Category: Family

I Was Thinking

I could tell right away this afternoon, as soon as Aaron came in the door and found me downstairs, that something wasn’t quite right.  As I looked at him I knew that he had been crying, and that was confirmed as soon as he began to tell me about his day.  He was trying to smile but his mouth had that familiar taut look that told me he could easily cry at any moment.  I tried to just listen, but his version of events is usually very hard to follow.  Therefore, I had to ask questions, which frustrated him……especially when he was already frustrated.  That led to me giving him a lecture about what he told me had happened.  I wasn’t helping at all.    

After listening to Aaron, and especially after talking to Misty, one of his staff – I was able to piece together what had transpired.  Apparently, at the theater, Aaron had given Rosie a playful whack on her rear as she passed him in the aisle on her way to sit beside him.  Rosie didn’t  think a thing about this behavior of Aaron’s.  One of the staff told Aaron that he was being rude, and for some reason Aaron became very sad about what he had done.  He finally got up during the movie and sat outside in the hallway on a couch. 

Let me explain some things about Aaron.  He does not have the filters that you and I have.  He has an almost uncontrollable urge to whack us on the back or on the rear or maybe on top of our heads.  He doesn’t do it all the time, but often enough that he gets fussed at regularly.  Aaron also has a very hard time controlling his mouth.  Often he is funny, as you know from what I write about him, but he can also be very insulting and frustrating.  He might call someone weirdo or stupid or dumb or many other names. 

It’s complicated, but Aaron’s brain literally doesn’t connect things the way that others do.  We have worked and worked with him from the time that he was a very little boy over these issues……and many more.  He is high functioning enough that you would think he could control these impulses, but he often cannot.  We still correct him……we still reward him, especially with praise, when he shows restraint……..we still caution him about correct behaviors and speech before he goes to his day group………but we still see these same behaviors over and over.  We can’t even tease Aaron very often because if you give him an inch he will take a mile.  In other words, if he sees a small opportunity that teasing may afford to tease us back, then he will strike with both barrels.  How often have we all heard Aaron say, “Oh yeah?”…….and then launch into some verbal or physical barrage, all “in fun.”  Therefore, we have to discourage physical play with Aaron as well as verbal bantering.   

Aaron’s mouth and his hitting are a very large part of his disability when it comes to getting along in groups of people.  When his staff understands this, and loves and understands Aaron, then things run smoothly.  We are very thankful for the understanding and loving staff that he has at Paradigm. 

Now back to today.  For some reason, Aaron was very emotional today.  Recently we’ve noticed that he wants to be pleasing, and that he talks a lot about having friends.  He wonders why certain of his peers at Paradigm like him, which is both sweet and sad to hear.  He and Rosie are very special friends, and they understand one another.  They can poke each other or step on each other’s foot on purpose, and know that it’s all in fun.  So when Aaron gave her a little hit on her rear, it was no big deal to him or to Rosie.  It was also appropriate for one of the staff to tell Aaron that he was being rude.  Gary or I certainly would have done the same thing.

But for some reason, today, it got to Aaron.  He didn’t want to be rude, especially to Rosie, and he didn’t want to have to come home and tell me that he had been rude and that he had hit Rosie when I told him once again this morning not to hit anybody.  So he left the movie that he really wanted to see, and he sat out on the couch.  He said to me, “I sat on the couch and was thinking.  What do you think of me thinking?” 

I had to smile at that.  And I told him I thought it was a very good thing to be thinking.  He continued, “What does that mean to you, that I was thinking?  That was new to me.”  As he talked and talked, I felt like I understood what he was trying to convey.  He was upset that he had whacked Rosie and he was upset that he was rude and he was upset that he had to come home and tell me about it.  But it went even deeper than that.  I learned from talking to Misty on the phone that Aaron had told her the most amazing thing.

As they drove away from the theater, with Aaron crying, he said to Misty, “Do you know why my brain doesn’t work like everybody else’s brain?  I tell my brain to not do something but it does it anyway.”

My Aaron expressed himself in a way seldom heard from him.  It was both eye-opening and heart breaking.  How I wish I could reach inside his head and rearrange all of his neurons for him as easily as I can gently put a band-aid on his wounds!  How I wish I could give him a magic pill that could control his impulses!  How I wish that I could make his life easier.

What can I do?  I can, along with Gary, love our Aaron.  I can listen a little longer before I jump in with a lecture, assuming I know the whole story as I did today before he has time to slowly sort it out in his head and tell me.  I can, like Aaron, learn to sit on the couch and do some thinking……….some thinking about what Aaron is thinking.  And that can be some deep thinking right there, trust me.  For what Aaron is thinking is complex and puzzling and confused…..and sometimes just sad.  His tears today showed me that. 

Well, he’s in the family room right now crunching on some cucumbers that Gary sliced for him.  I hope he’s done with the crunching before I go down.  He wants me to do something with him, and I hope that I have the time.  Maybe I’ll give his back a good tickle with the back scratcher, and listen to him talk. 

No telling what I’ll learn if I just listen. 

