The Hard Parts

Tuesday was my birthday, and an early gift for me that morning was that Aaron got out of bed much earlier than the day before.  Why is that a gift?  It’s a gift because having to wake Aaron up to get his day going often brings anger from him, but if he gets out of bed on his own it usually comes with a far improved mood…from BOTH of us!

Aaron’s bedtime logbook that he faithfully fills out every day shows that he got out of bed at 7:16.  Not 7:15.  7:16.  I just wanted to be sure that I was clear on that point, since Aaron is forever and always very clear and precise about his times.

My memory logbook in this brain of mine has recorded that on Monday, Aaron did not get out of bed at 7:16.  He was sleeping soundly on that morning, so I had to wake him up, which can be very tricky.  Being awakened by Mom is not on Aaron’s list of Happy Ways to Start My Morning.  It’s not on my happy list, either.  That’s because there is almost no way for me to get Aaron to wake up that suits him.  Monday was a rather angry morning for Aaron, but he did go to his day group and I was thankful for the reprieve.

So, Tuesday was wonderful!  Aaron was happy, not at all because it was my birthday but because I did not have to talk to him in my weird voice…or shake his leg…or look at him with squinty eyes…or any of the other very irritating manners that he thinks I demonstrate when I’m working to get him out of bed.

I offered to fix Aaron some French toast since we had time and since he loves French toast.  He readily agreed, so while he showered…in whatever form that process took that morning because we’re never quite sure…I began the French toast.  Later, as Aaron sat down to eat, I saw him immediately place something from his plate onto the table beside him.  Can you see the little dark spot there on the table near his plate?

IMG_0931

I knew what it was.  The small glob was a piece of the toast that had cooked harder than he likes.  Aaron always places hard parts of food off his plate because he will not eat them, and he doesn’t want them near his food that he IS eating.

Later, when we were both done with our breakfast, I saw that on his plate was one more bite of French toast.  I told him he had one more bite to go as he got up from the table, but he told me that he didn’t want it.

“It has those hard parts, Mom,” he explained.  I didn’t push the issue or make a big deal about it.  After all, why ruin our good morning over one bite left on his plate?

IMG_0933

But as I looked at his plate, I thought of how much like life those hard parts are.  Hard parts are most definitely a real part of all our lives.  I wish I could just have all the plump, juicy pieces that are easy to swallow.  But no, it doesn’t work that way.  Life, all too often, seems to have way too many of those hard parts.

I remembered those set-aside pieces the next day as I took Aaron to his Epilepsy doctor appointment.  It was time for more blood work for Aaron, so after his doctor visit, we walked over to the building next door and went up to the lab. We’ve been very blessed that Aaron, from the beginning of his seizures at a young age, has always liked watching the needle go in his arm.  Even when it hurts, Aaron wants to watch each time.

IMG_0951

I looked at him sitting there, taking it all in, and I suddenly wanted to cry.  I wanted to cry because he looked so vulnerable.  We get used to all these doctor visits and needles and medicines and tests, but today it was like I was seeing it all fresh and new.  He was my little boy again, with his life ahead of him…all of us unaware of all the hard parts that were ahead.

Soon we were waiting on the elevator, Aaron more than ready for lunch at Applebee’s.  The door of the elevator opened.  I hesitated to get on because there was a woman in a wheelchair inside, plus the nurse who was pushing her, plus another woman, plus a man.  That’s a lot of pluses!  The woman in the wheelchair saw our hesitation.

“Come on in!” she cheerily said.  “I won’t bite!”

I laughed, told Aaron to follow me, and we stepped inside.  I stood in front of the woman in the chair, facing her.  I saw then that she was on oxygen.  She was wearing a hat to cover her bald head, and her skin had the unmistakable chalky look of advanced cancer.  I thanked her for letting us crowd in, and then I asked her how she was doing.

“Oh,” she said now with weariness, “I’ve been better.”

“I’m so sorry,” I told her.  I wanted again to cry, and I hoped she knew that I cared.

As the elevator stopped and we all went out into the hall, I saw that the man from the elevator was walking with a badly deformed leg, or maybe a prosthesis under his pants.  His walk looked so painful.  And there outside the front door was a van from a hospice group, waiting to take the sweet cancer patient to her destination.

Hard parts.  All around me were hard parts.

Still fresh in my heart was the message from a friend about her impending divorce, received that very morning.  Other concerns for family and friends weighed on my mind…death, loneliness, health issues, fears, financial problems, job concerns.

