Category: Special Needs Adults

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.

Oddballs

I want to start this blog by sharing with you a picture I took recently. 

OK.  You might be wondering what on earth these little balls are and why they are worthy of a picture.

Let me begin to explain by showing you another picture.

Many of you might recognize that this second picture is a bowl of Good and Plenty candies.  Aaron loves Good and Plentys.  He always pours his treats into a bowl and eats them one by one, usually while he sits in his favorite chair as we watch a show at night.

One recent morning I walked through the family room and saw little balls on the shelf of the end table beside Aaron’s chair.  I knew right away what they were.  Those little balls in that first picture are Good and Plenty candies.

BUT those little round candies are not oblong shaped as good Good and Plenty candy should be.  Therefore, to Aaron, they are unacceptable. 

They are oddballs.

And oddball candy is not to be eaten, at least not by Aaron.

Same candy…different shape…not allowed.

I absolutely love seeing such tangible pictures of the fascinating way that Aaron’s mind works.  This is classic evidence of the structured world that Aaron desires. 

Classic autistic behavior.

Look how he even set the pink candy in its own place, not in the row with the white ones.  Again, order is important.

Aaron can usually control the structure in his world when it involves food, silverware, blankets on his bed, when to turn the television off at precisely the correct moment, watching the credits at the end of a show, and on and on.

Unfortunately, Aaron’s desire that his world be carefully monitored for his own personal satisfaction runs into a problem.  The problem is that living breathing people with feelings don’t always fit into Aaron’s normal.

In other words, people can be like those defective candies. 

Oddballs.

But Aaron cannot set human beings aside into neat little rows when they don’t fit into his definition of acceptable.

He also cannot always keep his thoughts and frustrations about oddballs to himself.

Like the day years ago that he and I were eating lunch with someone Aaron didn’t remember, but she knew Aaron and was so excited to see him.  So excited that she kept leaning toward him to talk very happily with her exuberant voice and with her eyes very big. 

He finally leaned toward her from across the booth, opened his eyes as wide as he could, and exclaimed, “DON’T DO THIS!!!”

Oh dear.  I was so embarrassed.  This person works with special needs, and she understood, though she was taken aback.  But I knew that Aaron was getting very uncomfortable, so it was like watching a train building up steam before a wreck.

Then there was the time that we went with Aaron to parent night at his school.  He was to introduce us to each of his teachers.  At the last classroom, while waiting in the hall, we wondered why Aaron was beyond excited for us to meet this teacher.  We soon found out why.  She had a very pronounced spiked hairstyle, which Aaron found to be extremely interesting…odd, you might say.

“MOM!!  DAD!!  This is ______.  She looks like a HEDGEHOG, doesn’t she?!”

Well, well.

Gary and I were humiliated (although Aaron had a point 😊).  We immediately corrected him, and the teacher was immediately angry with Aaron…and it was not the finest of our parenting moments.

We have our times here at home, too, when Aaron sees us for the oddballs we are to him and he lets us know it. 

When one of us is talking to Aaron about something more serious and we change the shape of our eyes: “DON’T SQUINT YOUR EYES!!”

When I was talking to him one day and made a stirring motion with my hand, which upset him.  I asked why.  “I just see things you do are weird.”

When I was singing funny and could tell he didn’t like it, so I told him I was just having some fun: “I don’t like your fun.”

When I sniff and he is afraid that I’m upset: “ARE YOU CRYING???”  He really can’t handle crying from other people, especially me.

There are many more examples that I could include, but you get the idea. 

And if you hang around Aaron long enough you have a very decent chance of becoming an oddball, too.

But don’t worry.  You will be in good company.

Aaron, after seeing a picture of Shakespeare: “Shakespeare didn’t dress perfectly.  He dressed weird!”

As for Einstein in another picture seen by Aaron: “He has WEIRD hair!”

Maybe being an oddball isn’t such a bad thing after all, right?

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.” 

A Rose…A Friend

Sometimes when I pick Aaron up from his day group, while I wait for him to come to the car, I just sit and watch the various clients as they come and go.  There are times that tears fill my eyes.  Their needs are various, some more severely impacted by their conditions than others.  But each of them live challenging lives.  I am always humbled and amazed at their tenacity as they carry in their minds and bodies burdens that I have never faced.

This year, once again, our Dillon’s grocery store donated roses for Aaron to take to Paradigm on Valentine’s Day.   Jody, our sweet friend that we have come to know there, has made that happen for several years. 

