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.

Lessons From the Threatening Storm

Let’s keep our eyes on the One Who sent the storm and trust Him for the outcome.

Patty hesaidwhatks's avatarHe Said What?!

Gary and I are preparing for a huge backyard project that requires us to remove our fence. Gary doesn’t have much time for this kind of outdoor work, so the extended daylight in the evening has been a help. All day yesterday the weather was perfect, though a little windy. Yet I was reading on the weather information on-line, or hearing on the local news, that we might get some storms in the evening. You’d never know it to look outside, I thought. Such a sunny day it was!

Gary came home from work and we sat down for supper, as we always do. This time together is very special – time to enjoy dinner, talk about our day, and just relax with each other. But looking outside, we noticed some gathering dark clouds on the horizon. A few minutes later we heard a low, distant rumble of thunder. Knowing…

View original post 802 more words

Monopoly On a Scrabble Board

I have a dear friend, Joyce, who has two sons with special needs. They each have significant special needs. Joyce is someone that I admire very much. I know she couldn’t handle all that she does apart from God’s grace. One day over lunch, she said the most profound thing to me. We were discussing some of the unusual ways that our boys function in their daily lives, and how we must function as their moms.

Joyce said, “It’s like playing Monopoly on a Scrabble board.”

That’s just one of the best descriptions I have ever heard about living with a child with autism, or many other developmental issues.

How on earth DO you play Monopoly on a Scrabble board?!! At first glance, I might say that you DON’T!! But as parents of our special children, we must. We have to be creative……flexible……think outside the box……and be very patient when all the pieces just don’t fit.

IMAG01746

The bottom line is this……we just don’t have a choice. So we take the Scrabble board and figure out our version of Monopoly, often writing the rules as we make the plays……and changing the ones that don’t work.

Aaron has been doing so well lately that I’ve felt like I’m mostly playing Monopoly on a Monopoly board. Imagine that!!

Oh, we always have our Aaron moments because that’s just how it is. But he’s been unusually happy and kind lately, both at home and at his day group. He’s even wanted to help more around the house, including in the kitchen.

IMAG01701

There are mornings that he hasn’t wanted to go to his day group, just like we don’t always want to get up and face our day. One morning he was getting upset about having to go to Paradigm, saying that he just doesn’t have a good time there.

“But Aaron,” I countered, “every time I pick you up, you say you had a good time.”

Not missing a beat, Aaron replied, “Well, the next time you pick me up, I’m gonna say I DIDN’T have a good time!!”

So there!!

He didn’t see my smile as he huffed out of the room. He ended up going that morning and having a good day, by the way.

This past Friday, however, was just the reverse. He left the house happily. We enjoyed listening to our oldies on the way to Paradigm. He was looking forward to some shopping and pizza at the end of the day, after I picked him up.

I pulled up to Paradigm and saw him sitting outside with his friends. His face was red and he was minus his glasses. I just knew…..and I was right. It had been a meltdown day for Aaron, and who knows why? He had broken his glasses….again…..but thankfully this time I was able to pop the lens back in. His staff was talking to me as Aaron sat in the van beside me, red faced from crying. So instead of shopping we just went to get his pizza and then head straight home, where we continued to sort out what had happened. His behaviors were wrong on several levels, and dealing with it would take a long time, I knew.

Hand me the Scrabble board.

And that rule book that I’m working on, continually.

Yesterday we took a walk in Swanson Park, stopping at the recycling bins on our way. The bins were full, so we couldn’t drop our things off then. We enjoyed the park, the fresh air and sunshine, and the deer that we saw. Aaron had a good time, despite complaining of a sore throat.

IMAG01737

Last night at bedtime I told Aaron that we might get some rain, and maybe some thunder and lightning. Aaron loves rain and he loves storms. He followed me up the hall after I delivered the hopeful storm news to him.

“What time?” he asked.

I told him that I didn’t know what time the rain or storms would come, but that if it happened, it would be later. As in not this very minute.

“Like when?” he asked.

I repeated that I didn’t know just when.

“Will it be later?” he continued asking.

Deep sigh……which he totally didn’t notice.

“Yes,” I affirmed. “The rain and possible storms could be later.”

I hoped to finally be finished.

Aaron followed me still.

“So we might not hear it?” he wondered.

The Scrabble board! Where’s the Scrabble board?!

Today Aaron is home with his cold. He is home with me, snorting because he doesn’t blow his nose.

I am re-reading the Monopoly on the Scrabble board rules about patience.

I was in the bathroom. Aaron stood on the other side of the door, happy because he had asked if we could try the recycling bins again. I had said yes, and had also told him that we would run an errand as well while we were out. Aaron sees all sorts of possibilities in the word “errand.” Most of which are in the form of food.

So there he was outside my bathroom door.

“Mom?” he began. “Are we going to recycle?”

“Yes,” I answered. “I said we’ll run an errand and do the recycling later.”

“What do you mean later?” he asked.

I wilted a little.

“Just later,” I replied.

A moment of silence.

“So what time?” he asked.

A Scrabble board in every room is what I need, with all the Monopoly pieces. Certainly in every area of life with Aaron.

 

 

This Is My Friend

Years ago a visiting couple walked into a local church here in Wichita, sliding into a pew near the back. Having a long history of working with special needs, the husband was amused to see a young man sitting in front of them with his grandmother……a young man with special needs.