Do I sound depressing and dreary?  I don’t want to leave it there, because for those who know God and follow Him, these hard parts are also precious parts of growing closer to our Savior.  Jesus suffered, and so shall we suffer.  But we have hope because we know that God is in control of every part of our lives…the easy and the hard.

This hope isn’t like saying, “Oh, I hope that works out.”

NO!  This hope is a certain expectation that all WILL work out according to God’s will, for our good and for His glory.  The outcome may not work out exactly as I want, but my wants are not nearly as important as God’s will.

Is Aaron cured of his Epilepsy?  No.

Is Aaron cured of his autism?  No.

So, how do I handle those “no” answers?  I handle them by fully embracing that a “no” answer is still God’s answer to me.  I trust Him to know best.

And I don’t try to push those hard parts out of my life and out of my heart.  I accept their reality with God’s grace.

Of all the Aaron issues that we deal with, his behaviors are by far the hardest to handle with love and wisdom.  Gary and I get tired…frustrated…overwhelmed…angry.  But Aaron is the whole package, the easy and the hard.  The sad and the hilarious.

We wrap our arms around Aaron and love the whole person, seizures and autism mixed in with all the rest.

Like Jeremiah said:

“Blessed is the man who trusts in the Lord, and whose trust IS the Lord!”

              “You are my refuge in the day of disaster.”

And so must each of us see every part of our lives as just the right mixture that God intended, and not try to remove the parts that are hard as being too hard to handle.  Go in God’s strength and trust Him.

 

 

 

 

The Dandelion

I’m a little…actually, a lot…fired up right now because of an article I just read.  Apparently, a special-needs teacher in Indiana decided on award night to present one of her male students with the Most Annoying Male award.  Yes, you read that correctly.  She did this in front of all the other students and their parents, including the parents of this young boy.

OK.  You have the background now for why I’m upset. To publicly humiliate this boy and his parents is inexcusable.  To do it in this fashion is heartless.  And the fact that this woman actually teaches special-needs students is beyond belief.

Yesterday evening, after we ate supper and as I was cleaning the kitchen, I looked over at our kitchen table.  The evening sun was shining in the windows beside our table, highlighting the beautiful flowers that Gary brought to me last week for our anniversary.  The flowers still look so gorgeous, so bright and cheerful, that I just had to snap a picture.

IMG_0806

When I look at those pretty flowers, I’m reminded of Gary’s love for me over all these years, and how he showed it on this particular occasion.  Gary shows his love for me every day in so many ways, but he knew that these flowers would be a very special way to demonstrate his love on our special #40 anniversary.

Later, I went out to the garage to talk to Gary while he whittled on a walking-stick he’s finishing.  It wasn’t long, though, before we heard the familiar sound of Aaron’s fast walking headed in our direction through the house.  He loudly opened the door and barreled into the garage, primed to talk about whatever was on his mind.  So much for our quiet conversation, Gary and I both said without speaking as we looked at each other.

I became occupied with some things that needed my attention,  soon realizing that Aaron had disappeared but had not gone back into the house.  I stepped out on the driveway and sure enough saw Aaron at our neighbor’s house.  He was standing at their pool talking to them as they were, I’m sure, trying to have a few moments of conversation without interruption from either of their young boys.  After calling to him a few times, Aaron turned to come home, and I turned back into our garage.

A few seconds later, Aaron rounded the corner and ran excitedly into the garage.  “Here, Mom!!!” he exclaimed.  Into my face he thrust his gift…a decrepit looking and closed-up Dandelion.

Aaron was all smiles as he awaited my reaction, holding this unimpressive Dandelion under my nose.  Honestly, my first initial impulse was to say something like this: “Oh Aaron, how sweet, but I don’t need a Dandelion in the house.”

Yet something stopped me as I saw Aaron’s huge smile and looked at how his eyes were sparkling with delight.  So, I took the little Dandelion and instead thanked Aaron.  When I did, Aaron spontaneously put his arm around me and gave me the sweetest side hug!  If you know Aaron, you know how unusual this was!  I hugged him back, a little awkwardly because I had been turning to walk away and because I was so surprised at his hug.

Aaron chuckled, full of satisfaction at his good deed.  I told him to come with me and we would put this special flower in some water.  This made Aaron very happy!  When I put the browning and unimpressive Dandelion in a small plastic glass of water, you would have thought I had put a gorgeous bouquet in a crystal vase.  Aaron grinned from ear to ear as he bounded back outside to talk some more to Gary.

