Category: Uncategorized

Singing We Go

Aaron LOVES listening to CD’s when we drive places…and yes, we still use CD’s in our van, and sometimes in our kitchen, because we’re old and our van is old and Aaron LOVES CD’s. 

Why does he love CD’s?  Well, he can hold the case and look at the title of each song that is playing, as well as the number of the song on the back of the case.  This is orderly and sensible, which makes great sense to Aaron. 

It’s pretty hilarious, actually, to watch Aaron go through this process, and to hear his voice.  He watches the CD player in the van, for instance, and as soon as the number of the song pops up, he then repeats the number to me and tells me the song title.  It doesn’t matter that I haven’t asked for this information.  He gives it anyway.

The current CD that we are playing becomes his sole focus for however long it takes us to finish this CD.  It’s usually several days, so for that period of time we hear all about the singer or the group.  Again, it doesn’t matter that we haven’t asked for this information.  We will get it anyway, an any time of the day or night. 

At this moment in time, Aaron is listening…again…to Ronnie Milsap.  He adores Ronnie Milsap.  He knows all about Ronnie Milsap…where he was born (near Gary’s hometown!)…his childhood…his blindness…and definitely his songs!  And I can’t tell you how many times Aaron has said, “Mom, when Ronnie Milsap sings, he goes like this!”  At which time Aaron jerks his head around just like Ronnie Milsap does, because Aaron has watched him on YouTube and has keenly observed Ronnie Milsap’s head jerking and swaying as he keeps time to the music.  But when Aaron copies those movements, it’s quite hilarious…and to people in cars beside us, it’s probably quite puzzling.

WP_20180607_15_06_06_Pro (2)

Another musical trait that Aaron displays, proudly and loudly at times, is to sing a main phrase of the last song that he has heard before we exit the van.  There was the day, etched into my memory, when the last song that was playing before we entered Wal-Mart was Shania Twain’s classic, “Man!  I Feel Like a Woman!”  So yes, Aaron walked around Wal-Mart singing…more like saying…with his unexpressive and flat voice, “Man!  I feel like a woman!” 

That was a very interesting day.

Aaron had a doctor appointment today, so I decided that it was a good day for a morning haircut and beard trim on our way to lunch.  We drove to Great Clips, and on our way Ronnie Milsap was singing.  Aaron reached down between our seats to grab the CD, look at the number displayed on the CD player, and then match the number to the title index on the back of the CD box. 

“Number 6,” Aaron intoned.  “All Together Now Let’s Fall Apart,” he read with no expression. 

We soon sat in Great Clips after confirming our on-line check-in.  Aaron was ready for his hair cut NOW, but I told him that we needed to sit and wait…that it wouldn’t be long. 

I hoped.

Soon another customer entered and walked up to the counter.  Aaron immediately thought that she would delay his haircut.  In disgust, he uttered his favorite saying lately.

“Oh, puhleeeese!” he muttered.

“Aaron!” I then muttered close to his ear.  “Don’t say that!”

So I began tickling his back, which always calms him, and sometimes gives me hope that he’ll be quiet.

Then another customer entered.

“Oh no!!” Aaron said. 

Now I was REALLY tickling his back, pushing him down so that I had better access, and also so that his face and mouth were facing the floor!

He then decided to sing.

“All together now, let’s fall apart,” he spoke/sang in his usual monotone. 

No joke, I thought!! 

But soon his hair cut was done, lunch at Longhorn was happily completed, and we ran home for a few minutes.  I needed to let Jackson out to potty, and I also had another chore to do…a bit of a yucky one.

Aaron had informed me, just before we left for Great Clips, that he MIGHT have wet a little…maybe just a little…in his bed during the night.  It wasn’t a seizure, but instead a result of TOO much water before bed.  He has been read the riot act on that, by the way.

More of the story and the extent of the damage was found just before we left, with no time to clean it up.  I couldn’t stay too irritated for too long, though, when at Longhorn Aaron agreed to ask the blessing before we ate.  He stretched his hand across the table for me to hold.

“Dear Lord,” he began.  “Help me not to pee in my bed again.  And thank you for this food.”

How could I stay mad?

So at home, I gathered up his bedding…ALL of it…his many covers included.  I examined the carpet, and then knelt down in the tight spot between his bed and the wall.  The spray bottle wouldn’t work at first, but eventually it did.  But my legs wouldn’t work well, either, as I struggled to get up.  Just then, I heard Aaron at his desk…singing…

“All together now, let’s fall apart,” he once again flatly sang.

He has no idea how my loud laughter made getting up off the floor even harder!!  And how much it helped dissolve my frustration.

I have two Ronnie Milsap songs that I have decided are Aaron’s songs, though he is clueless about them. 

The first one was playing in the kitchen last night. 

“Number 11,” Aaron said with no emotion.  “There’s No Getting Over Me,” he read. 

“That’s a funny name for a song,” he added.

But it’s a PERFECT song for YOU, Aaron!!  There’s no getting over you!! 

And I don’t want to, either!

The second song?  It was playing when we pulled into the driveway after his doctor visit today.  It’s on the second CD disk, in case you’re wondering.

“Number 1,” Aaron said, of course.  “I Wouldn’t Have Missed It For The World,” he finished.

BINGO!!

 

 

Happy, Helpful, and Forgiving

It’s beyond time for an Aaron update.  I do believe I could write every day about life with that young man of ours.  I wish I had that kind of time, so since I don’t, I’m sitting here wondering how on earth to corral my rambling thoughts on recent…or not so recent…Aaron antics.  And not only his antics, but what those actions show about the real Aaron, deep in that brain of his.

Aaron has been mostly happy lately.  He is showing that happiness in various ways.  One way is by being extra helpful, so he’s been taking out the trash and the recycling; setting the supper table; carrying in groceries; and even helping others in ways that are…well…a little intimidating.

