It’s NOT a Small World

On a recent night, as Aaron and I watched a video and he ate his tortilla chips, I looked over to see that he had perched a bowl on the ottoman in front of him.  Without even asking, I knew what that bowl was for.  Aaron has multiple bowls for multiple uses, all over the house.  Later, after our video was finished and he had cleaned up his area, I looked inside his bowl that he had brought into the kitchen.  Can you see what’s inside the bowl?

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Very, very tiny crumbs are in the bottom of that bowl.  When Aaron is eating crumbly chips, he likes to have a bowl in which he tries to ensure that the crumbs fall.  It’s easy for me to want to fuss at him for taking a whole bowl for such a few crumbs, but I know that my fussing will not change his bowl habit.  He will find a bowl to use, even if he must hide it under his blanket so that I don’t nag him about it.  Yes, he has done that.  So I just let it go…let him keep his bowl for such a seemingly silly use…and thank the Lord for my dishwasher!

Those little crumbs are a perfect picture of an aspect of Aaron that can be both humorous and maddening.  And as always, it’s up to me to decide which it will be.

So often, persons with autism fixate on what to the rest of us would be such insignificant matters.  Like those small crumbs, we would tend to just brush such matters away without a second thought .  But not Aaron!  Not at ALL Aaron!

Take the word, “of.”  Yes, “of.”

Did you realize that there is a movie entitled, “Battle:  Los Angeles?”  And that there is another movie entitled, “Battle Of Los Angeles?”

Aaron watched these two movies a few weeks ago, so Gary and I became ever so aware…once again, because the same thing happened the LAST time he watched those movies…of the importance of the word, “of.”

“Mom!” Aaron would say as he bound into the kitchen.  “I’m watching Battle:  Los Angeles!  Not the one that has the “Of!”  And off he would go in some long tale of the latest alien doings in “Battle:  Los Angeles.”

Then later:  “Mom, did you know that in Battle Of Los Angeles…not the one I’m watching right now – the one that has the ‘of’…”  And another long story would follow.

And yet again:  “Mom, in Battle of Los Angeles…the ‘of’ one…”

It was of upmost importance that he…and we…and anyone else listening…be clear on whether he was talking about the ‘of’ one or the non-‘of’ one.

Are we clear?!

Such a small matter, but huge to Aaron.

Dinner plates done right are also of utmost importance to Aaron.  A few evenings ago, at supper, Aaron had a barbecued rib on his plate.  He ate the rib, then tolerated us putting some cucumbers and ranch dip on that plate.  He ate the cucumbers and dip, then stood up and opened the cabinet door, and took out another plate.  We had asked him if he wanted another rib, and he said he did, but he didn’t say another word about what we knew was bothering him.  He would NOT put his second rib where cucumbers and dip had been, so a new plate was in order.  With his rib on a clean plate, he was happy.

Meals can be interesting with multiple plates, bowls of various sizes, two or more forks, a spoon and a knife no matter what we’re eating, and always more than one napkin.  May as well not fight it!

Life for Aaron is crammed full of these little crumbs.  Like the old children’s story of the Princess and the Pea, where the princess felt that little pea under all those mattresses, Aaron does feel the weight of all these matters that to us are very small and silly.

Therein lies the problem, though.  They are not small and silly to Aaron.  If we don’t understand that, then we will feel the weight of Aaron’s anger and frustration.  He can’t necessarily verbalize what he is feeling, or even understand it himself, but the issues are huge to him and not to be swept under a rug, so to speak.

Aaron’s life has a certain order to it, and he needs those around him to be on the same page with him.  However, most of us are not only on a different page, we’re in a whole different book!  So we’re always having to be aware of what matters most to Aaron, and when, and why, and how…if at all possible.  Notice I said that we must be aware of what matters…not even understand it…but at least to be aware.  And to place the importance on it that Aaron does.

So there may be more bowls to wash, or plates or silverware.  There may be more undue emphasis on minor little words like ‘of.’  More questions to answer, explanations to wade through, and endless stories and comparisons to endure.

But each little crumb collected in that bowl is a part of the puzzle that is Aaron.  Each sigh that escapes our lips…each roll of our eyes behind his back…each scratch of our head…is just part of the process of piecing together all that is Aaron.