IMG_0808

I decided to put Aaron’s little gift beside Gary’s big gift, which only accentuated the smallness of this meager Dandelion.  Yet, in no way was Aaron’s intent any smaller than Gary’s.  Both were full of love, expressed in two different and yet two very sweet ways.

IMG_0809

This is Aaron.  He does, in the midst of his often perplexing and annoying ways, show us his love.  He shows love on his terms and in his times, not usually on ours.  But in allowing him this freedom we are also allowing him to be expressive in manners that suit him and that come from deep in his heart.  It’s beautiful to see!

You notice I did say that Aaron can be annoying.  Aren’t all of our children, at times?  Yet never would I publicly shame Aaron as this teacher did to her student.  Our special children often find it impossible to function as expected in our complex world, but they are rarely setting out to purposely be annoying.  It’s up to us as parents and as teachers to understand this and to respond appropriately.

I don’t always understand, and I don’t always respond as I should.  Like last night as I said goodnight to Aaron, why did I choose that time to mention his need of improving his showering skills?  It took him a while to wind down from that, just when I am most tired, but what did I expect?  There are times I need a lip zipper, for real!!

This morning I saw that Aaron’s closed and rather ugly Dandelion had opened fully and was a bright yellow.  I showed Aaron, and he smiled a smile that was as bright as his Dandelion gift.

IMG_0812

Our special children…ALL of our children…will open and thrive if given the opportunity.  A little water and some light totally changed my little Dandelion.  He still looked small beside the larger vase of flowers, but he has quite a large place in my heart.

IMG_0811

Just like our Aaron.  If given the chance, he can shine along with the biggest and the best.  It’s just going to be in HIS way, and I need to know that this is a good thing.  A very good thing!

I also need to remember to point out to Aaron his own progress and accomplishments.  He loves hearing affirmation, just like he loved seeing his Dandelion gift sitting there looking brand new.  It reminded him that he had made a very good choice!

I pray that Indiana special-needs teacher will understand this someday, too.  And I especially pray that her student will be nurtured and will open up to his full potential…and that someone certainly threw away that awful “award!”

 

The WHAT Bite?!

Doctor visits with Aaron are always very interesting, but this one was also TOO funny!!

He Said What?!

When writing about life with Aaron, I have often mentioned how he rubs his hands together.  He does this when he is excited, happy, nervous, or when deep in thought as he concentrates on a particular something that captivates him or requires him to focus.  When he is excited or happy or nervous……and even when he’s angry……his hand rubbing is usually very fast.  I wouldn’t be surprised someday to see smoke rising from his blazing hands!  But when he is deep in thought or totally focused on something, his hand rubbing is slow and calm.  It’s then that one can really see the intricate movement he makes with his fingers.  The whole process is very fascinating.

While in Houston recently visiting Andrea, she and I were able to watch Aaron as he listened to some of his favorite music.  He was totally engrossed in listening to Celtic Thunder, matching each…

View original post 992 more words

The Turn Signal

A few months ago, as I headed out of our neighborhood taking Aaron to his day group, I noticed that my right turn signal didn’t sound right.  The second time that I pushed up on the turn signal lever and heard that very fast clicking sound, I knew what it was.  Either my front or my rear turn signal was out.  I drove across town, dropped Aaron off, and then before leaving I got out of the van to check the turn signals.  Sure enough, the rear signal wasn’t working.

Bummer!  Of all the days to have this happen, it had to be on the day I had several errands to run instead of just going straight home.  One of the places I had to go was McConnell Air Base…and they are super picky there about things like the speed limit and vehicles working correctly.  Imagine that!

I drove under the speed limit the entire time I was on base and was thankful that I only had to use my right turn signal once.  But I was sure that this one time would be the one time that an MP was behind me!

I had also promised Aaron that I would take him to one of his favorite stores, Big Lots, after I picked him up.  Our local Big Lots had closed, so I had to once again do some extra driving in my defective van.  I never knew how many times I needed that right turn signal until it wasn’t working!  And I decided a possible conversation with a police officer was a better choice than the conversation I would need to have with Aaron if I told him our Big Lots trip was cancelled.

I wanted to paste a sign in the rear van window that explained my situation…to let others know that I knew my light wasn’t working…to tell them that I really DO know how to use a turn signal.  How many times have I said that very thing out loud about other drivers who don’t use their turn signals?  I was feeling a little guilty, wondering how many of their signals were broken, too.