I saw that for the second time yesterday as we left Sam’s.  We were walking to our van when Aaron spied a lady near where we parked, putting her items in her car trunk.  She had a couple heavy packs of drinks.  Before I knew it, Aaron was running toward her.  I knew what he was going to do because he had done this same thing last week at Wal-Mart.

“Aaron!” I said.  “Come back here!”

But he was determined to help this random lady.  She looked up, a tad startled at first, but then she quickly relaxed when she saw Aaron.

“Hey!” Aaron blustered.  “I’ll help!!”

She smiled and actually let him!  Then she looked at me with a big smile, which made me very happy, as Aaron proceeded to put her two heavy drink packages in her car.  She thanked him as he stood there with a huge smile, rubbing his hands together in his Aaron way, and then came back to the van.  And I don’t know who was happiest at that point…Aaron, or me!

The lady last week at Wal-Mart was kind but said no to Aaron.  So as I did then, I once again explained to Aaron that his offer was very nice but that he had to understand that running up to various women at their cars might be scary to them.  Aaron thought this to be strange, even after I explained it to him.  It’s so amazing that he doesn’t get it, that social norms elude him. 

I had just seen this demonstrated a few minutes prior to the parking lot incident, while we were in the self-checkout lane inside Sam’s.  A man in the other lane beside us was trying to get the attendant’s attention.  She was talking to someone else and was unaware that this man needed her help.  He continued to try to get her to notice him.  What I was noticing was that this exchange was bothering Aaron.  He was bothered by the fact that the man’s voice was rising, and he was bothered by the fact that the attendant didn’t hear him.  Therefore, Aaron decided to be helpful once again.

“HEY!!!” he yelled out. 

Well, well, well.  This did get the attendant’s attention.  And Aaron got a very annoyed look from her, with a raised eyebrow to boot.  I apologized to her while correcting Aaron, and then she realized about Aaron, and she was kind and understanding, and Aaron’s face turned very red, and I have no idea what the irate man was doing. 

WHEW!!!!

It was another teaching moment for Aaron, with me doing the teaching and Aaron looking around for someone else to help. 

OK, where was I?

Oh yes, I was talking about how happy Aaron has been and how he shows it.  He was so happy to see my good friend, Jennifer, in Sam’s that he gave her a big hug.  Yeah.  SO big and strong that I texted her last night to see if she was hurt.  She said she’s not.  Oh, Aaron!  Just another social norm and boundary that Aaron doesn’t get. 

Sam’s was pretty exhausting yesterday, can you tell?

In fact, by the end of the day, Gary and I were at the end…of our patience and our wits and our nerves.  I don’t know, it was just such a tiring evening with Aaron.  He wasn’t bad at all.  But goodness, he LOVES to talk!!!!

That’s another way that he shows his happiness.  Talking!  Almost incessant talking!!  He’ll be in his room for a few minutes and then we hear him barreling down the stairs.  He finds us no matter where we are…outside, downstairs, in the garage, on the porch or patio, or in the bathroom.  It matters not!  Aaron has something to say and he WILL say it, even if he’s said it a million times before.  You think I’m exaggerating?  It certainly doesn’t feel like it to me and Gary.

We often tell Aaron that we just talked about this…that he needs to look that up on his computer…that we don’t have a clue about it…and we even throw up our hands as we say, “I DON’T KNOW!!!!”  But Aaron is not easily deterred as he pushes on with his comments and his questions and his observations…over and over and over. 

I wish I could say that I’m ever the wise and patient mom.  I wish I could give examples of how to always be on top of these issues.  But in all honesty…and I do try to write this blog with all honesty…I’m just not.  Not always patient and calm and understanding, much as I want to be. 

At the end of last night, when I was at the end physically, Aaron and I were in the kitchen.  He was talking again and I was just so done.  He, I thought, spilled a little water on the kitchen floor and that was it.  I didn’t yell, but I talked through…I’m ashamed to say it…gritted teeth. 

“Just clean up the water,” I said, in my “gritted teeth” voice.

I hurt Aaron’s feelings. 

“Shut up!” he responded.  More than once.

This prompted a stern rebuke from Gary.

Well, the rest of the evening went fine as Aaron and I went through his bedtime routine.  But when it came time to give him his hug and a kiss on his cheek, he put his arms under his covers and said no.  No goodnight.  No hug.  No kiss. 

“Because you were mean to me,” he said.

So I left his room.  But before long he was at my bathroom door.

“OK, Mom,” he said.  “I’ll say goodnight.”

He walked into his room with me following.  He got under the covers, held out his arms for my hug and accepted my kiss on his cheek.  Bless his heart.  He so wants our love.

Forgiveness is a big part of our life.  We have to forgive each other a lot. 

God forgives, too, and I’m surely thankful for that.

And God understands, as my dear friend Linda reminded me this morning.  She understands this kind of weariness as she reminded me that Jesus often tried to get away to be alone…but the crowds still followed Him.  I’m so thankful that God understands, and ever thankful for the forgiveness and peace He gives.

I’ll end on a funny note.  I am sometimes amazed at how quickly Aaron can be irritated by me.  I mean, really – ME?!  Be irritating?

It is very puzzling, though, at what can set him off.  Like the other morning, when feeding our Great Dane and fixing his pills in some peanut butter, I dipped into some peanut butter for myself.  This really bugged Aaron. 

“MOM!!  You act strange!” he said angrily.

“How do I act strange, Aaron?” I asked.

He stared at me a minute.

“In lots of DIFFERENT ways!” he replied as he turned and walked away.

Now if that’s not the pot calling the kettle black!  HaHa!!

