Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

Some Special Heroes

Patty hesaidwhatks's avatarHe Said What?!

Hero:  One endowed with great strength or ability; one that shows great courage. 

Don’t quit reading.  I promise I’m not going to launch off into my opinion of Hollywood’s latest hero worship fiasco.  Besides, those of you who know me know what I think about it….and I certainly don’t need to add my voice to the many voices who have so adequately expressed my views. 

I was going to write this blog anyway, someday, but now I have many reasons to do so.  And yes, a big reason is the messed up qualities that our culture is trying to cram down our throats…..not only the person this week but the people every day and every week that they try to convince us are worthy to be called heroes. 

Another reason I want to write about some heroes I know is because of…

View original post 1,041 more words

My Priceless New Year’s Gift

I was sitting by our Christmas tree this morning, knowing this is the last time I’ll be enjoying its soft beauty this year.  And it hit me.  Everything I do today will be the last time I do “that” this year, because tomorrow is a whole new year!  My brain, fuzzy from another long seizure night with Aaron and waiting for my first cup of coffee to kick in, tried to wrap itself around that fact.  2017 is almost here!

I’m not really as excited as that exclamation point may indicate.  I mean, a new year is always pretty cool to think about.  But life has a way of pulling us back to reality, especially as we get older, and for me my vision is narrowed to what I have on my plate right now.  I know I need goals, but on days like today, today is about all I can handle.

Up four times with Aaron and once with the dog last night made my reality at that moment very narrow.  It was the tree and the lights…..my coffee…..and the baby monitor beside me as I listened to Aaron after he returned to bed, my ears jumping into alert mode at each change in his breathing.

And one more thing……a word.  The word “grace.”  Sometimes that word may be overused, if that’s possible, and for me may lose its full meaning.  But this morning that word kept going through my tired mind.

Two meanings of this word popped up on my handy phone dictionary app.  They are:

1)      The freely given, unmerited favor and love of God.

2)      The influence or Spirit of God operating in humans to regenerate or strengthen them.

Perhaps my favorite grace passage in the Bible is 2 Corinthians 12:9-10.  I was drawn to that this morning, and though I know it pretty well by heart, I made myself actually walk upstairs to get my Bible.  Really, walking up the stairs took some effort this morning.  I felt like I should copy Aaron, who earlier went up the stairs monkey fashion on all fours, as he often does.

Anyway, Bible in hand, I sat down and opened to these familiar verses.  Paul had been given his “thorn in the flesh,” whatever that was…..and three times he implored God to take it away.  Implored…..past tense.  It seems that Paul was done with asking God to remove it, and was now able to say in the next verse that God “has said,” meaning that there was an ongoing result of God continuing to say these truths to Paul:

“And He has said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’  Most gladly, therefore, I will rather boast about my weaknesses so that the power of Christ may dwell in me.  Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”

One thing I had written beside these verses in my Bible, my memorial stone, was simply:  “Feb. ’92, Aaron.”  That was the terrifying day in Germany, 25 years ago, when Aaron had his first big seizure.  I’ll never forget that Sunday afternoon in our kitchen in military housing…..the terror of him falling backward into my arms…..blood coming from his mouth as he seized and I screamed for Gary……the frantic phone call……the ambulance……the German children’s hospital…..language barriers with doctors…..so much to absorb and to understand and to fear.

But God was there with us bringing His unmistakable peace and calm, due only to His grace.  It had nothing to do with Gary and me being strong, or having a certain personality, or any of that “me” stuff.  I was a momma wreck!  It was totally God pouring out His strength…..His grace…..onto and into me.

So here I was this morning, 25 years later……TWENTY FIVE!!!!…….and God pulled me back to these memorial verses.  Nothing has changed.  Aaron had four hard seizures last night.  God has not taken away this thorn, this reality, this sadness in Aaron’s life and in ours.  But he has, over and over and over again, shown us His grace….His love……His favor…..His strength…..in the middle of our pain and our struggles.

So am I, like Paul, “well content” with this weakness that God has given our Aaron and us?   That phrase means “to take pleasure in.”  Well, no.  I can’t honestly say that I take pleasure in Aaron’s seizures or in his autism.  But I must look beyond all that list of things Paul mentions “taking pleasure in,” and look at those words, “for Christ’s sake.”