Sometimes we just can’t see and don’t understand what a person is going through, do we?  We look at the outside and think things look fine, but the inner workings of a person are far more complex than what we outwardly see.  This fact is very true for every single one of us but is very VERY true for our Aaron.

To be clear, I am not saying that Aaron is broken.  What I AM saying is that Aaron’s responses and handling of life situations can manifest outward behaviors that are extremely frustrating for others around him to understand and handle correctly.  His brain is wired way differently than typical people, and so his turn signal often doesn’t let anyone around him know the direction he is getting ready to take until he’s turned that corner and there’s no going back.

Karen Williams wrote in a paper years ago concerning students with autism:  “Rage reactions/temper outbursts are common in response to stress/frustration.  Children with Asperger’s Syndrome rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be.  Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.”

Williams was writing about young students, but this same description also applies to adults with autism…to our adult with autism…our Aaron – who definitely flipped his turn signal on last week at the theater.

First, the set-up:  Aaron had been home for three days this past week due to our severe weather chances and flooding concerns.  Aaron loves being at home where he is totally relaxed and able to do all the things he enjoys.  But when he must re-enter normal life, like going back to his day group at Paradigm, it is often a huge struggle for him.  And therefore, for everyone around him.

On Friday, Aaron was reluctant to go to Paradigm.  Even the thought of Friday movie day didn’t really help him.  He decided not to go to the theater, despite having his nine dollars in his wallet for popcorn and the prospect of a fun movie to see.  I encouraged him to go to the theater, and his staff encouraged him to go after texting with me.  But no one MADE him go.  However, that is not at all how Aaron saw it.  His anger was getting deeper.

Second, the incident(s):  At the theater, Aaron took a behavioral turn that everyone could see despite his lack of a working signal.  I don’t even know all that happened there, and don’t really want to know.  I believe, though, that his day group staff was told by theater staff that Aaron needed to leave.  No matter what I know about Aaron and what I understand about his autistic outbursts, these times test my love and my patience.  I’m a normal mom who is terribly embarrassed when Aaron blows it, especially in public.

I wonder what all he did there.  Who saw him?  Did anyone we know see and hear our son acting that way?  Now what?

Third, the repercussions:  When I went to pick Aaron up at the theater, he was sitting in the Paradigm van.  Aaron emerged from the van with a very unhappy face, and I knew something not-so-good had happened.  Athena, his kind staff, gave me a very brief update, but Aaron’s still-angry mood told us it was not the time to discuss it.

He and I talked about it on the way to Wal-Mart, and again inside the store.  But Aaron was saturated with frustration and guilt so I knew I could only say so much before I would push him over the edge again.  Two repercussions that initially happen with Aaron, when that angry turn he took is over, are regret and guilt.  He truly wishes that he hadn’t gone so far in his anger.

Aaron was totally compliant in Wal-Mart, overly so.  This is his way of making up for his angry actions.  At the self-checkout counter, Aaron was super helpful.  He held my coupons, helped unload the cart, and couldn’t say thank-you enough to the clerk who assisted us.

“Am I being good, Mom?”  he asked at one point.  “Am I helping?”  And he looked me square in the eyes, waiting for my response and my affirmation.  It would have been so easy for me to say, “Yes, Aaron, but I sure do wish you would have been this nice in the theater!”

But when I saw his eyes, tired from the bad day and hopeful that he was finally doing something good, I nearly cried.  Right there in the check-out lane at Wal-Mart with holiday shoppers all around me, I wanted to burst into tears for Aaron and for me.  For Aaron, because I fully know that he can’t repair his broken turn signal in time to avoid that wrong turn.  And for me, because I love him and I want to “fix” him, but I really can’t.

I turned away quickly and finished paying.  Aaron helped gather up the bags out of the cart and we walked to the van, happy that the rain had stopped.  When we got home, another storm was coming.  Aaron was concerned about the lightning while he was on his computer, so he wanted me to be sure and tell him if he needed to shut the computer off.

“Mom,” he instructed, “come up and tell me, or call to me from downstairs, OK?”

He waited for me to respond.

“I’m giving you two decisions,” he finished.

I always smile at how he says that…two decisions instead of two choices.

But I thought of how true his saying was at that time.  I did have two decisions regarding more than lightning and his computer.  I also had two decisions about that turn signal issue of Aaron’s.  I could be angry and berate him, or I could be loving and instructive at the same time.  The decision is mine to make, despite how difficult it sometimes is.  It’s easier to lash out at Aaron, honestly, but harder to be loving and patient with instruction thrown in.  Yet the first decision only brings more anger and hurt.  The second decision, hopefully, helps to fix Aaron’s hurting heart and show him a better way to handle his anger.