WP_20180516_21_45_25_Pro

 

God’s Many Colors

We’ve had a couple days of stormy weather here in Kansas; and for any of you who know me, you know what that means.  Sky pictures!!  I just love looking at our beautiful skies here in the flat land, especially from my vantage point in our daughter’s former bedroom, up on our third floor.  I have taken hundreds of pictures over the years from that same spot.  These pictures show many various scenes of the same scene, if that makes sense.  No two views of our sky are ever identical.

I’ve learned a lot over the years by watching our God-given sky.  It’s no surprise that I’ve also written about it in the past.   The Skies From My Window

We get some amazing storms here in Kansas.  The variety of pictures is limitless.  I love our sky here no matter the season or the weather, but I do have to say that the most stunning skies are the ones that present themselves during the storms.  Just look at some of the shots I took during our storm from two nights ago.

From the beginning:

WP_20180529_20_13_47_Pro

To the middle:

WP_20180529_20_33_57_Pro

 

 

To near the end:

WP_20180529_20_41_26_Pro

All were gorgeous in their own unique way.

I was thinking about yet another storm that roared through during the night last night.  Bright lightning…ferocious winds…heavy rain – we got a hefty dose of all that.  God pruned our trees during the night, for sure, as we awoke to lots of small branches all over the yard.  And though I couldn’t take pictures in the dark, the vivid lightning is still fresh in my mind.

The storms outside our windows have often reminded me of the storms that also come into our lives.  Whether the storms of life come in with a soft wind that builds over time…or if the storms blow in with a gusto that knocks us off our feet…we all face them, at one time or another, and another, and another.

And just like the majority of my most beautiful sky pictures are taken during the storms, so the majority of my most beautiful experiences with God happen during my storms of life.

In fact, James  – when speaking about our trials of life – uses the word “various” to describe them.  And guess what this word can also mean?

Multi-colored!

Just like my stormy, colorful Kansas sky, so my trials are described by God as being multi-colored.  Here’s what James says:

“Consider it all joy, my brethren, when you encounter VARIOUS trials, knowing that the testing of your faith produces endurance.  And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”  (James 1:2-4)

Storms, and trials, can be intimidating and even dangerous.  But God uses James to tell us that we need to consider – to make a conscious judgment – about our multi-colored trials.  And that conscious decision is to face our storms deciding to be joyful.  This joy isn’t of our own nature, but is a fruit of the Spirit in our lives.  And sometimes it takes awhile to feel that joy, that’s for sure.

And remember that joy isn’t happiness.  Joy is a deep-in-my-heart contentment because I know and trust that the God Who brings the storm is the God Who brings it for a very good reason.  I can look ahead to what He promises will come as a result of the storm, too.

Endurance.  That means “abiding under difficulties.”

And endurance produces perfection, which is maturity.

And maturity makes me complete, which means “full development.”

These traits aren’t just academic notes on a piece of paper.  They are real characteristics of a Christ follower who has endured the many difficulties and trials of this life on earth.

Just like the most vivid skies are stormy skies, my most vivid pictures of God’s character have been taken during the storms and trials of my life.  I have learned the most about God during those rocky times that I have needed Him the most.

Sunny skies are nice, and pleasant, and restful, and needed.

WP_20180531_06_44_13_Pro

But stormy skies are teaching skies for me…huge, magnificent photos of God’s mercy…God’s grace…God’s love…God’s protective arms around me.

So when the storms come, as they certainly will, may I not spend the time hiding and worrying and doubting.

May I clearly see the storms, not as an intrusion, but as instruction.

And may I spend the time taking picture after picture of the beauty that God is painting for me, using the palette that only He holds.

WP_20180529_20_55_49_Pro

 

 

 

The Plan

Today is a super special day!  You see, it’s my anniversary…OUR anniversary!  The day that Gary and I said “I Do!!”  It was 39 years ago that I wore the beautiful dress that my mother had made, every stitch lovingly sewn by her hand.  39 years ago that I walked down that aisle of the brand new Johnston Chapel Baptist Church, the first bride to do so in our new sanctuary.  39 years ago that I joined my hand with Gary’s and we embarked on our new life together. 

18699545_10154314196276895_8544907269505125961_o

Doesn’t it sound perfectly romantic?  And it was!!  It was because we planned it that way.  Every bride plans her wedding day to be exactly as she wants it to be.  We’re watching our daughter, Andrea, plan her wedding to Kyle now.  It’s fun to see their special day taking shape. 

No bride and groom plans for things to go awry on their special day.  Sometimes things don’t go as planned on the big day, but the plan is for all to be as perfect as possible.  Perfect plans, planned with perfection…the dress, the tuxes, the flowers, the attendants, the food, the music…each checked off the list as the plans take shape. 

The PLAN!!

Fast forward 39 years, to this morning.

I had a plan for this morning.  I was going to sleep in on this Saturday morning.  My normal wake-up time is 5:30. That’s a.m.  So on a Saturday, I love having no alarm go off.  I love waking up when I wake up, which is never real late but any time past 5:30…A.M.!!…is late for me. 

Part of my careful plan is to even set the coffee-maker alarm for one hour later than normal.  Ahhhh…luxury!!

Therefore, you can understand my irritation when our old Great Dane stood up this morning in our bedroom where he sleeps, and halfway shook himself, and woke me up.  I knew…I just KNEW…what I was going to find.  Jackson doesn’t get up off his mattress on the floor very easily now because he is so old and stiff, but the one time that he will get off his bed is when he either has to go potty, or he already HAS gone potty.

This morning it was the latter.

And it wasn’t even 6:00 yet…which means it was five something…too close to my normal wake-up time for this Saturday morning when I had so carefully planned to sleep late!!

And yeah, there was poop involved, on the floor and on his bed.

I did finally go back to bed after the clean-up, but it just wasn’t the same.

Happy Anniversary day!