Aaron is hesitant about all the hoopla of holidays.  He loves giving things to people but still he was nervous about taking the roses in to Paradigm. 

But oh my, it was a precious thing to see.  Barb and I had to remind Aaron to give a few to some of his less-favorite people, and their reactions warmed my heart. Just so you know, none of those persons is pictured here.

Just watching each client smile with delight was the highlight of my day. 

My flowers from Gary were a close second, but nothing beats just seeing the joy that a simple flower brings to these very special ones. 

I think more people would have a different outlook on life if they would go visit a special-needs day group…maybe take some things and bring some smiles and love to those who often need it the most.

I’ll leave you with these pictures.  Prepare to smile yourself.

        

“A single rose can be my garden… 

 A single friend…my world.”   (Leo Buscaglia)

Aaron’s Talking Points #14

It’s been WAY too long since I shared some of Aaron’s funny sayings that I have saved from over the years. Hope you enjoy some smiles!

Aaron saw me again with my spots of make-up on today. He brightly said, “Hey, Miss Camouflage!!” I do believe that’s better, though, than when he told me that I looked like I wore clown make-up.

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Aaron (aka Mr. Talks-A-Lot) has been up for over an hour and joined me in the kitchen. He has lived up to his name as he’s sucked all the air out of the room with his non-stop talking. He’s talked about the atmosphere, movies, mushrooms, dog treats, beagles, sump pumps, washing machines, propane, frogs, and I don’t know what else because my brain is being fried. Too early for this!!!!

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Our son, Andrew, works for an NHRA Top Fuel drag racing team. Aaron, for the first time in his life, is now an avid drag racing fan. He never misses a run or a race. He’s even learning some of the lingo, and amazingly enough, some of the driver’s names.

One of the Funny Car drivers is JR Todd. Aaron was focused on the television screen during JR’s run the other day. When it was over, Aaron wasn’t sure how JR had done.

“So,” he asked, “how did Junior Todd do?” 😃😃

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Aaron, eating his last pancake: “After I eat this one, I’m stuffed.”

Nothing like planning ahead. 😄

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Geography 101 according to Aaron: “You know, Mom, there’s New York City and then there’s regular New York.”

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Aaron was playing a war game on his computer and yelled out, “Mom! East is left, right?” Uh………well……and so I tried to explain before he said with great resignation to just never mind. Time for a map study, if I dare.

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Aaron has a cold. To him this is a big deal – and he thinks it should be a big deal to us, too. He gives what seems like endless updates on the progress of his cold. Just now: “Mom, now my right nose is stopped up!!”

No word on the left nose yet – stay tuned.

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Autism 101: Literalism

I took Aaron to the doctor today. The nurse was taking his info, and so she was trying to kindly focus her questions toward Aaron.

Nurse: Aaron, can you spell your name?

Aaron: Yes.

Silence.

More silence.

Aaron, in his mind, had answered her question.

“Yes,” he thought. “I can spell my name. Silly woman.”

Then the nurse realized her mistake, as the doctor and I sat on the sidelines chuckling.

Aaron finally spelled his name when she rephrased her question.

Nurse: Will you spell your name for me, Aaron?

And he did.

Some days it’s so much fun to be on the sidelines, watching Aaron work his magic.

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Aaron, tonight at supper: Dad, can you pass the tomato ketchup?

Who on earth says, “tomato ketchup?”

Aaron does, that’s who!!

It’s what the label says, people! 🤣🤣🤣

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Aaron loves wearing his “long pants pajamas” – as he calls them and as opposed to his “short pants pajamas” – to bed at night, even in the summer. He struggles with making the change from long pants pajamas to short pants pajamas. He will also keep the same covers piled on his bed, including his weighted blanket, even while wearing his long pants pajamas in the summer.

Therefore, we often have the same conversation on many summer mornings, just as we did this morning when he first got out of bed and found me sitting on the patio.

Aaron: Mom, I wore my long pants pajamas to bed last night.

This as he stood there in his long pants pajamas, waiting for my response.

Me: Yes, Aaron, I see that you did.

Aaron: Well, now I sweated and they feel wet.

Me (trying to move further away): Aaron, you don’t need to wear your long pants pajamas when it’s summer. Now go shower.

I resumed my position when he left to take his shower.

Later, as I put the load in the washing machine that held his sweaty long pants pajamas, he watched me carefully.

Finally: Mom! Where are my sweating pajamas?!