 

Smooth…..It…..Over

I’m sitting at our neighbor’s house, surrounded by the unfamiliar noises of a house that I do not know.  Around me are many treasures that have been accumulated in the sixty-eight years of marriage that this couple have known.  These items mean nothing to me beyond the fact that some are beautiful, some are unique, and some are mysterious.  But each one is very important to Don and Nora, just as Don and Nora are of supreme importance to each other. 

Don is 87 years old.  He and Nora have been extremely close for all their marriage, I would dare say.  They are never apart, and if you saw them in the aisle of our nearby grocery store they would more than likely be holding hands at some point.  Nora speaks loudly so that Don, who has refused to get hearing aids, can hear her. 
 
Don and Nora

Don has weakened considerably over the past two months.  He was finally hospitalized last week, and to everyone’s great shock he was diagnosed with cancer of the lung, liver, and colon.  He came home this week, on Monday night.  Home to die, as he and Nora wished, instead of remaining in a hospital.  How very sad.

Nora could only bring Don home if she had a plan of care in place.  We, and the neighbors on the other side, said that we would do what we could to help.  There have been a series of events over the past few days and nights.  Don has gotten out of bed during the nights and we have gone over to get him back in bed, and to calm Nora.  She continues to insist that she can handle all of this and she refuses to hire an aid, or to put Don on the Hospice floor of the hospital.  We shake our heads, but we do understand her desires and we sympathize with her pain.  Hospice is also being wonderful, but for all of us there is only so much that Nora will allow us to do.

The second night that Don was home was particularly hard.  Gary and I went over to help, as did the other neighbor.   Nora was at a breaking point.  At times that are this stressful, it’s easy for tempers to flare.  Nerves are raw, and the body and spirit are depleted.  I gently attempted to direct Nora’s thinking toward getting some needed assistance.  She snapped.  She did not want to hear anything that even remotely suggested taking Don out of the home, or hinted at her not being able to care for him – on her own.  The situation was tense, and hurtful.  We stayed until we were able to do what we could, and we left hearing the slamming of the door……….an evidence of the slamming door of Nora’s heart.  It was the sound of her deep grief and her strong spirit.

We walked back home under the beautiful moon and stars, Gary and I.  The air and the snow were cold, just as I felt my heart was becoming.  Anger and hurt will do that to a person, no matter the circumstances.  Gary was so kind, both to Nora and to me.  At Nora’s house he gently touched my back in order to remind me to be quiet.  He ministered to Nora and to Don that night, but to me as well.  He brought my focus back to the point of understanding our position in all of this, and of trying to honor Nora’s wishes, no matter how unreasonable they may seem to us.    

There was someone else who reached into my angry heart that night as well.  My dad.  I was with my parents during the month before my dad died.  I saw the love they had for each other, much like Don and Nora.  I saw the fear and the grief and the decisions that were all a part of this process of death.  And I saw some tense moments between my parents that arise out of the exhaustion and pain of such a looming loss.  There weren’t many of those times and they weren’t extreme, but they did occur.

Mom and Dad
After one such time, I helped get Dad on the couch from his wheelchair.  He and I sat there for a minute, just the two of us.  I put my head on his shoulder as he sat there with his head bowed down from weakness.  We held hands and I spoke words of comfort to him, or at least I hoped they were.  And I told him that I was sorry that sometimes things were stressful. 

My dad slowly lifted his tired head, and he slowly turned to look at me with those wise, kind eyes.  Then he smiled……..his very familiar and very sweet smile.  And he said, ever so softly and slowly, “Smooth…..it…..over.”

His wisdom, in those three little words, was profound.  I have been reminded of that wisdom many times since my dad went on to heaven.  I am so thankful for that moment with him and for the deep lesson I learned once again from my dad, even as he was nearing death.  Those words came to me as Gary and I walked home in the cold snow, still stinging from other words that were not so kind. 

Smooth….it….over.  Be the one to make things right.  Be the one to show kindness.  Be the one to reach beyond harsh words and simply smooth it over.  Is it easy to do?  No.  Is it right to do?  Yes! 

The next day, when Nora called me for help, my attitude was changed.  I had peace and I had empathy for this faithful woman who so loves her dying husband.  Nora hugged me and as I later left her at the end of the day, she said three words as well.  “I love you,” she said as she hugged me close.  And I was able to freely hug her in return and tell her I loved her as well. 

There is freedom in forgiveness.  There is escape from bitterness when I heed the words of my sweet and wise dad.  Smooth….it….over.

Thanks, Dad.  I miss you but I’m still listening to you.
My sweet Dad
 

 

 

 

Confucius Say……….

Aaron has been home for three days because of the big snow we had.  When Wichita schools are closed then his day group is closed as well.  Plus I wouldn’t have wanted him out on these very dangerous roads.  It’s really been fun to be snowed in together……for the most part.  He has been very happy to watch movies, or watch movie clips on his computer; he’s been happy to play computer games; he’s been happy to watch his taped Law and Order episodes; he’s been happy to eat tons of peanuts; and he’s been happy to just enjoy time with me.

Of course, I’ve had to adjust to having Aaron repeatedly ask me questions. 

Mom, what are you doing?

Mom, what’s for lunch?

Mom, what are you doing now?