Back to my van’s turn signal – Gary was able to pick up the correct part and repair it that evening.  Aaron was beside him the entire time, at one point using that moment to show Gary some scrapes on his legs.  Aaron is so oblivious about how he looks in public, and at times it’s really funny.

IMG_0311

But at other times, like the theater incident, it’s anything BUT funny.  How we wish that we could install the part that would make Aaron’s turn signal work correctly and avoid all the damage that’s done when it doesn’t!

How many times do I wish I could paste a sign on Aaron’s back that explains his behaviors?!

I can’t, though.  We just keep driving down this road with Aaron, trusting that some people understand and not worrying about the ones who don’t.  Easier said than done!  But God does give grace and He gives us wisdom to make that right decision…and He redirects us when we don’t!

Aaron’s turns aren’t easy when his signal’s messed up, but we’re there to repair the damage and pray it works better at the next turn.

And sometimes hang on for dear life!

 

Holding Nora’s Hand

Nearly 20 years ago, Gary retired from the military and we moved to this house in this neighborhood in Kansas.  We’ve lived here the longest that we’ve lived anywhere and grown roots that we never dreamed would go so deep.

We hadn’t met our next-door neighbors yet when one day the kids and I were out working in our yard.  It was a hot summer day.  There in the driveway at the house beside us knelt an elderly man, our yet un-met neighbor, pulling weeds in the hot summer sun.  He was kneeling in his gravel driveway, working hard on those weeds, all the while coughing like crazy.

I was worried about him, so I told our three children to run over and see if they could help him.  Off they scurried, only to be told no and thank you.  We were sad that he didn’t want the help and worried about his coughing in the hot sun, but no is no.

Time went by, as have many of my memories.  I don’t recall how we broke the ice with our neighbors, but I do know that they loved our white German Shepherd, Rainey, and they eventually learned to welcome us and our children as their new neighbors.

Thus, we slowly came to know Don and Nora Kelly.  I distinctly remember that first Christmas, standing on Don and Nora’s front porch holding our simple covered plate on which we had placed some home-made Christmas goodies.  Don was totally surprised to open the front door after we rang the bell, and to see all five of us there with our smiles and our Merry Christmas wishes as we handed him the plate.  He was embarrassed and awkward as he thanked us, and then said, “But we don’t have anything for you.”  We told him it wasn’t necessary and that we just wanted to wish him and Nora a wonderful Christmas.

The following Christmas, our doorbell rang one day and there stood Don, a smile on his face and a gift bag in his hand.  We exchanged Christmas gifts every year from that point on, for fifteen years.

Don and Nora were very private people, still not wanting to ask for or to receive help from any of their neighbors.  They did, however, learn to take the garden veggies that we shared with them every summer.  I also learned that Nora absolutely loved my homemade rice pudding, so I would sometimes surprise her with a big warm bowl full…and remind her that she had to share with Don!

Don’s hearing wasn’t the best and he never would get hearing aids.  Nora loved to talk…and talk…and talk.  I knew never to go over if I was in a hurry to get away, because Nora had lots and lots to say.  Don would smile and then disappear, leaving Nora and me to talk.  Well, leaving mostly Nora to talk and me to listen.

Don and Nora were very close.  They went everywhere together.  I never saw Nora drive.  When they were out shopping or eating, wherever they walked, they always held hands.  Always.  People who didn’t even know them recognized them as the cute old couple who were always holding hands.  There they would go, little tiny Nora dressed to the nines and with her long gray hair pulled back in a ponytail…and very tall Don, usually in a suit with his hair still dark.

Sometimes I would run into them at our local Dillon’s store.  We would stand in the aisle, Nora talking up a storm in her little shrill voice, with Don beside her smiling as usual.  The last time I saw them there, I snapped this picture of them as they walked away.  Hand in hand…always.

53fd1-donandnora

That Christmas, in 2013, I went over to their house as usual with our Christmas goodies.  Don answered the door.  He didn’t look well.  I stepped inside as he took our gifts and then said that he would get Nora to go downstairs to get ours.  I thought that was unusual.  Nora soon came with their gift and told me that Don wasn’t strong enough to go down the stairs and back up.  He had been sick, she said, and she was worried.

