction in Hebrews 13:20-21…about the part that says may God “do in us what pleases Him.”

That part is scary because we don’t know what it is that will please God.

Can we be like Mary, though, and submit to God’s will for our lives?

“May it be done to me according to Your word,” Mary replied as she was called to be the mother of God’s Son.

“Submission is preferable to consolation, for consolation pleases us, but submission pleases God.”  (Thomas Hog, 1692)

Let that sink in.

There are so many times that I would far rather have the photo worthy moments of family and fun and excitement and adventure and beauty to be the posts of my life.

Not the incomplete family photos. 

Not the tiredness…anger…frustrations…comparisons…resentments that often accompany this special-needs life.

How about you?  What is it in your life that you feel isn’t photo worthy? 

What would you gladly trade in for a more beautiful shot?

Somehow, though, I know that God looks down on our broken and He sees the very people and things that bring Him the most glory and the most joy.

He sees way beyond this temporal into a plan for each life that goes far beyond what we will ever know on this old earth.

And that’s what is eternally photo worthy.

The Sudden Dark Clouds

The other morning, I looked out my favorite upstairs window and saw this very pretty sky.  The puffy clouds and the sunshine reminded me of summer.

Not long after, however, I noticed from another room that it seemed darker outside.  I went back to the window and was shocked at what I saw.

Whoa!  In such a short time the scene had totally changed.  We went from bright and happy to dark and foreboding very quickly as a cold front began blowing in.

I have had those sudden dark times in my life. 

That Sunday years ago when our normal day turned into terror as Aaron lay on our kitchen floor, seizing violently.  The blur of a frantic call to the medical clinic…the ambulance…the German children’s hospital.  The stabs of deep fear mixed with the frustration of the language barrier and the culture that was in many ways unfamiliar. 

We went from worshipping God at church that morning to being blind-sided by a situation that we were totally unprepared for.

But let me tell you that Psalm 18:28 is true!

            “The Lord my God illumines my darkness.”

He was there with us in that foreign hospital room, during all the tests, and the diagnosis…and He has not stopped walking with us on this road of special needs.

My prayer list keeps getting longer with names of so many who are hurting and struggling through various sudden changes.

Gary’s cousin, now a much-too-young widower whose precious wife collapsed and was gone.

A friend’s daughter…a young wife and mother…fighting cancer.

A cousin and a friend recently widowed.

Jobs ended.

Marriages over.

Cancer returning.

Listen to what else David says in Psalm 27:1:

            “The Lord is my light and my salvation; whom shall I fear?”

God brightens the unknown!

His light shines brightest in the dark.

His character positively glows in our deepest hurts and with our tear-stained cheeks.

And we have no reason to fear because He is fighting for us.  Psalm 27:1 continues:

            “The Lord is the defense of my life; whom shall I dread?”

I love the song, Blessings, by Laura Story.  Read the lyrics:

We pray for blessings, we pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand

To ease our suffering

And all the while, You hear each spoken need

Yet love us way too much to give us lesser things.

‘Cause what if Your blessings come through raindrops?

What if Your healing comes through tears?

What if a thousand sleepless nights are what it takes to know You’re near?

And what if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear

And we cry in anger when we cannot feel You near

We doubt Your goodness, we doubt Your love

As if every promise from Your word is not enough

And all the while, You hear each desperate plea

And long that we’d have faith to believe.

‘Cause what if Your blessings come through raindrops?

What if Your healing comes through tears?

And what if a thousand sleepless nights are what it takes to know You’re near?

And what if trials of this life

Are Your mercies in disguise?

I saw this beautiful scene a short time later, after the scary dark clouds had gone away, and I was reminded that God is still our light and our salvation.

Don’t fear, dear ones.  God is still there in the clouds, and He WILL illumine your darkness with His sweet presence.

The Flip Side

I’m old enough to remember 45 rpm records.  On one side there was the recording of a major hit, usually a #1 song.  But then there was the flip side.  The song on that side wasn’t known well or at all, usually, and wasn’t talked about nearly as much as the other popular song.  Everyone wanted to listen to and talk about the fun, well-known song.