EWWWWWW!!!!! 🥵🥵😝

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I just walked past Aaron with my hair still wet. “Mom, your hair ran into me and it’s wet!”

 Quick! Catch my hair! I need it today!

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I took Aaron to the lab this morning for routine blood work. The lab tech asked him if he had plans for today and he told her that we were going to Burger King for breakfast. Then she asked him what else he liked to eat at Burger King and he said, “I like their suppers and their lunches, too!”

Well, that about covers the entire menu, don’t you think?!

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Aaron’s had some seizures the past two nights. He woke up very hungry.

“Mom!! When I got out of bed, my stomach felt skinny!” 😃😃

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On our way home from Paradigm, Aaron and I finished listening to our Neil Diamond CD.

Me: So let’s listen to the Judds next.

Aaron: No! I want to listen to Oprah Whitney!

Holding laughter in, as I’ve said before, can’t be healthy – but I did it. I did not laugh.

I have no idea, but it sounds like we’ll be listening to a singing talk show maybe?

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Aaron likes to crack his knuckles. A couple days ago he hurt his hand, so tonight he said, “I noticed that I can’t crack my fingernails anymore! I’ve lost my talent for doing that.”

I really need to watch him more closely!

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Background:  I was jolted awake last night by sounds coming from Aaron’s room, magnified by the monitor we use to listen for seizures.  I finally got out of bed at 11:11 (Aaron appreciates time precision), went into Aaron’s room, and found him propped up in bed reading a Garfield book and chomping on a HUGE wad of bubble gum.  I was irritated as I told him to put the book up and go to bed while I held his trash can under his chin and made him spit out the gum.

Aaron walked into the kitchen this morning after taking his shower.

“Mom, I wrote in the steam on the mirror.  I wrote, Patty Repent.” 

And indeed, he did. 

🤣😂

Till next time!

The UNhappy Uncle Aaron

Well, it’s time for another Uncle Aaron update.  This is one that I have not wanted to make.  You can probably tell why from the title.

Before I begin, let me say once again that the reason I write this blog is not to just tell funny or heartwarming Aaron stories.  I began this blog years ago as an effort to educate people about special needs, autism and epilepsy in particular.  Especially the autism part that makes Aaron so very amazing and unique.

But there is another side as well…a side of Aaron that has a hugely difficult if not impossible time adapting to change.  Add to that issue the reality that Aaron is the center of Aaron’s world.  He gauges almost everything in his life on how it will affect him.  He has a heart as big as all outdoors in one moment, but in the next he might be having anxiety or a meltdown over something that isn’t going as he wants.

Our little grandson, Ryker, was born on December 21.  Now Aaron was Uncle Aaron for REAL!  But when we showed Aaron pictures, he backed away as if Ryker might reach out and slap him.  Aaron was nervous and acted like he really didn’t care about our new family member.  We knew then we needed to tread lightly as Aaron adjusted.

But look at Aaron’s smile when he opened this Christmas gift.  We were hopeful.

I flew to meet Ryker a couple weeks after he was born. 

Five days later, Gary and Aaron were flying in for a couple days.  But the morning they were to leave, Aaron had a full-blown meltdown.  The day before had also been rough. 

To top it off, the flight was delayed that morning.  Making the connection in Denver was doubtful.  A very upset Aaron having to wait a long time for an uncertain flight in a strange airport far from home…ummm, I don’t think so. 

Gary and I knew we needed to cancel the trip.  The relief in Gary’s voice was palpable and I totally understood. 

Aaron’s voice over the phone was thick with emotion and tears.  After Gary cancelled the flight, Aaron was filled with guilt over what he had caused.  He also worried about our reactions, and knew he should apologize.  He was pretty pathetic.  Here are Gary’s words in a text:

“He is 180 the other way now.  Walking him back from his sorrow is almost as difficult as getting him out of his anger.  Constant sniffles, watery eyes and suggestions in addition to the ‘I’ll go…I promised Mom and I promised Andrea’ there is ‘Can we get another airplane…can we drive, can we go tomorrow…dad, I’ll go.’  I feel like I just took a long trip!”

Gary continued:  “He has said several times, ‘But I promised Andrea,’ and ‘I need to say I’m sorry.’  So I’ve said that we’ll call her and apologize.  He walks to the phone and pauses, then says he can’t.  It’s too emotional for him, I think.”