Things went downhill quickly from there.  Their other neighbors, the Tuflys, were also keeping an eye on Don and Nora.  One day they told Nora that an ambulance was coming to take Don to the hospital.  They had called one to come, and despite Nora’s objections, Don was soon admitted to the hospital.  When he finally came home days later, he was under Hospice care for advanced cancer throughout his body.

Nora insisted on caring for Don at home, though she was weak and exhausted herself.  But Nora was a tough wife who refused to let Don die anywhere but at home.  Our two families on each side of them helped…a lot…and three months after returning home, Don was gone.

Poor little Nora was left alone.  After being married to Don for 68 years, she was suddenly all alone in her big house and all alone in her many big decisions to make.  She had no hand to hold.  It was sad to see.

WP_20141010_001

She so wanted to be with people all the time.  She loved coming over to our house, including spending time with Aaron even when he got impatient with her.

IMAG00013

Both of us neighbors stepped up to help her with the housework, yard work, shopping, doctor appointments, and the many decisions she needed to make about her future.  Eventually, we helped her sort through every room and closet and drawer of that big house as she got ready for an estate sale and then a move to a retirement center.

Five months after Don died, we moved Nora to her new home.  What a huge transition this was for her!  Nora, I learned, was extremely afraid of being alone.  But alone she was, and she knew she had no choice.  Her inherent stubbornness stood her in good stead as she adjusted to not only this very new life, but a new life without Don by her side.

I had no idea at the time about what Nora would need, but I did know that she needed to be seen by her doctor about a wound she had gotten on her leg.  She was sent to the wound center, where she initially needed to be seen several times a week.  I reluctantly made the appointments for her, not sure how I was going to manage both Nora’s schedule and taking care of our special need’s son, Aaron.  Yet I couldn’t just walk away and leave Nora stranded.

Things grew after that.  Nora needed compression socks, special lotion, wrappings, and more doctor appointments.  Her eye doctor visit came, with a referral to a retina specialist.  She needed a new family practice doctor, along with an ENT referral and soon had to be seen by a podiatrist.  And don’t forget her normal dental visits…medicines to fill…insurance…hearing aids to buy.  It was too much for Nora to manage and understand on her own.

In a way, I became the daughter that Nora never had…and she became the mother that I never got to care for in her old age.  We got into a routine of sorts, Nora and me.  We were getting into a groove, you might say, bumps and all.

It hit me one day that I was now the one holding Nora’s hand.  From the very beginning of our outings, she would hold my hand as we walked.  Part of her reason was that holding my hand gave her stability, but I learned that holding my hand also gave her security.  She knew she wasn’t alone.

Nora needed me, but she had to learn to share me.  She especially had to share me with Aaron.  This meant that her appointments had to be scheduled around his doctor visits, and around the fact that I had to take Aaron to his day group every day and then pick him up.  I never knew about Aaron’s seizures, of course, so there were times I had to cancel a fun day or a doctor visit day with Nora.  She learned to adjust, but oh it was so hard for her to do that.

Nora also had to learn to trust me.  Trust was not an easy thing for Nora.  I learned that fact quickly on the day she was called back to see her doctor and I offered to watch her purse for her.  I got a big NO from her on that one!  Over time I knew that if Nora and I were to be together as much as we were, then I would need to earn her trust.  With time, that happened, and it filled me with joy that she would trust me with so much of her life.  And she even let me put my hand in her purse to help her find things – a HUGE no-no when I first got to know her.  When she let me hold her credit card or hold her purse while she was in a restroom, I knew I had truly arrived at full trust!

Our relationship continued to grow beyond doctor visits and trips to the grocery store.  We shared with each other our lives, our disappointments, our worries, our joys.  Nora gave me advice gleaned from her many years of living, and I tried to give her encouragement when she was scared and worried.

As time went on and we grew closer, Nora would also reach for my hand in more personal ways.  When I was driving, she would hold my right hand and tell me that she loved me.  As we sat in doctor’s waiting rooms, holding my hand gave her comfort.  And if we had a disagreement or she was upset, she would take my hand as she told me she was sorry.

One of the best things that we shared was our love for God.  Nora would pray the sweetest, most heart-felt prayers.  We nearly always prayed before we ate, and Nora really wanted to pray before seeing a doctor.  She was always the most panicked before those doctor visits – even before getting her teeth cleaned!  But prayer was a big part of Nora’s life, both praying out loud together and asking me to pray for her at home while assuring me she was doing the same for me and my family.

