Hey, It’s My Birthday!!

We just finished celebrating Aaron’s 35th birthday.  We had three days of birthday events, full of fun and loaded with Aaron’s exuberance.  There aren’t many 35 year old’s who would embrace their birthday with as much joy and pure excitement as Aaron did.  His birthday is one of those times that we fully see how unencumbered Aaron is with adult responsibilities and burdens.  35 doesn’t seem old or worrisome to him at all.  He’s all about HIS day and all the fun it holds!  He’s very much like a kid, and everyone around him smiles at his delight.

Aaron begins planning his birthday months before the actual date.  I’m not exaggerating.  He talks and talks about his plans.  Can we go here?  Can we do that?  And often, he doesn’t ask us before he starts inviting people to come to our house or to eat out.  It’s easy to be exhausted long before the birthday celebration even occurs as we try to keep up with him and his grand plans.

His birthday was this past Friday.  On Thursday, he stayed home from his day group.  He helped me make lots of cupcakes for his day group to share the next day.

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We also made lasagna for some of his friends to have on Thursday night.  We loaded up the van with lasagna, garlic bread, cupcakes and drinks before driving across town to the residential home of some of his day group friends.  All girls, by the way!  😊

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On Friday, Aaron carried his cupcakes into his day group…chocolate cupcakes with chocolate icing and sprinkles, per Aaron’s wishes.  At the end of his day, Barb…dear friend, second mom, and Paradigm manager…brought Aaron to meet Gary and me at Texas Roadhouse for his birthday “eating out” supper – Aaron’s choice once again, of course!

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Oh my goodness, his excitement was almost palpable!  He could hardly stop laughing and talking, and rubbing his hands together, in complete happiness.

“It’s my birthday today!!” he immediately told our server.  “Can you sing to me?!”

Our sweet server laughed as well and said of course.  She mentioned the saddle, which we had to explain to Aaron, and which he agreed to our surprise to do…but later he backed out on that saddle business.  He wanted the largest sirloin, but we insisted on the next size down.  He barely quit talking and eating.  He was large and loud and very, very happy!

His gift bags from Barb, and from Casady – Barb’s daughter and another very good friend – were perfect for Aaron because they know him so well.  And they love him, which he fully knows.

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At home later, he opened more gifts and he talked to family…and he loved the shark cuddle blanket from Andrea and Kyle!

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Then on Sunday evening, we met his special friend Rosa for their traditional birthday dinner at Chili’s.  Again, Aaron announced his birthday to our server and asked if they would sing to him and bring him ice cream with chocolate syrup.  Look at Aaron’s happy face when after dinner several of the staff sang and clapped and made Aaron’s final birthday celebration complete.

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Rosa ran to their car as we left, bringing out her doll head that she loves so much, while Louise and I laughed and laughed.  We love Aaron and Rosa’s friendship!

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My heart was warmed later when Louise told me about how she and Rosa were looking at calendars to buy for Aaron.  Aaron loves animal calendars, so Rosa eyed each of the three that Louise showed her.  Rosa instantly chose the buddy calendar that shows dog and cat buddies for each month.  Isn’t that so sweet?

I’m very thankful for each of Aaron’s friends and family that love him.  Every text, Facebook message, phone call, and gift to Aaron was also a very deep gift to me, as well.  I loved seeing Aaron so happy, and I love seeing Aaron BE loved by so many precious people in his life.

Sometimes it’s easy to feel alone when you raise a child with special needs, especially when they are fully adults yet, as in Aaron’s case, still so fully dependent on the help he needs from the family and staff that surround him.

Easy to look at others who are Aaron’s age, or much younger, who are finishing school and getting jobs and raising a family.

Those thoughts for me are fleeting, though, because I know the danger they carry.  Aaron is Aaron, created by God, and my responsibility is to love and care for him – not to regret that he isn’t someone else.