“They follow us everywhere,” Scott whispered to his wife, Atha. They chuckled, and after the service Atha struck up a conversation with this grandmother. Of course she did. That was classic Atha, friendly and warm. And this grandmother couldn’t wait to find me.

“Patty!” she said. “I met a couple who were visiting here for the first time. They have a background of ministry with special needs. I’ve got to introduce you!!”

So at the first opportunity, she did just that. Atha and I talked and talked the first Sunday that we met, making plans to get together soon for a coke and more conversation. We met at Spangles one afternoon soon after, and as they say……the rest is history. We clicked. We understood one another. We were on our way to a great friendship.

Over the next couple years, Atha achieved her life’s dream of being awarded her PhD. I was so proud of her, though I had gotten in on the action late in her life and late in her dream. It was only as the years went by that I learned more and more of the sacrifice and grit that went into Atha achieving this goal. She had put this part of her life on hold as she mothered their three children, but all along she was very active in the world of teaching special needs and writing Sunday School curriculum for special needs for the Southern Baptist Sunday School Board. She taught students; she taught teachers; and she taught me.

1492414_10152006456478025_617893585_o

Atha taught me lots about special needs as we worked together trying to establish that ministry in our church. She taught me lots about how to teach students with special needs. She taught me lots about my own son, Aaron, although she was always quick to point out that I was the expert when it came to Aaron.

But what Atha taught me the most was what it was like to have a friend who loved unconditionally…….who stuck with me through good and bad…….who was there for me no matter how busy and complicated her own life was.

Scan

Her phone calls were regular and so welcomed, no matter what all she had on her to-do list. Our lunch dates were refreshing to me on so many levels. And every June we made sure that on our schedules we placed a very important lunch date……one at which we celebrated our birthdays. Atha’s birthday was June 15 and mine was June 18, so we would try to celebrate close to both of those dates. I would pay for Atha’s lunch, and Atha would pay for my lunch, and we would laugh and laugh.

 

Atha took my family as her own. Not only did she take Gary and our children into her heart, as did Scott, but she also grew to love our extended families. It didn’t matter that they were clear across the country in the mountains of West Virginia and North Carolina. She grew to know and love each one as if she had been a part of their lives forever.

Atha loved human beings and the stories that each person carried. She loved telling stories….she loved hearing my stories…..and she loved all the stories of the hundreds of people that she took the time to know and care for over the years.

A favorite quote from Atha tells so much about her: “Successful leadership begins with how you treat others. I challenge you to find time to be kind today.”

Atha definitely followed her own advice. No matter how busy she was as she worked to start her ADHD coaching business; taught college courses in multiple places; conducted seminars for teachers; and so many other activities……she still had time for those phone calls and visits. Time to keep in touch with me, to love me, and to be there for me no matter what. To teach me one of her most unforgettable lessons – to be established in my purpose.  https://hesaidwhatks.wordpress.com/2016/03/09/my-purpose-2/

Atha and I started going to different churches three years ago. We truly missed each other on Sundays. But I would often get a text from Atha on Sunday. “Are you worshipping?” she would ask. Or after church, she would ask what songs we sang. She and I would compare songs, and talk about what they had meant to us. Sometimes she would even text during her worship service to say, “We are singing Great is Thy Faithfulness!” That was our favorite song, one which encouraged each of us so much. We would talk about the sermons we had heard, and Atha would ask what I had learned. Ever the teacher. Ever concerned.

Atha began having some significant health issues last fall. On Dec. 26, I got a text from her son, Kyle, telling me that they were taking Atha to the ER. The day was very grey, cold, and icy…..just like my heart felt as I worried about her all that day. It was discovered that in addition to some other issues that had plagued Atha’s body, she had also recently suffered a stroke. I was shocked when I first saw her in the hospital. How sick and tired and old she looked!

On one of my visits to the hospital to see her, two CNAs came in the room to clean her. I sat behind the curtain as they worked. Soon, in typical Atha fashion, she looked at the young man and said, “Young man, what do you want to do with the rest of your life?” He stammered around for an answer, not expecting such a question from this little sick woman. I just smiled. He didn’t know my Atha. She then proceeded to instruct him on setting goals and achieving them. I bet he never forgets her.

Weeks went by, with Atha sometimes rebounding and giving hope that she would recover, only to be followed by a downward turn. She would fluctuate between rehab centers and the hospital. On some of my visits with her, she would talk in her special way….slowly and with difficulty, but still like her old self.

IMAG01509 - Copy

“What do you know today, Patty?” she would ask. She didn’t want to talk about herself, but I felt guilty talking about me and my family and my issues, so small compared to hers. But that was Atha, always concerned for me above all of her own cares.

One day in the rehab center, she was very vacant. I was worried. I couldn’t get her to engage in conversation and she seemed far away. A therapist came over to her and asked Atha to tell her who I was. Atha looked up, brightened, and said, “This is my friend, Patty Moore.” Just like she always used to do.

On Monday, March 21, I sat by Atha’s bed at the hospital. She wasn’t doing well at all, but we still hoped for a full recovery. She kept her eyes closed, but she often did that. She didn’t talk. I opened my little Bible and held it up close as I read her some Psalms. Every little bit Atha would quietly say, “Amen.” That was all. Then she asked me to pray for Jesus to heal her, so I did. And before I left, I told her I loved her, my friend. And she said she loved me, too.

