Category: Caregiving

The Bitter Root

Several years ago, I had an experience with a small weed in one of my front yard flower beds. 

 I had become so busy with my other gardening that I had put off the task of pulling that little weed.  It didn’t seem like such a big deal. The outward growth, though, hid what was happening under the ground, out of sight.

 Here is what I wrote:

One hot day as I worked among my flowers, I looked down and saw that this little weed had grown significantly. Still, it wasn’t huge but it sure was larger than I had noticed before. Silly me, I thought. Why have I been waiting to pull this once-little weed? I just need to get rid of it now, I reasoned. I reached down and gave the weed a pull, and nothing happened. I pulled a bit harder, and still the weed didn’t budge. I gripped harder on the small growth, gave a firmer yank, and still it sat firm in its place in the dirt. This small, harmless weed was certainly being stubborn! It wasn’t letting go of its foothold very easily at all! I was so deceived by the small growth that I could see that I was in turn shocked by its apparently deep growth in the soil. I once again got a firmer hold, jiggled the weed back and forth, pulled with all my might and finally out came the root. What a surprise! The root was very long – much longer in proportion to the rest of the plant. While I had procrastinated about getting rid of the little weed or argued with myself about how harmless the little weed was, this small weed was growing a deep root system that could have damaged or killed my pretty Coreopsis. There was no excuse for my neglect – a wise gardener knows better.

Sometimes I let attitudes fester in my heart…attitudes that are, quite frankly, sin.  It’s easy to say, “Well, now, you have every right to feel that way.  Don’t be so hard on yourself.”

And every time I give myself that little pep talk, I am letting that root grow deeper and deeper in my life until it’s not so little anymore.

I have been keenly aware of this fact as Gary and I care for Aaron.  Usually after a stressful period, often involving Aaron’s anger, we find ourselves talking together as we try to understand him and handle his issues in the right way.  So often, solutions are hard to come by.  The effects of living long-term with him spill over into every area of our lives.  We go back 17 years to the time we were making decisions about his future.  

Did we make the right choices?  We were headed in one direction and the doors closed.  Or did they?  

I am constantly reminding myself that all those years ago we were seeking God’s will and we were desiring to walk in that path of God’s choosing for us and for Aaron.  I must consciously trust God today with our past decisions…decisions that touch us in ways today that we never dreamed.

The impact of having Aaron with us now affects our “golden years” in so many unforeseen ways.  We know that future decisions will be upon us some day, but there is a bigger issue for me right now.

That issue is bitterness.  How easy it is to find ourselves saying, “If it wasn’t for Aaron, we could do this or that, go here or there, etc., etc., etc.”  

And soon my eyes are on the hindrances of life with Aaron rather than the joy of being in God’s will…of doing His work within the walls of our home…of loving Aaron and caring for him.

We are physical creatures.  We get tired.  We get discouraged.  

And sadly, we compare ourselves to others in those vulnerable moments when we’re scrolling through social media or having conversations.

Before I know it, the bitter root is taking deeper root in my heart.  And while I understand that my feelings are normal, I also know that I cannot let myself perch there.  

I must not settle for a life of bitterness.

These verses spoke to me so deeply this morning:

“O Lord, lead me in Your righteousness because of my foes; make Your way straight before me.”   (Psalm 5:8)

My foes…my enemies…are those attitudes within me that contradict what God says is right.  A big one is this issue of bitterness over the result of God’s past leading.  

We trusted Him then to put us on the right path, and so we can trust Him now to provide all we need to face the results of walking on that path.

I need God’s leading and His righteousness to overcome that bitter root that seeks to take hold.  Here is the result of trusting Him:

“Let all who take refuge in You be glad; let them ever sing for joy; and may You shelter them, that those who love Your name may exult in You.”  (Psalm 5:11)

Paul told the believers in Ephesus that through the power of the Holy Spirit, they could be rooted and grounded in love.  

Not rooted in bitterness but rooted in love…the love of Christ seen in their lives.

I must stop and check where I am allowing my roots to grow.  We all do, right?  We have so many hurts in life…so many stresses that pile up around us.  

O Lord, lead me in Your righteousness.  Do not allow me to lead myself into bitterness.  

I love this old hymn.  The lyrics speak well to each of us, wherever we are in our life of following Christ.