Barb’s daughter, Casady, a kind soul who loves Aaron to pieces, wrote this in Aaron’s card:

“Happy birthday, buddy!  Thanks for making me see all the sides of life.   Love you so much.”

 Those words seem to just go over Aaron’s head, but not mine.  Her words go straight to my heart and come out from my eyes in tears that I don’t let Aaron see…or he would call me a crybaby.

But oh, life really is so much more than our routine and our version of “normal.”  Trust me, Aaron shows us sides of life that we never even thought of!  And other sides that we would like to forget!

Yet Aaron also shows us how much fun it is to relish routine and special days and music and warm blankets and coffee and cows and horses and bugs and steak and movies and shopping and dogs and cats and milkshakes and sharing and pennies he finds on the ground.

I sometimes stop and look at Aaron when he’s doing an Aaron thing, and my heart swells ‘til it almost hurts.  He is so unique, complicated, hilarious, maddening, and upsetting.  All the sides of Aaron are also the sides that all of us have, but Aaron doesn’t often have the ability to hide them like we can.  They’re out there for all to see…and to hear!

And this morning, I heard a seizure a little after 5:00, and another just before 8:00.  Then one that he’s only had once before, back in April – long and strange and scary.  This is the side of Aaron’s life I dislike the most, but it’s a side we must handle and manage as best we can.  I handle it by being thankful in the many ways that God brings to my mind, and by knowing as well that God is there for us and for Aaron with His sovereign protection and grace.

The sides of Aaron’s life…the good, the bad, and the sad…are all wrapped up like a birthday gift that God gave to us the day that Aaron was born.  It’s up to us to relish all of who Aaron is, even the hard sides of Aaron; to thank God for our special gift; and to care for him in all the ways he needs.

Every side of Aaron…every day.

Hey, it was Aaron’s birthday!!

And I’m happy about that!!

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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.

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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.

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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.

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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!

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And oh, how she loved eating out!

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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.

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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.

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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.

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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.

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Going Home

 

 

 

Gary and I just returned this past week from a most wonderful trip back home…home being the Smoky Mountains of western North Carolina, and the Appalachian Mountains of southern West Virginia.  We are both mountain born and bred.  Now we live in a different kind of beauty surrounded by southern Kansas farm fields and beautiful skies.  But when we go home to where we were “reared,” as we say back there, our hearts are stirred by our mountains…and more so, by the family we love even more than those hills and valleys of home.

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The reason for this trip began because of my one and only brother, John.  We four sisters love blaming our only brother for lots of things, so we’ll lay this one on him as well.  John has retired from 45 years of pastoring, the last 28 years being at our former home church in Princeton, West Virginia.  Johnston Chapel Baptist Church is where all five of us King kids grew up, both physically and more important, spiritually.  So there were many, many reasons why going home on this trip was so special to all of us.  And as I said before my sisters and I sang on Sunday morning, “Any time there’s a celebration about getting rid of John, we’ll be there!!”

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But as we all planned this special weekend, the trip morphed into much more than only John and Jeanie’s celebration day.  We added on a Hollandsworth cousin’s reunion on Saturday before the Heritage Sunday service.  Then Gary and I tagged on a couple extra days so that we could spend time with his sister and family in western North Carolina.  Aaron stayed home in Kansas with our friend, Casady, watching over him.

Gary and I flew into Atlanta, and then drove up to Bryson City in steady rain.  Even with the rain and the low-lying clouds, the mountains were so pretty.  I love the drive, and I love the stories Gary tells as we pass by little old mountain roads that wind up to sights unseen from the highway.  Stories of his youth, with certain details untold, I’m quite sure.

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How good to see his sister, Sandra, and his Aunt Mary Leah!  We had two nights there, the second evening being joined by Gary’s cousin Nita, and her husband Charles.  Such delicious country cooking, Sandra’s specialty!  And such fun conversation and sweet fellowship!