I started writing about Aaron and our life with him over 10 years ago.  My desire was, and still is, to show the amazing way that Aaron thinks and especially speaks.  I wanted others to see the absolutely unique and often hilarious way that Aaron expresses himself in order to gain an appreciation for all those with autism.  I love sharing our life with Aaron, especially the laughter and the wonder that he brings to us.

Yet there is a flip side, just like those 45 rpm records.  I have written about it many times over the years but don’t want to focus on the negative.  Just like the popular #1 song, it’s fun to hear the funny side of our life.  But that flip side is just as much a part of Aaron as the other preferred side.

Yesterday morning the song on the flip side was playing loud and clear at our house.  I didn’t turn Aaron’s record over.  Believe me, I far prefer that first side!  But turn over it did! 

For some background, most autistic persons have obsessions that they have a hard time…or totally cannot…control.  Some obsessions seem to be permanent, and others might come and go. 

One cannot tell an autistic OCD person to “just get over it” when he is obsessing over his obsession.  I may as well tell one of Aaron’s friends in a wheelchair to just climb up our stairs.  It’s not going to happen.  And neither will Aaron “just get over” the angst that he experiences when one of his obsessions becomes disrupted.

During the past two years, a staff member at Aaron’s day group has taken him to Quik Trip to buy whatever he wants to eat.  It has become THE highlight of Aaron’s day.  He is completely fixated on this fun, simple outing.  Often some of his friends go as well, which makes it even more fun for Aaron.

So, there is the obsession.

Now for the disruption.  A meeting. 

Meetings to discuss Aaron’s services, plans, health, etc., are a necessary part of every year. 

Aaron hates meetings.

The only meeting he likes is the one with his case manager because we gather at Carlos O’Kelly’s for lunch.  Aaron cares not about one word that is said at the meeting.  He is too busy eating yummy food and trying to monopolize the conversation. 

I had told Aaron that we were having a zoom conference on Wednesday morning at his day group.  I told him it wouldn’t last long and that he wouldn’t even need to be present for the entire call.

But on that morning, nothing mattered but Quik Trip.  He was super angry before he even got out of bed.  Nothing I said helped him.  He was sure that QT was out of the question…sure that this dumb meeting was going to keep him from QT…positive that his day was completely ruined with no QT…very angry that he had promised Myra she could go to QT but now it wouldn’t happen…what would Antoine think about not taking Aaron to QT…

On and on and on he went, accelerating into yelling.  He broke his closet door.  He hated this meeting.  He hated me. 

Then he cried.  If Aaron cries, he is genuinely and deeply upset.

I texted Barb at Paradigm, who can calm Aaron like no other.  She facetimed with Aaron, and he started settling.

As I fixed my hair a short time later, Aaron walked in the bathroom, fresh tears in his eyes.  In a voice thick with emotion and with total sincerity, he said, “Mom, I’m sorry.”

Then tears filled my own eyes.  I was spent but I was so touched at his apology, especially since I had not asked for one. 

I gave him a hug, which he allowed to last for maybe three seconds before he squirmed out of it.  😊

So why am I telling you all this? 

It’s not because I like talking about Aaron’s flip side.  But this is our reality, especially Aaron’s reality. 

And the reality for so many other families that I know. 

Seizures are hard.  Other health issues are hard.

But behaviors…they are in many ways the hardest.  What a toll they take on the Aaron’s of the world, and on the families who care for them and love them.

And on the staff at all the places that also care for our special ones.  Imagine having dozens of persons together, many of whom have these OCD issues and meltdowns.  I saw one yesterday when I was at Aaron’s day group, and I saw the response of the staff.  Being spit on and kicked is not pleasant yet these amazing people stay the course.

Seizures cause brain damage that worsen the situation.  Seizure meds compound the problems with side effects that include worsening behaviors. 

How complex these things are!

How life-altering for the families!

How we love Aaron! 

We hurt when he hurts.  We struggle when he struggles.  We mess up and need to ask his forgiveness, as well. 

We all need grace, God’s and each other’s.

I have to fill out this behavior chart about the whole hard ordeal.  Stats and records must be kept.

What can’t be measured in any metric or logged on any chart is the love we have for Aaron and that he has for us when the dust has settled and the tears are gone.