For my whole life, really, is to point to Christ.  That’s what following Him is all about, after all.  And if I could handle it all myself, I wouldn’t need Him.  But I DO need Him!!  And therefore, what Paul said is so true.  “When I am weak, then I am strong.”

Strong because God makes me that way, and He makes me that way only because of His grace.  Back to that word again…..grace……the outpouring of His favor and strength upon me.

So I just found my resolve for this new year.  It’s to come back to the realization that I can’t change a thing, but I don’t need to change a thing.  Recognizing my sorrow and my pain isn’t meant to point to me and to make me the focus.  It’s to point to Christ and to talk about His grace through it all.

“So that the power of Christ may dwell in me,” Paul said.  That word “dwell” means “to pitch a tent.”  Christ’s power is here for the long term, for me, as I rely on Him and trust Him in the hard times and thank Him through all of it.

His grace is here for all of us who follow Him.  What a priceless gift!  So I close with the words of this old song written by Don Moen, perfect for this new year ahead.

 

                     He Giveth More Grace

He giveth more grace as our burdens grow greater,

He sendeth more strength as our labors increase;

To added afflictions He addeth His mercy,

To multiplied trials He multiplies peace.

 

When we have exhausted our store of endurance,

When our strength has failed ere the day is half done,

When we reach the end of our hoarded resources

Our Father’s full giving is only begun.

 

His love has no limits, His grace has no measure,

His power no boundary known unto men;

For out of His infinite riches in Jesus

He giveth, and giveth, and giveth again.

 

His grace is such a gift!  And so is our Aaron.

wp_20161108_12_07_34_pro

wp_20161108_18_27_21_pro

 

 

 

 

The Darkness

Patty hesaidwhatks's avatarHe Said What?!

On Thursday evening, Gary and I noticed that Aaron didn’t seem quite like himself.  He became lethargic as the evening wore on, even falling asleep sitting up in his favorite family room chair.  Then he wanted to go to bed early…..and for Aaron to agree to a bedtime before at least 10:00 is very unusual.  It’s like his lunch at 12:00 mindset.  Bedtime should not occur before 10:00 in Aaron’s world, so his desire to head on up to bed at 9:30 combined with his tiredness made Gary and I wonder what was going on with him.  

Therefore, we weren’t too surprised to hear him having a seizure a couple hours later.  It was a very hard seizure, lasting about four minutes.  Three other long, hard seizures followed that one during the night.  He wet the bed after the second one, bit…

View original post 1,053 more words

A Light In the Dark

It had been a dark day here.  Clouds were thick with not one peek of sunshine all day.  The outline of the bare trees was stark against the grey sky.  The big oak tree out back looked dull, even though its leaves were still clinging to its branches.  It was just a heavy day in the way that often happens at this time of year.

wp_20161209_17_04_07_pro-2

And then suddenly everything changed.  I’m glad that I looked out the window when I did.  The change, though stunning, was very brief.

wp_20161209_17_00_34_pro-2

Somehow the sun did shine through that thick layer of clouds.  And what a difference its appearance made.  Color returned to the world outside my window!  Greens, golds, rusts, and even blacks were so beautiful in those few moments.  And those moments showed me that the sun was there behind the clouds, still shining even when the clouds hid its brightness again.

I don’t know why sometimes God allows His children to endure prolonged periods of heavy, dark days.  I do know that suffering makes us more like Christ.  Suffering is the tool that God uses to form us into His likeness……to show us Who He is……to bring Him glory.  Sometimes it just doesn’t make much sense, though.  And it hurts, deeply hurts.

There is hope.  God hasn’t gone anywhere, even when we can’t see His light.  These few words that I read recently say it very well:

“Light arises in the darkness for the upright….”  (Psalm 112:4a)

This is so much more than our human wisdom.  This promise isn’t, “Just look at the bright side!”  Sometimes there is totally no bright side to see anyway.  Please don’t tell me to try to find one.

The light that arises in our darkness is the Light of the World.  The baby that we celebrate this time of year is that Light.  John called Him the true Light.  But baby Jesus was born into a dark world in a dark manger.  His life was hardship and ended in horrific pain….all because He was the Light.