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On Friday we made our way to Weaverville, NC, where we visited the dear woman who was married to Gary’s dad – twice! – and about whom I wrote a blog earlier this year.  (The Last Puzzle Piece )   Leo is so dear to our hearts, being responsible for getting Gary and his dad to finally meet after decades of never knowing each other…and allowing our children to know their other Grandpa.  Ray died two months before my dad passed away.

IMG957830Gary and I were very happy to spend a little time with Leo and her daughter Jonni, along with Sandra and Mary Leah.  Leo is on Hospice, so our time with her was extra precious.

 

 

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Then up to Winston-Salem, NC, to visit with Gary’s Uncle Jay and Aunt Teetle.  We love them so much!  Jay and Teetle added Gary to their family of four boys during Gary’s junior and senior years of high school.  Oh, the stories they could tell!  They hold a very dear place in Gary’s heart, and mine as well.

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We then drove a few miles to spend some time with our wonderful friends from way back – Bucky and Janet.  Janet and I were college roommates but knew each other before then as we went to summer youth camp together.  How fun it was to get together, to catch up with life and kids, to laugh a lot, to see their son Whitson on his dinner break from the Sheriff’s department, and to thank the Lord for healing Janet’s cancer.

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Next we headed for West Virginia, taking a detour on old curvy mountain roads in the dark so that we could avoid long waits on the interstate due to construction.  Those roads brought back many memories to me of multiple trips to college, the many turns and the small towns and the rock cliffs all a part of me from decades gone by.  But before we left the interstate, Pilot Mountain loomed before us as always – this time its top covered with clouds, making this old mountain sentinel look eerily beautiful.

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I began the day on Saturday with my dear high school friend, Karen.  We caught up over breakfast, somewhat.  Time always goes too fast but how much it meant to both of us to see each other again!

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Saturday was a wonderful day – our Cousin’s Reunion!  Bob and Jan, my sister and her husband, did a fantastic job of orchestrating this day.  First we drove in a large rented van to Welch, West Virginia, through small mountain towns…towns ravaged by the downturn in the coal industry over the years.

Trains are the lifeblood of this state.  My dad spent his life working for the railroad, and my niece’s husband is carrying on that tradition.  Coal is coming back, so maybe hope will return as well to these little struggling mountain towns.

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We cousins have reconnected due to Facebook.  It’s been so much fun to get to know one another again and was especially sweet to actually hug one another on this day…and talk and talk and talk.  Our grandparents, Guy and Lillian Hollandsworth, raised their children…our parents…in the town of Welch.

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Their house no longer stands, destroyed by one of Welch’s many floods.  But the school where Grandpa was the principal is still there.  We talked about how amazing it was that so many of his grandchildren were now standing in view of his school…the school our parents attended.

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That evening, more cousins came into town.  We enjoyed dinner together, and desserts at Bob and Jan’s house.  So much laughter, catching up, shared memories, and new ones being made!

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Sunday was Heritage Sunday for the church, as well as celebration day for John and Jeanie, and their family.

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What a very touching service, listening to so many testimonies about how John and Jeanie have cared for and shepherded this dear church.

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Jan’s girls, two sets of twins, sang beautifully.

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And we King Sisters tried to, as well, after many years of NOT singing.  We so missed our youngest sister, Kathryn, unable to come because of health issues.

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There was dinner on the grounds after the service.  No one puts on a spread like church members, especially in the south!

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It was just awesome to see so many old friends from my growing up years at Johnston Chapel!  So many hugs and smiles and memories!  Won’t heaven be wonderful?!

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It was over all too soon.  Everyone had to go back to their homes and jobs.  Gary and I drove back to Bryson City, relishing our sunny mountains on this drive…and relishing time with Sandra before flying back to Kansas…our other home.

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There is a bond with family that is unlike any other.  No amount of time apart or number of miles between can take away the shared connection of family.  And old friends have a connection nearly as strong as family.