I wish I could check a box that explained his sadness at his own behavior.  One that would record his heartfelt apology, the tears in his eyes…in my eyes…and the lasting impact that yet another hard moment has left with us.

I’m thankful that God knows and that He gives His grace for each day.

And thankful for our complex and amazing Aaron…both sides.

I Can’t Wait!

Waiting patiently for anything is not a strong suit of Aaron’s.  Whether he is waiting for me to get off the phone or waiting on a huge surprise, it doesn’t matter.  Patient waiting is a foreign concept to him.

This is why we often don’t tell Aaron of an upcoming event until shortly before it actually occurs.  Too bad he knows when his birthday is because he is in planning mode for months before the big day. 

Earlier this year, a big dinosaur exhibit was coming to town.  Gary and I decided to take Aaron and to make it a surprise, more for our sake than anything.  The big day came…tickets were bought…plans were in place…and finally I told Aaron that we were taking him on a surprise adventure. 

It wasn’t THAT long before we were leaving that I broke the exciting news to him, but oh my goodness!  I quickly realized that I should have waited until we were in the van and on our way before uttering a word about our surprise trip.

Aaron can hover better than any hummingbird or helicopter.  He hovered outside my door as I got ready.  He knocked and knocked on the door, asking if it was time to go yet.  He lingered outside the bathroom door as I dried my hair.  He stood right beside me as I brushed my teeth, asking questions and wanting me to answer even with a mouthful of toothpaste. 

“Aaron!!” I finally said, “quit being so impatient!!  Leave me alone and let me get ready.”

I enjoyed a few moments of blissful quiet…until he once again knocked loudly on my door.

“But MOM!!”  he exclaimed, “I don’t have anything to DO while I’m being impatient!!”

Let me say, I am so much like Aaron when God has me wait for something, especially something that I have prayed about for a long time.

Look at Isaac and Rebekah.  Isaac married Rebekah when he was 40 years old.  No children came, however, because Rebekah was barren.  In Genesis 25 we read that Isaac prayed on behalf of Rebekah and she conceived.

But guess how long it was before that happened?

20 years!

YEARS!!

Can you imagine the disappointment, over and over and over?

The sadness?

The comparing themselves to others who had HOW many children during the time that they waited…and waited…and waited on God to keep His promise.

As Dale Davis points out in God’s Rascal, The Jacob Narrative, Isaac’s non-chosen brother Ishmael had 12 sons.  What’s up with that?!

But Isaac didn’t just idly or impatiently wait.  We’re told that he prayed on behalf of his wife. 

The Hebrew term used there means that Isaac didn’t just pray FOR his wife.  It indicated that he prayed in front of her…in her presence.

I found Isaac’s action in prayer to not only be very encouraging but also very precious.  He led Rebekah and he joined her in her pain…in their pain…as they waited for God’s answer.

Sometimes things seem so hopeless.  We don’t see answers coming.  It’s so easy to lose heart, especially when we have prayed and prayed and prayed.

I love this verse.

Right now, Aaron is laying on our couch downstairs.  He had three seizures this morning.  He is almost 38 years old and has had seizures since he was 7 years old.

I look at him as he ages, and I see the effect of all these years of seizures…of the toll they have taken on his body and on his mental abilities. 

But I know that as much as I love Aaron, God loves him even more.  And God loves me. 

He loves us and He has a reason that I will probably never know on this earth for all that Aaron has suffered.

So, I cry out to God.

And I know that God’s inclination is to lean down and hear my cry. 

Isn’t that a precious picture?

He joins me in my pain and in my waiting.

Am I always patient as I wait on God?

No!

But unlike Aaron, there IS something I can do while I’m being impatient and that is to pray.

And to praise, as David continues in Psalm 40.  Sing a new song of praise, which will be a testimony to others.

After all, “How blessed is the man (or woman) who has made the Lord his trust.”  (Psalm 40:4)

Gotta run.  Aaron is awake now and is planning our evening already.  😊 

Under the Quilt

I heard Aaron’s first seizure at 12:38 this morning.  The second was at 2:37.  As I often say, Aaron would appreciate that I am using the precise time. 

Not long after 4:00 I heard him rustling.  It wasn’t a seizure.  I listened and knew that he was out of bed.  He went to the bathroom and then back to his room.  I heard his door close. 