His light shines into all my dark places today, not only to expose sin, but also to show me the way and to show me that He is there in the darkness.  He is there to comfort……He is there to provide…….He is there to love.

I don’t have to “find” Him.  He shows Himself to me in sudden ways, sometimes even brief ways, like my burst of sunshine on that heavy day.  He brings sweet answers to prayer.  He fills my heart with peace.  He brings a friend to cheer me.  He reminds me of my many blessings.

The dark days grow my trust.

The light that arises in that darkness reminds me of the One in whom I trust…..that He is there and He is faithful.

The light shines best in the dark.  May I remember that truth on every dark day.

Have a Tootsie Roll!

My writing about life with Aaron has taken a back seat lately.  Actually, more like the back car on a very long train.  Traveling over Thanksgiving and then returning to the mad rush of Christmas preparations have certainly been major factors.  But there’s more to it than that.

I feel overshadowed.  Living under a dark cloud of Aaron issues.  Increased seizures…..medicine decisions……doctor visits.  But even heavier than those concerns are the disruptions caused by his behaviors, which honestly have at times been far from nice.

Autism……family therapist…..psychiatrist……investigating alternative medical helps…….phone calls……meetings.  It can get overwhelming sometimes.  Keeping our cool can also be next to impossible, sometimes as impossible as understanding what makes Aaron tick.  But we must understand that Aaron operates with a very unique mindset, without most of the filters that others have, and that he is constantly bombarded with sounds and ideas and stimuli that you and I never have to handle.  His day group is a perfect breeding ground for noises and irritants and unusual people that can aggravate him quickly.  We rarely see the behaviors at home that they see there.  It can get messy.

Today I saw the side of Aaron that I wish he showed every day.  It’s there…..just sometimes not seen as vividly as I saw today.  Yeah, he got mad at a game this morning before we left for his dentist appointment.  But he and I had a good discussion about it as we drove to the dentist’s office, where he also relished discussing his angry experience with the office staff, and with anyone else who had ears.  He has no shame…..really.

As we left the dentist’s office, he gladly grabbed a cookie that was offered to him by the staff.  And Tootsie Rolls that were in a bowl.  Did he ever take Tootsie Rolls!  I had no idea.

He ate one or two in the car on the way to Pizza Hut for lunch.  The Pizza Hut buffet, heaven on earth for Aaron.  All You Can Eat…..anything…..is heaven on earth to Aaron.

As we left Pizza Hut, paying for our All You Can Eat buffet……where Aaron really didn’t get to eat all he could eat because Mom stopped him way too soon……

Anyway, as we left and were paying at the register, Aaron pulled out yet another Tootsie Roll from his pocket.  “Here,” he said to the smiling lady behind the counter.  She was smiling because Aaron had tried to hide from me while I was in the bathroom.  He was standing near the exit doors, peeking around the edge of the wall, grinning from ear to ear and then laughing loudly when I saw him.  All of this in full sight of a banquet room full of people who were supposed to be listening to a speaker, but who were instead looking at Aaron and me with grins on their faces.  Story of my life.

So Aaron pulled out the Tootsie Roll, handing it to the now laughing employee, and said, “Here.  Because I liked the food today.”

When does he never like the food today?

But she was so happy to get his Tootsie Roll!  She took it and thanked him, telling him that she loved Tootsie Rolls.  Aaron was super pleased at her reaction.

“Look!!” he loudly said.  “See how many I got at the dentist?!”

768595072_f0f925d3d0_o-jpg-crop-cq5dam_web_1280_1280_jpeg

Oh dear.  He pulled out a whole fist full of Tootsie Rolls.  All I could think about was the fact that the ladies in the dentist’s office probably saw him take that stash while my back was turned to Aaron.  When will I learn to never turn my back on Aaron when there are cookies or Tootsie Rolls involved?!

I gave him the “Don’t Be a Tootsie Roll Pig” lecture on our way to TJ Maxx, while he unwrapped Tootsie Rolls and enjoyed his free dessert.  He offered me one and I accepted, feeling like a hypocrite.  I stopped the lecture.  Shouldn’t talk with my mouth full.

