Aaron responds to love, not to skin color.
We could all learn from Aaron.
How I wish we would!
Aaron responds to love, not to skin color.
We could all learn from Aaron.
How I wish we would!
For the past few weeks I’ve felt like I live in a snow globe. I’m a figure that’s not fastened down, so when the globe is shaken I just fly all around with the snow. Crazy, to say the least!
Gary and I knew that this was going to happen:
Thankfully his foot surgery was planned and on our calendars many weeks ago. We had time to prepare, even throwing in some minor things like having two bedrooms remodeled. You know how that is. Emptying the rooms of everything; deciding on what supplies to purchase; purchasing supplies; going through drawers and shelves and making multiple donation trips to Goodwill; the remodel itself (great job, Distinctive Designs!!); cleaning; putting everything back in the rooms; and heavy furniture up the stairs or down the stairs (thank you to our son, Andrew, home for Thanksgiving!).
Then there was decorating and preparing for Christmas with all the shopping and wrapping and mailing and cards and cooking yet to do.
Oh, and let’s throw in cleaning our big storage room two days before surgery! Why not??!!
In the midst of it all, there is Aaron. Aaron…trying so hard to maintain his normal.
Aaron’s normal is very vital to him. His normal is as vital to him as breathing or eating. Normal gives him stability and predictability, which he needs to maintain his balance.
Gary and I can roll with the flow, stressful as that flow may sometimes be. Aaron…not so much. When his normal flow of life is redirected…shaken like the snow globe…Aaron most often will react instead of handling the change. Then whatever is causing his life change, as he sees it, becomes the enemy.
The enemy may be an event. That’s why holidays, parties, trips, or other out-of-the-norm happenings can rock his world. Aaron’s world is what he makes it. His world is set and settled in his brain, everything in its place. His days flow with an established pattern. Can we all spell “ROUTINE?!”
The enemy may also be a person. Any person who disrupts his pattern of life or his way of doing life becomes a huge problem to him. Just ask his siblings about our Christmas family time every year. We all know to expect at least one “Christmas Meltdown” every year. The meltdown often involves some aspect of our family Christmas Eve Bingo game, which combines a party atmosphere with a lot of crazy thrown in from the annoying people who are on his turf and messing up his routine.
Autism at it’s finest, let me tell you!
When Gary and I arrived home the day of his surgery, Aaron was so very happy to see us. I saw him scan over Gary’s huge wrapping with his ever-observant eyes, but Aaron never asked how the surgery went or how Gary was feeling.
Instead, Aaron talked up a storm as we got Gary settled in bed. He ran up to his bedroom, returning with a soft blanket of his that he wanted Gary to use. He ran outside in the dark and brought in our trashcans that were at the end of the driveway. He kept looking for ways to help and was just SO happy to have us home. I’m not sure how much of that happiness rested on the fact that his dad was all right or on the fact that we were home, at last, and now life could be back to normal.
Dad was in the guest bedroom. Mom had to make trips down to Dillon’s for meds and food that sounded good to Dad and drinks to settle his stomach. Dad wasn’t talking much and Mom was distracted. People were calling. Or coming to the house.
The morning after surgery, Aaron was getting edgy. We knew it. And Gary, bless his heart…in the shape he was in…managed to ask Aaron about his game he was playing. Aaron was off and running then! Talk, talk, talk!! Talk about what he loved and what he understood and what mattered to him.
Honestly, Dad’s foot and leg all propped up on the living room couch didn’t matter to Aaron at that point. How Dad slept didn’t matter. Dad’s possible pain didn’t matter.
It seems heartless to us, but we know Aaron. We know how autism is often defined by a narcissistic way of viewing the world.
We had some storms that first week. It got rough. My reactions weren’t always kind and loving toward Aaron.
Then after the snow would settle in our upside-down snow globe world, Aaron would look at us and immediately launch into talk of aliens and outer space and his latest movie and anything…ANYTHING…but real life and feelings and concern for us. Then his anger would erupt if he sensed our lack of interest in what he was saying.