Down in Texas, I was full of both anger toward Aaron and sorrow for Gary, whom I knew should be there to meet his first grandchild.  This picture should have included Gary.

It was good to talk to Gary, to Andrea and Kyle, and to have wise input from family and friends.

But most of all, the turmoil I felt was relieved by stepping back in the quietness two mornings later and reading scripture as I held precious Ryker.  I read Psalm 62:  “With You is unfailing love.” 

How can I not love Aaron since God loves me in my stubbornness? 

How can I not extend to Aaron the grace that God has extended to me?  It’s honestly easier to accept God’s grace to me than to give that same grace to Aaron at times like this. 

And like Gary also said:  “I often wonder what God sees when He looks down at me?  When I do not do what He would have me do or I don’t do what I should do, does He look at me like I look at Aaron?”

So, here we are.  I wish I could report that Aaron has turned around and has decided to love and accept Ryker.  But that hasn’t happened yet. 

My second night home, this past Saturday, we had a particularly rough night with Aaron.  There he was, sitting up in his bed, crying with brokenness and saying that he was afraid we would only love Ryker and not him.  Gary and I assuring Aaron of our forever love for him while fighting our exhaustion and frustration. 

Andrea is right when she said the next day that Aaron is just like a little sibling when a new baby comes into the home and the older child expresses jealousy.  Aaron has no filters and makes no attempt to hide his feelings. 

But here’s the thing and it goes back to autism. 

Aaron CAN’T filter or hide what is going on with him right now.  He is literally unable to do that. 

Out it all comes and we are left to deal with it.

Sorry this is so long.  Trust me, I could say a lot more but I’ll hush now and say thank you to each of you who have read this volume.

And a special thank you to those of you who have been praying for Aaron and for us.  Please don’t stop.  We need much wisdom and love.

Before I go, I just HAVE to share one more picture of our precious little grandson.   It’s what a Gramoo does, right?  😊   

Our Precious Gift Has Arrived

Early this past Wednesday morning our most precious Christmas gift was delivered, all wrapped and perfect in every way.

I’ll let him give his own announcement.

Ryker!  A name meaning “strong one” and also “rich.”  We pray that he will always be strong in the Lord and full of the rich blessings of God in his life.

Mommy and Ryker are both doing well.  They all came home from the hospital yesterday.  Our travel plans are still uncertain, but it goes without saying that we are very ready to meet and to hold our little grandson.

And now for Uncle Aaron.

Aaron knew that Andrea was in the hospital.  He knew when he went to bed on Tuesday night that the baby had still not arrived.  And he was not wanting to hear constant talk of the progress toward his nephew’s birth.

On Wednesday morning, I gave Aaron some time before I told him that his nephew was here.  Finally, I showed him this picture taken shortly after Ryker was born.

Aaron leaned toward the phone as I carefully watched his face.  He stared at the picture and then his face softened.  He had a little slight smile that flickered as he took in this first sight of his nephew.  Then he spoke.

“Ugly,” Aaron said.

Of course, I reprimanded Aaron gently and reminded him that this is his nephew.  His name is Ryker, I told Aaron, and he is a beautiful little baby.

Some would be shocked and offended by Aaron’s comment.  But Aaron was just using the only word he could summon to show that he is needing to adjust to this huge change in his life.  A change that he did not ask for and that he would rather not deal with. 

Aaron knows that this little baby will change everything in his world.  We all know that change is not welcome in Aaron’s set world.  No matter that this is a precious baby that is bringing the change.  To Aaron, it’s the change that is making him nervous and whatever is bringing that change is what Aaron will focus on and hope to ignore.

Like our friend Barb said, “Aaron’s world has changed even with his competition so far away.”

As that first morning continued, we tried to keep baby talk in front of Aaron at a minimum. 

“I don’t want to talk about the nephew,” he said.

At least Aaron was communicating his feelings, right?

Finally, Aaron referred to “the nephew” as Ryker.  Yay!!!

That night, as we prayed before bed, I thanked God for our little Ryker.

“So, I need to love Ryker?” Aaron asked after we prayed.

I knew that Aaron, in his factual way, was working out his feelings and his responsibilities toward this little family interloper…this change agent.  😊

Imagine my shocked delight yesterday, then, as Aaron and I visited two different friends.  This is what happened at each house.

“The baby came!  Mom, show them the picture of Ryker!  I LOVE Ryker!!”

I had a hard time pulling up the pictures because I was trying to lift my jaw off the floor.

It was so spontaneous and sweet. 