We walked into TJ Maxx, where I told him that I was looking for a gift for Nora.  Nora is my little elderly friend that I take out once a week.  She was our neighbor for 15 years before moving to assisted living.  Aaron knows Nora.  Sometimes he’s been not so nice to her, but other times he’s tolerable.  Today he surprised me.

“Mom!!  I want to get Nora a Christmas gift!” he exclaimed.  “Here!!  I want to get her……this!!”  And he grabbed the first thing he spied, a Christmas candle holder that I knew Nora wouldn’t need or want.

Aaron’s desire to get Nora a gift just made me very happy, so I told him that we would look for something.  We were browsing in the perfume section when I heard Aaron talking to someone.

“Here!” he was saying.  I looked over to see him offering the employee manning the dressing room……you guessed it……a Tootsie Roll!!

This young lady looked a little uncomfortable as big Aaron held a Tootsie Roll out to her.  At first she declined his offer, but then for some reason she said yes.  She looked at me with a smile and at Aaron with a smile as she accepted the Tootsie Roll.  And Aaron laughed with delight as he bent over and rubbed his hands together, oblivious to shoppers who were looking and this new friend whose mind was full of questions, I’m sure.

It was really very, very sweet.  Sometimes in these moments it’s tempting for me to be too embarrassed to enjoy what just happened.  Today, though, I really relished what Aaron was doing.  I loved it!!  I loved how happy it made him to share with strangers.  And how happy these strangers were to have received such a spontaneous little gift from unusual Aaron.

Aaron had not forgotten that he wanted to buy a gift for Nora.  We looked here and we looked there, and finally I saw a perfect box of chocolates.

“YES!!” Aaron said when I showed him the box.  “Let’s get that!”

Later, at supper, Aaron had a thought.

“Mom?  Can Nora eat that chocolate?”

I told him she could…..that she loves chocolates.

“But does she have fake teeth?!”

I told him she does not have fake teeth as I tried not to laugh.

“Good!” he answered.  “I thought she might have fake teeth and couldn’t eat it.”

Aaron wants to give the gift of chocolates to Nora, in person.  I am quite sure that he will ask her if she has fake teeth.  She still hasn’t forgotten how he once said that she was old.

See what I mean?  No filters…..no shame.

But Aaron has a big heart.

Here.  Have another Tootsie Roll.

I need to give the dentist a bag of Tootsie Rolls at my next visit.

 

 

Dad’s Bible

Eight years ago today we got the news that my Dad had stepped into heaven.  And for eight years before that, Dad had fought a hard fight against the cancer that eventually took his life.  So many stories of that time in our family…..so many memories of the month I spent with him and Mom before he died.  I’ve written much about it in the past.

This past Thanksgiving our family gathered in West Virginia, in our hometown.  Some still live there in Princeton.  Others had far to travel.  It was an epic gathering, really, and the first time many of us had seen each other in years.  Mom and Dad would have loved it, we all found ourselves saying over and over.  Wouldn’t they have been so happy that we did this?!

And look how we have grown.  This picture was taken in the mid-90’s.

10450002_10152043717116895_8177161752099854022_o

The below picture was taken this Thanksgiving.  Yes, we have multiplied!  And we were missing a few who weren’t able to come!

15220184_10207466956407654_3333139411683744376_n

We had a wonderful time, all too short, of hugs and laughter and lots of talking as we tried to catch up with each other.  The day was over all too quickly.  As nice as it was, though, I felt like something was missing.  It just didn’t feel the same.  I realized, as I thought about it, that the something missing was actually someone who was missing……Mom and Dad.

In the past they were the center of everything.  Stories…..laughter……teasing……singing.  So much of that revolved around them, and now for the first time this very important part of all our lives was gone.  That was the huge difference that I felt.  It just wasn’t the same, and I guess it just couldn’t be without Mom and Dad there as our focus.