Along with all that, though, is plenty of laughter and lots of smiles…and a view of our world that is anything but small.

 

My Father’s Grip

I grew up in the little town of Princeton, West Virginia.  My Dad worked for the railroad there; first the Virginian, and then Norfolk and Western.  The railroads were a central part of life there in those West Virginia mountains.  It was coal country, and trains were vital for the coal industry.

The sounds of those trains, heard at all hours of the day and night from our home not too awfully far from where Dad worked, were an ever-present part of my childhood.  Even now, the sound of a train will take me back to those early days. 

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Dad worked his way up the “ranks” and eventually became a train dispatcher.  I don’t know how long it was before he one day told us of his promotion to Chief Train Dispatcher.  I didn’t understand much about his job, but I was always proud that he was a CHIEF Train Dispatcher.  He had a very responsible job, working long hours and often on weekends, or getting calls at all hours of the night to go in if there was a dreaded derailment. 

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Sometimes Dad would let one of us kids go to work with him on a Saturday, especially if he was only working a half day.  I just loved those Saturdays when it was my turn to go to work with him!  I remember entering the old wooden train depot building, where we would walk up a long set of wooden stairs to his second-floor office.  This old building smelled of wood; tobacco in various forms; pencil erasers; and trains, of course.

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There were crisp sounds of radio static as the men talked to the engineers on the trains; telephones ringing; the staccato ping of old typewriters; and the roar of huge trains when they would pass below us. 

Dad at railroad, early days

Dad would give me some paper and a pencil, and I would pretend to be working just as he was.  I loved watching the lights come and go on the huge control panel behind his desk, showing the progress of various trains that were running all over southern West Virginia. And always, sooner or later, Dad would take me down the hall to the Coke machine and the snack machine.  He would buy me a Coke and a pack of Nabs, and I was in heaven!

What made the biggest impression on me, though, was when Dad would go down those long stairs and outside to the train track, taking me with him.  Sometimes he would attach a paper message to a pole there beside the track, and then we would wait.  Soon I would hear it…the unmistakable sound of a train in the distance, coming ever closer to us. 

The clickity-clack of the wheels, and the train whistle blowing, blowing, blowing in the distance, told me that soon the train would be bellowing past us…right in front of where we were standing!  And suddenly, there it was!  Huge and black and so very loud and terrifying, too. 

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Yet I wasn’t afraid, even though I was so close to such power and danger.  You know why?  Because my dad held my little hand in his big hand.  He held gently yet firmly.  I trusted him totally.  I knew that where we were standing was safe, and though the train was very loud and scary, my dad knew just where we needed to be to stay safe and secure. 

Soon a splash of red passed by.  The caboose!  The conductor stood outside the caboose.  He grabbed the paper message off the pole, waved at us while we waved back, and the train disappeared up the tracks.  All was well.

In the Bible we read about the man named Joshua, whom God told to lead His people of Israel across the Jordan River into the promised land.  It was a daunting, scary proposition.  But as God gave His orders to Joshua, this is what He said: “Just as I have been with Moses, I will be with you.  I will never fail you or forsake you.”  (Joshua 1:5) 

Guess what the words “fail” and “forsake” mean?  They mean “to relax the grip.”  And that’s not all.  In verse 7, God told Joshua to be strong, which means to “reach out and grab hold.”

Do you see the beautiful picture that God is giving us?  This God of Joshua is our God today, for those of us who know Him!  And He’s telling us to reach out and grab hold of Him as He extends His hand to us.  Then let Him do the holding, because He promises not to relax His grip on us!

There are some very scary times for all of us in this life.  Sometimes some big, dark, loud problems happen to us.  God wants us to be strong, like Joshua…reach out to Him and let Him hold our hand beside all the issues that scare us and hurt us and threaten us on so many levels. 

I didn’t understand much about trains at that young age, but I knew they were dangerous.  Yet even more than that, I knew from experience that my Dad was wise and loving and would take good care of me.  He knew just how close for us to stand, and with my hand in his, I knew I was totally safe.

Our Heavenly Father has never said we won’t have problems.  In fact, He has told us that we WILL face hard times…times that will hopefully draw us to Him and to His strong hands.  He won’t let go of us.  He won’t abandon us.  He will keep us safe in our very hard times, even when we don’t like those times or understand their purpose. 