Dear Gary had given me flowers yesterday evening, and this morning they were joined by the sweetest card.  Then later, coffee cups in hand, we walked down to our little Mulberry tree with Jackson sniffing all around, and we picked mulberries.  It’s so us, this simple kind of thing.  It’s the simple life that we love in the place that we are.  I was planning breakfast on the patio with the birds and me and Gary, then making his favorite cheesecake, and on I went with my planning.

WP_20180526_08_23_25_Pro

Then the back door opened.  Gary and I saw Aaron coming across the yard.  He was early to get up, as well.  We both looked at each other, knowing what we each were thinking.  Aaron joining us wasn’t really in our plan for this morning quite yet.

WP_20180526_08_23_06_Pro

Aaron wondered what we were doing.  He was unimpressed with the fact that we were picking mulberries.  He wanted us to be back in the house, where we could see that he had his coffee and where we could listen to him talk.  But we continued picking our mulberries while Aaron walked back to the house, a little in a huff because his morning wasn’t beginning as planned, either.

Soon I did fix our breakfast, where Gary and I were once again joined by Aaron.  He was still a bit huffy and on edge, but bacon helped.  I thought it was quite ironic that he was wearing a shirt that said, “No Bad Days.”  HA!!

I wish it could be that simple, but with Aaron it’s just not.  A day not going as he so carefully plans can set him on the wrong path for sure, and Gary and I are dragged along as well.  But breakfast, and joining me as I watered the flowers, and going with Gary to the hardware store, did a world of good for Aaron…and for us…and so our day has been going along just fine.

Not perfect, though, as we would like to plan for our anniversary to be.  But it’s us, with Aaron, and it’s really what it’s supposed to be.

39 years ago, in that pretty church with all our plans coming together, I would never ever have dreamed of having our 33 year old special needs son still living with us.  It’s not that we don’t love Aaron.  It’s just that having ANY child with special needs, and all that this life entails, would never have been in our master plan. 

But our life, with Aaron, WAS in God’s master plan for us…because He is the Master of our lives.  We’re not.  It really is that simple.

Yet not that easy, on many days and in many ways.  We have questioned and struggled and been angered plenty of times over these years.  And still, God reminds us that our plans are not always His plans.  He tells us that He knows the path that we take, because it’s the path that He put us on.  It may be a path with suffering and pain, with questions and even anger, but it’s always with God beside us and under us and all around us. 

I’m thankful that God also forgives us, because we don’t do this very well on some days.

I looked at my cup of tea this morning as we ate breakfast on the patio, Aaron included.  My tea was in a wonderful mug that our friend, Terri, helped Aaron make for me while we were out of town last week.  He wasn’t sure that he would like painting, as he calls it…and he still isn’t sure that he liked painting.  But he is very proud of that mug.  He even opened the running dishwasher the other night when friends were over so that he could show them his mug that he made for Mom. 

WP_20180526_09_13_31_Pro

I will treasure that mug.  I will treasure our Aaron, even on the trying days, with God’s strength.

And I will treasure the careful plan that God has made for our life, including the trying days, with God’s strength. 

Our life began with a plan, and our life will end with a plan. 

Our Wedding - 3

 

God’s plan!  The best plan!!

WP_20180513_11_22_57_Pro

 

 

 

 

The Broad Place

Anniversary:  the yearly remembrance of an event or occurrence.

We typically associate the word “anniversary” with weddings, don’t we?  Which, by the way, Gary and I will celebrate such a remembrance this Saturday.  39 years!!!  I wonder how this is possible…and then I look in the mirror and realize that yes, indeed, this is true.

But there are other anniversary dates as well.  Many are full of happiness, yet sadly, many are just the opposite.  In my Bible, I often make a note beside certain verses that were especially meaningful to me during good times and during not so good times.  I jot down the date and make a short entry about what was occurring when that particular verse, or verses, impacted my life.  I call these my memorial stones, taken from the way that Israel would memorialize important national events by building a stone memorial.  Israel would thus remember what God had done for them there, just as I can remember what God has done for me through significant sections of Scripture during significant times in my life.

I came upon a memorial stone this morning as I was reading II Samuel 22:18-19.

“He delivered me from my strong enemy, from those who hated me, for they were too strong for me.  They confronted me in the day of my calamity, but the Lord was my support.”

I looked at the brief notation I had made, and memories came flooding over me.  The year was 2008 and the month was May, ten years ago.  It’s hard to believe it’s been that long since Gary and I were blindsided by the events that took place.  I really can’t say more about it, but I knew that God’s hand was in it as a direct answer to prayer even though there was much wrong involved.  Our lives have been forever changed…forever scarred…yet forever touched by the hand of God.

You see, after verse 19 comes verse 20:

“He also brought me forth into a broad place; He rescued me, because He delighted in me.”

So now, ten years later, I can truly say that God has brought us to a broad place.  But what does that mean?

Well, places of hardship and distress in the Bible are usually referred to as narrow places.  They are places of being closed in, confined, and full of danger.  But broad places are places of peace and security, where you can stretch and grow and see all around.

I can look back on the past ten years and see the progression in our lives from the narrow to the broad.  I can also attest to the fact that God was very present with us through the awful narrow passages, and He is also very present with us in the broad place.  We need Him in both.

You see, coming from the narrow to the broad doesn’t mean that we have achieved perfection.  Wrong done still carries a huge impact in our lives.  But God’s presence also carries an impact even larger than hurt and pain carries.

Time is ever so slow when we travel from the narrow to the broad place.  There are many, many dangers.  It’s easy to doubt God…to quit serving Him…to blame Him…to resent others…to gossip…

But the painful journey is also the perfect time to hear God speak to us through His Word.  It’s a time for us to take one verse at a time and ponder it, apply it, and let God use those verses to heal us.  It’s a time to learn to look to God and not to anyone else or anything else.  The most disastrous events in our lives cannot hold a candle to the amazing grace and love of God that He delights in showing us, if we but let Him.