Mom, can we play Tri-Ominos?

Mom, are you watching Wheel of Fortune?

Mom, what are you doing now?

Mom, can I take a nap?

Mom, do you think we can play a game tonight?

Mom, now what are you doing?

Mom, what’s for supper?

Mom, did you say you could watch Wheel of Fortune?

Mom, what are you doing?

In fact, Aaron saw this Baby Blues cartoon yesterday and said, “Mom, look!  This is like I do to you!”   Is it ever!
 

On his first snowed-in morning, I looked in the family room and saw Aaron in the perfect lazy day posture.  He had the right idea from the very start.  That morning, I fixed him French Toast and even cut it into little squares the way he likes.  He had coffee and watched his taped program, and struggled not to slip Jackson pieces of yummy French Toast. 
 

Later, for lunch, I fixed us a pizza and we ate while we played Tri-Ominos.  Once again, Jackson wanted in on the action.  And Aaron had his silverware that he never used, and his toothpicks, and his napkins, and his bowl in which he put his pepperoni – which he later ate separately.  Don’t ask me why.  And if all these things sound familiar to you long-time readers……..welcome to my world, where I am surrounded by the familiar and the routine EVERY SINGLE day.  I just want you to feel like you’re a part of my world.

You’re welcome.   J

 
 
Yesterday, Aaron and I ventured out to our nearby Dillon’s.  It was nice to get out of the house.  We picked up both some necessary and some fun food.  And once again we ate lunch while we matched all the numbers in Tri-Ominos.  We played three games of Tri-Ominos over those three days.  Aaron won twice and I only won once.  Of course, this made Aaron very happy.

 
What did NOT make Aaron very happy……..not at all happy……..was how I started preparing him yesterday for his return to Paradigm today.  I knew that I could wait until Monday to send him back, but I also knew that it would be good for him to be made to go back today, on Friday.  School was back in session and the roads were passable, and I just knew that Aaron needed to be gently urged back into his routine. 

He much preferred his stay-at-home routine.  I always wonder if I make it too much fun to be at home.  I want him to enjoy time at home, and I certainly enjoy time with him (for the most part).  And deep down I know that no matter what his time at home holds for him………good or bad……….interesting or boring……….he still won’t want to get back into his “you have to get out of the house and live your life” routine. 

As is so typical of Aaron, yesterday he agreed with the fact that he would return to Paradigm on the next day.  This morning, however, he displayed his frustration by raising his voice and saying he would NOT go to Paradigm, and why can’t he just return on Monday, etc.  But I know Aaron and I know that Monday would be no better than Friday……..at least not by much.  And once I tell him that we are going to do something…….that HE is going to do something………I need to stick to my guns if at all possible. 

We exchanged some firm words.  He tried to use guilt.  “You just want rid of me!” he blurted out.  He tried to use sympathy.  “I’m tired!” he said.  He tried to use his bargaining power.  “But I’ll go on Monday, just not today!”  he continued.

He saw that I was standing firm, though, but what he couldn’t see was that inside I was nervous.  I was nervous about how angry he was going to become, for one thing.  I was hoping that I would remain firm but loving, not lashing out in anger at him if he became angry.  It’s that inward struggle that we parents have but that we can’t reveal. 

Finally, Aaron asked if we could stop at Dillon’s and let him get something to take to Paradigm.  He didn’t say that he wouldn’t go to Paradigm unless I stopped.  That would have resulted in a big no from me.  But he asked politely if we could stop, and so I said yes.  Aaron instantly calmed.  And though he was still a little grouchy when we left the house, he was for the most part compliant and happy.

I talked to Aaron awhile ago.  I don’t think he’s had the best day at Paradigm.  His mouth gets him in so much trouble, but also is what makes him so funny.  How I wish we could just balance him out!

Yesterday he said, “Mom!  I was reading about a man in my Handy History Answer book.  His name was Con-fuse-ush!”   Notice how Aaron pronounced that name.  J 

I need to change Aaron’s name.  We should have named him Con-fuse-ush……….because leaving us confused is just what he does on most days. 

“Mom, what are you doing now?”

Scratching my head, Aaron…….scratching my head.

 

Yesterday – A Part of Today and Tomorrow

I opened my desk drawer not long ago, pulling it way out and getting a rare glimpse into that dark corner that rarely gets my attention.  I saw the stack of old calendar planners that I had saved.  You know how it is.  I saved them just in case I ever need a piece of information that they might contain.  Maybe the date of a doctor visit or a surgery or a test of some sort.  The ones that I eventually pulled out of two separate drawers went back to 2002.  Seriously?  I had no idea how much time had passed.  Did I really need to keep my planners from 12 years ago? 

 
I gathered the ones together that I had no intention of keeping and decided to take them downstairs to throw them in the kitchen trash can.  But before I did that, as I sat at my desk chair, I opened one of the oldest planners.  I was quickly pulled back in time as I flipped through its pages.  So many memories came rushing in.  I reached for another planner, and another, as I sat there lost in memories. 