On Thursday, Sarah got the call about end of life issues and hospice. No one could believe it was happening. I spent part of that evening with them at the hospital. Before I left, I leaned down to my mostly unresponsive Atha. I said some things to her, and then I told her that she would always be my dear friend. Very softly, she spoke to me. One word.

“Friend,” she said.

Atha was moved to hospice late that night. I saw her on Friday and on Saturday, where a little twitch of her mouth was the only response she gave me. On Easter morning, a gloriously beautiful morning with a soft snow and bright sunlight, Atha went to heaven. How significant that her home going was on Easter! Atha always knew how to do things right.

This morning, a couple walked into a local church here in Wichita and slipped into a pew near the back. They were dreading this day. He put his arm around her as she fought the tears that were forming. Gary and I were here for Atha and for Scott, like they had always been present for us. But I just never dreamed it would be in this way. Never in a million years.

Many people were in that church this morning to honor Atha. As part of the service, people were given time to tell their stories of Atha…..of how they knew her…..of what she meant to them…..of how she had impacted their lives. She would have loved the stories, even though they were about her. She did love hearing and telling stories, after all. It was wonderful to hear just a small sample of how she had blessed and helped so many.

I’ll always treasure the many Atha stories I have tucked away in my memory and in my heart. Too many to tell here, that’s for sure. But suffice it to say that the best thing that Atha could ever have said to me is the last thing she ever said to me.

Friend.

And with that, I am beyond blessed.

This is my friend, Atha McNay.

1914503_10153279256156895_827625779676576061_n

 

The Detour

Aaron and I were in Dillon’s last week, where I told him to pick out some items for his Friday snack bag. I usually have his goodie bag all ready for him when he comes home on Friday but this week had been full of unexpected things that had made it impossible for me to have his bag done beforehand. He never minds picking out the items himself even though he also loves it when his bag is full of surprises. His treat bag is a reward for a week well done by Aaron…..or at least done, sometimes not all too well.

Better behaviors = bigger bag. Or so that’s how it was meant to go. Like his former teacher, Mr. Z, used to say – “Sometimes you have to make it worth his while.”

Aaron, ever the clever one, sometimes calls it bargaining. Nothing much slips by his awareness.

Anyway, it’s fun to give him something to look forward to and to work for at the end of his week. On this particular Friday, he had already walked fast and eagerly toward the bakery aisle where he knew there would be a container of croissants waiting for him. I gave my permission as he held the treasure up for me to see, but I said no to his hopeful request for TWO packages as he held up the second one for me to approve. Aaron just laughed, not at all surprised to be vetoed on that one, and then he lunged past the meat section toward the candy aisle……but not before stopping to loudly point out the lobster and shrimp like he always does. I could really just have a recording of my comments as we walk through the store on most days. He’s so predictable in many ways. In other ways, not so much.

Aaron turned left down the candy aisle, seeming oblivious to the sample lady standing nearby. This pleasant young lady had my attention, though, so I stopped at her little table to acknowledge her offer. I was distracted for a short time with little Twizzler samples and water flavor enhancers, chatting away as I am prone to do. We finished our brief conversation, said “Have a good day!” with our smiles…..and I noticed that her eyes darted down the candy aisle that was just behind us and her smile grew even larger.

I turned around and instantly knew why as she said, “Looks like he’s found some candy!” There was Aaron, getting down and personal with the Starburst Jelly Beans.

IMAG01668

And there was a man coming right toward him, pushing his cart and just looking at Aaron. I’m used to Aaron sitting down in store aisles when I’m not there to tell him no, but I imagine this man wasn’t at all sure of what was happening here. I was telling Aaron to stand up, but Aaron doesn’t stand up quickly from a sitting position…..and it’s quite a sight to see when he does……so now this man just swerved around Aaron and gave me a kind smile as he passed us.

I smiled back, thankful that he didn’t scowl or stare awkwardly.

At times like this I just need to have a sign that I can hold high. A sign that in bold letters says – DETOUR!!!

Aaron is truly completely clueless that he has done something a little strange or that he is disruptive. We face these moments constantly in his life. It’s just who Aaron is, and it’s who we must be as well.

We often must take a different route to our destination with Aaron, and hope that we arrive there…..and in one piece. What worked for our other two children didn’t work with Aaron and often still doesn’t. When our children were younger there were many moments of frustration from them as they tried to understand their unusual brother. They both went through times of questioning, as did Gary and I, about why Aaron acted the way he did. Even after the diagnosis of autism, we still struggled to understand what made Aaron tick.

There were times that Andrea and Andrew thought that Gary and I didn’t discipline enough. That we gave in too much. That we let Aaron have his way too often. Now that they are adults, things have settled down a lot and they really do understand their brother. They love him to pieces. It just takes time, education, and a little maturity to come to grips with a brother who can be disruptive and annoying……and super embarrassing in public!

We could be rolling right along in life and before we knew it…..DETOUR!!

A detour because of Aaron’s behaviors or actions…..a time we were forced to recalibrate…..to try to understand and to work through a situation. Or to be uber patient or thick skinned, despite the red on our faces or the words we wanted to say but couldn’t…..to Aaron or to insensitive others.