And we can say, with total confidence, “The Lord is for me, I will not fear.”  (Psalm 118:6)  

   

 

 

My Round Guy in An Oblong World

A few weeks ago, Aaron was eating some of his favorite Skittles when he came upon an idea, one that he loves.

“Mom?” he asked.  “Can I take some of my Skittles to Paradigm to share with Shauna and Stephanie?”

Aaron loves to share things, and we love that he loves to share…within reason.  For instance, I had to say no when he wanted to share some of my jewelry a long time ago.  We have said no to him when he tried to sneak out of the house with some of his DVD’s or CD’s that he wanted to share.  But Skittles?  Sure!

So Aaron promptly went to the kitchen and grabbed two sandwich bags.  Later, I found this.

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I had to laugh.  Really?  Just three little Skittles per bag?  But for some reason, Aaron thought that three was plenty and so I let it go, hoping that Shauna and Stephanie enjoyed every little bite of their whopping three Skittles.

Days later, I bought Aaron some Good and Plenty candy for his weekend treat.  He began eating them as we watched a show that night.  I noticed, though, that he was laying aside some his candies while he ate others.  I asked him about it.

“These,” he said, pointing to the ones outside the bowl, “are not like the rest.  They’re different.”

Sure enough, the ones he put aside were different.  They were round instead of oblong.  To Aaron, round Good and Plenty candies do not belong in the same bowl as the normal, oblong Good and Plenty’s. 

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I later also found three more misfit, round candies that Aaron had placed on the shelf under the table. 

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Isn’t that interesting?  To Aaron, he just couldn’t tolerate mixing the round with the oblong.  I guarantee that if I had tried to sneak the round candies back into the bowl with the oblongs, then Aaron would have once again removed them. 

Aaron has so much to share with the world, like his Skittles that he wanted to share with his friends.  He can be bright and colorful, interesting and very funny. 

He is also quite unique, not fitting in with much of the rest of us in ways that we all notice.  Yet he IS still one of us.  He’s just a different shape, so to speak, but that doesn’t make him less than us or worse than us in any way.  Definitely not!

I share Aaron with others through this blog in order for people to understand how amazing our special ones are.  Aaron was created by God to be exactly who he is.  It’s up to me…to all of us…to understand and appreciate him.  Oh, he can be so difficult to understand sometimes.  And at times…tired times…embarrassing times…challenging times…I really falter in my appreciation of Aaron.  I’m human. 

But may I never set him aside in the sense of isolating him or shaming him.  And woe to the person who does, for this Mama Bear will roar. 

Yet Aaron sets himself apart in ways that he totally doesn’t realize.  It’s part of his charm…and part of the reason that on occasion my nerves are shot!

He can make such a spectacle of himself in public and not be one bit embarrassed.  I have many Wal-Mart stories that prove this point.  A recent one:  I’ve been working with Aaron about looking in both directions before crossing traffic.  He looks at his feet, which is not good!  I’m always telling him to look around, but still he looks at his feet.  So the other day at Wal-Mart, as we walked out of the store and were nearing the crosswalk, I saw Aaron once again looking at his feet.  “Aaron!” I sharply said.  “Look UP!”  And good old Aaron stopped abruptly in the middle of the crosswalk, with stopped cars on both sides, and looked up…at the SKY!!  I just shook my head, told Aaron to look for CARS, and didn’t dare look at the drivers to see what looks they were giving US!!  I wonder if they looked up to see what was in the sky that was so interesting?!

At a convenience store this week, Aaron ordered a pretzel on the computer in the café as I’ve taught him to do.  But Aaron still isn’t sure that the girl behind the counter actually receives his order because he hasn’t said anything to her.  After he placed his order, he leaned around the counter to the clueless attendant and loudly said, as he rubbed his hands together, “I ordered my order!!”

Some people get Aaron and some people just don’t.  She just didn’t, so she looked at him with impatience, which I saw.  But Aaron didn’t see that at all.  He thought she simply didn’t hear him, so he repeated it again…loudly, again.  “I ordered my order!!” 