We were in the midst of life with busy kids, that’s for sure.  I was homeschooling all three of them, with our friend Amy helping to tutor Aaron.  Then I saw the transitions that we were going through with Aaron as we had him tested, enrolled him in the local high school here, and had him then admitted to a Wichita school for special needs life skill training.  All the appointments that I had written down brought back so many recollections of that time.

 
There were football practices and football games for Andrew.  I remembered all the times that Gary took him to practices, or I did when Gary was at work……as well as the year that Gary helped coach Andrew’s team and the hours they spent together that year.  Then later came the wrestling practices and many wrestling meets.  And after that came track for Andrew.     

With Andrea, it was largely her music that kept us on the road.  Piano and violin lessons, recitals, and special events related to her music.  Then there was the season that she and a friend tried volleyball.  Oh yes, how well we remember that experience! 

All the doctor appointments for each of them, much less for me, were meticulously recorded.  Dentist visits, physicals, wisdom teeth surgery, orthodontist visits for Andrew…………and so many more.   For Aaron, there were the specialists, of course.  The EEGs, the MRIs, the VNS surgery, the five day video EEG in the hospital……..all of it.  I smiled at the ER visit for him when he picked up a snake and it bit his hand.  I remembered that I wasn’t smiling that day.  And his broken wrist surgery was there as well, of course. 

We spent countless hours in the car as I drove them all to their activities, especially Andrea and Andrew.  I drove them to practices……….I drove them to jobs……..I drove Andrea to college in the early days before she got a car.  I drove Andrew to and from our local high school when he went there to finish school, before we got him his truck.  It seems so long ago! 

I saw records of so many church activities for all of us.  Ministry and growth and friendships were all over those pages, for each of us.  And there were other treasures as well, such as the visits from friends or family over the years.  These people arriving on this day and leaving on that day.  Or our trips back home, for many happy visits and then as time passed, the trips that were ruled by sad and hard times. 

I saw the date on which I had written that my dad was starting yet another round of chemo.  Just three little words – Dad starts chemo.  Then a year later, all the blank pages during the month that I stayed in West Virginia with him and mom the month before he died.  The same blank pages were there from the year before when Gary’s mother died……and a year later when Gary’s dad died, two months before I lost my dad.  So many long trips home………so many blank pages when our normal schedule didn’t matter.

These planners that I held in my hands held far more than dates and times and schedules.  They held precious memories of a life that is now in the past for us.  The words in black and white…….the scribbled times and the jotted notes………were full of meaning for me.  But they didn’t hold emotion or feeling.  The feelings are in my heart, stirred alive as I read the facts of our busy life being lived during those active days. 

And I would not take back one second of it!  No written words in a planner can convey the bonding that was occurring during all those endless hours of time spent together………….whether it was in our van, or in a waiting room, or sitting on bleachers, or nursing one back to health after surgery.

Behind all those sterile words on those lined pages, there was sharing.  Talking about relationships as we drove along, or what God would want one of them to think or to do, or what their dreams were.  There was laughter…..so much laughter.  We still laugh about some of those moments today.  If I said to Andrea, “You sophomore or junior?”……she would laugh and laugh about that moment.  Or to Andrew, if I said, “I laugh in the face of G-forces.  HaHaHaHa!!!”……he would laugh, or at least give me a patient smile while he rolled his eyes. 

There was plenty of embarrassment as well, trust me.  Andrew’s embarrassment at having his mother drive him to and from school for several months is the stuff of legend……….but there was a lesson to learn.  The same for Andrea during her first few months of college. 

I wondered, as I read, where I got the energy for those extremely busy days.  I was younger and it was just life, how we did it, and I didn’t think a thing about it.  Now it would be daunting.  Then, it was normal.

While that life is in the past for us now, I know that the time spent together put down roots in their hearts that are still growing today.  What occurred in the past is still a part of their present……our yesterdays are a part of their today’s.  It’s helped them be who they are, and who they are yet to become.  So our yesterdays are also still to be a part of their tomorrows.

To young parents who are now where I was all those years ago, I would say:  Look at your children with fresh eyes.  See and know that one day, in what will seem like the blink of an eye, your little ones will be driving away to begin their own lives.  The time spent with them now can never be reclaimed or lived again.  We can never re-live today.  Each day, each moment, each event, each conversation, will make them into the adult that they are yet to become.

And so many of these moments and these conversations happen in the dailiness of our lives…….the routine that can become too routine and tiring on some days.  Treasure the moments………claim each opportunity to learn and to laugh together. 

Some day you might open up your old planners, if you have them and keep them, and smile at the memories.  Maybe shed a tear or two.  But hopefully you will be mostly thankful for days well spent in the lives of your children and your families. 

Back to Normal, For Now

This has been a wonderful weekend for Aaron, especially compared to last weekend when he was feeling so horrible with all the seizures he had.  And the weather has been pretty and warm, so he was able to get outside for his relaxing time in the mulch.  Sorry for the picture through the screen.  Aaron is getting a little tired of all the pictures that Mom wants to take, so I didn’t let him see me taking this one.  J 

He enjoyed a trip to Dillon’s, where we had fun looking at pomegranates and kumquats……..and where he got to buy some of his favorite croissants (pronounced as croysants if you’re Aaron).  His eating has improved over the course of this week, but it’s been slow in coming.  And he’s been so slow all week in every way – in his movements and his speech and his eating and his thinking. 