After all these years, when I turn and see Aaron sitting on the floor like he did at Dillon’s, it makes me laugh. He does look pretty cute and funny sitting there. I think people now are more aware, too, of these special needs. Their smiles and looks of understanding are more encouraging to us parents than they probably realize.

To you parents of special children, just keep the lines of communication open as much as possible with your other kids. Let them vent without judgment. Understand that age, hormones, peer pressure, and so many other things weigh into their reactions to their special sibling. Things WILL settle down with time. And in the meantime, try to spend some one-on-one time with your children, a time where they know they can safely talk to you and that you will have empathy.

And remember that we often have to take a detour, going around issues in a different way than we normally would, because that’s just how life is in their world……and we can’t change that.

Later Aaron shared some of his jelly beans with me. That’s the way it is. Understanding and love lead to sharing and sweetness.

Sticky and germy sometimes, but still it’s sharing, done Aaron’s way.

The DETOUR way.

Pictures of Kindness

Aaron has a kind side to him that we love to see. He’s always liked to share things that he has, including money, which we discourage. Lately I’ve been sending him to his day group with baggies of baby carrot sticks, pepper strips, gum, or something else along that line. He then will sit with his friends and share his food, hopefully satisfying his sharing urge without also giving away his money.

Aaron was so sweet over the weekend here at home. He knew that my friend, Atha, was not expected to live long. He was concerned about that, more than we usually see over those things. He asked about it several times. Then after I returned from the hospital and we watched Wheel of Fortune on Saturday, he held his hand out to me on the couch and said, “Here!” I held out my hand, not showing him my reluctance, and he dropped two very sticky jelly beans onto my palm. Therein lay my reluctance……sticky, germy, well-handled jelly beans. But I didn’t think too long…..didn’t give myself time to chicken out. I just thrust that candy in my mouth and thanked him broadly. Gulp!!

Later he sincerely wanted to give me even more jelly beans, so he got out a bowl…..of course!…..and poured a few of his prized jelly beans in the huge bowl, handing it to me proudly. Such kindness once again! And at least this time the candy wasn’t man handled first, but came straight out of the bag. Relief!

IMAG01670

 

As I watched basketball soon after the jelly bean gift, Aaron came downstairs with his favorite soft blanket. He proceeded to offer it to me, and once again I didn’t refuse. I just sat still while he placed the blanket over my legs, pulling it just so and making sure that my feet were covered. Sweetness!

IMAG01669

Last night, again while I watched basketball, he gave Gary and I each a piece of his favorite Big Red gum.  He knew that Atha had gone to heaven that morning.  He had seen me earlier, with tears on my face, and instead of calling me a cry baby like he usually does in his discomfort with emotion, he instead gave me a piece of gum. Empathy…….rarely seen!

IMAG01691

This morning Aaron wasn’t too happy about going to his day group. Sometimes Mondays are that way for him, just like they are for many when it comes to ending a fun weekend. I was afraid of a real meltdown this morning when I heard Aaron’s back scratcher go sailing up the hall floor. Aaron had thrown it. Oh dear, I thought.

A little talk and a little time helped. I cleaned his glasses like usual as I listened to him complain one more time, but not as energetically as before. And once I told him that we could take Jackson with us, all doubt was gone. Happy Aaron was ready to go!

Once at Paradigm, Aaron ran inside while I got Jackson ready to be swamped by Aaron’s friends. His collar and leash in place, Jackson hopped out of the van and enjoyed all the petting and exclamations that usually happen when he’s being adored. But Aaron wasn’t totally happy until he made sure that his very special friend was able to be wheeled out in her chair. “S” was all smiles and even talked to me about big old Jackson as I made sure that Jackson was right where she could see and touch him.

Soon we were back in the van, Jackson and I, and Aaron’s group began walking the few blocks to the nearest Quik Trip. I looked as I drove away and what I saw warmed my heart, so I snuck into a parking lot and waited for the group to pass by. This first picture shows the main group.

IMAG01685

Look who came at the end. Sorry for the poor quality of these pictures.

IMAG01686 1

There was Aaron, walking with “S” and one of his favorite staff, Antoine. Aaron just loves “S” and another girl at his day group, both in wheel chairs. This act of kindness, Aaron walking slower so that he could stay with “S”, just made me very thankful and happy for the kind heart that Aaron really does have.

IMAG01688 1

Kindness. I just can’t say enough about the importance of that quality in any of us, but especially in big old blustery Aaron, who at times seldom shows concern for anyone other than himself. Emotion and thinking of others is a characteristic that hasn’t usually come easily to Aaron over the years. Expressing those traits is hard for one with autism.

God was good to give me these evidences of Aaron’s heart this past weekend. He was good to allow me to see Aaron, unaware of my presence, showing such kindness to his special friend.

We never know what a day with Aaron will hold. Kindness TO Aaron certainly helps make situations smoother.

Kindness FROM Aaron…..priceless!!

Heading Into the Fog

I set out on Monday morning for the last day of the Bible study that I have been taking this winter. It was a very foggy morning. As I turned down 151st street, near my home, this is what I saw ahead.

IMAG01641 1

Later, as I sat with several other precious women around a table in a beautiful conference room, we shared with each other what we feel that God is laying on our hearts as our divine burden. It was a sweet time as we bared our hearts to each other, many times with tears, of what God has impressed upon us to be or to do. A common element among us was the fact that we have a burden…..perhaps a calling…..but we don’t know where it will lead.