It’s largely a matter of roots.  Our roots are imbedded in the ground of our youth…our growing-up years…our family and friends.  It’s where we are from, and it’s also who we are.  It’s the part of us that only our family and old friends truly know.  Going back to the place of my roots…to the people whose roots are entwined with mine…was, and always is, a nurturing time for me.  A time of thankfulness, refreshment, and peace.  A time never lasting long enough.

I love the song about home that Celtic Thunder sings.

“Home, I’m going home.  Home to the people I left behind. 

            Home to the love I know I’ll find.  Oh, take me home.”

 

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True, Special Friends

Aaron attends a special needs day group on Monday through Friday.  This day group, Paradigm, has clients of various ages – all adults – that have a variety of special needs.  They are out in the community nearly every day attending a host of different events and activities. 

Aaron has developed friendships there over the years.  Like any group that is together as often as they are, there are ups and down.  Then you throw in the special needs, medicines and side effects of medicines, behavior issues, lack of filters, and so much more – and there can be plenty of noise and drama and action. 

But there is something else I have seen there that is very touching.  I have seen empathy for each other.  I have seen real caring.  And I have seen forgiveness.

Aaron is in a very good place right now with his behaviors.  He has, in the past, struggled with anger and has had eruptions because of his lack of control.  He has come home with broken glasses, broken watches, ripped clothes, and many tears…his not being the only tears, for sure.  So while he is still loud in his playfulness, and loud in his talking, and loud and sometimes inappropriate in his teasing – he is basically very happy and helpful. 

When he was having behavior issues at Paradigm, there were very many times when it was his friends who warmly welcomed him back the next day.  He may have hit one of them, or insulted them, or yelled at them…but they would warmly tell him that it was all right, that it was a new day, and that they still liked him. 

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When he would have a rough day, he wouldn’t want to go back to Paradigm the next day.  Almost always, though, with our encouragement he would return.  I remember times when he would want me to walk into the center with him, as if my presence would buffer him from either being rejected or from bolting back out the door before he faced his friends again.

I would hear his friends call out to him.  “Hey, Aaron!” one would say, and then another.  I was just amazed at their forgiveness and their fresh start as they helped Aaron pick up the pieces and have the courage to face them again. 

Once I walked with Aaron over to a table filled with his best friends…all girls, by the way.  😊  Aaron was very nervous about talking to them after whatever had happened the previous day, but they spoke to him as if nothing had happened at all.

Aaron’s eyes filled with tears as they darted around the table, afraid to make contact. 

“I told Mom I was afraid you wouldn’t like me,” he finally said, his voice trembling and thick with emotion.

He was so like a child, this adult man.

“We like you, Aaron,” one of the girls said.  And they all said those same words as they affirmed to Aaron that he was their friend.  What wasn’t voiced, but was as clear as the morning sun, was that they understood Aaron, and they loved and accepted him just the way he was.

Aaron has made huge strides in learning to accept his friends there, as well, on many different levels.  He is sometimes curious about their physical handicaps…wheelchairs, muscle issues, deafness, seizures, etc.

He has seen many behaviors that are disruptive, loud, angry, and irritating.  And other behaviors that are just very unique – the young man who wears a suit and tie every single day, or the one who keeps a towel around his neck, or the person who rocks – and so many, many more. 

He has been curious about those who can’t hear or who can’t talk well.  About those from different ethnic backgrounds.  Or ones who are from different countries.

“Mom!” he said one day.  “Giselda said she was sorry in a Mexican way!” 

What is very sweet to me is to see how this setting is now so very normal to Aaron.  I hope that makes sense.  We might walk into Paradigm and see special needs.  Aaron walks into Paradigm and sees friends.

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Not long ago, as Aaron and I stood at the card counter trying to pick out a greeting card, Aaron remembered that he wanted to tell me something.

“MOM!!” he bellowed for all around to hear.  “I forgot to tell you something!!”

“You did?” I asked when he paused in order to see if I heard him.  How could I not?!

“YES!!” he continued.  “Guess what?!”