13179402_10153381944041895_6239919585158455333_n

I’ve been thinking today about Dad on this anniversary of his death.  And remembering the very poignant part of our recent Thanksgiving meal when my brother, John, read to us out of Dad’s Bible.  He told us this story before he read Psalm 145.  In John’s own words:

wp_20161124_13_06_19_pro

 

Regarding Dad’s Bible, it started on Thanksgiving of ’15, when I reached up to a shelf at home to get a Bible to read Psa 145 for our family.  I knew it was Dad’s Bible, but didn’t remember that he had carefully marked his daily readings with the dates on which he read each section (including the introductory notes and the 500 pages or so of study notes at the end).  When I looked at Psa 145, I noticed he had read it on Nov 26, 2000, exactly 15 years to the day before I was set to read it to my family.  There was something about that divine intervention that touched me very deeply.  When I got ready to read the same chapter to our family this year, the thought hit me to check his detailed medical journals to see what he was experiencing at the same time he was reading those passages of praise in Psalms.  He was right in the middle of his radiation treatments from his first bout with cancer.  He had already had the surgery to remove two-thirds of his right lung, and had already finished the grueling chemo treatments.  Now as he took radiation, he was circling verses like Psa 116:6, 116:15, 121:7, 126:3, 127:3-5, 131:2a. 138:8, and 139:16.  What a window into his soul to see the verses that God was using to comfort him, giving him hope and trust in the greatest challenge of his life.  And so characteristic of Dad, he was not talking with everyone about this.  It was a very intimate journey with his Lord that bolstered his soul as his body suffered.  I found myself thanking God for the man he was, and wishing I could talk with him about that journey.  I probably missed him more then than at any time since he had died.  What a treasure, though, to have that record of his triumphant faith in the midst of adversity.

 

Isn’t that amazing?  I’m so glad John shared that with us.  Dad’s “triumphant faith in the midst of adversity” never wavered as his body wavered and finally succumbed to this disease that we all hate.  Dad remained true to the Lord, to Mom, and to his family.

And now today we five children carry with us his heritage of faith, as do many of our children and grandchildren.  I’m so very thankful for that!  Of all the many things to be thankful for this past Thanksgiving Day, that would be one of the biggest.

We miss you, Dad, but we know we’ll see you and Mom again.  Thanks for showing us the importance of following Christ, and for living out your own faith so beautifully and consistently.

15327383_10154153794063097_2585726449637429315_n

 

Glittery Moments

Patty hesaidwhatks's avatarHe Said What?!

My day yesterday, Sunday, began at 4:12….to be precise, like Aaron.  Aaron had a seizure for the second early Sunday in a row.  Then he had another at 5:45, so I just stayed up then, knowing that I wouldn’t be able to go back to sleep.  This is a very busy, tiring time for everyone.  To start my day off so physically tired wasn’t what I had planned, but as usual my thoughts went to Aaron and how awful he was going to feel when he woke up.

I heard him upstairs through the baby monitor later in the morning, stirring and stretching and then getting out of bed.  I knew that he was marking his wake-up time in his notebook that he uses to record all that important information about his life.  Later he slowly made his way down the stairs.  I noticed that he had on a different…

View original post 1,014 more words

This is The Day……

Two years ago….and I needed to read this again today. “This is the day the Lord has made!”

Patty hesaidwhatks's avatarHe Said What?!

This morning I read about the death of one of my most remembered college professors……Martha Grace Green.  Tiny little Mrs. Green was a powerhouse as she taught speech to hundreds of students over the years.  We quickly learned not to underestimate her due to her size, for behind that small stature was a take-charge woman who taught us the proper way to give a speech……and to speak – (NEVER say each and every!!!)…….and also to live.  For at the beginning of each and every class…..so sorry, Mrs. Green!…….the entire class recited Psalm 118:24.  “This is the day which the Lord has made; we shall rejoice and be glad in it.” 

Many memories of Martha Grace were coursing through my mind this morning as I went about my routine, getting ready to drive Aaron to meet his day group.  I wasn’t at all surprised to…

View original post 1,094 more words

You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights.  Gary was already trying to go to sleep, and I wanted to do the same.  But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much. 

“AARON!!” I hissed.  “Why are you in our room?” 

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied.   “Now go to bed!”

Not long after, it happened again.  Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron.  Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm.  Another bad report this past Monday just took all the wind out of me.  Gary and I feel like nothing is working, but something has to make a difference.  We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying.  Praying a lot.