“I don’t know what God will do with this.”

“I don’t know how God will use this.”

“I don’t know where to begin.”

Make no mistake about it, when God calls a person to a task, He will lead the way. But He doesn’t often, if at all, open every door all at once. Our job is to obey, step by step and day by day. Just obey.

To obey when the way ahead is murky and uncertain.

Like Abraham…..called from Ur of the Chaldeas, of all places. Called because he was faithful to God. Not called because He was so amazing or gifted, but called because he was a man of faithful obedience to God. “You found his heart faithful before you,” Nehemiah said of Abraham.

So there we have our first directive. Be faithful in obedience to God.

That’s a big step in the right direction.

Finding God’s will for your life isn’t some huge, mysterious undertaking. It’s not getting up every day hoping that you do something that will somehow reveal God’s will for you.

“Finding” God’s will is simply doing God’s will for you, which means faithful obedience to the directives given to us in His Word, day by day.

So that’s what Abraham did, too. He set out to follow God from Ur to…..he had no idea where. He just knew that God said, “Come.” And so he did. He went with God, not knowing where.

Humanly speaking, that’s pretty scary stuff. We want to know where we’re going…..how we’re getting there….how long it will take…..will I be taken care of……what happens after I get there.

We set out on the path of obedience and we watch God open doors….shut doors….redirect…..

And sometimes it’s painful. Sometimes it’s pure joy and peace. Sometimes it’s fearful and full of questions. But in the end we can be just like Abraham, who by the way wasn’t perfect and had tons of failures along this journey that God led him. Nehemiah also said, speaking of God calling Abraham, “And You have fulfilled Your promise, for You are righteous.”

God didn’t fulfill His promise to Abraham because of anything worthy that Abraham had done. God fulfilled His promise because HE is faithful to do what He has promised.

Often, God’s calling in our lives is to endure very hard trials. It’s not to be something or do something that will command great respect and attention. Instead, God may want me to endure suffering that will point me and hopefully others to Christ.

Whatever God wants me to do doesn’t depend on me at all, except for my obedience. I don’t need to feel worthy enough or important enough or smart enough or capable enough. God will be all those things for me.

As I head into the fog of the unknown, in obedience, I will begin to see some things clearly. One step at a time the way will be made known. And one day my view will be the same as my view on that road near my home later that afternoon.

IMAG01648 (3)

“But the path of the righteous is like the light of dawn, that shines brighter and brighter until the full day.” (Proverbs 4:18)

 

My Faith Looks Up to Thee

 

While life’s dark maze I tread,

And griefs around me spread,

Be Thou my guide.

Bid darkness turn to day,

Wipe sorrow’s tears away,

Nor let me ever stray,

From Thee aside.

 

 

 

The Waiting Game

It all started a few weeks ago with a commercial that Aaron and I saw on television during Wheel of Fortune. There was Ronnie Milsap, playing a piano as he sang one of his signature songs. For some reason, Aaron was captivated. Maybe I made a comment about Milsap. I don’t really remember, but from that point Aaron was on a mission. His mission, that he gladly accepted, was to find a Ronnie Milsap CD. Of course, Ronnie Milsap CDs are virtually impossible to find on store shelves. We did find the Ronnie Milsap insert at Wal-Mart that showed where some CDs used to be, but none were to be found. This discovery just further fueled Aaron’s desire to find some Milsap music, but several stores and phone calls later found us empty handed.

Aaron knows that when one is empty handed, there is always…..AMAZON.COM!!!! His answer to every fruitless search on the planet is found….in his opinion…..at this amazing Amazon place. And Aaron, knowing that Mom was weakening in her search, knew something else. He knew that one should strike the iron while it’s hot, and that if Mom was on the amazing Amazon for one item, she might…..just might…..order two items while she’s at it. Or even THREE!!!

So Aaron used his very favorite internet tool…..GOOGLE. And on Google he found an epic disaster movie that he decided he could not live without.

10.0 EARTHQUAKE!!!!! Predictable story line…..cheesy acting…..unknown actors……painfully unbelievable….

In other words, the perfect movie in Aaron’s professional opinion. And trust me, he knows ALL about terrible B disaster movies.

So this past Tuesday, Aaron hovered behind my chair as I ordered The Essential Ronnie Milsap CD……10.0 Earthquake……and The Essential Charlie Daniel’s Band just for fun.

Aaron’s hounding and hovering surely paid off, he was thinking.

And then it began. The countdown, all too familiar to me. And a big reason that I really wanted to find Ronnie Milsap in a store, where I could buy the CD outright without the wait.

I had barely gotten out of my chair after placing the Amazon order when it began.

“Mom, when will it come?” Aaron asked.

“It’ll be a few days, Aaron,” I answered.

“So when will it get here?” he continued.

Oh dear. I was thinking that paying the whopping postage charges for overnight shipping might have been worth it. I didn’t want to tell Aaron that Amazon had said 4 – 6 days. Why not? Because then Aaron would want to know which it would be. Four days? Or six days? If four days, then that would mean Saturday. If 6 days, then that would mean Monday. We would be in constant uncertainty as he tried to nail down the four or six day business. Nope. So I made a decision at his next inquiry, which was soon in coming when I didn’t answer the previous one.