Just so exhausting.
One night after going around and around, Aaron regrouped quickly and stood by Gary in the living room talking about what show he was watching or game he was playing. This was Aaron’s happy place with his captive audience.
This past week, our second week post-surgery, Aaron came down with the crud bug. Fever, cough, sore throat, aching all over. A doctor visit, some meds, and he is better. But again, a sick Aaron was a touchy Aaron.
Until he thought of Christmas lights.
“Mom?” he asked on evening. “Can we go look at the lights on the big white house?”
It wasn’t necessarily what I had time or interest in at that moment, but I saw the hope on his face and so off we went. We saw the lights and then drove on to look at some other lights close by in several neighborhoods.
A couple nights later, after our neighbor mentioned a near neighborhood that was all decked out in lights, Aaron and I went out again. House after house was glowing and flashing and bright and fun. Aaron was mesmerized, leaning forward in his seat and very still, with a smile on his face.
“I LOVE this place!!” he finally exclaimed.
It warmed my heart so much for him to express such joy.
It warmed my heart to be the one who showed him this place he loved.
I’ll admit that sometimes I don’t love this place where God has us. Life with Aaron can be very tiring. He requires or demands things from us that we at times have no energy or interest in giving.
This place isn’t always bright and pretty and rewarding and fun. Sometimes we wonder why we’re here and what we’re doing.
But this place is where God has put us.
Aaron is God’s gift to us.
Sometimes we don’t feel that sentiment. Gary and I get weary…lonely…at the end of ourselves.
I’m sure the man Jesus…God’s Son…felt all that and more, thousands of times over, as He walked this sad earth.
And because Jesus walked with us, He also understands our weaknesses and our human thoughts. He is here with us to give us His grace and enable us to do the same with Aaron.
Aaron may not always love this place, either. When his life is askew and he is miserable, loving this place is the last thing on his mind.
But may he know, when the snow is settled and the storm is over, that HE is loved.
Loved by God, as are we…and loved by his parents.
May this place, where we are at the moment, be a place of love when all is said and done.
And may your place, dear one…hard as it may be…be a place filled with God’s love for you and through you.
Bright like the lights of this beautiful season!
Tears stung my eyes one night last week as I listened to Aaron suddenly tell me about how much he loved his friend, N. Oh, he’s talked about N for a long time. Sometimes she’s his good friend…sometimes she’s his antagonist. She is a fellow client at Paradigm, Aaron’s day program, and they have known each other for years.
Aaron’s developmental delays due to his autism and seizures have prohibited him from having some of the normal joys of life that our other two children have enjoyed. He’s not able to drive. Holding down a job would be very difficult for him. Responsibilities that they have assumed as they have become independent have not been possible for Aaron.
Aaron has always had a pretty simple view of life. He’s never seemed to really mind not moving on in life as Andrea and Andrew have. It’s actually a blessing that he doesn’t have those desires. He’s very happy to live as he does.
Yet when Andrea and Kyle started dating, we saw another side of Aaron beginning to show. It was a combination of jealousy over Kyle’s relationship with Andrea, whom he dearly loves, and resentment. But was there resentment over Kyle taking Andrea away? Or resentment over Andrea and Kyle having something that he did not have?
Two years ago, Aaron went with Gary and me to see Andrea in Houston. This trip had the different dynamic of Kyle now being in the family picture. He and Andrea were not engaged yet, but we all knew that they would be someday.
On one hot Texas afternoon, Kyle was showing us around Galveston. We walked in the historic district, going into quaint shops and enjoying the sights before heading to dinner and the beach.
Aaron, however, was in a very foul mood. And when Aaron is in a foul mood, no one is in a good mood.
Aaron didn’t want ice cream. Aaron didn’t want candy.
Aaron didn’t want to look at old architecture.