I was so thankful for the verse that God gave me this week.  The portion that meant so much to me was this phrase: 

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.”  (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us!  One of us gotta have some relief!!” 

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness.  But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room.  Soon he walked up to me and handed me one of his sticky notes.  Here is what he had written:

wp_20161120_08_54_36_pro

Bless his heart.  He really wants to do better, but finding that better is very difficult for him in certain circumstances.  Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday. 

That verse God gave me early in the week was perfect.  We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways.  The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth.  In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened.  I was out with my little elderly friend, Nora, when I got a text.  This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago.  Dona and I rarely text, so I was surprised and a little alarmed to see her name appear.  I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with.  We briefly texted, with her telling me that I had just been on her heart and mind.  God at work, without a doubt.

I could hardly wait to get home and call her.  We talked for quite awhile.  She told me again that she kept thinking about me and so she prayed.  I love it when God does these things!  He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s.  We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt. 

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!!  He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!”  he boomed.  “I want to give you a rose!!  Because I love you!!”

And with that, he gave me the biggest hug!  I thought my heart would explode!

The love note…..the rose……the hug. 

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night.  BAM!!  There he is again, full of talk and excitement, no matter how tired we are. 

“Are you sure you want me gone?” he asks.  No, Aaron, not gone…..but resting.  Go rest, and let us do the same.

His behaviors can be so very tiring.  This past week has been emotionally exhausting for us, as well as physically.  We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone.  We just want him to be happy, and to know how to behave in a way that makes others happy, too.  We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief.  I know He’s listening…..I know He cares……I know He’ll answer.  He’s already impressed others to pray for us.  That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life.  One so often shows me the other. 

I just have to be making an effort to look sometimes. 

15122973_10153831727371895_4763924987569500362_o

 

My View

I was in TJ Maxx with my elderly friend, Nora, last Wednesday when I got a call from Paradigm, Aaron’s day group.  I was tempted not to answer it, figuring it was Aaron just wanting to tell me about his day.  That could wait.  But I wasn’t sure, so I did answer and I immediately knew that the news was not good.  Aaron was on the other end, his voice thick and choked with anger and tears.  Here we go, yet again, I thought.  How I wish that Aaron could stay happy!

I picked him up as soon as I got Nora settled back at her apartment.  Aaron was asleep, so I had time to talk to the staff, all of us scratching our heads as to what caused his angry outburst that morning……and what the solution could be.  I found out from Aaron later what happened.  He tried to give his good friend two McDonald’s coupons and she didn’t want them.  She wasn’t being mean to Aaron, just honest, but Aaron felt rejected and very hurt, so he just had a total meltdown. 

Thursday was a better day for Aaron.  Then came Friday…..

I told Aaron that we would go out to eat when I picked him up at the end of his day.  His choice.  So he chose Denny’s, of course.  He does love Denny’s.  On the way to Paradigm, I talked to him about being nice…..being kind with both his words and his hands.  About talking to someone if he was angry or hurt.  He agreed with everything I said……until he walked into Paradigm.

I was waiting in the van after I dropped him off, waiting for him to come and tell me if they were going to a movie.  But instead, out the door came one of his staff.  She told me that Aaron had become verbal instantly with another client when he walked in the door.  Then out came Aaron, yelling at this staff as he stood on the sidewalk.  He eventually got in the van and off we drove.  My anger and disappointment and great frustration spilled out in harsh words as we drove toward home.  I was so mad at Aaron and mad at myself for being mad, and it just all boiled over. 

I pulled into Denny’s, deciding that it might do us both good to be in a neutral place.  Aaron sat on the curb before going in, saying that maybe he just shouldn’t go in to eat.  I told him to come on and he did, but for most of the meal I just sat silent.  I was exhausted and defeated and still battling my anger.  Aaron was scared……scared because of all the people from whom he fears rejection, he fears it the most from me.  He kept telling me that he loved me……kept trying to share his salad with me…..his crackers, French fries, chicken strips……even reached over, took my hand, and kissed the back of my hand.  Yes, he really did that.  I wonder who saw it, and what they thought of my lack of emotion? 