I got up and went to his room, fairly sure of what I would find.  He had changed his pajamas and was getting ready to climb back into bed.

His sheets were wet.  Bed wetting seizures are common to Aaron. 

I had him sit in his desk chair as I changed his sheets.  He watched my every move, as he is not only bent on using precision with his time keeping but is also particular about his bedding being just right. 

I was thankful for waterproof mattress pads, and that we keep an extra one on hand.  Thankful for extra sheets and blankets, and for our washing machine and dryer.

There sat Aaron.  He was flicking his fingers together as he so often does now, more and more.  There was some dried blood on the corner of his mouth where he had bitten his tongue during his first seizure. 

He kept telling me that his head hurt.  He wondered if he would have to go to his day group. 

It always breaks my heart to see him like this.  Broke my heart, too, as I asked him if he would have slept on wet sheets if I hadn’t come in there.  He said yes because he didn’t want to wake us up. 

I told him he never ever had to sleep on wet sheets.

I was finally done with his bed.  It’s a stretch for Aaron to lay down under different covers than his usual ones.

“I want my Mario blanket,” he said as he looked at his bed all covered in a blanket not his own.

“But it’s wet,” I told him.  “Here, I’ll get you another blanket to use.”

I walked out into the hall and opened the linen cabinet.  I saw the quilt that we have had for many years and knew that the weight of it would be a comfort to Aaron.

As I carried it to his room and arranged it on his bed, I was thinking about the sweet memories of this quilt.  It was a wedding gift to me and Gary, made 44 years ago by the dear ladies at Needham’s Grove Baptist Church in Needham’s Grove, North Carolina.  My brother pastored there. The women in the church had gotten to know me while I was in Bible college not far away and would often visit on weekends.  

Finally, I was finished with Aaron’s bed.  He surveyed it as he stood up from his chair.  I smiled as he immediately pulled out some wrinkles in the quilt before he walked around to get back in bed.  He snuggled under the covers, and I pulled them up around his face, a soft smile of contentment visible on his lips. 

It wasn’t even 30 minutes later that I heard another seizure.  As I stood beside his bed, I looked at that special quilt again.  Each stitch was sewn by hand…hands of women who loved the Lord and loved to give. 

All those years ago, I had no idea what our life would hold.  We were dreamy-eyed newlyweds with our whole life before us. 

And now, under the quilt that we used to lay under, lay our special Aaron.  Never would I have imagined that we would still be caring for our 37-year-old son…that the quilt that covered us now covered Aaron.

I don’t know or understand the reason for any of it. 

But I do know my heavenly Father.

And I do know that He has stitched every little piece of my life and of Gary’s life and of Aaron’s life. 

God has stitched it in order to create a beautiful work.

Not an easy work.  And not the one I would have chosen if He had let me. 

But do I trust Him?

And if I do, at what point do I stop trusting?

I either fully trust God, or I don’t.

That means, that even through tears and disappointments and frustrations and exhaustion, I trust the God Who has promised to direct my steps.

Who has promised that “underneath are His everlasting arms.”

I am never lower than His arms that are always under me to hold me up.

And neither are you, my friend, if you know and trust this God Who loves you so much.

Who gave His own Son, Jesus, to die for you.

And Who is meticulously stitching the fabric of your life…of my life…of Aaron’s…into a work of art.

I want to rest under that quilt, handmade by God.

Planted For Purpose

I visited a local nursery a few months ago to buy vegetable plants for our garden.  I took Aaron with me, hoping that he would enjoy seeing the various goodies that we were going to plant in our garden.  But Aaron had eyes for one thing only – sunflowers!

“MOM!!” he exclaimed as I stood at the counter to pay, “can I get some sunflowers?” 

I turned to see him with the packet of sunflower seeds already in hand, so I agreed.  He watched carefully as the cashier scanned the small package, all the while talking excitedly to her about how we were going to grow SUNFLOWERS!!

We decided to plant the little seeds between our house and our neighbor’s house, near her raised garden beds.  This way, their children could also enjoy the sunflowers.  Amanda loved the idea, so one afternoon Gary dug the holes…I handed three seeds to Aaron to plant in each hole…and Aaron bent over to place them in the ground.  We covered them up and went about our day.