David, King of Israel, wrote these verses in II Samuel 22.  He certainly saw his share of turmoil and rejection and danger and sin.  Yet he also wrote this, in II Samuel 15:26:

“But if He (God) should say thus, ‘I have no delight in you,’ behold, here I am, LET HIM DO TO ME AS SEEMS GOOD TO HIM.”

Do you see what David was saying…what he was doing?  David had a grip on God’s sovereignty, as Dale Davis says.  Part of the journey from narrow to broad is being able to understand this:  that we must be satisfied with letting God do to me what seems good to Him.

I did NOT say being satisfied with letting God do to me what seems good to ME.

Sometimes the cancer is not cured.  Sometimes the prodigal does not come home.  Sometimes the lay-off still happens.  Sometimes the grave is where we visit the one we love.  Sometimes restoration is not granted, as happened to us.

Yet regardless of all the “sometimes,” we can say that EVERY time, God knows what is best for my life.

So I hang onto Him, in total trust, and know that my good is of utmost importance to Him.  My good may come at great cost, but it is also of great value for all of eternity.

I’m stretching in the broad place today, thank God!

And so can you.

WP_20180429_08_55_13_Pro

 

 

 

Lessons From the Lone Daisy

You may feel alone or ineffective, but you are never those things when you give to God your simple desires to bless others.

Patty hesaidwhatks's avatarHe Said What?!

We have a flower bed off our front porch that has been a challenge to fill with flowers that will thrive.  It’s a mostly shady area because of our large Golden Rain Tree whose branches provide that shade in abundance.  However, through some pruning of the branches over the years, and some further pruning of a huge bush beside the flower bed, there is now a little more light that comes into that area.  I’ve tried a large variety of plants and flowers over the years in that spot, but even now with a little more sun, finding a plant that will keep growing has been difficult.

This year I decided to plant several flowers in that bed, flowers that are designed to bloom in shade or partial shade.  I’m still not tremendously pleased with how they have done this year.  I’m just not seeing the huge display of blooms…

View original post 980 more words

Long Time and Long Day

My goodness!  It’s been such a long time since I’ve written anything new on here that I had to look back at my last blog to refresh my memory.  I haven’t been able to write about life because of life being hectic and so busy.  When I don’t write for awhile, I feel like I’m covered up with things that I want to talk about.  There are too many happenings to share coherently.  So I hope I will just pull back, focus, and be as brief as possible (since WHEN??!!).

Let me say here that I do write more snippets of life with Aaron on my HeSaidWhat Facebook page.  (https://www.facebook.com/hesaidwhat84/).  You might want to check that out, like it, and follow along.

Now, where was I?  LIFE!

Gary and I did make it to Houston after our crazy few days with Aaron’s seizure injuries, written about in my last blog.  Poor guy!  The morning we left, before Casady (awesome friend!) came over to stay with Aaron, Aaron got out of bed and had blood on his face and pillow.  It was more of a pink blood, but still I was worried about his tooth extraction site.  All was well, though, and he did fine while we were gone.  He only had one seizure during his sleep while Casady was here.

We enjoyed being with our kids in Houston, so much!!  Time with Andrea and her fiancé, Kyle…and our son, Andrew…was great!  It’s always too short, but we’re thankful for every minute.

WP_20180419_19_48_37_Pro 1

It was wonderful to spend time with Kyle before he had to go back out to sea.  Sweet to do a little more wedding planning with Andrea, and to hear about her genetics lab that she manages and of the exciting new project that will soon launch under her leadership.

And it was loud and fast and fun to be at Royal Purple Raceway for the NHRA race that weekend, where Andrew is working now for Leah Pritchett and Don Schumacher Racing.

IMG950297

We got to take Kyle’s mother, Marie, with us on Sunday and introduce her to this sport that you have to see and HEAR and feel in order to fully appreciate.

WP_20180422_12_00_22_Pro

Side note:  Leah was the #1 qualifier that weekend and broke a track speed record!!  And this past weekend, in Atlanta, she and the team took home the Wally!  That means they won the race, for those of you who were like me a few years ago and have no earthly idea what a Wally is!

DcjXShnUwAAoStq[1]

Even Aaron, who used to be very jealous of Andrew and who bad-mouthed racing, has become a huge fan.  This past Friday, I picked Aaron up at the theater after his group had watched a movie.  It went like this:

 

Me: Did you like the movie?

Aaron: Not really.

Me: Why not?

Aaron: Well, it was about a volleyball game.

Me: Oh, I love sports movies! Why didn’t you like it?

Aaron: I don’t like volleyball. I only like drag car racing.

 

We never thought we’d see the day!

So Aaron has had a few more falling seizures since our return from Houston.  He scraped his neck on the edge of his desk.

WP_20180429_20_03_38_Pro

He fell the following morning as we headed out the door, but I was able to somewhat break his fall, thank the Lord!  Our unfinished floor would have been brutal for landing!  He did bend his glasses but that’s no big deal.  Then he had another seizure that night but was sitting, which was a blessing.

I think I’ve figured out a pattern for these seizures, somewhat.  I changed Aaron’s appointment to his Epileptologist in order for him to be seen sooner.  Gary and I have decided to try CBD oil, and our doctor agreed to that plan.  It arrived today and I’m anxious for Aaron to give it a go…and praying that it will help his seizures, and aid in other ways as well.  Aaron has lost lots of weight and has been over drugged, big time, so we really weren’t wanting to go back to adding more meds.  We have lowered his seizure drugs and are hoping we can stay there.  I was reminded this morning as we drove to his day group about how very tired these drugs make him.

WP_20180509_11_23_29_Pro

Scenes like that tug at my heart.  I so desire for Aaron to live as normal a life as possible…to feel alert and strong…to be happy.  Many things beyond his control so often prevent that from happening for him.  Seizures…autism…behaviors – all of it can make his life challenging.  One minute he has me laughing…then he has me crying…later I want to throttle him.  So it went on Tuesday.