Aaron is great at making an effect.

“What?!” I obediently asked.

“Shauna got a NEW wheelchair!!!” he exclaimed.

My emotions tumbled at that point.  I didn’t let Aaron know this as I responded with excitement and asked him to tell me all about it.

You see, most 33 year old men would be saying things like:  “Guess what?  So and so got a new job…or a new car…or is having a new baby.”

But Aaron was just as excited about Shauna’s new wheelchair as anyone else would have been about those other life events.  It was sweet, but sad to me in a way, too.  It was just something that drove home to me once again, out of the blue in front of the card counter, the reality of Aaron’s life.

As I dropped Aaron off at Paradigm a few days later, Shauna and some of his other friends were coming down the sidewalk.  Aaron quickly lowered his window.

“Shauna!!!  Come and show my mom your new wheelchair!!” he yelled.

So she rolled over to the van to show off her new ride, and I loved every minute of it.  Aaron was so very excited as he jumped out, rubbing his hands together in pure delight.  Shauna was all smiles. 

How could I be sad when there are so many reasons to be thankful?

Watching him walk into Paradigm with his friends just gives me every reason in the world to be happy as I drive away, on so many days. 

And to the business owner across the street who one day called the Paradigm clients “a circus”:  I would choose that “circus” over yours any day of the week. 

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Other’s Colors

Do you remember that old song, Color My World, sung by Chicago?  I’ve always LOVED that song!  The meaning of those lyrics takes on a different hue when I think of our life with Aaron, and how he most definitely puts his own color on everything that we do. 

For instance, on Sunday after church I took Aaron with me to our local Dillon’s.  The grocery store is one of Aaron’s very favorite places!  Every aisle is full of discovery to him.  And since those discoveries involve his taste buds, he is especially eager to go along if offered the opportunity. 

Sunday was a chilly day, but not a super cold day.  However, Aaron decided that it was super cold, no matter what I said.  So he walked outside to the van with his toboggan perched goofily on his head and wearing his thick winter gloves.  I could have insisted that he take them off, but after suggesting such, he still wanted to wear his arctic garb and so I just let it go.

We went in the store, and as I headed to the pharmacy, Aaron veered off to explore the candy and snack aisle.  No surprise there!  When I veered up the same aisle to join him later, I had to laugh at the sight of him standing there examining the selection of peanuts. 

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He did not think it at all unusual to still be wearing his hat and his gloves.  Nor did he think it at all unusual to talk loudly when he saw me coming toward him. 

“Mom!!”  he bellowed.  “I’m looking at the peanuts!!”

And with that update, he proceeded to bend over to examine the jar that he thought he wanted.

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And then he had to stretch his arm out to retrieve the perfect jar.

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“See, MOM?!” he continued to bellow.  “These are lightly salted!  Is that good?”

I assured him that this jar was a great choice, and off we went to the self check-out…where he proceeded to talk to the attendant there about his lightly salted peanuts, in his commanding voice and his even more commanding presence…hat and gloves still included.

Sometimes it’s easy to be embarrassed by Aaron.  He doesn’t need the funny hat and gloves to be noticed, trust me!  So on this day, as he was even more noticed than usual, I just smiled and tried to see Aaron through fresh eyes…to relish how unusual he is…and to enjoy the moment.

The colors of that moment could have been red from my red face, and maybe my face was slightly red some of the time.  But that’s OK.  A little red doesn’t hurt me one bit! 

Another aspect of my colorful life with Aaron has been the joy of getting to know other moms of special needs children and adults.  The special bond we share is a rare treasure.  It’s very encouraging to walk the same path with others, though none of us would wish our circumstances on them.  But here we are, together on this journey, and our shared experiences make us all stronger. 

One of those friends, Joyce, has a particularly rough path as she mothers two adult sons with very significant special needs.  I truly am in awe of what she must handle on a “normal” day, much less on the kind of days she has had lately.  One of her sons had his wisdom teeth removed.  Then sickness hit the family, including Joyce and both her special sons.  Intestinal…respiratory…fevers…seizures…many, many sleepless nights. 

