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.

WP_20180806_09_40_26_Pro

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!!”

10452362_10152089437501895_2386796729627368274_n

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.

WP_20180801_19_12_12_Pro

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!

WP_20180802_18_16_58_Pro

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.

 

 

WP_20180803_11_50_24_Pro

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.

WP_20180803_16_47_24_Pro 1

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.

0803181950b

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.

WP_20180803_20_26_44_Pro_LI

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!

WP_20180804_09_32_44_Pro

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.

WP_20180804_14_17_16_Pro

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.

38909558_10215071355851437_4456147909561286656_o

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.

38828197_10215071352651357_704410976262291456_o

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!

38814403_10215071357891488_4048850603193925632_o

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

38839118_10215071370651807_5711353282933293056_o

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

38828198_10215071367131719_35976076295405568_o

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

38534417_10212008292738224_6899959742362288128_o

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.

38508299_10217068441761137_2489820510318231552_o

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

38821120_10215071372291848_220450410626809856_o

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?!

IMG950060

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.

WP_20180805_17_49_39_Pro

 

WP_20180806_09_11_05_Pro

 

WP_20180806_09_10_39_Pro

 

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.”

 

38851125_10215071370491803_773895764630831104_o

 

38471720_10217068437361027_9047836332625231872_o
WP_20180806_09_55_03_Pro

 

 

 

 

 

 

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. 

WP_20171030_10_25_08_Pro 1

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.

WP_20180612_10_10_10_Pro

 

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. 

 123951

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. 

WP_20180218_11_24_29_Pro

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.

WP_20180218_11_24_35_Pro

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

WP_20180218_11_24_49_Pro

“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!

untitled

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. 

WP_20180130_19_13_05_Pro (2)

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.

WP_20180201_09_39_55_Pro (2)

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.

WP_20180130_19_12_23_Pro (2)

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. 

WP_20171030_10_25_08_Pro 1

 

The Best Gifts Aren’t Wrapped!

Aaron had a birthday last week…his #33!!  My goodness, when did THAT happen?!  Of course, you know what that makes me…but since I’m the one choosing the subject of this blog, I choose not to choose to talk about ME, and MY age!!

Aaron unabashedly loves his birthday.  It’s one of the treasures of his way of thinking, that he doesn’t outgrow the pure joy of his special day.  Yet he also shies away from too much attention, too much hilarity, too much of anything that makes him feel like he must do something that he’s not quite sure how to do.  Yet this year, he was more relaxed with all the excitement and well wishes from others.  He showed it in several ways that were out of his norm, and it was wonderful to see. 

Yet the very best part of his birthday were the gifts.  Oh, I’m not talking about his presents and cards from family and friends…though they were great, and Aaron loved every single one. 

The absolute best part of this birthday, as the celebrating carried over for several days, was for me to sit back and watch the priceless gifts from some amazing people in his life.  I’ll try to let my pictures do most of the talking.  And speaking of talking, I did not get pictures of him talking to his sister, Andrea – or his Aunt Sandra.  But the smiles on his face and the conversations were very sweet indeed…even when he interrupted Andrea in the middle of her sentence to give me back the phone.  We got a great laugh out of that one!

His long and special friendship with Rosa continues as each year they make time to share their birthdays with each other at Chili’s.  Rosa’s mother, Louise, has become a dear friend of mine, as well.  They are a gift!

WP_20171105_16_12_41_Pro

WP_20171105_16_14_03_Pro

I think it was Rosa who suggested that the servers sing to Aaron.  And Aaron, who has never wanted that attention, agreed to it.  Their gift to Aaron was fun…our server there in the middle was wonderful…and look at the joy on Aaron’s face.

WP_20171105_16_55_12_Pro

WP_20171105_16_55_16_Pro

What can beat the gift of sharing birthday ice cream with your very special friend?

WP_20171105_16_56_37_Pro

On his actual birthday, Aaron agreed to take cupcakes to his day group.  He has NEVER wanted to do that!  I was so happy! 

We stopped at Sam’s on our way to Paradigm. Aaron, in his typical way, grabbed the attention of someone who works there and asked them where the cupcakes were.  That someone was one of the butchers, and as I tried to tell Aaron and the butcher that I knew where the cupcakes were, Aaron excitedly said to him, “TODAY is my birthday!!”  So this very kind young man told Aaron to meet him at the bakery down the aisle, and he gave Aaron two free cookies.  Look at the joy!

WP_20171108_10_08_57_Pro

There is the gift of the very patient therapy dog at Aaron’s day group.

WP_20171108_10_37_19_Pro

And the gift of our own Jackson that we took on a walk that afternoon.

WP_20171108_16_19_21_Pro 1

There was the look of total delight as he held his sister’s gift to him.

WP_20171108_17_39_41_Pro

And laughter as he later opened his brother’s Artsy Fartsy card…complete with fartsy sound effects.

WP_20171113_17_47_35_Pro

There was the gift of Barb, from Paradigm…and her daughter, Casady, coming for lasagna.

WP_20171109_20_28_52_Pro

And Aaron wanting Casady to help him open a gift.

WP_20171109_20_14_57_Pro

One of the most touching pictures on his birthday was this picture, sent to me by Barb…taken at Paradigm…of Aaron and his friend, Koren, with good old Piper.  To me, it sums up how impacting and touching are the friends in Aaron’s life. 

123951

How much our special one’s desire to have love! 

How many ways that love can be shown in their lives, even by perfect strangers! 

 Aaron may not always give a verbal thank you very easily, but the smiles on his face last week told it all. 

And that is a wonderful gift for me and Gary as well.