He’s getting tired of us mentioning anything remotely to do with his health or with how he’s feeling.  Last night he got his bed ready in the meticulous way that he does.  There’s Mr. Snake, who will be moved under the covers beside Aaron when it’s time to go to sleep.  This is Aaron’s pre-sleep set-up that he has as he reads his Handy Answer Book.  He changes everything when it’s time for actually sleeping.  Routine, routine, routine.  So anyway, I mentioned something last night before I left his room that made him think I was going to talk yet again about how he was feeling.  He said, “Stop with all the how I’m feeling stuff!”  I think he’s on overload and ready to get back to normal.

He clipped all my coupons today even though there were lots of them, and he did it without taking a break.  He’s back to clapping loudly when he watches television, especially Wheel of Fortune.  Man!  Tonight I had to tell him to stop, but it felt nice to actually hear him clapping, if that makes sense.  He’s been yelling as he watches a movie in his room, and talking our ears off about the latest alien plot that he’s trying to figure out.  Annoying sometimes?  Yes.  But right now it’s a welcome sign that Aaron is back to his normal self, and we’re thankful.

We took a walk around our neighborhood circle this evening.  It was a beautiful evening for a walk, so we stopped by the lake and snapped a few pictures.  When I compare last week’s picture, taken at about this very same time of day as today’s shot, I’m very thankful for the huge difference.  

 
Aaron and I will see his autism doctor tomorrow.  We’re continuing to pray for wisdom and direction as we talk to her, and then to Aaron’s Epileptologist in February. 

And Aaron……..he’s planning where we will eat tomorrow for lunch, when he’s not talking about aliens.  I was so bogged down in aliens as we took our walk that I had to re-direct him to the first thing that came to mind, which was naming various restaurant possibilities for tomorrow.  But he’s talking, which he can’t always do after some of his seizures, so again I’m thankful. 

Sometimes the hard times change our perspective on thankfulness.  What we took for granted in the normal times becomes huge when it’s taken away, and if it’s restored then we just well up with thanks.  I know myself, and I know that I’ll end up taking things for granted or I’ll get irritated too often again as I tend to do. 

Like yesterday……when Aaron was eating lasagna………and I stepped out…….and Jackson the lucky Great Dane had a nice piece of lasagna for his lunch. 

Aaron!!! 

Getting Back in the Groove

I have definitely been out of my groove lately……and when mama is out of her groove, Aaron responds.  Both of us being out of our groove makes for some interesting times around here.  Both of us have been physically down at one point or another since before Christmas.  I was sick before Christmas, the week after Christmas, and again this week with my first ever sinus infection – for which I got an antibiotic that I hope will completely remove whatever bug is in my body for GOOD!  Aaron has struggled with some seizures; a bad sore throat that I shared with him because I’m nice that way; and an upset stomach that caused him to completely lose every bite of his favorite lasagna immediately after he got up from the supper table last night. 

Can we be done now?  I certainly hope so.  Yet I don’t want to complain.  We enjoy very good health most of the time.  And Gary has remained healthy through all this, which has been a blessing. 

Aaron isn’t used to seeing me sick.  I mean, he’s seen me not feeling well but to see me in bed in the middle of the day is unusual for him.  To see me cuddled under a blanket on the couch when it’s dinner time is highly unusual.  And of course, if something affects Aaron in a negative way then he will react.  And his reactions are not of the kind and caring variety, hardly ever.  He would have a very difficult time portraying care for me, although he has done that on occasion with a hug or by sharing a band-aid. 

On Monday, however, when I felt my worst and had been to the doctor, Aaron was at a loss.  This was the day that I was on the couch while Gary fixed Aaron something to eat.  When Aaron walked through the family room, I saw his eyes dart quickly over to my huddled form……..and then look away again just as quickly.  He had that familiar scared look on his face that I’ve seen so often…….the look that tells me he is uncertain and uncomfortable.  He cannot bring himself to express feelings like you and I can, but he must show something………and so he shows a measure of fear.  And also anger. 

I understand this about Aaron but it still puzzles me sometimes.  That evening as he walked several times through the family room, he made some comments or asked some questions.  I don’t even remember what they were, but I remember that he was mad.  I watched Wheel of Fortune with him, which I thought might help, but he was still showing frustration toward me.  Actually, though, the frustration was really aimed at the situation.  Mom being sick and out of commission made Aaron feel insecure.  His insecurity is shown by frustration, which is often exhibited with anger.  That night was no exception.  It didn’t get out of hand but his anger was evident in his tone of voice and his impatience.  I knew to just let it ride and to give him space, not asking lots of questions or trying to engage in much conversation.

Of course, the next morning he hoped that my sickness would mean that I couldn’t drive him to meet his day group, and therefore he would have an unexpected day to stay home.  When I told him that I was feeling better and that I could indeed drive him, he was suddenly wanting Mom to be sick again.  So funny how that works!  Again, Aaron is all about Aaron most of the time.  That night I knew that some one-on-one time with Aaron would mean a lot to him, so we played Skip-Bo……..and he was very happy!  It did us both good to spend that time together, despite his attempts at cheating.  He is quite adept at picking up extra cards or digging under the pile for a card instead of getting the one on top or any number of other cheating techniques.  I don’t dare turn my back on him during a game!