“Mom, how long will it take?” he queried.

I told him it might take a week. That’s a nice solid guess.

“A week?” he confirmed.

He thought for a few seconds.

“So……next Tuesday?” he asked.

“Maybe,” was all I would venture.

“So if it doesn’t come on Tuesday, then you lied?” he continued.

There is no winning in this waiting game with literal Aaron.

There were more questions that day, and the next.

Will it come in a box?

Will it come to the front porch?

Will it come to the mailbox?

We were 24 hours into the amazing waiting game from our amazing Amazon order, and I was already exhausted from Aaron’s desire for definitive answers.

On Thursday morning, Aaron was up before 6:00. I was NOT ready for that! And I was really NOT ready for this, the first words out of Aaron’s mouth as he stood in the kitchen.

“Mom, you said it might come in a week?” he asked.

“Yes, Aaron, it might come in a week, but we’re not sure,” I answered.

“Why might it come in a week or not in a week?” he wanted to know.

Here, Aaron. Drink your coffee and get back with me later.

On Friday, it went like this: “Mom, I think my video will come on the 15th.”

“What day is that?” I asked him.

“It’s another Tuesday,” he told me.

Tuesday to Tuesday is a week, and Aaron was hanging on to that hope.

Saturday: “Mom, what time does the mail come?”

AHHHHHH!!! With another nebulous answer, Aaron just walked away in disgust.

He stood at the window later in the afternoon, eyes hopeful as he watched Gary remove the envelopes from our mailbox. Was that a package that Gary removed?

Yes! YES!!!! Dad had a package. Could it be?

I was thinking it BETTER be!!!

And yes, finally Aaron held his long awaited amazing Amazon package! He was all smiles…..but no more so than me! Inside was Charlie Daniels, Ronnie Milsap, AND 10.0 Earthquake!!!!

IMAG01636

Aaron asked if we could listen to Ronnie Milsap later while I fixed supper. I agreed. He stood in the kitchen for a song or two, but before I knew it he had gotten a dining room chair and perched himself in it as he listened.

IMAG01639

He was pretty cute sitting there happy as a lark, listening to every word of every song. He kept the CD holder close by, and at the end of each song he would look to see what the next song was.

“Mom, Smokey Mountain Rain is the next song!” he would announce, rubbing his hands together in delight.

Ronnie Milsap continued to croon during supper, with Aaron trying to hear every word and every note.

Of course, I watched the stellar Earthquake 10.0 movie with Aaron later. It was as awful as I knew it would be. Aaron yelled and clapped and had a great time. I endured.

“Mom!” he said at one point. “Your face doesn’t look like you like this movie!”

Sometimes his powers of observation are very acute. So I worked hard to rearrange my face and act interested. Aaron kept turning his head in my direction, matching the look on my face with my level of interest. 87 minutes. I was a far better actor than any of those unknowns on the screen, let me tell you. 87 minutes of fake interest should earn me an Oscar!

Well. Things should be a little more settled down here. The amazing Amazon package arrived….and in LESS than a week! We have fun new music to listen to, and I already checked off watching another lame movie so I don’t have to hear Aaron ask me every day about when I’m going to watch it with him.

Tomorrow Aaron has a doctor appointment in the afternoon. I will go to my Bible study in the morning, then come home to pick him up for our usual “Doctor Day Lunch Out.” I can hear it now.

“Mom, when will you go to Bible Study?”

“Mom, when will you be home?”

“Mom, where do you want to go eat?”

“Mom, what time is my doctor appointment?”

“Mom, what time did you say you’ll be home?”

“Mom, what time are we going to lunch?”

Another day…..another chance to enter Aaron’s world and to hope he can tolerate mine as well.

 

My Purpose

I don’t remember how long ago it was, but I do remember that I was having a very normal day. Nothing exciting. Nothing terribly interesting. Certainly nothing spectacular. One of those days that if asked, I would have a hard time really saying what I had done during that day. Not that I hadn’t accomplished anything, but what’s to talk about when it comes to errands, cleaning, laundry, and ironing?

In fact, that’s what I was doing when my phone rang. Ironing. Ironing Gary’s work clothes for the next day. My dear friend, Atha, was on the other end of the phone. I have to admit that when she asked what I was up to, I was a little hesitant to tell her. You see, Atha is Dr. Athalene McNay. She was working on starting her own business. She was a college and university professor. She never, ever made me feel inferior. She is one of my dearest encouragers and friends. It was my own self that made me hesitate before I just told her the truth. I told her I was ironing, feeling in my heart that somehow what I was doing sounded so mundane and boring and unprofessional compared to her life.

And dear Atha, who always lifted me up, said, “Patty, you are established in your purpose.”

I remember standing in that bedroom, overwhelmed by her simple statement. Suddenly I felt that ironing was pretty important after all. I told her how much I loved her words as I processed their significance in those few moments. I’ve never forgotten it. I think of it often. I relish what those words mean.

Established in my purpose.

I was surprised last week to walk out our back door and see our Forsythia bush in full bloom. It’s so early for it to be blooming, but we’ve had unusually mild weather for weeks now.   This past Saturday I pruned just the very top spindly limbs that were way too tall, but I left the beautiful blooms alone. This is the prettiest it’s bloomed in many years. We see it instantly when we walk out back. We can see it from the road behind our house. And when we drive up to our house, it and the other smaller one just jump out at us with their bright color from far away. Impressive. Satisfying to see. An instant draw.