Aaron continued his excited recitation about Ryker, which also included some of his concerns about being The Uncle. 

But this is what Aaron needs to do.  He works out his discomfort and concerns with lots of talking, with many questions that we hear over and over, and repetitions of the same answers that he hears from every person who is willing to listen to him and respond.

Free therapy!

Thank you all for that!!  😊

And we thank you so much for all of your prayers, both for Ryker and his birth, and for Aaron and his adjustment.

We’re far from done with that Aaron part.

But we are very thankful for our precious Christmas gift. 

Baby and Uncle Aaron Update

I realize that it’s way beyond time for a baby update.  Speaking of time…where has it gone?!

Andrea will probably be admitted to the hospital this evening for an induction.  She is on blood thinner because of an autoimmune disease so in order to change and manage that medicine, her delivery had to be scheduled.  We would value your prayers for her and for their baby…our grandson!…during this process.

Aaron is up and down about being Uncle Aaron.  He is so focused on the issue that he is making himself nervous about it.  He talks and talks about being an uncle, to absolutely anyone who will listen…or who can’t help but listen as a captive audience in a check-out line, at their job, neighbors…

“I don’t WANT to be an uncle!” he declares. 

Then he listens as he is told once again that being an uncle is a fun job.  And that he will do a great job of being Uncle Aaron. 

“But I might have to change his diaper!” Aaron says.

And that has been the biggest subject of conversation for Aaron.  Changing diapers!

The nurse and staff at his day group have been so wonderful to help ease him through his diaper fixation.  Look at these pictures from this past Friday as once again the nurse let Aaron practice changing a diaper.  He’s always so excited to tell us that he passed the diaper changing test!

Added to diaper duty…which we have assured Aaron will not be required of him…is the actual trip to Texas to meet his nephew.  Aaron is not a happy traveler.  Therefore, his angst is increasing more than his excited anticipation. 

All these matters tend to muddy our own joy.

I knew this from the very beginning, though.

I knew that I would struggle with being far from Andrea during her pregnancy and during her delivery and recovery.

And especially, being too far away to meet my grandson quickly and often.

That’s why, on the very night that Andrea and Kyle told us back in May that a baby was coming, I knew that a struggle for me was ahead.

I know me very well.

The next morning, as I continued my study in I Timothy, I asked the Lord to give me a verse or a part of a verse to claim during these months…actually, years…ahead. 

God does not disappoint!

There it was!

A phrase in I Timothy 4:10 jumped right out at me and settled in my heart.

“…we have fixed our hope on the living God…”

I was so thankful!

My memorial stone was quickly written beside that verse:  Baby Kester, May 22, 2022.

How many times, when I have started down that path of wishing for things that are not to be…or I have begun to compare myself to others…or I have questioned God’s ways…this phrase has calmed and assured me.

For if I can’t trust God in this area of my life, when CAN I trust Him?

Then just last week, as I was in the book of Hebrews and reading about Moses in chapter 11, there it was again.

Verse 27:  “…Moses endures, as seeing Him who is unseen.”

Guess what the words “seeing Him” mean?

They mean that Moses’ eyes were fixed.

As in, “…we have fixed our hope on the living God.”

I was so touched that at the beginning of this grandbaby journey…and now nearing the end of the pregnancy…God once again told me to fix my eyes on Him.

This verb used in Hebrews refers to an artist whose eyes are fixed on the subject he is painting.  He focuses solely on the subject, not on the distractions around him.

Raymond Brown also points out that this word indicates a determined choice.

“Westcott says that it is used by classical writers in the sense of ‘looking from one object to another.’  We fix our eyes on the ultimate, not the immediate, on the eternal reward rather than our temporal gain.”

What I really want to get across in all of this is this:  I may be tired of my circumstances in some ways, but I am not hopeless!

I have fixed my hope on the living God!

God understands my desires and He knows my heart.

He keeps saying, “Patty!  Focus!!” as my eyes begin to wander to the distractions around me and I start to be discouraged or sad.

God is so good to me.  He understands and He does not demand perfection from me. 

Just trust, and hope.

Hope in the living God Who has a reason and a plan for every part of my life, grandbaby included.

Hope in the living God Who sent His own Son as a baby so that I could have that hope.

I hope I have happy baby news very soon!

And Aaron hopes that he really doesn’t have to change diapers!

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.