He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me. 

Refrain:
He leadeth me, He leadeth me,
By His own hand He leadeth me;
His faithful foll’wer I would be,
For by His hand He leadeth me. 

Sometimes ’mid scenes of deepest gloom,
Sometimes where Eden’s bowers bloom,
By waters still, o’er troubled sea,
Still ’tis His hand that leadeth me. 

Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me. 

And when my task on earth is done,
When by Thy grace the vict’ry’s won,
E’en death’s cold wave I will not flee,
Since God through Jordan leadeth me. 

(Joseph H. Gilmore)

Act Happy, Mom!

Over the years of blogging about our life with Aaron, I have sought to inform and educate others about the complexities of autism.  There are so many parts and pieces to autism…so many ways that Aaron’s life, and therefore ours, is affected by how autism makes him function.

Oh, if you only knew how many times I have thought or even asked this question of Aaron:   “Can’t you just…….?”  

Fill in the blank.

I have even had that question asked of me concerning Aaron.

“Can’t you do something with Aaron?!”

Or this one:  “Have you thought about….?”

Or:  “Have you tried….?”

Now, I do not mind helpful advice or constructive criticism.  However, one must be careful to truly understand a condition before offering advice on handling that condition.

Even Gary and I, with our years of experience, can at times find ourselves floundering amid Aaron’s stubbornness about certain situations.  

Aaron is very wrapped up in his own comfort and routine, sometimes to the detriment of everyone around him.  Anger on his part can set in quickly when his perceived needs are not being met in the way that he wants them to be met.  

It’s narcissism at its finest…or not…but is born out of Aaron’s deep-seated requirements of life, not out of pure selfishness.  Some incidents seem incredibly selfish, though, and there are times to handle that situation.

Such was the case one evening not long ago.  I was preparing a meal for supper when Aaron came into the kitchen and asked what we were having.  The meal wasn’t one of his known favorites.  And he let it be known right away that he was having none of it.

I did not budge when he asked if he could have something else to eat.  I reminded him that I do not run a restaurant and that he could eat what we were eating.  I told him I knew he would like it if he just gave it a try.

He was most unhappy!  

After several trips into the kitchen, where he angrily informed me that he hated that food and would NOT eat it, I knew that nothing I said was going to turn him around.  In fact, any words from my mouth just added fuel to the flame.

This is when I have learned to shut down and no longer respond to anything Aaron says.  I do not talk to him or respond to him.

And he detests that.  It makes him very uncomfortable when Mom doesn’t talk to him, but the silence is the best way I have found to defuse him and to show him that I am done with this scene.

As supper was nearly ready, he began to follow me around, talking a lot and hoping for a response from me.  Finally, he asked a question that needed an answer, so I responded in a very flat voice.  Aaron knows that this voice of Mom’s is still an indication that he has crossed the line. 

“Mom!” he urgently said, “you should answer like you’re happy that I’m telling you!!”

I had to smile at that one and was glad that my back was to him.

But you see, Aaron is clueless about how his treatment of us affects us.  It’s good for him to see the effect in a tangible way, as in my silence and lack of enthusiasm.

He did eat a little dinner with us, and we were able to talk to him some about his attitude.

Then later, Gary and I slipped out to the porch for a little time together.  We both needed a breather.

But we weren’t stealthy enough, for Aaron heard us and soon darted out the door and made himself right at home with us.  There he sat, seemingly oblivious to what had happened earlier, all primed and ready for a long talk with his captive audience.

Of course, he didn’t talk about his earlier behaviors.  He didn’t talk about his feelings, and he most definitely did NOT talk about our feelings.

Aaron wanted to fill our ears with his latest discoveries from reading his book on UFOs.  He wanted to talk and talk and talk about Area 51, asking tons of questions and waiting for our answers.  

Ah, Aaron…slipping into his comfort zone and unaware of the fact that this is not our comfort zone at all.  

Such is the give and take of living with autism.  My silence had pushed Aaron out of his comfortable place.  Now his talk of aliens and UFOs and Area 51 showed us that Aaron was ready to get back to normal…his normal, that is.

And yet his normal has in a strange way become our normal, too.  We know that Aaron is happy again when his conversation turns in these strange ways.