Her world is most certainly colored right now with the colors of poop and puke and puffy eyes, to be honest.  So on Sunday afternoon, I called her and I asked if she might want to escape for a bit…go somewhere and catch a breath of fresh air.  Change the colors a bit.

“Yes!” she said.  And a short time later, when I pulled into her driveway, she strode out to my van with a big smile on her face.  I was amazed, though knowing Joyce, I shouldn’t have been.

“Look at your smile!” I told her as she climbed in. 

“Well, I know what I want to do!” she happily declared.

I was expecting her to name a restaurant…or a park…or maybe the mall. 

“I would like to go to Dollar Tree,” she continued, “and get five vases.  Then I want to go buy some tulips and take them up to Oxford Villa.” 

And again, this woman amazed me.  Oxford Villa is a senior assisted living center where her mother used to live.  Joyce wanted to take some vases of flowers there for some of the residents who might not have anyone who loves them and brings them flowers.

Wow!! 

Joyce, I thought, needed some color in her life.  But instead, she wanted to GIVE some color to others!  I was so touched by her unselfishness!  So impacted by yet another lesson taught to me by this dear friend!

Instead of sipping a coke or coffee while eating a piece of dessert somewhere, I watched Joyce buy pretty colored vases and then examine the beautiful colors of tulips at another store.  We realized that Sunday was not the best day to deliver the flowers, though, so that job will be completed another day.  I hope I can help make that delivery!

Sometimes the best way to mix up our colors in this all-too-demanding life of parenting special needs children…or any other part of life that is draining you…is to look beyond yourself and see the needs of others.  To reach out and help carry their burden while taking your eyes off your own for awhile.

There was joy for me in watching goofy looking Aaron find just the right jar of peanuts.

There was joy for me in watching Joyce’s delight in finding just the right colorful vases for some unknown, needy seniors. 

Looking beyond ourselves causes us to see so many stunning colors that otherwise would have remained hidden. 

It’s so worth the effort, even with red cheeks or through tired eyes!

Thank you, Joyce, for your wonderful and colorful friendship!

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I’ll Be Your Friend, Part 2

I wanted to quickly share with you another sweet Aaron moment from today.

I wrote yesterday about Aaron’s sad day on Tuesday, but how that episode confirmed to him that he truly does have wonderful friends at his day group.  Here’s the link to that blog – I’ll Be Your Friend

He not only gave Natalie a card yesterday, but he also filled a baggie full of Cheez-Its for her, which he happily carried with him to Paradigm that morning.  I’m sure he was all smiles as he handed that baggie to Natalie. 

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But he also has another friend there, one who is on a very restricted diet.  Aaron has often felt sorry for her and has wished that he could give her some of the snacks that he takes to share with others. 

When Aaron took his baggie stuffed with Cheez-Its yesterday, he asked Barb if he could give some to his friend, H.  But Barb said that he couldn’t due to her strict diet.  But, Barb added, H. could probably have four or five of those crackers. 

And so today, before we left for his day group, this is what Aaron did.

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Five Cheez-Its, just for H. to enjoy all by herself.  To me, this is a picture of simple kindness.  I love that beneath all the complex layers of Aaron’s personality and of his autism, he has a heart that loves to give to others. 

Gary and I have talked occasionally over the years about how, when Aaron was young and we lived in Germany, we met with a professional.  This man talked to us about Aaron.  We were pretty offended by some of the things he said…things about how Aaron would probably never go to college, get a big job, yada yada yada. 

So O.K.  Aaron hasn’t been able to do many of the things that his peers have done.  But today, Aaron put five Cheez-Its in a little baggie for his friend, because she can only have five.  He didn’t find a cure for cancer…or put a man on Mars…or finish his fourth doctorate.

But he made his friend, H., very happy. 