IMAG01630

I’ve also thought of another bloom that caught my eye last year. I came out our front door one day and my eye was drawn down to a beautiful rose colored bloom. There it was, one lone Gerbera Daisy blooming while all the other plants were just green with no blooms in sight. It was just one little flower, it’s open side toward the house, all alone and hardly noticed. No one could see it from the road in front of the house, much less from far away. Some of its petals had fallen off, so it wasn’t even perfect. But I was drawn to that pretty little flower’s bright color every time I came outside. It cheered me and made me happy to see it. Its smallness didn’t diminish its beauty or its effect on me.

IMAG00665

The little daisy was as established in its purpose as is my big Forsythia bush. Both doing what they are intended to do…..bloom where they are, as they are, and to accomplish their purpose.

Established in their purpose.

Can I say the same? Can you? Do you know the purpose that God has for you?

I knew before I ever married that I desired to be at home with any children that God blessed me to have. I loved being able to do that! I loved home schooling them. I’ve always loved being able to keep our house running smoothly. And little did I know that God would give us Aaron, whom I still care for here at home. Atha knew that about me….knew my God-given desires and knew that I needed to know on that day the truth that she said. The truth that was a shot of encouragement in my veins.

I was established in my purpose.

I have to admit that my purpose doesn’t often seem very grand. I’m more like the small daisy, when many times I wish I could be a big bright Forsythia. We don’t like to admit it, but we all place a certain value on being big and bright and beautiful in the eyes of others. Being important and noticed. Making a splash.

Somehow ironing clothes doesn’t quite fit the bill.

But it fits the bill in God’s eyes, if that is part of the purpose that He has given me. All of us has a purpose. So let’s be established in it.

Like Paul said to Archippus: “See that you fulfill the ministry that you have received in the Lord.” (Colossians 4:18)

My established purpose is my ministry, whatever and wherever it is.

My wonderful friend Atha suffered a stroke in December. She is still in a rehab center as she recovers. It’s been a very difficult road. I plan to hold her hand soon and to tell her how her words have been impacting me once again. And to remind her that in the place she is now, as hard as it is, she has a purpose there.

IMAG01538

Be established in your purpose, Atha. God has a reason and a plan in all of this for you.

And I will remember, too, on so many levels, her words to me.

“Patty, you are established in your purpose.”

May all of us be just that!

Simple is Good

I can hear our Kansas wind outside blowing like crazy. We’ve had several days in a row of very strong winds, typical for flat Kansas. I can also walk by a mirror and see that I’ve been out in the wind as I look at my fly-away hair!! The winds remind me of living with Aaron in many ways. He’s like shifting winds most days. We never know what we’ll wake up to find with Aaron as far as his mood or his physical state or his general attitude.

Lately, though, he’s been mostly very happy. I wrote about that a couple blogs ago. It’s been fun for us to experience, and definitely a relief for the staff at his day group, I’m sure.

But I should have known that on the very next day after posting my happy blog, Aaron woke up in a mostly grouchy mood. Why does that happen? Anyway, he kept coming into the bathroom where I was putting on my makeup, fixing my hair, and doing all my getting ready things that morning.

“Mom, can you hurry?” he impatiently asked.

“Mom, why are you taking so long?”

“Mom, did you clean my glasses?”

“Mom, why aren’t you ready?”

I know that when he’s like this it’s better to mostly ignore him instead of returning his impatience, so that’s what I did. But not before I made one observation.

“Aaron,” I said. “You were so happy yesterday. So why are you angry this morning? What happened during the night?”

He just stood there and stared at me. I continued with my face preparation as he stared. Then he simply turned and walked out of the bathroom.

Soon he was back, of course.

“Well, All Star is boring!” he informed me. “I found that out during the night.”

It was really hard not to laugh. So that’s what he found out during the night? That All Star Sports, their activity for that day, was boring? Since when?!

Aaron went on to his day group and he had a reasonable day, from what I was told. I went in to his day group with him to talk to Barb about whether Aaron and I could take supper over to one of their residential homes on Friday. Aaron’s best friends, all girls, live there and he had been wanting to go back there again as we have done in the past. It cheered him up to have that planned at last. This was on Wednesday.

The next night, Thursday, Aaron had two hard seizures during the night. He stayed home on Friday, feeling crummy, but wondering over and over if we could still go to “Shawna’s house,” as he calls it. He insisted on going to get a few groceries with me, walking like a zombie through the store. He slept off and on during the day, but had no more seizures. We did take chicken enchiladas and No Bake Cookies to his friend’s house. I was so thankful that it worked out for Aaron to do that. He slept all the way there and most of the way home, but he had a good time at their house as we sat around the table, eating and talking. The girls had missed him that day at Paradigm, and they were so sweet…..rubbing his back and asking him how he felt. Each of them has significant special needs, so it’s just very touching to see them worry about Aaron.

Aaron was in bed a little after 8:00 that night, totally exhausted. But he kept coming back downstairs to be sure that it was OK for him to go to bed so early. It was fine with us, but not so much for Aaron and his rigid schedule. Bedtime is 10:00 or later!! Not 8:00!! But he slept for 12 hours and woke up a new person.

A very new person!!