Our van was in the shop for new tires and some other necessary work.  I couldn’t take Aaron to Paradigm, his day group.  He was quite happy about that, for no matter how much he loves Paradigm and his friends there, he thinks that staying at home is the absolute BEST!  Here is what I wrote on my Facebook page about one of our morning encounters that day.

 

Aaron is staying home today because our van is in the shop for new tires and a check-up. Therefore, I can’t drive Aaron to Paradigm.

Therefore, Aaron is following me around as he talks…and talks…and talks.

Therefore, I have already told Aaron several times that he needs to go find something to do.

It is only 8:37.

Aaron found something to do. He is watching Falling Skies, so he hurried downstairs to tell me that the Queen Skitter Alien is big. Why is she big? Why is she the Queen? Why is there not a King?

Therefore, we discussed Queen Ants and Queen Bees, including their size, which is large. Huge, even, according to Aaron.

There ARE times that Aaron does connect the dots. Usually in ways that are unwanted.

Therefore, Aaron just barged down the stairs with this tidbit:

“Mom!! You’re the Queen, because you’re HUGE!!”

Therefore, I gave Aaron my best stink-eye stare, which he finds quite funny.

Therefore, it’s gonna be a LOOOONG day!!!!!

 

I had no idea when I wrote that about WHAT a long day it was going to be.  Aaron was first funny…

And then Aaron pulled at my heart.  I was outside watering and weeding some, and Aaron decided to “play in the mulch,” as he calls it.  He has always, since he was a little boy, enjoyed breaking sticks and leaves and mulch into tiny pieces, and watching it fall into his trash can.  It’s a very autistic behavior which relaxes and calms and focuses him.  But there is something about it, especially now that he’s an adult, that just touches my heart for him.

WP_20180508_10_13_15_Pro

He also decided to lay back on the sidewalk for a minute, and I wondered what neighbors or passersby may have thought if they saw him.  I often wonder that when it comes to Aaron, actually.

WP_20180508_10_15_41_Pro

Later came the frustration.  GREAT frustration!

Aaron was not having as much fun staying at home as he thought he would.  He was at loose ends, seemingly bored though constantly denying it, and was continually following me around the house…talking and talking and talking.  I had lots to do and we had no way to go anywhere, except to take our Jackson for a lingering walk around the yard, so Aaron was trapped.

I was trapped!!  In desperation I threw out a life line.  I know better than to do what I did, but I did it anyway.  I told Aaron that when Dad got home from work, we would go to the shop and pick up the van.

What was I thinking??!!  I know not to tell Aaron that something is going to definitely occur…or sometimes to even tell him that it MIGHT occur…because if it doesn’t, then Katie bar the door!!  And I know not to tell him far ahead of time, because the event then becomes his major focus.  I think he had sucked all the oxygen out of the room and I was light-headed.  Not thinking clearly, you know.

Aaron wanted Dad to come home, way before it was time for Gary to be home.  He asked and asked and asked when we were leaving.  I watched the change coming over Aaron with each time he asked that same question, over and over and over.  His focus had narrowed to that one upcoming event, and he wanted it to happen NOW.

When Aaron is like this, his mood becomes angry and impatient.  He wants what he wants, immediately, not later.  It’s totally impossible to veer him from the one thing upon which he is, at this point, obsessing about.

The more I said, the angrier Aaron became.  He was rude and belligerent.  I was tired and frustrated.  I walked away from Aaron several times before saying something that I knew I would regret.  Funny Aaron was now fuming Aaron.

It truly is amazing to see how his mind works at times like this, though I would rather not.  We’ve often said that at these times, Aaron is like a train on a track and there is no derailing him.  A milkshake might have done the trick, but that wasn’t an option.  It was a long late afternoon.

Then Gary got home, unaware of the tension in the house.  His phone rang right away and I listened as he was being told that the van wouldn’t be ready until the next morning.  AAAAHHHHH!!!!

But Aaron was spent, I guess, and with a new person in the house to talk to, he cheered up dramatically.  Gary is amazing, coming home from a demanding job and then dealing with the demands of Aaron.  Aaron was content to later watch some television with me, and then play a game of Skip-Bo…which he won, happily!

Recently, a friend sent Aaron some money for him to use in whatever way he wanted.  As we strolled through Wal-Mart, Aaron found this:

WP_20180504_15_04_49_Pro (2)

Aaron flashes the peace sign all the time, so this figurine was perfect for him.  He wanted it right away, so some of Bill’s gift was used for this gift for Aaron.  It’s a perfect fit!

And it’s a perfect reminder to me that peace always returns after the rough spells – both peace in our home and peace in my heart.  That’s because I know the God Who made Aaron.  I know Him personally and He guides my every step, orchestrating each day.

God’s peace is only one of His many gifts to me.

Aaron is another one…another of God’s gifts.  I need to remind myself of that fact at times.

Actually, God has many ways of doing just that in my life…of reminding and refreshing me.

And for that…and for Aaron…I am grateful.

WP_20180505_10_26_50_Pro

 

 

 

 

 

 

Lessons From the Spring Snow

As the bird reminded me of the coming spring, may we also be reminded of God’s faithfulness to us in every stinging storm that we face.

Patty hesaidwhatks's avatarHe Said What?!

Although the calendar doesn’t say that spring is here yet, officially, you sure couldn’t prove that by the gorgeous weather that we have been enjoying. Days have been warm and sunny, birds are singing, robins have been spotted, and even that particular smell of spring has been in the air. My Salvia, Black-Eyed Susans, Garden Phlox, Peonies, and Shasta Daisies are all peeking out of the soil, showing off their fresh green growth. Many trees and bushes are budding, and I’ve seen Bradford Pears in full bloom as I drive around town. It’s a refreshing and peaceful time of year – a time of stretching and breathing deeply of the warm air, full of the smell of damp earth and the promise of warmer days ahead.