We ran into WalMart after our meal, where I picked up food for Thanksgiving bags for church, and Aaron tried to help.  I still felt numb, tired.  After I checked out, I looked toward the bench where Aaron was sitting, and this is what I saw.

wp_20161104_11_44_11_pro

Then my heart did stir with sorrow for Aaron as this picture of him was a picture of dejection, and his own tiredness.  Oh Aaron, how I wish your life wasn’t so difficult and hard!  And how I wish you could understand that you so often make it that way, and yet so often you can’t control the impulses you have that make you make it that way.  It’s so complicated!

Aaron went right to bed when we got home.  I went to the patio, baby monitor and my Bible in hand.  I could listen for seizures while I spent some time unwinding and processing……reading my Bible and praying.  I could hear Aaron’s steady breathing on the monitor as I breathed out my prayer to God, asking Him for wisdom to know how to deal with these constant ups and downs from Aaron. 

I called my friend, Wendy, who walks this road that I walk.  She understands and doesn’t judge.  She offers counsel and advice, empathy and understanding.  And I know that she prays for us, for Aaron……prays with love and care.

Aaron was awake then, coming outside to test the waters……to see if Mom was still distant and angry.  He relaxed some when he could tell that I was better.  He smiled when I said that we could take Jackson for a walk around the yard.

wp_20160824_16_32_51_pro_li

We walked down to the back of our yard, around the huge evergreens that hide the very back loop of our property.  It’s an area that is hidden from view as you stand on our patio or look out our windows.  You would never know it’s there until you walk behind the thick trees that keep it hidden.

wp_20161104_13_45_55_pro

I stood looking at the eerie sight.  Branches of the old trees there hang low, gnarled together as they bend toward the ground.  A finger of the neighborhood lake curls around under the limbs, still holding water since we’ve had such a wet summer.  It’s a shadowy and dark place, a little creepy even.  It’s interesting, but not warm and welcoming……not a place I want to linger for long. 

wp_20161104_13_46_11_pro

As we stood there, Aaron talking and Jackson sniffing the bushes and tall grass, it hit me that this is so much like our life with Aaron.  Anyone who lives with a person who has autism…..or multiple seizures…..and takes tons of meds to help them…..knows what I mean. 

Aaron is funny and smart and often kind.  But he is also prone to angry outbursts where he is hurtful and unreasonable.  For days we may mostly see the pleasant side of Aaron, but we know that hidden inside him is still the anger and the frustration that he feels, and sometimes releases.  It is not a fun place, and it is not a place where we desire to linger.  Yet sometimes Aaron makes us linger there as his brain is going through whatever his brain goes through at those times. 

I know that mentally and emotionally I must walk away from the shadows that threaten to engulf me when I am overwhelmed by Aaron’s behaviors.  He needs me, for one thing.  And I need to stay whole and strong, loving and forgiving.  It’s not easy, but I must.  Friends and family help.  A good staff at Paradigm helps.  Gary is my biggest help, taking over when I can’t.  And definitely, crying out to God helps the most. 

Aaron and I turned from that scene, finally, and went back out into the open yard…..to the sunshine and grass……to the full view of our welcoming house.  Likewise, given a little time, he and I returned to our normal relationship.  I love him dearly.  I know he needs me.  He needed me when he had three hard seizures during the night on Friday.  But he also needed me even more when he was out of control emotionally that day.  He needed me to believe in him…..to discipline him……to try to help him even when he pushes me away……to care for him and to love him.

Behaviors are perhaps the hardest part of Aaron’s disability.  They are frustrating, embarrassing, and exhausting at times.  Families who deal with this need extra love and prayer.  Staff who deal with this need the same, as well as frequent thank-you’s for what they endure. 

Aaron’s behaviors hold him back in many ways…..and could easily hold us hostage in many ways, as well.  But Gary and I know that we can’t let the dark times be our focus.  Like the staff at Paradigm says, today is a new day and we start all over.

We don’t always get to choose our view on any given day, but we don’t have to stay forever where the view is scary and dark.

“Today is the day that the Lord has made!  Let us rejoice and be glad in it!”  (Psalm 118:24)

wp_20160605_11_45_55_pro_li-2