Look at what Aaron did with Gary and I on Saturday.

IMAG01624 1

Aaron, who resists most work…..and definitely yard or garden work….actually got outside with us and helped!!

IMAG01619 1

And he helped happily!!

IMAG01623 1

He gathered up the big Crepe Myrtle limbs that I pruned, and he pulled up old tomato stakes with Gary in our garden.

IMAG01625 1

And Jackson supervised all of us.

IMAG01626 1

It was a really a pleasant afternoon, and a surprising one for us as we watched Aaron willingly help.

Simple pleasures mean the most to us. The warm sunshine, the fresh air, trying to find the pecking woodpecker we heard, laughing at Jackson encounter our neighbor’s trying-to-be-brave cat, and ending the day with a simple supper…..Wheel of Fortune and Blue Bloods…..and a couple games of Skip-Bo.

The older we get, the more we know that simple is good. Simple is better for Aaron. And the things that make him happiest inevitably do the same for us as well.

Fixing My Broken

 

I sit here at the kitchen table, one ear on the washing machine and the other on the baby monitor. Our washing machine was having some trouble two nights ago, so yesterday when Gary got home from work he opened up the back and got it all fixed. At least we hope it’s all fixed. That’s why I’m listening as it washes a second load this morning, wanting to be sure it’s working as it should.   A broken washing machine is no fun!

And my other ear is on the baby monitor because Aaron had two hard seizures last night. He’s been out of bed this morning, drinking his requisite three cups of coffee and then back to bed. He will sleep off and on today as he recovers. I’ll continue to listen for further seizures, which he often has during the day following his night episodes. Poor Aaron. He and I are still hoping to take supper over to Shawna and Aaron’s other friends at the house in which they live. He keeps asking if we can still go and I keep hoping that we can. Why do seizures have to so often mess up his fun times? It makes me sad for him. So in a sense a broken Aaron is no fun, either…..for him, certainly.

I don’t look at Aaron as broken, but I look at his seizures that way. They interrupt his life so often and so it breaks my heart for him. They break into his routine and into his plans, mess up his sleep and his following day, make his bitten tongue so sore, his head hurt, and all the rest that goes along with these awful things.

It makes me think about how we live among so much brokenness. There are so many broken issues and broken people all around us. Just this week I visited my dear friend, Atha, who is still struggling as she recovers from a stroke. Our friends in Texas, Steve and Dona, are working hard on his stroke recovery. Another friend’s son died from cancer early this morning. A friend is undergoing heart tests this morning. Our own daughter will soon have more medical tests run as her body continues to show a problem as yet unfound. Scrolling through Facebook…..looking at my prayer list……visiting with others on the phone or at lunch only confirms the deep hurts and problems that many are facing.

Our broken world is marred by sin, fractured back in the garden as Adam and Eve willfully disobeyed God. We and our world continue to bear the consequences of that sin in a universe imperfect now, not as God planned. But it’s not hopeless. Not at all. God made a way for each of us to come back to Him through His own Son. Jesus paid the price of sin, and for all who are called and respond to God through Jesus, there is life and hope.

God fixes our broken.

But we still have this life here, lived in broken bodies and in a broken world.

I watched Aaron on Sunday morning as he cut the Sunday coupons for me. This is his Sunday routine, performed faithfully for me as only Aaron does. In fact, he won’t let me come near the coupons with a pair of scissors because I don’t cut them correctly. Aaron cuts on the dotted line as best he can. Not near it. Not beside it. Not close to it. He cuts ON the dotted line.

Then he takes the little strips of paper that he has cut off and he meticulously snips them into tiny pieces as he holds the strip over his special trash can that’s just for that purpose and no other. It takes lots more time than necessary, but he doesn’t care about that. He has always, and will always, clip coupons and paper strips in this fashion. It’s very fascinating to watch.

IMAG01602

After the coupon is cut, he slowly and methodically places it into the coupon box. He doesn’t just toss it in. He slowly and carefully puts each coupon in its position, all neat and orderly. Look at the coupon box from this past week.

IMAG01618 1

As I think of the brokenness of life and of our world this morning, I’m reminded that for believers God is much like Aaron as he clips my coupons. God is full of purpose and planning for my life. He carefully cuts, always ON the dotted line, and He puts events and people and order into my life in the exact way that He knows is best. He is structured and precise as He takes each individual element of my life and places it exactly where it needs to be. His timing is perfect. His placement is always on spot. I may not understand it all. I may not like it all. But I know the One Who is doing the clipping and the snipping and the placement of each single area of my life, and of those I love.

And I know that I can fully trust Him to do it right. It’s called sovereignty.

“The Lord will accomplish what concerns me; Your lovingkindness , O Lord, is everlasting. Do not forsake the works of Your hands.” Psalm 138:8

Someday, maybe not until heaven, I’ll be able to open that box that holds my life events. I’ll see it all together, clearly, and I know that I’ll see order. I’ll see the plan of God. I’ll see each piece of my life put down just where and how God wanted it, always for my good and for His praise.

Even when I mess it up, God brings order back into it as I allow Him to do that. He loves me that much, like the verse above says.

So I’ll let God do the clipping, even when I don’t understand it or even agree with all of it. Because I know I can depend on Him to do it right, every single part and piece.

He keeps His ear on us, and He fixes our broken. He’s the only One Who can.