Pharaoh Aaron

I see lots of people are putting up their Christmas trees and listening to Christmas music, and here I am just now finding a little time to write about Aaron’s Halloween.  Story of my life.  I’m usually a few days late and lots of dollars short!  😊

But I just couldn’t pass up the opportunity to share about Aaron’s very happy day, so here goes.

About a month before Halloween and based on his ongoing up-and-down obsession with everything Egyptian and King Tut and pharaohs, he decided to browse through Amazon where he found a pharaoh costume.  We were easily talked into buying it and Aaron was over-the-moon excited at the thought of wearing it to his day group’s Halloween party.

The fact that Aaron would even wear this costume was a miracle.  He doesn’t like how unusual clothes feel on his body or the attention he gets from others if he dresses differently, but for some reason he was totally pumped about this costume.  Just look at him!

He did say he wanted people to bow to him so that might partly explain his enthusiasm.  We quickly nipped that idea in the bud, however…and also refused to give him a staff to carry.  Multiple scenes of forced homage played through our minds as we gave him a determined, “NO!”

Aaron was very excited about wearing his “uniform,” as he called it, on the morning of the party.  I wondered what people thought as I drove down our city’s main highway with a pharaoh in the front seat…especially one that kept rubbing his hands and fingers together the way our Pharaoh does.   😊

Aaron was pretty nervous, though, as we parked at Paradigm.  I had reminded him several times that everyone would love the costume and would make lots of comments, and that he needed to be nice.  Aaron doesn’t like such attention even though he does plenty to deserve attention that has nothing to do with dressing as a Pharaoh.

Just as soon as we got out of the van, there was one of his staff in the parking lot. 

“Aaron!” she exclaimed, “I LOVE your Pharaoh costume!  You look awesome!!”

“Shut up,” he softly replied.

And there we go, I thought. 

Another lecture from me and inside we went, with me more nervous about it all than Aaron at that point.

Aaron had said he only wanted to stay for a few minutes and then go back home with me.  But once inside, as he heard everyone’s excited comments about his costume, he started to relax and enjoy himself. 

He finally decided to stay for the party, so I eased out and drove home, fully expecting to soon get a call from him begging me to come pick him up.  But that didn’t happen!

Instead, when I picked him up later that afternoon, several of his friends came running to the van.  All of them said the same thing.

“Guess what?!” they said, “Aaron won first place in the costume contest!!!”

It was so touching!  There they were, most of them in their own costumes, genuinely thrilled that Aaron had been the one to win first place. 

If anyone wants to see some amazing examples of true friendship, come with me to Aaron’s day group and I can show you plenty.

Finally, Aaron made it to the van – a HUGE smile on his face. 

“MOM!!” he almost yelled, “I won FIRST place, and I got THREE dollars!!!” 

It may as well have been a million dollars.  To him, it was! 

And to me, there was no dollar amount that could be placed on the joy I felt to see him so happy, and to see his friends so happy FOR him.

But his happy day wasn’t quite over.  I had to pick up a few things at the grocery store.  I offered to take Aaron home to let him change first, but no, he wanted very much to go inside Dillon’s and show everyone his costume.  I, on the other hand, was more than a little hesitant to go inside with Pharaoh Aaron.  Regular Aaron attracts enough attention.  Pharaoh Aaron…well, that puts the “Wow, look at him!!” stares I knew we would be getting on a whole new and very high level.

But hey, I’ve learned to just smile and enjoy the ride as much as possible so off we went.  Pharaoh Aaron and I marched in the doors like it was just another day in ancient Egypt.

And yeah, we got plenty of looks.  Aaron laughed and rubbed his hands together all the way through the store.  He saw and talked to Jody first at customer service…then turned to see Harold at self-checkout bowing to him (absolutely perfect!!)…ran to the pharmacy where Marc and Greg and most of the staff laughed and where Marc talked to Pharaoh Aaron like always…then all the way across the store to the deli where Cassandra and Blake were appropriately impressed…

 He did hear several people say, “Good job!” or “You look great!”   But most of the time he was blissfully unaware of the many stares and huge smiles left in his wake.

But I was very aware, and so very happy that I had decided to let Pharaoh Aaron go with me into the store.  I imagine he brightened the day for lots of people. 

And for those who just stared at him as if he had landed on earth from Mars…silly people. 

I should turn Aaron loose on those people.  He could most definitely educate them on both Mars AND Pharaohs. 

There are no Pharaohs on Mars!

But we sure enjoyed our day here in Kansas with Pharaoh Aaron!