Aaron didn’t want to have his picture taken.
It was miserable. WE were miserable! He kept saying, “I just want to go out to eat and go to that lake!” A really big lake, by the way.
In the parking garage, as we walked to our car, Aaron finally had enough. With pent-up anger, as I tried to walk with him and cheer him up, he blurted out: “Well, Andrea and Kyle are going to get married!! Why can’t I get married??!!”
There it was…a glimpse into Aaron’s feelings and into his heart. And there I was, with no words to console him. What could I even have said to make him feel better?
In the following months, Aaron brought up the girlfriend and marriage subject more and more often. He was putting two and two together, and there were some uncomfortable moments.
“Mom,” he said one day, “I want a girlfriend.”
“Oh, Aaron,” I answered. “I understand that, but you don’t really need a girlfriend. Just be happy to be friends.”
“But you were a girlfriend to Dad, right?” he asked.
Oh dear! Busted!!
“Well, yes, I was,” I uncomfortably answered.
“What was it like?” he continued.
“Ummmm,” I struggled, “it was special.”
“I want to be special,” he said.
My heart!! What does a parent do with this side of their special-needs child?! No doctor or medicine or therapy can fill the normal void of my son wanting to be loved in the way that I had just described as being special!
As Andrea and Kyle became engaged and we planned their wedding, Aaron was resentful. He didn’t even try to hide it. And on the day that we told him about their engagement, he went outside and did his thing in the mulch, alone, as he crumbled mulch and I watched him out the window…my heart crumbling, as well.
Gary and I have tried to be honest with him as he’s asked more than once about why he can’t get married. I mean, could he marry one day? But then we’re reminded of the very answers we give to Aaron when he brings up the subject.
We tell him he needs a job…that he would need to live somewhere else with his wife…be able to pay his bills…that there would be her medical issues and his medical issues…
And we feel mean to tell him these things.
Yet that IS the reality of Aaron’s life. Reality can’t be sugar coated in an effort to make Aaron feel better.
Or in an effort to make us feel better, as well. Letting Aaron marry would bring to our doorstep a host of issues that we do not even want to think about.
On that night last week, after Aaron and I had watched a rather emotional episode of the series we’re watching, instead of hurrying out of his chair he instead started talking.
“Mom,” he began. “I love N, and she says she loves me. When I come in Paradigm, she says hi to me. She wants me to sit beside her, and she holds my hand. That makes me happy. It makes me feel good.”
The sincerity in his voice and his sudden cascade of words stopped me from moving off the couch. His rushing words and his emotion also stopped me from brushing off what he was saying. Instead, I sat there and looked at him as he talked. He continued.
“Ever since first grade,” he said, “I wanted a girlfriend. No one ever wanted to be my girlfriend until N.”
It was hard not to smile, and also hard not to cry. In fact, my eyes did fill with tears, which Aaron really dislikes.
“Are you crying?!” he asked. But when I told him I was, a little, he didn’t even get upset. He just kept talking about N…about how he wanted her to be his girlfriend…and how no one else wanted to be her friend.
His relationship with N is complicated. She is complicated and Aaron is complicated, and there are many issues. N uses Aaron, trying to take his money and his food and all his time. She gets angry, and sometimes makes Aaron cry. Yet Aaron defends her most of the time, particularly when she talks him into giving her his money.
Aaron reminded me of the day that I had recently called Barb about N taking some of his money. Aaron gets very angry when I do that. He said the most amazing thing that night.
“Mom, when you called Barb about N taking my money, you messed up the boyfriend/girlfriend option!”
Where on earth did he come up with that?! And how on earth did I not break down laughing?!
A few weeks ago, as I drove Aaron to Paradigm, this is what he said:
“Mom, N asked me to marry her. On accident, I put it too far and I said yes!”
Again, I was laughing inside but knew that on the outside Aaron needed my understanding. Thankfully, his “putting it too far” did not end up in a commitment of any kind. But sometimes, in his heart, I know he wants to have this taste of a normal life even though he has no idea at all about what it would mean.