 
Two days later, though, Aaron for some reason had a very sad spell at his day group.  He cried there, wanting to come home so that he could “have fun”, and when he walked in the door at the end of the day he was a mess.  His eyes were swollen and blood shot, his neck red from rubbing his jacket back and forth over his skin, and he continued to cry as we talked.  When Aaron cries, then we know that he is extremely frustrated.  He kept declaring that nothing happened, that his friends were very nice when he started crying, and that he just wanted to come home.  He was somber at supper and for the rest of the evening. 

The next morning, Friday, he came downstairs fairly early.  He was still very quiet, and asked if he had to go to his group.  I said yes, which he calmly accepted – much to my surprise.  We talked about things Aaron likes to do at home and I told him that he should read more than just before bed……the only time that Aaron will read.  He said, “Like now?”  I said yes, and so he went up to his room, soon returning to the kitchen table with his Handy Answer Book and his watch, of course.  Keeping track of time is very important, you know! 

 
This was such an unusual moment!  For one thing, I was clipping some coupons I had hidden from him because he thinks he must clip ALL the coupons, but gets angry when he’s tired of all the cutting.  So I had hidden these and he caught me with them.  He asked about them, but he didn’t insist on doing them himself.  And the other thing was the simple fact that Aaron was reading his book in the morning!!  Not at night before bed, but in the morning……….gladly sitting across the table from me, seriously reading his book, with his watch perched near him so that he could see the time.  It was all very sweet and special to me.

I told Aaron that I would fix him his favorite lasagna for supper, and he was happy about that as we later drove to meet his group.  When he got home, he still seemed unusually quiet and remained so at supper.  He hardly said a word to Gary and I as he carefully took the top layer of cheese off of his lasagna, like he always does………because he saves eating it till last.  He was so quiet that we were a little worried, and then really worried when he didn’t want his salad, which he loves.  And he only wanted one helping of lasagna.  He laid on the love seat after supper, and within a minute he asked for a trash can…….and Gary and I ran, with Gary barely making it in time to hold the can for Aaron to use as he threw up all of his lasagna. 

Well, maybe that explained his somber mood over the past two days and his very quiet demeanor.  He dozed on the couch but didn’t throw up anymore.  The rest of the evening still found him being very unlike himself.  He was happy to go to bed and he slept well all night.

When he came downstairs this morning, his eyes were bright and he had a big smile.  “Mom!” he exclaimed, “I was upstairs watching a movie.  I have been not asleep!”  And I knew that Aaron was back.  He was talkative and happy, and proud of the fact that Mom probably thought he was up in his room sleeping late, but he had “been not asleep.”  I love the way Aaron arranges his words, and I love to hear him talk (most of the time!), and I love to see him happy and chipper.  He has been bouncy today, and full of talk, and he laughs as he tries to whack us when we walk past him.  Typical Aaron!

A while ago I put a load of clothes in the dryer and turned it on.  Right away I heard such a loud racket that I opened the dryer door to investigate.  Soon I found the cause of the noise…….a huge plastic die from a game of some sort.  And yes, Aaron had brought it home in his pocket……….his often bottomless pockets that hold his many found treasures.  And yes, he grinned broadly when I showed it to him and yes, he objected when I told him that he must take it back to Paradigm.  This is all so true to Aaron’s nature.

 
And I thought of how Aaron’s talking and all his noise and clatter are so typical of him………so true to his nature.  I miss it when he’s too quiet.  I don’t like it when he’s serious and somber.  I’ve gotten used to the loudness that is Aaron, and to all the clatter that tells me Aaron is fine and Aaron is being………Aaron. 

I’m thankful that he and I are both feeling better, and that we’re both getting back in our groove.  Sometimes I crave the alternative with Aaron…………quietness……….but I realize it’s not natural and I don’t like it at all.  The breaks I get from Aaron are needed and good, but when Aaron comes home, I want the real Aaron.

Loud clattering and chattering and all! 

I’ll Ask Mom

This past Saturday, I decided to make some Christmas cookies.  I knew right away the ones that I wanted to make as I pulled out my recipes.  There it was……Mary’s Sugar Cookies……….a family favorite for many, many years.  I was trying to remember where the recipe had come from.  I knew that Mom had gotten it from a friend when we kids were little.  I still use the original recipe that I copied from her file before Gary and I got married.  But there is no record about where Mom got the recipe.  Was it from Rose Stepp, who used to give Mom and us four girls perms at her house?  Or was it from Mary Underwood, another good family friend of Mom’s when we were growing up? 

As I was getting everything ready to make the cookies, a thought crossed my mind.  A very natural thought…….one that I have thought hundreds and hundreds of times over the years.  “I’ll just ask Mom where she got the recipe,” I thought.  But just as quickly as that thought occurred, I had a second thought……..a very sad realization.  I can’t ask Mom where the recipe came from because she won’t remember.  And if she did give me a name I would honestly not know if she was correct. 