Nora wasn’t always an easy person to be around.  Our personalities were mostly opposite of each other.  I could make her laugh, though, and those times were so much fun.  It was good to see her relax, to enjoy life, to laugh, and to have something positive to remember.  She especially loved just riding, looking out at the pretty Kansas scenery as we drove up to Yoder or as I purposely took the longer, country route back to her apartment when I could.

She loved it when I took her to see the graves of Don and their son, Jim.  We made sure that there were always flowers in the vases…also making sure she could always buy them for half price at Hobby Lobby!

WP_20161130_13_32_22_Pro

And oh, how she loved eating out!

WP_20171101_13_21_28_Pro

Nora definitely made me laugh.  Did she ever!  She had the funniest sayings and such a spunky attitude.  She said whatever she thought, but she could get by with it at her age.  Servers in restaurants and the employees in stores we frequented enjoyed her so much.

Nora was very, very thrifty.  She never wanted to spend a dime more than was necessary.  I became very proficient at sneaking more money on the table for the server’s tip because Nora rarely left enough.  Once when we were in TJ Maxx, her favorite store, she insisted on me picking out a sweater as a Christmas gift from her.  Here’s how it went:

 

Nora:  Now, Patty, pick out anything you want and don’t worry about the price.

Me:  Nora, you don’t have to do that.

Nora:  No, I WANT to do it.  Now get something and don’t look at the price.

Me:  Are you sure?

Nora:  YES!!  Get whatever you want and don’t even think about the price.

Me (finally holding up a sweater):  I like this one.

Nora:  How much is it?!

 

HaHaHaHa!!!!  That was so Nora!

I have many funny stories that I could share about Nora.  Sad stories, too, as this past year Nora began to greatly decline.  When she first moved to her new home, she was alert and mostly healthy and so pretty.

IMAG00401

But last year, I noticed her increasing tiredness and confusion and weakness.  I talked her into getting a wheelchair to make our outings easier.  She would fall asleep while we were shopping, or when I would do her nails.

WP_20180425_13_38_54_Pro

Her vision was getting worse, and even though her retina doctor wasn’t sure if treatments were helping her, she insisted on continuing with them.

WP_20181105_13_01_13_Pro (3)

She would call me, and others, at all hours of the night.  She would wander the halls of her assisted living center during the night and was very confused about what time it was.  But she kept pushing on, not wanting the increased help that was provided and not wanting to discontinue our outings.

On May 1, I picked Nora up for what she called a “fun day.”  That meant no doctor appointments or anything else stressful.  We went to our new Cheddar’s for lunch.  Nora had never been there, so she was excited.  She ate a bacon burger and fries, loving every bite.  Then we went to TJ Maxx, where she bought two big bottles of perfume.  I think she bathed in the stuff!  Finally, to Dillon’s for a few of her essentials, where the wonderful employees there greeted her and made her feel loved.

On our way back to her apartment, she took my hand as I drove.  “Patty,” she said, “I don’t think I thank you enough for all you do.”  I assured her that she did.  “No,” she said, “I don’t believe I do.  I just want you to know how very much you mean to me and how thankful I am for all you do.”

At her apartment, she sat and watched as I put her things away, opening her perfume bottles for her as well as her other items.  I showed her several times that her credit card was indeed in her wallet in the pocket of her purse, and that the zipper was shut.  I put her receipts where they belonged and her mail, and once again went over her medicines with her.  All the things we always did.

I could tell, though, that Nora wanted to talk so I sat down beside her.  She told me that she just wanted to be loved, so we talked about that.  I assured her of my love for her.  She wanted to talk about heaven, so we did.  There were some personal things said, revealing some of her hurts in life.  I put my arm around her.  I tried to comfort her as best I could, but she knew I was leaving soon.  She always hated my leaving and being alone again.

That day, while we were out, she asked about all my children…each one by name as best she could remember.  She asked if they were happy.  Before I left her that day, she told me that she was so glad my children were happy.  Then our last words were what they always were.

“I love you, Nora,” I said.

“And I love you, too,” she replied.

Then a kiss…because Nora always wanted a kiss goodbye.

On Sunday, May 5, Nora called to ask me to cancel her retina appointment on Tuesday.  She told me she was sick, so I told her I would make an appointment with her family doctor, but she said no.  Before we hung up, she told me that she didn’t think she would make it through this.

I had a full day on Monday, so I wasn’t able to go see her.  I planned to go on Tuesday to check on her and to try to talk her into seeing her doctor.  But on Monday night, shortly after 11:00, I awoke to hear my phone vibrating over and over on my nightstand.  I clumsily answered it.