I guess Gary and I have become a little strange ourselves sometimes.  

And strangely enough, we didn’t have to act happy.  

We truly were just as happy as little aliens in a UFO!

Complaining in the Rain

It’s been terribly dry here in Kansas for way too long.  The wells out in our “used-to-be-country” neighborhood are running very low.  Some have dried up.  Some of the ponds used for cattle are just puddles now.  And the wheat crop is predicted to be the poorest in 60 years.

Therefore, I was happy to hear a low rumble of thunder early this morning.  As I sat on our patio and finished my quiet time, the sky began to darken.  I was very thankful for the rain that began to fall.  It was a gift from God!

Aaron was out of bed not long after and he sat with me to enjoy the rain as well.  Soon we were both ready to head out the door for our Meals on Wheels delivery.  The once gentle rain was now a downpour.

“Well,” I told Aaron, “we really need this rain so I’m not going to complain about it.”

We picked up our meals, loading them into the van as the rain came down and our clothes began to get wet.  At our first house, I opened the side van door and bagged the food.  Rain was a cold presence on the back of my shirt as I tried to lean in the van.  Aaron had already run to the client’s door, so I juggled the bag of food and my large umbrella, getting even wetter.

We chatted a minute with our friend, Aaron crunched in the corner of the small porch under a tiny awning and me under the umbrella.  Rain washed over us again as we got in the van, feet now soaked from the standing water.

As we backed out of the driveway, I happily made a little rhyme.

“Oh, the rain is a pain but I’m not going to complain!” I sang to Aaron.

Amazingly, he tolerated my silliness and off we went to the next house.  More rain, this time with some mud from the unpaved road as well as huge drops of water landing on us under the very low hanging branches at her uncovered door…branches that caught my umbrella and made it useless.

“This is great!” I exclaimed as we handed her the food.  “We do need the rain!  See you next week!”

By the fifth house, the rain was coming down even harder.  We ran up the wheelchair ramp, where our client was already at her door.  She was taking the dog bones that Aaron handed her for her two dogs.  I handed her the rather soggy bag of food and asked her how she was doing.

“I’m doing just fine,” she said, her face glowing with peace as she sat there in her wheelchair.  

She looked then at Aaron.

“Thank you so much for the dog bones,” she told him.  “My dogs love you for that.”

Aaron beamed.  Then she handed him one of the bones so that he could give it to her rambunctious dog himself.   She smiled as much as Aaron as he so excitedly watched the dog eat his bone.  

“Thank you and God bless you,” she said as we turned to leave.  I noticed how pretty she looked…how content despite her situation.  

At the next house we got to see our friend who had a serious fall a couple months ago.  She has been in the hospital and in rehab, and today was the first time we have been able to see her since her accident.  

Her smile was huge as she greeted us.  I wanted to talk about how she is doing but she wanted to focus on Aaron, hearing all about his recent seizure fall.  I finally managed to ask about how she’s doing, and she too said that she was getting along fine as she downplayed all that she has been through.  She is a sweet believer, and her joy is evident.

My joy was getting harder to muster as we went once more out into the rain.

“Whew!” I said, “I’m getting tired of this rain.”

“But I’m glad we’re getting the rain,” I quickly added as I remembered my earlier determination to be thankful.

My heart felt that little pinch of the Holy Spirit reminding me of just how much this morning is a picture of my life.

Oh, it’s easy to be all spiritual and thankful while I’m sitting on the patio, protected from the rains of life.  I can be an observer and have all the answers with all the right verses and attitudes as long as I’m not actually getting wet.

But let me step out into the storm and see what happens.  Getting wet and cold and muddy can quickly begin to take a toll on my patio attitude.  Soon I’m not so thankful for the rain that I had earlier said I needed.

The splashing of life’s trials has a way of diminishing my once-strong faith.

I feel cold.  Tired. 

And the path can make my feet muddy.  

Misery sets in, no matter how much I said I needed this weather sent from God.

No matter how much I quote Romans 8:28.

And while I may not be actively shaking my fist at God, I find that the flame of faith and joy in my heart is flickering in the rain.

It’s difficult to stay strong and positive in the downpours, especially prolonged storms that have no foreseen solution or resolve.