And my mother’s heart is as proud of him as a mother’s heart can be. 

I’ll Be Your Friend

I pulled up to the curb in front of Aaron’s day group yesterday, a little early to pick him up at the end of his day.  Soon Aaron walked outside, heading toward the van, followed by Barb.  Barb is like Aaron’s second mom.  She is also a manager at Paradigm.  Sometimes Aaron wants Barb to come out to talk to me so that she can tell me something fun about Aaron’s day.  However, fun was not part of our conversation on this day.  I realized this right away as I looked at the tears on Aaron’s face when he sat down beside me in the van. 

“Mom!” Aaron choked out through his tears.  “Natalie got mad at me and called me…….”  And on and on he talked, his voice thick with emotion and his hands rubbing together in frustration. 

Aaron loves to give his money to his friends, especially to Natalie, and it’s sometimes a real problem.  Aaron isn’t supposed to give away his money, and Natalie isn’t supposed to ask him for money, and when they are found out, it can be touchy.  Both Aaron and Natalie have trouble controlling their emotions when things get stressful, which certainly happened yesterday.  Words spill out…tears are shed…accusations made… 

If you close your eyes, and if the voices were far younger, you would think that once again we were on the school playground trying to settle a spat between two kindergartners.  But these are two adults, who because of their special needs happen to, at times….many times….still operate as little children. 

Aaron was being very dramatic, which showed me how much his giving heart was hurting.  He had done wrong and tried to deny it.  Natalie had done wrong and got very mad at Aaron.  Both were hurt and upset.  But Aaron…his heart wants to give everything he has to his friends and when it all messes up, he feels betrayed and lonely and adrift.

“I don’t have any friends,” Aaron sadly declared as his voice broke with emotion.  “And I don’t want to come back tomorrow!!”  Just then, standing behind Barb, came the voice of Koren.  She’s Aaron’s friend, and though at times she’s hard to understand, I clearly understood this.

“I’m your friend, Aaron,” she said.  “I’ll give you a hug.”

So Barb stepped aside and Koren gave Aaron a dear, kind hug along with a few pats on his back.  It was just the sweetest thing!!

Aaron and I sorted through the story with Barb before finally pulling away from the curb.  But soon Aaron said he had left his billfold with Barb, so I quickly turned around and drove back to Paradigm.  I went inside, and when I came back out, there was Aaron leaning inside the van that held Natalie.  I was concerned!  But as I stepped closer, I heard Natalie say, “I’m still your friend, Aaron!” 

Aaron backed out of the van, his face a picture of relief…and Natalie’s face alight with a smile. 

Later Aaron, as he so often does, asked me if he could give Natalie a card the next day.  After saying he didn’t want to go to Paradigm the next day, I knew that wanting to take a card was a good sign that he was softening about going.  So I found a card for Aaron and he carefully wrote Natalie a note…a short note with a huge message.

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We all need a friend, don’t we?  One thing that amazes me at Aaron’s day group is to walk in and see the interactions of these special adults.  They love being and having friends, just as much as you and I do.  Life is so very hard for them, harder than I can even begin to imagine.  Sometimes it would be easy to feel sorry for them, sorry to the point of tears. 

But then I see them welcome Aaron when he walks in the door.  I see their smiles, their hugs, their concern for each other expressed in various ways.  I see Aaron welcomed and loved, even after having a hard day previously. 

His friends there are a picture of love and acceptance.  I don’t see jealousy or judgment or bullying.  Maybe those things happen at times.  But there, among all the varying special needs and all the medical conditions…from wheelchairs or braces…with halting speech or deaf ears…curled hands and bent bodies…I see so often the joy and the love of friendship. 

That scene has touched my heart more than I can express.  I would love to share pictures, but privacy issues won’t allow it.  So you must take my word for it, and try to imagine it yourself. 

Sometimes the most needy ones are the ones who give to each of us a picture of what we need the most. 

Genuine, unconditional friendship. 

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