WP_20171109_20_29_43_Pro

 

The Beauty IN The Beast

My phone rang this morning, and there on the line was my very dear friend, Wendy.  I knew right away from the sound of her voice that something was wrong.  It was Elijah, Wendy said, her tone flat and exhausted.  He had run away again, on his bicycle, and had almost gotten on highway 24.  Somehow Wendy got him back, although we didn’t go into all the details of that.

Elijah, who turned 20 years old yesterday, suffers from the worst form of Epilepsy there is.  He has horrible seizures that often require oxygen, and sometimes require strong drugs to just stop the awful seizing.  Those drugs may help to save his life, but they also cause his life to be miserable after the seizures stop.  Life saving drugs like that are also life changing drugs because of the terrible behaviors that usually follow their use.

It’s an awful catch 22……a dreadful dilemma for Dan and Wendy, his loving parents.  And for Elijah……and the whole family…….they live between a rock and a very, very hard place.

Seizures cause changes in the brain.  These changes can contribute to behaviors that defy reason.  Drugs to control the seizures often have the very unwelcome side effect of causing even more behaviors.  Add to all this the sometimes necessary brain surgeries that children like Elijah have had…..multiple brain surgeries…..and the mix is indeed toxic when it comes to the brain being able to make the connections that you and I take for granted.

Gary and I face these same dilemmas with Aaron, trying to find the balance between seizure control and quality of life……both Aaron’s and ours.  Yet preventing or lessening seizures is of paramount importance.  It’s literally a life or death situation.

But so are behaviors, sometimes, when those behaviors can be as dangerous as Elijah’s.

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

No disease or syndrome of ANY kind is easy to bear.  But some are, sadly, easier to explain.

I do believe that explaining……let’s just say it……bad behaviors…..is tremendously embarrassing and frustrating to us parents who find ourselves having to do it over and over and over.

We get “the look.”

We get the questions, spoken or not.

We get “the talk” from teachers or our friend’s parents.

And sometimes we DON’T get…..the party invitations…..the friendships……the understanding…….the listening ear……the sympathy, that we so desperately need.  That our special children desperately need.

It was just last year that someone came up to my car window, and with great exasperation, said, “Can’t you DO something about Aaron?”

I looked at her in disbelief and said, “Do you have ANY idea what all we have been doing with Aaron for over 30 years?!”

Today I gave our Aaron a fun day after his four days in the hospital.  We went to see Beauty and the Beast.  Aaron wasn’t totally sure that this was prime movie material, but the thought of popcorn and time with Mom won him over.

As the movie progressed, I was pretty amazed at Aaron.  He was completely enraptured by this movie.  He was so still and quiet, except for the rubbing of his hands together that is just so Aaron.  He rubbed his hands softly, unless there was a very exciting piece of action.    He ate his popcorn but didn’t even want a second tub.

As I glanced at him during the movie, I saw him smiling.  His eyes were big and focused totally on what was taking place on the screen.  He loved the characters and the drama and most definitely the music.

But the character he loved the most was the Beast.  Aaron was registering in his mind every nuance of the Beast……his anger at the first, his softening as the movie progressed, his smiles, and his joy as he fell in love with Belle.

Aaron at one point simply said, “I love this movie!”

And when he said it again, a little later, Aaron laid his head on my shoulder.  It was pretty incredible.

Aaron wasn’t the only one, though, that was completely taken by parts of this love story.  I was, too, but for reasons that went far beyond Belle and The Beast.

I was looking at what can transpire when a Beast – or a person – is loved.  Is truly loved and valued for who they are under their rough exterior.

Wendy’s sad and tired words played through my mind as the music played on the big screen.  My own sometimes weary burden over our Aaron’s behaviors was heavy on my shoulders.

Elijah and Aaron are so much like the Beast in some ways.  They can evoke a measure of disbelief in how they act and in what they say or do.  They are at times unlikable, impossible to understand, and downright annoying.

images

But there is another side to them, and to so very many others with these same issues.  A side that blooms under love and understanding, as much as possible.  And when we, or others, can’t really understand we at least know deep down that many actions are beyond their control.

the beast

All of this was playing in my mind as the movie played today, with Aaron’s gently rubbing hands and big smile beside me.  And it’s why tears rolled down my cheeks as the words of this song, Something There, burned into my heart.

            There’s something sweet

            And almost kind.

            But he was mean and he was course and unrefined.

            And now he’s dear,

            And so I’m sure,

            I wonder why I didn’t see it there before.

            New and a bit alarming,

            Who’d have ever thought that this could be?

            True that he’s no Prince Charming,

            But there’s something in him that I simply didn’t see.

Aaron and Elijah, and many like them, have so much more in them than we often see.  They are wonderful and funny and smart and have so much to offer to the world……and the people…..around them.

They need what the Beast needed.  They need the “something there that wasn’t there before,” as the Beast’s friends sang at the end of this song.

That “something” is love.  Some days the love is harder in coming than on other days, but even when our boys aren’t being Prince Charmings, they still deserve as much love and understanding as possible.

Belle and Beast

Aaron and Elijah have lots more awareness than we realize.  Aaron has always known who is real and who is not when it comes to how they react to him and interact with him.

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

He knows very well that the Beast loved Belle for who she was as a person.  That’s real love.

And it’s the love our special kids need……the love for who they are, deep under all the medicines and conditions and labels and diagnoses.

I’ll be the first to say that it’s easier to write the words than it is on some days to live it out in real life.

But our kids will grow under unconditional love, some days more than others.

And all of us giving them real love…..not fake love…..will grow even more.

There truly is beauty in the beast, if we just love and look.

WP_20170512_16_26_43_Pro