Honestly, I have been struggling some with Aaron issues over the past few months. Feeling discouraged more than I should.

“Lord!  I know I said that I need whatever you send, and that I can trust you.  But I’m getting tired and wet and muddy and uncomfortable!”

Yet the Lord, in His patience, used my experience this morning to prod my heart.  

And He used the most surprising people to touch my soggy spirit…people who have every reason to be extremely tired of the rains in their lives.

“Rejoice in the Lord always; again I will say, rejoice! 

 Let your gentle spirit be known to all men.  The Lord is near.  

Be anxious for nothing, but in everything by prayer and supplication WITH THANKSGIVING let your requests be made known to God.

And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:4-7

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.

God Sees When I Cannot

Here was Aaron yesterday morning:

No, he didn’t have a seizure.  He was just having a very hard time waking up to start his day.  It takes patience and wisdom on my part to deal with him when he wants to sleep late.  Sleepy Aaron is almost always grouchy Aaron.

A scenario like this isn’t life changing.  But lately, Aaron has been unsettled and extra-easily upset.  Is it the new little member of our family that he is struggling to accept?  Is he trying to establish his place of importance at home and at his day group?  Side effects of the meds he takes?  Or just the way his autistic brain functions in our world which is not always his world?

Probably some of all the above.

It’s been wearing on Gary and me lately.  Tiring.

I walked back to my desk after several treks into Aaron’s room. 

It hit me how crazy it is that at my age I am still actively parenting our son.  This is not at all how I ever imagined my life would be.

Don’t get me wrong.  I realize how very blessed I am in so many ways. 

But some days I wonder…

It’s easy to get mired down in the stress and frustrations, to the point that I lose sight of the path.

I feel much like Job, which I just read that morning.

          “Behold, I go forward but He is not there,

          And backward, but I cannot perceive Him;

          When He acts on the left, I cannot behold Him;

          He turns on the right, I cannot see Him.”  (Job 23:8-9)

It’s not just the path that I lose sight of.  Sometimes it’s God Himself that I cannot see.

Our emotions have a way of doing that to us. 

Our disappointments can blind us to God in our everyday lives.

BUT!!!

          “BUT He knows the way that I take…”  (Job 23:10)

I may lose sight of God in front of me or behind me…to my left or to my right.

BUT…God knows the way I take!

God hasn’t lost sight of me!

That word “knows” in Hebrew means “designates.”

The word “way” means the “course of life.”

God has designated the course of my life. 

God IS love and I know deep in my heart that His every plan for me is designed and wrapped in His love for me.

God also knows that I am but human…weak…questioning…fearful…sometimes angry.

Questions come easily when I am vulnerable.

Why does Aaron have to suffer?

Could You not have found another way to grow me, Lord?

If I allow myself to keep going down those paths, though, I will soon be off the path that God has for me.

That’s never a good place to be.

I need to be like Job, who in all his terrible suffering still said:

          “My foot has held fast to His path;

          I have kept His way and have not turned aside.

          I have not departed from the command of His lips;

          I have treasured the words of His mouth more than my

          necessary food.”   (Job 23:11-12)

Some days and many moments I don’t FEEL like I am holding fast to God or treasuring the words of His mouth.

But deep, deep in my heart I know that I do desire God’s will and God’s way.

We all go through the tough times, don’t we?  Some are brief.  Too many are prolonged…lifelong.

Oh God, show us every day that even when we can’t see You…You see us!

You appoint our path, hard as it often is.

Because in the hard is where we do more clearly see Your hand.

We feel your breath upon our faces as we wait before You, drying our tears and strengthening our failing hearts.

Then may we be able to say with Job:

          “When He has tried me, I shall come forth as gold.” 

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 Normal Road

As I drove Aaron to his day group one day this week, we passed a big traffic accident in the other lanes of the highway we routinely travel.  We took our normal exit, only to discover that the exit we usually take when getting back on the highway was closed due to the accident.  I told Aaron that I would need to go another way home after I dropped him off.  This concerned him but I assured him that it was no big deal.

All was clear on the highway and the exits when I picked Aaron up later that afternoon.

“Mom?” he immediately asked when he got in the van, “can we go up the road we’re normal with?”

It took me a second, but then I understood what he meant.  He was very happy as I turned into our exit that we could go up the road that we are normal with.