Two days ago the winds began howling, not at all unusual here in Kansas. These winds, however, began to change direction as night fell…

View original post 813 more words

Topsy-Turvy Times

I got a phone call last Thursday afternoon, soon after I had gotten home from running errands.  I saw that it was from Barb’s cell phone.  Barb, who works at Aaron’s day group, often lets Aaron use her cell phone to call me.  Or Aaron often uses her cell phone even without permission so that he can call me and tell me something about his day, and then insist that Barb and I need to talk…and we laugh every time about that as we talk for a minute and make Aaron very happy.  So I was sure that this call was just another call from Aaron as I answered the phone.

But it wasn’t Aaron.  On the other end of the line was a staff from Paradigm who was using Barb’s phone to call and tell me that Aaron had fallen during a seizure.  Aaron was standing when he suddenly fell, seizing, and had hit the cement floor.  She said they were sure he would need stitches in his chin.  She was right.

I left for Paradigm as quickly as I could, thankful that our old Great Dane was beyond caring about the groceries left around the kitchen within his easy reach.  I walked in and found Aaron surrounded by Barb and the nurse, sitting in a chair with paper towels being held on his chin.  He was alert, ready to tell me all about his injury and ask if we were going to the doctor.

Which we did.  We went to the hospital nearest our house, out in the country, where the ER wait is next to nothing and the care is good.  The girl at check-in put an ID bracelet on Aaron’s arm…his arm on which he wears his watch, way up high.  There is plenty of room on that arm for both bracelet and watch, but Aaron doesn’t think so.  Immediately when we sat down in the waiting room, Aaron had me take off his watch.  I knew that here, as is true everywhere, Aaron’s way of doing things would be the way that things would be done, if he had any say in it at all.

He would sure enough need stitches, we were told.  No surprise there.  Aaron was taking it all in stride.  He doesn’t panic, thankfully, but he has questions during times like this, wanting to know about the process and the procedure…would he feel it…how many stitches would he need…and could he go home after this was all done.

When things were quieter, as we waited for the doctor and Aaron leaned his head back on the pillow, I looked at him and felt so sorry for all he goes through.  I couldn’t linger long there, though, in those thoughts because I knew I would cry and I knew that my crying would greatly bother Aaron.  He doesn’t have the emotional feelings about life that you and I have.  This is to his benefit, really.  But I do have those emotions, especially as his mother.  Looking at his split chin and his scuffed, swollen cheek just brought home to me the fact that life is hard for Aaron.

WP_20180412_15_46_53_Pro

Aaron doesn’t enjoy the pain he experienced.  He doesn’t like his seizures.  But Aaron also doesn’t complain about it or seem to feel at all sorry for himself.  That’s what I mean about the fact that he doesn’t display the emotional feelings about his life that others might do. He’s mostly concerned about the facts.  Will stitches hurt?  How many stitches will I have?  Can I go home afterwards?  What’s for supper?  When can I wear my watch again?

Not – why do I have to be the one with seizures?  Why can’t I drive like others do?  Why do I need so much help all the time?  Why is life unfair to me?

I’m SO thankful that Aaron doesn’t express those feelings…that they don’t even seem to be on his radar.  Once in a long while he’ll say something telling, though, like the time he asked me what went wrong with him.  Or is God mad at him and gave him seizures.  But those thoughts are verbalized very seldom.  Aaron is mostly about the here and now, and about living life in the routines that matter so much to him.  Predictability and sameness in his days are far more important to him than weightier matters such as the fairness of his life.

Gary and I are left with those weightier matters that are heavy on our hearts.  And I was feeling it as I watched Aaron flinch several times as he endured the stitches.  He told his Aunt Sandra about it that night as they talked on the phone.

“That doctor put on the numbing medicine and then he put on the stitches!” Aaron told her.   Somehow he can always make me smile.

But by the end of the evening, as I told my friend Sarah, I just wanted to crawl off in a corner and have a good cry.  That wasn’t to be, though.  As soon as Aaron got in bed later that night, within five seconds after I left his room, he had another seizure.  They happen so quickly!  Thankfully he was laying down in bed for this one, safe from falls.  I was in bed myself as soon as I could after that, very tired…too tired to take time to cry.

The next morning I sat at my quiet time desk, early, wondering what God would show me from His word.  He didn’t disappoint me.  He never does.  I’m reading through II Samuel – again – using a devotional commentary written by Dale Ralph Davis.  In chapter 7, God was explaining to David why he would not be the one to build Him a temple.  And this phrase, read so many times before, jumped out at me as I read it…and then read what Davis had to say.

God was speaking: “In all the places where I have travelled around with all the sons of Israel…”

God lived in a tent among His people as they wandered in the wilderness.  As Davis says, “Do you see what God is saying about Himself?  He is the God Who travels with His people in all their topsy-turvy, here-and-there journeys and wanderings.”

The God of the universe travelled with His people while they spent years in the wilderness…years spent there because of their sin and disobedience.  Davis continued: “That is only a pale glimpse of the condescension of the covenant God, the God Who will not enjoy rest until He gives His people rest , the God Who stoops down to share the hardships of His people, the God Who is not ashamed to say He has been ‘travelling around in a tent’ with them.  See how close He is to you!”

On my tired, sad morning as I hurt for Aaron once again, I was overwhelmed with joy for what God had shown me.  God never lets me down, especially when I need Him the most!  I don’t deserve His kindness to me but I sure did thank Him for His hand on my shoulder that moment…His arm around me and His promise to be with me so fresh in my life as I sat at my desk.

His presence doesn’t necessarily take away all pain or grief.  But He sure does pour comfort over me.  And the certainty that He has a purpose for all that goes on with Aaron fills me with peace.