Aaron wanted those sunflowers to be growing the next day but growing takes time.  Growing takes lots of patience.  One day, though, we saw the tiny shoots emerging from the ground!  Aaron was SO excited!  Over the next weeks we watched each little bitty plant become more and more established.  They grew!

But not into the huge sunflowers that we have had in the past.  These seem to be smaller sunflowers, or maybe they are responding to the harsh heat and the dry weather we have had.

Then one day, Amanda texted me with some exciting news.  We had a bloom!  Later, Aaron and I walked out to the row of sunflowers and sure enough, there was one bloom.

I noticed something that day.  The pretty sunflower that had been the first to bloom was the smallest of the others in that row.  Its flower wasn’t large and impressive like ones you typically see in Kansas fields. 

Yet the happiness that our little blooming sunflower gave all of us was huge!

Sometimes I feel like my life is that of the small sunflower.  Others are living more impressive lives similar to the taller sunflowers that stood on each side of our shorter plant…lives, quite honestly, that I thought I might have.

But God has taken that measly sunflower that bloomed first and has used it to reinforce a lesson I know well in my head but don’t often practice in my heart.

Yesterday God gave me a verse that says it perfectly, as only God can:

        “The Lord has made everything for its own purpose…” (Proverbs 16:4)

God has planted me where I am for a purpose.

And more importantly, God has planted Aaron in my life for a purpose as well. 

If I believe in God’s sovereignty…and I do…then I must also believe that every area of my life is sovereignly planned with purpose by Him.

My idea of great purpose is usually not God’s idea.

Yet God’s idea is always best and right.  Not always easy or even fulfilling on many days…but always best.

I can live a life that shines for God as I care for Aaron, or I can live a stunted life of anger and questions and comparisons to others.

I can see Aaron as a weight that keeps me down, or I can see Aaron as a means of experiencing God’s joy.

I can bloom or I can wither.

And here’s the catch.  Often no one…NO one…sees my bloom.  I feel like my life has no purpose.

But God clearly says that He has made everything for its own purpose.

I am to bloom brightly for Him, not so that my bloom will necessarily be seen and admired by others but so that I will grow in grace and be more like Christ.

So, little sunflower, I am thankful that you were planted where you were.  I’m thankful for yet another lesson that God planted in my heart using the least of these.

May I live a faithful life no matter how small I think it might be.

Little Huge Gifts For Mom

Last night Aaron and I were headed downstairs to watch a couple shows before bed.  This is our nighttime ritual.  He gathered his blanket, his drink, his new bag of cheese cubes, and his empty bowl in which his cheese cubes would soon be poured. 

Speaking of ritual, Aaron’s life is full of those.  Something as simple as putting his blanket over his outstretched legs requires the ottoman to be just right, his legs on the ottoman while still wearing his slippers AND slipper socks, and then the blanket shaken several times to get out as many wrinkles as possible and to be in just the perfect position to then be pulled up over his legs and onto his lap.  I always cringe when he realizes he has forgotten something because the blanket is thrown back, and the process must be repeated. All of this must occur before we start watching our program. 

Sigh.

After he was sufficiently settled last night, he opened his bag of sharp cheddar cheese cubes and poured them into his bowl.  Aaron will not eat out of the bag.  He must have a bowl for everything, including a bowl for chip crumbs…croissant flakes, as he calls them…the crackers he doesn’t like in his Chex Mix…his Red Hots…peanut shells…  The list is endless. 

Soon our show was on and Aaron was allowed, in his mind, to begin eating his cheese cubes…but only after the opening song was finished.  One does not actually start eating, my friends, until the program has actually begun. 

The store only had sharp cheddar cheese cubes when we went to buy them.  Aaron usually gets mild cheddar.

“So do you like those sharp cheddar cheese cubes, Aaron?” I asked.

“YEAH!!” he declared happily.  “They’re GOOD!”

Soon, without saying a word, he reached over and placed this lone cheese cube beside me.  It was his gift to me.

I’ll be honest.  Sometimes eating food that Aaron has handled can be a challenge for me.  I know where those hands of his may have been.  I see how he puts food into his mouth with those same fingers that are now on the food he wants to give me. 