“He’s just telling you he put in his order,” I explained to her as I led Aaron away from the counter and toward the chocolate milk he wanted.  I thought it was funny…and sad…and I was a little angry at the girl’s impatience.  But I know that to some, Aaron is an odd shape, so to speak.  Hard to figure out.  Off-putting, even.

I have to say, though, that he makes me laugh when he does things like that.  He’s so one-of-a-kind…so himself…so uninhibited.  Oh yeah, have I been humiliated and red-faced and angered and surprised!

But I’ve also been blessed and taught so much and humbled and thankful.  And those moments…those lessons…I must remember and focus on and treasure.

Like this one:

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See what I mean?  He’s most certainly my round guy in an oblong world!  

 

From Bliss to Brokenness

On Monday, November 6, of last year…..yes, 2017 is – as of today – LAST year!!  Anyway, on that day last year our washing machine loudly died.  I mean, the noises coming from the bathroom/laundry room were downright scary.  I remember that date because two days later, November 8, was Aaron’s birthday.  Gary and I met at Lowe’s after he got off work on Tuesday night, where we found our dream machine, got it ordered, and were told that delivery would be on Thursday.

Thursday was the day we were having two of Aaron’s favorite friends over for a birthday supper, so I knew I would be home most of the day as I got things ready.  It was also the day that Aaron woke up in a very wet bed, so it became the day of a huge mound of wet bedding piled near our dead washing machine, waiting on our brand new dream machine.  And friends coming for dinner. 

So I prayed as I made apple pie….Aaron’s birthday “cake” of choice.  I asked God to please let the dream machine come sooner than the possible delivery time given to us, which was between 12:00 and 4:00, and usually means it might be there by 6:00 – with friends coming for supper and with Aaron very picky about his bedding and covers being JUST right.  It was shortly after 11:00 when I asked God for this kindness…not really near the expected delivery time.  But don’t you know, that within two minutes my phone rang and it was the delivery guys asking if it would be ok to come early!

I almost said, “Amen!!  You come right on over!”  I didn’t because I wanted my dream machine delivered and was afraid I would scare them away, but I did share with them God’s sweet provision and answer to prayer as they installed my dream machine.  One man smiled as he worked and the other said, “God is still on His throne!”  I did say “Amen!” to that!

I’ve loved that new washing machine.  The tub is so large that I have to stand on my tiptoes to reach the bottom of it, but does it ever hold big loads, like bedding!  And often I think back to that sweet answer to prayer on my very busy day….how God provided the dream machine in the first place, and then gave it to me early when I asked.  I love those “simple” and kind answers to prayer.

So fast forward to December 22, the Friday before Christmas, when Aaron woke up in an even wetter bed than the one of the month before.  Seizure?  I didn’t hear one.  More likely just too much drinking water before bed.  Regardless, everything needed washing on the VERY busy day of cleaning and cooking before the kids came in and our Christmas began.  Oh well, nothing to do but DO what needed doing…and I had my wonderful new dream machine, remember?

I was thankful for that extra large tub as I loaded Aaron’s wonderful waterproof mattress pad and sheets into it, and then went about my other work for the day.  But when I went back to check on that first load, I found it to be dripping wet.  “Oh dear,” I thought.  “What could be causing that?”  I had washed heavy loads before with no problem.  I set the load on a rinse and spin cycle, but still had the same dismal results when I checked it later.  Setting it again, I watched closely and found that water wasn’t entering the tub, and the tub wasn’t spinning.  Nothing in the manual helped and nothing I did worked, so I was stuck with all of Aaron’s bedding in another huge pile, and very wet bedding in my dream machine. 

Gary worked and worked on that machine when he came home, to no avail.  I did manage to get the very wet items dried in our dryer, but still had piles of laundry at the end of the day.  Gary called Lowe’s and a repairman was scheduled, but not until Wednesday…which this year was our Christmas Eve. 

Bless his heart, Gary insisted on taking all the laundry to the laundromat on Saturday morning.  Aaron helped him carry the bags out to his truck, and before too long Gary was back with lots of wet laundry to be dried. 

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And when the repairman came on Wednesday, he found the problem but told us he wouldn’t be able to come back with the needed part until January 2nd. 