It seems like a small thing – the fact that she most likely wouldn’t even remember Mary’s Sugar Cookies, much less where they came from.  But this inability to solve my cookie question is only the tip of the iceberg for Mom.  Her Alzheimer’s has taken such a toll on her memory now that it’s really shocking to talk to John and Jan about how she’s doing.  It’s also very telling to talk to Mom on the phone, and to realize that she doesn’t know who I am…….and even when I say that I’m Patty as we first start talking, I know right away that she probably doesn’t even know that Patty is her daughter.

It’s been totally surprising, too, to hear about how she doesn’t know John.  He and I talked yesterday, and the things he told me were so sad.  We thought that she would remember John for a lot longer.  He’s her only son, and he’s also her pastor.  But she is always surprised that the man in the pulpit is her son, and she talks about how she had no idea that John the pastor is John her son. 

Perhaps most stunning of all, though, is that she doesn’t seem to recognize Dad as she looks at pictures of him.  Mom will point to pictures of her and Dad, and then refer to him as her father.  She did recently, with John, point to her wedding picture and refer to Dad as her husband……but not as Jack.  She rarely if ever talks about him anymore.  We just shake our heads in disbelief.  I’ve never known another couple as devoted to each other as Mom and Dad were.  They were inseparable during their retirement years.  But now this awful Alzheimer’s has taken him out of her mind, it seems.

Maybe, though, in some ways that lack of memory is a blessing for Mom.  Tomorrow marks five years since Dad went to heaven.  I was with them the month before he died.  I saw Mom’s total commitment to him as he declined.  There was nothing she wouldn’t do to make his days more tolerable.  At night he would lie in his hospital bed and she would be lying in their bed beside him with her hand through the rails, holding his feeble hand as they fell asleep.  She cleaned him and nursed him as best she could and made sure he was warm and comfortable and happy.  She was getting very confused at that point, and Dad knew it.  He was so worried about her, but we assured him that she would be fine.  I think he needed to know that before he was ready to leave.

Nearly every night during that month, Mom and I would ask Dad what he wanted to eat for supper.  She and I cooked a main meal for lunch, so supper was lighter.  And nearly every night he would think for a few seconds, then smile his incredible sweet smile, and softly and slowly tell us that he wanted scrambled eggs.  But he wanted Mom’s scrambled eggs, made by her hands.  I have the plastic cooking fork that she used for those eggs.  The thoughts of those nights, watching Dad slowly and contentedly eat Mom’s scrambled eggs, washed over me the other day when I scrambled some eggs…….and knew they were not nearly as good as Mom’s.  Or as Mom’s used to be, for I doubt that now she could scramble an egg at all. 

 
It’s truly a blessing that Dad isn’t here to see her like this.  We kids don’t know if he could have survived the sadness.  He was so dependent on her, and so we see God’s mercy in taking him on first.    Just like we can also see God’s mercy in the fact that Mom isn’t grieving his death or missing him daily like she used to do. 

 
But we’ll remember him for her, especially tomorrow.  And we’ll remember their love for each other, for each of us kids, and for the Lord.  We have so much for which to be thankful that even through some tears we can smile and even laugh at the memories.  Christmas was their favorite time of year, so now in some ways it’s bittersweet.  Yet Dad is so very happy in heaven, and Mom will one day join him there.

We have hope through it all.  Hope!  That’s a wonderful word that carries wonderful promise.  Dad’s death wasn’t the end and Mom’s Alzheimer’s is not the end.  We have eternity to anticipate, where nothing will ever be forgotten again. 

I can find out where that cookie recipe came from, too.

In Everything

Teaching our children to say thank-you was a lesson that we started at a very early age.  Most parents do, I’m sure.  It was so cute to hear their little voices say those words, and very gratifying as parents when they said them without prompting.  Like all of life’s early lessons, though, it had to be taught.  Very few children will just naturally be thankful.

Sometimes Aaron is demanding.  “Mom! Come here!”   “Mom! Look!”  Mom! Bring me my coffee!”  I remind him all the time to say please and thank you.  Why are those words sometimes so hard for him to say?  And how often, after handing him something, do I stand there and wait?  He might notice me waiting and he might not.  If he doesn’t notice, I’ll eventually say those words that all of us have said many times.  “What do you say?” I’ll ask.  Then comes the thank-you, but not without my prompting.  An unprompted, spontaneous thank-you would have meant so much more to me.

How often, though, do I do this same thing to God?  How like a child I am in my relationship to Him!  For me, it’s easy to say thank-you for the obvious.  My husband, my children, my home, my health, my friends, food………..   The list can get long.  But I know there are times when God stands beside me waiting for me to say thank-you.  Sometimes I just forget to say the words.  Yet many times the thing He wants me to thank Him for is not something that I necessarily AM even thankful for. 

There He stands, waiting.  Waiting on me.  The eventual stirring in my heart is when I imagine Him leaning down toward me.  “What do you say?” He whispers to me.  And He waits for me to remember that He has said, “In everything give thanks.”  Not just the obvious……….not just the pleasant……….but in everything.  And when I finally remember to say thank-you, or I finally get over my hurt or stubbornness and say thank-you, I know that He is very pleased. 