It’s not a peace based on my feelings.  It’s a peace based on my God.

I felt that same peace as we realized over the weekend that Aaron had probably damaged a back molar during his fall.  I took him to our dentist yesterday, who confirmed that the tooth was broken beyond repair.  Off we went to an oral surgeon, who thankfully was able to extract the tooth right away.  And there I sat once again, watching Aaron sit in another exam room for yet another procedure.  I listened to his questions that he asked the dental staff and that he asked me.  I watched his eyes focus an all the items in the room, processing each one in the way that he always does.  I hurt for his fear that he expressed.

WP_20180416_15_21_37_Pro

But I also thought of my travelling God, and how He was right there with us in that room.  I was thankful for that, SO much!  Thankful, too, for the sweet nurse who told me about her young son with seizures, and how we talked about prayer and our faithful God.

When all was done, Aaron was done…ready to lead the way out the door.  Ready for his large chocolate milkshake from Sonic – with NO straw!  Ready for his mashed potatoes and a few deviled eggs for supper.  Very ready to show Dad his tooth and the roots, placed in the little pink tooth box that he can carry around and proudly show to everyone.

Ready to take a walk, in his pajamas, with Gary and Jackson.

WP_20180416_18_06_25_Pro

Ready to bring me his treasure that he had found, and that Gary had explained to him.

WP_20180416_18_07_12_Pro

Ready to touch my heart with his lopsided, numb grin as he showed me the dandelion seeds.

WP_20180416_18_10_52_Pro

Ready to be used by God once again to show me so much, in ways he doesn’t even know.

What Is

It happened to me again several weeks ago.  An innocent conversation…a random comment…and I found myself having to corral my thoughts into line with some principles that God has hammered home to me over and over again for years. 

I want to be honest about what happened, but I also don’t want to alienate family or friends.  I don’t want anyone to think they can’t share their life with me.  So here goes.

This person was talking to me about his upcoming retirement, and then the plans that he and his wife had.  Later, as Gary and I drove away, I shared with Gary how I had that twinge of longing as our friend talked.  And how I knew better than to dwell on it and to therefore give Satan that opportunity he always looks for, the opportunity to push that door fully open that I have allowed to crack open, even just a little bit. 

You see, our life with Aaron is a life far different from typical couples our age.  Gary and I are not fully free to do many of the things that our peers are able to do.  And that’s OK…truly OK.  But sometimes the comparisons come, and if I am not careful then I can wallow in misery, and therefore open myself to sin and defeat.

The very next day…literally…after this conversation, I was at my desk as usual in the early morning.  I opened my Bible and my study book to the section of I Samuel that I was reading and was soon amazed at how God spoke to me in those quiet moments.

I read about Saul’s son, Jonathan, and his deep friendship with David.  Saul was the king of Israel, but because of his sin and disobedience, God had told him that his reign would end with him.  His family would not inherit the kingship.  This meant that Jonathan would never be the king.  But who would be the next king?  David…Jonathan’s dear friend.

Jonathan knew this.  He knew that he would never be king.  In fact, in I Samuel 18, Jonathan gave his robe, along with his armor and his sword, his bow and his belt, to his friend David.  This act was a symbol of the fact that Jonathan was surrendering any right he had to the throne…surrendering it to David.  And not only that, but Jonathan continued to be an even better soldier and leader than his father, the king.  Jonathan certainly behaved in a godly, kingly fashion, even though he knew he would never assume the throne. 

As Dale Davis says in his book, I Samuel: Looking on the Heart: “For Jonathan, then, the kingdom was not his to seize, not his to rule, but his to serve.”

And then this, which impacted me so greatly: “Maybe a tragic life isn’t tragic if it’s lived in fidelity to what Christ asks of us in the circumstances he gives us.”

Did you catch that?  Living in loyalty to Christ IN the circumstances He gives us! 

That’s what Jonathan did.  He lived royally even though he would never in reality BE a royal.  He lived in covenant relationship to God, faithfully, IN his circumstances.

This is exactly what I am supposed to do, every day.  I thought that morning of I Timothy 6:6, of what Paul told Timothy.  Paul said that “godliness with contentment is great gain.”  The note in my study Bible says that this is “an inner satisfaction with the situation that God has ordained for him.”

But how on earth is that possible, day after day…that inner satisfaction with situations in life that are so often very UNsatisfactory?!

This satisfaction is only possible when I realize that it doesn’t come from ME.  I can’t manufacture this deep peace.  Only God can do that in my heart as I surrender all my rights to Him and then obey Him by trusting Him. 

It’s realizing that God Himself loves me, and He is the One that has given me what I have in this life, hard as some of it may be.

My circumstances are not the hand I have been dealt.  My circumstances are not bad luck…or good luck.  They are not the luck of the draw.  Nor are my circumstances due to karma, or any other such nonsense that we sometimes are inclined to believe. 

God chose me and He saved me, and as His child I know that each occurrence in my life…every situation…is entirely under His authority and in His plan for me.  I know He loves me and I know that I can trust Him, totally, to do what’s best for me and what will cause me to give Him glory.  What a waste if I don’t!!

So when the pain comes to my heart and my life…when I’m inclined to settle in the negative thoughts and desires and questions that pop up so unexpectedly…I have the responsibility to do one thing right away.  That one thing is to talk to my Father and let His loving arms surround me with His peace.  And then obey, like Jonathan did.  Just live in obedience, step by step, and know that God will honor that obedience in my life.

He may not honor my obedience by taking away my situations, but that’s not why I am to obey. 

So the bottom line in all of this is just this: 

May my circumstances not dictate my response, but may my response be dictated by God’s character.

What is…is…because God is the One in charge.

WP_20160925_19_26_47_Pro_LI

And He is a very, very good God.