So we have lots and lots of laundry sorted and piled on now empty beds since all the kids have come and gone after Christmas.  Of course, that means extra bedding and extra towels waiting to be washed in my dream machine that has turned into a little of a nightmare, honestly. 

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I went from happily sharing this evident answer to prayer to scratching my head at the failure of it.  Not the failure of God, mind you, but the failure surrounding this provision…my dream machine!

But through this really simple annoyance, God has spoken to my heart.  How many times He has clearly answered my prayers, only to also lead me to…at times…a hard place where I must trust Him.  It’s so easy to praise Him for clear answers, but sometimes difficult to trust His sovereignty when the answers aren’t a bed of roses. 

Today’s answers to prayers don’t guarantee a carefree tomorrow. 

But always…ALWAYS…God DOES answer.  His answer may contain trials, but He also ALWAYS has a reason for those trials.

Gary and I were married over five years before Aaron was born.  I wondered if I would ever have a baby.  That positive pregnancy test was one of the happiest days of my life!  We thanked God over and over!!

So fast forward to now, 33 years later.  When I held baby Aaron, I never dreamed of seizures and autism and behaviors and our son still with us at his age.  And like my broken dream machine, our dreams for Aaron have certainly taken a different turn.  Aaron isn’t broken.  He is just the way that God designed him to be.  But my dreams were broken.  Our amazing answer to prayer has also carried with it a huge element of grief and testing.

Yet I know…I KNOW…that God is in control.  With His blessing of Aaron in our lives has also come some brokenness.   Our life is on a far different path than we had ever envisioned.  But on that path has also come tremendous cause for trust in God…which teaches us patience…waiting…and then peace.  God’s sweet peace amid the piles of pain and mess that sometimes surround our days.    

I shouldn’t be focusing on the ANSWER to my prayers, but on the God behind that answer. 

And in that focus…in God alone…I can rest and I can trust. 

“God is our refuge and strength, a very present help in trouble.  Be still, and know that I am God.”  (Psalm 46:1,10)

What better way to start the New Year than this!

 

 

 

Does God Like Me?

“Mom?” Aaron asked last night as he was going through his ever-important bedtime routine.  I was ready for yet another question about what the SS means on the side of the Poseidon…or what kind of vision do the aliens on Pacific Rim have…or what is the quick freeze on The Day After Tomorrow movie?  So I just absently responded with my all-too-often reply.

“Hmmm?” I absently answered as he stood beside me in the bathroom, watching me put something away. 

“Do I have seizures because God doesn’t like me?” he continued.

And I stopped…stopped dead in my tracks at this very unexpected question. 

I looked up from what I was doing, into his very serious face. 

“I just wondered if I have seizures because God doesn’t like me,” he continued. 

Wow!

This is like a question Job would ask, and I wanted to give the right answer without being too shallow or too deep.

I told Aaron that God loves him very much, and that sometimes He allows things to happen.  I wanted to go into full theology mode, but I knew that I could easily lose Aaron, so I assured him again of God’s love and that when we have those questions we need to remember what we know about God…that He IS love, even when we don’t understand what He allows.

Aaron went on to bed soon after, but his question lingered in my mind into this morning.  What brought that question into his mind?  What had he been thinking about? 

Gary and I talked last night at supper, just the two of us, about how on some days we feel like it’s Christmas…and on other days, not so much.  What brings on that “Christmas spirit” we sometimes work so hard to achieve?  At times, we don’t set out to create that feeling, but when it’s missing we wonder what we missed.  Are we tired?  Worried?  Overwhelmed?  Broke?  Or broken?

I walked into Aaron’s room this morning, carrying his fresh coffee and finding him soundly asleep.  I spoke to him but he didn’t stir.  Coming back a little later, I pulled back his covers as he grunted…and I was not happy with what I saw.

A wet bed!  A totally soaked bed!

And last night he and I had changed his sheets!  I was happy to mark that off my Christmas To-Do list. 

“Are you kidding me?” I exclaimed. 

“What?” Aaron sleepily asked.

“You wet your bed!” I impatiently answered.  I was pretty certain it wasn’t a seizure, so I added, “No more water before bed!”