But how could I say no to this little gift that came straight from his heart?

To Aaron, this little cheese cube comprised a huge gift for Mom.

“Awwww, Aaron, thank you!” I told him as I looked down at the little cheese cube. 

“Oh, Lord, please protect me,” I also added silently as I ate the cheese.   😊

Aaron rubbed his hands together and gave his guttural chuckle as I ate the cheese. 

He was even happier to give me that gift than I was to receive it.

What a small little thing a cube of cheese is!  But what a huge deal it was to Aaron to give it and to watch me receive it with thankfulness.

This long-term mothering of Aaron is full of those sorts of gifts, but often if I’m not careful I don’t see them as such.

I never planned to be actively mothering at this age.  I read that I am considered “elderly” now, though I don’t feel that way.  Yet numbers on paper say that I am.

How can I be this age and still going from morning to night mothering my grown child? 

But here I am, by God’s doing…and may I not ever forget that.  God has led me to this path, and I must trust Him as I walk each step. 

On this Mother’s Day I want to give to each of you who are still fully mothering in your older years a word of love and encouragement.  Whether you are mothering your own child or children, or your grandchildren, please know that your work is not unnoticed by God.  We honor Him by caring for the ones He has given us.

May we see each small milestone…each smile…every hug…and so many other small huge gifts as what they really are.

Gifts from God. 

Through our tears, our fears, our frustrations, our exhaustion, our envy of other’s lives…whatever we are going through – may we not miss those beautiful and small huge gifts around us from our children every day.

Go buy a bag of cheese cubes and have a very Happy Mother’s Day!

Feeding on Faithfulness

One of Aaron’s favorite things to do in all the world is to eat out at a restaurant.  The promise of eating out makes every doctor visit or dental procedure totally worth his time. 

Aaron might vary a little in what he will eat at the different restaurants that we visit, but always…if possible…he will order a side salad with “no croutons and two ranches.” 

And often he will order another of his favorites…French fries!

Not long ago, while he munched on his fries at lunch, he had an idea.

“Mom?” he asked, “can we make French fries?”

“I kind of made them last night in the air fryer,” I answered as I reminded him of the potato wedges that we had eaten.

“I didn’t see them that way,” he responded.

I smiled at Aaron’s response. 

He has, yet again, given me something to ponder.

A couple blogging friends mentioned Psalm 37 last week.  I decided to read slowly through that wonderful Psalm in the mornings after my regular Bible study.

Verse 3 jumped out at me.

“Trust in the Lord and do good; dwell in the land and cultivate faithfulness.”

Guess what the word ‘cultivate’ means?  It means to ‘feed on.’

Dwell in the land and feed on faithfulness.

‘Dwell’ can also mean ‘rest.’

The land is wherever God has put me. 

So, I am to rest where God has put me and feed on faithfulness.

That sounds pleasant at first glance.  But what if the place God has put me is less than ideal? 

What if it’s just downright hard?

Fact is, God didn’t say that I am to be faithful when my pasture is lush and green…when my place in life is fun and easy and fulfilling.

He just said to dwell there in the pasture where He has placed me…stay…rest.

And while there, feed on faithfulness.

Here I am, approaching the age that I used to think was REALLY old, and I am still in a large sense raising a child.  This time of my life was what I used to hear being referred to as having the time of my life. 

Empty nest and all that.

Hasn’t quite worked out that way for us.

But I can’t deny the fact that God didn’t qualify the type of land He would ordain for me.  He just told me to rest there.

And to feed on faithfulness.

You see, we can all be faithful where we are.  The form it takes is what sometimes trips us up.

Caring for Aaron, in all the shapes that caring takes, is me feeding on faithfulness.

But many times, I’m like Aaron as he compared the air fryer potato wedges to French fries.

I don’t see it that way.

I don’t see managing Aaron’s medicines, doctor visits, tons of paperwork, or driving him everywhere as having a lot to do with my faithfulness to God.

I most definitely get tangled up in tiredness and complaining as I work to keep him fed, active, happy, encouraged, and clean.

Sadness at seizures and frustration during behaviors jerk my emotions in all directions.

And as the days turn into weeks and the weeks into months and the months into years, it sure is easy to lose the sense of living in faithfulness to God.