He loves me.  He wants me to know that “in everything” He has my good in mind.  Saying those words isn’t a magic formula.  It’s instead an acknowledgement of trust on my part.  Even when I don’t feel thankful, just saying the words to Him opens my heart to a level of trust that I hadn’t known before.  I trust that this thing…….this situation…….is sent from God for my good and for His glory. 

What do you say?  Thank You, God.  Thank you.

 

 

My Purpose

It was a Saturday afternoon several weeks ago when my phone jingled, and I picked it up to see that my good friend, Atha, had texted.  We exchanged greetings and then she asked how my day was going, wondering what I was doing.   So I told her what I was doing.  Ironing.  Yes, I was ironing on a Saturday afternoon.  Immediately Atha texted back and as I looked down at my phone, I read these four words.  Established in your purpose. 

That simple phrase jumped off of my cell phone screen and ingrained itself into my heart the very moment that I read it.  Wow!  In fact, I told Atha how I loved what she had just said.  And knowing me as she does, she told me to feel free to use it someday.  I could just hear her laughter. 

Part of the impact of those words came from who said them.  Atha…………Dr. Athalene McNay to be precise……….is highly educated.  She has also started a business coaching those who have ADHD, and she is a college professor.  I respect her abilities and insights.  Yet more importantly, she is my dear friend.  God allowed our paths to cross over ten years ago, and both of us are so thankful that He did.  So her words were both professionally uplifting to me and encouraging to me as a friend.  Atha and I are very much alike in some ways, but our paths at this time in our lives are very different.  We both have purpose, and Atha values my purpose as much as she does her own.

I’ve been dwelling on that phrase more and more lately……..established in your purpose.  Established in MY purpose.  So what is my purpose?  In what am I to be established; to be firm and stable? 

I remember when Gary and I were dating 35 years ago.  As we became more serious in our relationship we were discussing many things.  One important thing that I was thankful that we agreed on was the fact that if we got married, and if God gave us children, I wanted to be able to stay home with them if at all possible.  Gary and I both had the same mind regarding that issue, and as the years passed and our three children were born we were able to see that desire fulfilled.   That was a purpose that we had together, but it was definitely my purpose for as long as I could remember even before I knew Gary. 

I feel blessed to still be a full-time homemaker, and to be able to stay home with Aaron.  I never dreamed, and neither did Gary, that we would have a special needs child.  Aaron has certainly kept me more confined, should I say, and for longer, than I ever imagined.  Oh, he has his day group every weekday and is gone for several hours.  But taking care of Aaron is a purpose that is mine for this time of my life, and in that purpose I know that I should be stable.  It’s a good thing that I love this life, but there are those days………

Days of tiredness.  Days when I feel guilty for not spending more time with him, or for losing my patience with him.  Days of resentment.  Days of routine boredom.  Days of such intense empathy for him that I feel like my heart will explode.  Days of such love for him that I fight the tears.   Days of wishing I had any other life but this one.  Up and down, up and down. 

But isn’t this just life for all of us?  Whatever your purpose is……….whatever road God has set you on………can have many potholes and speed bumps.  It’s always tempting to compare our road’s journey to someone else who does it better or easier or more exotically.  I often have to force myself to look straight ahead as I refocus on my priorities.  My purpose, like Atha said.  And to be established in that purpose.  Firm and stable, as the definition says. 

Even if it means that I’m ironing on a Saturday afternoon, struggling to keep that one crease in Gary’s pants in the place where it belongs.   Ugh!  Even if it means listening to Aaron say the same things over and over and over……and clap……….and yell……….and get angry……and chew with his mouth open as he leans over the third bowl he thinks he MUST have with his snack.  The mundane purposes of life can really stretch my ability to be established, let me tell you! 

Sometimes I think, “Oh, if I was speaking or teaching or singing before large crowds, I would be so blessed and enthused.  What an impact I could have!”  

Or, “Oh, if I could figure out how to write and publish a book, just think of how many people I could reach!”

And, “Oh, if I had such-and-such a ministry or job, it would be so fulfilling!”

Maybe someday that will be God’s purpose for me, but for now it is not.  So for now I will be established in my purpose…….the purpose that God has planned for me this very day.  And I will seek to, as Paul said, do all things to the glory of God.  Don’t even ask how many times I fail in that purpose alone, but God is so patient with me and for that I am ever thankful. 

Being established in my purpose.  It may not be dazzling and exciting, but this purpose that God has for me is just right.

And so is yours.  Be established in YOUR purpose.   

 

I Am Thankful For…………

I wanted to share this Thankful List that Aaron typed up when he was nine years old.   It was 1993, and Gary was stationed at Fort Leavenworth.  We had just returned that spring from living for six years in Germany.  This is a copy of Aaron’s list that we had given to my parents, with Dad’s handwritten date at the top……..so we wouldn’t forget.  I’m so glad he did that.  And I’m glad that we have this very endearing record of just what Aaron Moore was thankful for at the wise age of nine.   I know it’s not the best quality but I hope that you can read it.