The nurse on the other end identified herself.  I immediately thought that Nora must have fallen and that she was on her way to the hospital.  But it wasn’t that.

“Patty,” she said.  “Nora passed tonight.”

It was so shocking.  So fast.  If only I had known on that Monday how quickly Nora was going downhill, I would have gone to be with her.  I would have held her hand until the end, but instead she died alone.  I know it’s not my fault, but I do have regrets that I wasn’t there the way she would have wanted.

There were many other regrets that ensuing week for all of us who knew and cared for Nora.  Nothing was done in the way that Nora had carefully planned with me several years earlier.  Each of us have had to come to terms with this, and to say goodbye to Nora in our own ways, the best that we can.

I’m thankful for my years with Nora…for the good times and the hard times, even.  I’ve seen clearly that sometimes God plops a person right in your lap, out of the blue, for you to care for and love.  For me, it wasn’t only that I could help Nora.  Nora also helped me in ways I am still discovering.  And helping Nora was also a huge way that I could serve God.

I was privileged to hold Nora’s hand.

And I am sure that I will always hold Nora in my heart.

WP_20170830_11_51_13_Pro

 

 

 

 

 

 

 

 

 

 

Included

Last night, I peeked into Aaron’s room and saw this:

IMG_0712

THIS…is Aaron finishing The Meg movie by watching the credits.  He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away.  He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said.  “It won’t be long!”

To Aaron, the credits are a part of the movie.  He will not end a movie when most of us say that a movie is over.  No.  The movie is over only when the credits end.

IMG_0714

If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently.  It’s not the first time we’ve seen him start this thing, but it’s the most recent.  It’s not something that we can touch or see, but it’s something that we definitely hear.  And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago.  We were eating breakfast on a Saturday morning on our patio.  Gary prayed before we ate.  One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew.  He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right?  Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron.  Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later.  And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation.  He also has a blind spot when it comes to seeing how he is affecting others at times.  But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her.  He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game.  He doesn’t ask her about her life but gets his satisfaction by doing all the talking.  Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him.  He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew.  Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch.  Just the two of us.  Talking.  Uninterrupted.

But then we heard the door in the garage close.  Aaron popped around the corner.  We were caught!

There Aaron stood, talking and talking and talking.  Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

IMG_0670

Our brains freeze and our minds wander when Aaron talks non-stop.  Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about.  It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard.  Grapes!  It was fun to see the picture as we’ve all wondered if the plant was a grapevine.  Gary and I were happy!

IMG_2618

Then yesterday, she sent a picture of their first onion harvest from their backyard garden.  And again, we were happy.

IMG_2621

But Aaron was not happy.  Once again, he sensed more enthusiasm from us about Andrea’s life than his.  And once again we were doing damage control for much of the evening.  UGH!!

This morning, Aaron was up and on his computer at 4:30.  That’s 4:30 A.M!!!  I got him to go back to bed, but he was up again not long after.  And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed.  But not where he could hear me.  He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing.  I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said.  “Do you want some eggs and bacon?”

He did.  So later, there we were, sitting at our kitchen table eating eggs and bacon.  I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing!  And as we ate, I was able to assure him that he IS included in our lives.  Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening.  Asking questions.  Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress.  AIM.  Girl face statues.  Titanium Man.  The frozen ship.  The brain controls that make you dizzy.  And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered.  “Like her grapes and onions!”

I wanted to laugh but knew better.  And I know better than to think that this inclusion and being loved business is settled.  I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

IMG_0713

 

 

 

FADING AWAY

I wrote this about our wonderful mother as the sad effects of Alzheimer’s overtook her.

“We reach into our hearts and into our memories, and we recognize her value to each of us in so many different ways. Our love for her is not based on her memory or lack thereof.”

He Said What?!

I called my mother on Sunday afternoon – Mother’s Day.  The phone rang a few times and her answering machine picked up.  Just as the familiar recording began, I heard Mom’s voice faintly say hello.  I knew then that I had awakened her from a nap.  I waited for the recording to end, for the beep of the machine to subside, and then I spoke to her.  She was confused for a minute as she tried to clear her mind.  Being roused from sleep always causes her to be very confused.  I told her who I was and that I just wanted to call her on her special day – Mother’s Day.  She was pleased, and as always, her ingrained politeness kicked in as she thanked me for calling.  It was almost as if she was talking to a casual acquaintance and not her daughter.
When I asked how she…

View original post 1,105 more words