Seems like I often compare my grass to others, and usually theirs is so much greener than mine.

Their feeding on faithfulness seems exciting and fun.

Mine?  Pretty dull and daily.

And often dirty. 

But something I’m learning…ever so slowly…is to look up to God when I feel like looking over to someone else’s land.  Keep my focus on my Shepherd and on the land He has given to me.

To see every tiring moment as an opportunity to trust Him, to do good, to rest in this place, and to feed on faithfulness.

To remind myself, at the end of another tiring day, that God smiles on my faithfulness. 

“I didn’t see it that way, God,” I often think.

“Oh, but I did, my dear,” God whispers. 

And I rest.

Remind Me That I Love You

Mornings for Aaron are definitely the time of day that he struggles the most.  It can really be hard for him to get out of his warm bed and face the day.  Not every morning is difficult, but let’s just say that for Aaron the majority of mornings do not have a right side of the bed.  Both sides are wrong!

Aaron realizes this about himself.  Therefore, sometimes he will tell me to give him a morning reminder that will hopefully help him to be cheerful.  The reminders are about something that the day will hold…something that he is looking forward to and so will encourage him to get up happily. 

For instance, he loves going to Meals on Wheels on Thursday mornings but sometimes he knows on Wednesday night that he may be grouchy the next day.

“Mom,” he says, “tomorrow morning if I don’t want to get out of bed just say Buster.’’

Buster is the little dog at one of our homes that Aaron loves to see and to pet.  And Buster loves seeing Aaron. 

Or on Valentine’s Day, when we were going to pick up roses to take to his day group friends, he knew the night before that he might be irritated about getting up.

“Mom,” he told me, “if I start getting mad in the morning just say roses.”

I love Aaron’s plan of action.  I know he truly does want to be nice in the mornings.  Sometimes his plan works, and well, other times it doesn’t.

One recent evening we were watching a favorite show.  Aaron was all comfy and relaxed on the couch, legs covered in his ever-present blanket, and enjoying a yummy snack.  He was the picture of contentment.

Such was not the case hours earlier as we worked to get Aaron out of bed and on his way for the day.  That morning he was the picture of frustration and anger.

As we sat on the couch enjoying our program, Aaron was filled with happiness.  He finally looked over at me.

“I love you, Mom,” he said.

The moment was genuine and so sweet.

“I love you too, Aaron,” I replied. 

Then he seemed to remember our unhappy morning.

“Tell me I said that in the morning when you’re getting me up,” he added.

His words were a stop-me-in-my-tracks moment.

How many times in my life have I been filled with contentment as things are going well?  Then it’s easy to tell God that I love Him.  And I mean it when I say those words to Him. 

But sometimes the bottom falls out. 

Gary and I had been married for five years before Aaron was born.  That positive pregnancy test was SO huge to us!  How thankful we were!  How full of love for God and His sweet blessing in our lives!

Now here we are, 37 years later, in a place we never dreamed we would be with Aaron. 

Seizures.  Autism.  Behaviors. 

Can I still lift my eyes to God and tell Him that I love Him?

Those warm fuzzy ecstatic moments of my first pregnancy are long gone. 

In their place are many moments of worry, sadness, frustration, and bone-wearying exhaustion.

But here’s the thing.  I know God in a deeply personal way. 

And I know that often His ways in my life are filled with heartache and pain so that I will grow to be more like Jesus.

God hasn’t changed one little bit.

But He calls me to change, and His word tells me that this change toward likeness in Christ will involve the hard things. 

Sometimes I have to will myself to remember all the reasons I have told God that I love Him.

And those reasons cannot be based on my circumstances that are happy and fun.

The reasons I love God are based on WHO He is…His character and His attributes.

I cannot base my love for God on how comfortable I am.

So, like Aaron, there are times in my life when I need to look at God and ask Him to remind me that I said I love Him.

Through my tears, fears, anger, hurt…through all the questions I have about God’s reasons and logic in my life…I must not lose my love for God.

Oh God, tomorrow…when things aren’t going too well, and I feel upset…remind me that I said I love You. 

Remind me that You are the same yesterday, today, and forever.

And remind me of how very much You love me, too.