And off I huffed, mumbling my frustration.  Of all days!  I was feeling pretty good last night about finishing the gift wrapping and most of the grocery shopping, and saving Friday for house cleaning and the beginning of my cooking. 

Plans set.  The “Christmas spirit” picking up!

And now this…this time consuming, unexpected, yucky mess!

As I showered and got myself ready, Aaron’s question of the night before came back to my mind.  I was reminded of how much I wanted to impress God’s love upon him.  How could I do that if I was grouchy with him?  And again, how could I answer his searching question in a way that would impact him?

As I thought about it, God gently nudged my heart.  “It’s Christmas, Patty,” He seemed to say.  “What better time to explain my love than at Christmas?”

All of a sudden, wet bedding and a busy day ahead didn’t matter so much.  The Christmas music playing in my bedroom took on a clearer meaning.  I decided to talk to Aaron on our way to his day group.

He promptly turned on the Christmas CD that was in the player as soon as I turned on the van.  “Number 12,” he flatly said.  Aaron always follows the numbers of songs very closely.  “This CD has 14 songs,” he further explained.  “It’s on number 12 now.”

I smiled.  He seems to think that I want to know this information as much as he does.  But this morning, I was glad to know that I had only three songs to go before I could talk to Aaron once again about his last night’s question.

Number 14 song completely ended, and the CD went to number 1 again before Aaron removed it.  You do NOT remove the CD when the number 14 is still showing.  It must have moved on to the next song, just so you know.

I grabbed the moment.  “Aaron, do you remember asking me last night if God doesn’t like you because He lets you have seizures?” I asked. 

“Yeah,” he answered as he placed the CD in its case.

“Well, this is the perfect time of year to remember how much God loves you.  He sent Jesus down to earth to be born as a baby because He loves you and me that much.  You know that’s what Christmas is all about,” I said.

“Yeah,” he repeated. 

“So you don’t have to wonder if God loves you or not because you have seizures.  We don’t understand all that, but we do know that He loves you a bunch!  Jesus’ birth shows you that every day!” I continued.

We continued talking a bit as we neared his day group.  He was content with that answer.  And I noticed in my own heart a return of that mysterious “Christmas spirit.”  It had nothing to do with this:

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Or this:

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But definitely had everything to do with this!

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My Christmas verse this year, so appropriate for me and for Aaron this morning, is one we all know: “For God so loved the world, that He gave His only begotten Son, that whoever believes in Him would not perish but would have everlasting life.”  John 3:16

I need to run!  I have a load of bedding to put in the dryer.

Merry Christmas to all!

 

 

 

 

What Dad Taught Me in Death

I’m so thankful for all that my dad taught me in life, but especially all that he taught me in death.

He Said What?!

I’ve heard it said that our parents are the most important teachers that we will ever have.  I would agree with that statement, for as we grow we are constantly watching our parents……..listening and absorbing and learning through their words and deeds.  Hopefully the lessons learned are good ones.  My parents were very beneficial in my life in more ways than I can count.  Yet some of the lessons that I treasure the most are the lessons I learned as I watched my dad live the last month of his life on earth.  What were some of those lessons?
 
1.  Know When to Ask For Help
 
Dad was diagnosed with lung cancer in 2000, and with liver cancer in 2004.   In September of 2008, dad was put into Hospice care.  We knew that no more could be done for him medically, so as he declined I told him…

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The First Snow

My sister, Mary Beth, called me just now. She lives in North Carolina. When I answered the phone, she was singing a Christmas song. And I knew. I knew right away, as each of my siblings knew when she called them. Mary Beth was getting snow!! This blog tells about our old family tradition, of how sweet it is, and what these traditions mean even now as we are older.

He Said What?!

The first thing I did when I got up this morning was to look out the window to see if we had gotten any of the possible snow that has been talked about over the past few days.  If you look hard, like between the cracks of our brick walkway out back, or on our roof, you can see a little faint dusting of snow.  It’s just a tiny bit, but it would have been enough at one time to keep up our old family tradition.

My mind goes back on this cold morning to other cold mornings of my childhood.  I remember how Mom would always be up very early, faithfully fixing breakfast for Dad before he left for his job at the railroad station nearby.  Then she would do the same for us, getting five breakfasts ready for us kids before we left for school……and somehow getting herself…

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