Aaron was completely unaware that he had just perfectly described his life with autism.  And he had especially given the perfect picture of why our recent trip to Texas was full of our usual Aaron ups and downs.

Aaron wants to stay on the road that he is normal with.  Any variation of that road will most certainly be full of potholes and unexpected detours. 

The road that Aaron is normal with is only at home.  It is only his room…his bed…his computer…his games…his food…his bathroom…his day group…his routine.

His desire for his normal is why he wants to take as much of his normal with him as possible when he travels with us.  He takes more books than he will read in three years.  More music than he will listen to in the week that we are gone.  Way more food than he will eat and way more games than he will play.

And he takes way more out of all of us than we feel that we can give.

Patience and understanding are our goal on every trip, but they are often stretched very thin.  If only my scales would show how thinly I am stretched!  😊

One evening we were setting the table for supper at our daughter’s house.  I gave Aaron one fork just like all of us were using.  But look at his place at the table after he ran back to the kitchen and corrected my silly mistake.

Always, always, Aaron will take two forks and two spoons and two knives.  He doesn’t use them but what we need to understand is that for some reason he does NEED them. 

Again, here is a perfect description of living with autism – this time in picture form.

You can see Andrea’s one fork beside Aaron’s multiple pieces of silverware. 

Aaron needs more.  He can’t even tell you why he does but he indeed must have more.

He must have more than the rest of us in so many areas of his life.  Sometimes it’s hard to remember that.  It’s hard to be patient with him and understanding of a need that we don’t have.  A need that seems so unreasonable. 

But the complexities of autism are not to be trifled with. 

There are many ways that we as parents can guide and train Aaron, and we have.

But we must be wise in choosing our battles.  Some battles we will always lose, and such a loss is not worth it.

The road that Aaron is normal with is also a road that Gary and I travel right alongside him.

I guess you could say that over the years we have a new normal…one we could never have dreamed of having.

Some days the trip is long, and we feel near empty.

Then we see a view like this, and our hearts are full again.

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.

Aaron is Still…….

Time slips so quickly away from me.  I feel the frustration of having more to do than I have hours in the day.  Blogging regularly is one of the things that continually gets pushed onto the back burner of my life.

Speaking of back burners, our kitchen is nearly finished.  We’ve been fully using it for several weeks now.  I love it!   Our second new refrigerator was delivered a week ago.  Our first new fridge didn’t work for even one second and it was an ordeal getting the company to approve and deliver a new one.  Just another first world problem.  Our refrigerator in the garage filled the need.  All our furniture is in the family room and other rooms.  We slowly are settling in and are very thankful for Luke’s diligence during a difficult process due to supply issues and being short staffed.  We have no complaints.  I will show pictures when the kitchen is totally done.  Did I say we LOVE it?!

So many times, as we live life with Aaron, I find myself saying, “Oh, I want to share this!”  Yet this life with Aaron is one reason that I DON’T get to share all that I want.  He does keep me very busy.  So, let me just give a quick update and maybe more expounding will come later…but don’t hold your breath too long.

Aaron is still an adventure sitting across the table when we eat out.

Epic straw wrapper blowing, Aaron!

Or when we go shopping.

He is still trying to get Moe, our neighbor’s cat, out from under Gary’s truck.

He is still talking to our neighbors EVERY chance he gets…and we are still so thankful for very patient and understanding neighbors who are true friends.  Gina sent me this picture and said, “I took this the other night when he was telling us all about life!”  Derek has the same look on his face that we often do!  😊  😊

He is still popping over to Amanda and Colby’s house, where she put him to work one recent night making Kool-Aid.

He is still melting our hearts with his sweet relationship with Mollie.

He is still sharing things with everybody, like making sure we took this new pack of gum to Andrew a couple weeks ago when we spent time with him at a race. 

He shares this life of his with me and Gary every single day. 

What Aaron shares is funny and fascinating and sometimes very frustrating. 

Gary and I often laugh and always listen to his abundant talking.

But the frustrating parts of Aaron…well, we still know that we need to handle that with the same grace that God extends to us…every single day.

Easier said than done…and the subject of another blog…maybe…when life settles down.

Did I say don’t hold your breath?  😊 

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.