But Gary and I know what it would mean, and we know it can’t happen. It makes me a little sadder for Aaron when he does talk about it. Yet I think of the reality of what would happen if we said yes to this grand idea, and I’m jerked back to THAT reality and know that it can’t be a part of Aaron’s life.
God continues to give us grace and to soothe my heart when I hurt for Aaron. And I’m very thankful that He gives us the strength to not “put it too far,” and say yes!!
I’m thankful, too, that God isn’t too far from us in any of this. He knows and understands, and His promise to be near the brokenhearted is always true!
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.
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.
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.
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.
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.
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!”
Last night, I peeked into Aaron’s room and saw this:
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.
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…
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!
Then yesterday, she sent a picture of their first onion harvest from their backyard garden. And again, we were happy.
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.
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.
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!!”
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.
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!
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.
Gary 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.
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.
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.
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.
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!
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.
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.
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.
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!
Sunday was Heritage Sunday for the church, as well as celebration day for John and Jeanie, and their family.
What a very touching service, listening to so many testimonies about how John and Jeanie have cared for and shepherded this dear church.
Jan’s girls, two sets of twins, sang beautifully.
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.
There was dinner on the grounds after the service. No one puts on a spread like church members, especially in the south!
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?!
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.
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.”
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.
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.
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!
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.
What can beat the gift of sharing birthday ice cream with your very special friend?
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!
There is the gift of the very patient therapy dog at Aaron’s day group.
And the gift of our own Jackson that we took on a walk that afternoon.
There was the look of total delight as he held his sister’s gift to him.
And laughter as he later opened his brother’s Artsy Fartsy card…complete with fartsy sound effects.
There was the gift of Barb, from Paradigm…and her daughter, Casady, coming for lasagna.
And Aaron wanting Casady to help him open a gift.
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.
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.
Sometimes Aaron talks in his sleep. He has conversations that are so clear it’s as if he’s awake, talking to me or Gary. I hear him because I keep a baby monitor with me when Aaron is asleep, to listen for seizures. One recent morning, I heard this “sleep talking” from Aaron, and I quickly wrote it down so I wouldn’t forget.
“Mom,” he said. “In the movie theater, when I was laughing, I couldn’t see myself laughing. I want to see myself laughing…..again.”
I have no idea what he may have been dreaming that prompted this little conversation. But I sure have been thinking about it, wondering if deep in Aaron’s mind there is more meaning to this than I…..or Aaron…..knows.
Aaron goes through highs and lows emotionally as well as physically. Lately, we’ve been having more lows. He doesn’t want to go to his day group, Paradigm. Then he goes, and is at times verbal and physical with staff and clients alike. Sometimes he’s trying to tease and other times he is genuinely angry, but both times he can be hurtful. He does so much better one-on-one, and most times he doesn’t participate in the group activities. It’s just sometimes one thing after another during these low times.
Aaron is unfiltered. Sometimes it’s funny…..sometimes it’s not. He can tell you to shut up one minute, and the next minute be wanting to tell you something funny……and then wondering why you’re not laughing. He’s so complex!!! So frustrating!!! And so endearing and heart breaking, too.
He knows when he’s done something wrong, but he just can’t seem to stop himself from doing it first, before the knowing kicks in – in time to stop the doing. Make sense? That’s our world.
So when he said that he wants to see himself laughing….again….I had to wonder if he is deep down genuinely wanting to be happier, like he used to be more than he is now, and hopefully will be again.
When I pick Aaron up from Paradigm, I never know if I’m going to see happy Aaron:
Or pensive Aaron:
One night last week, I was so tired and so done with some ways Aaron was acting that I was the one who lost control. I laid down the law with him, but I did it through gritted teeth and a pointing finger. Yes, I was that tired and upset. So the next morning, Aaron stood by me and said, “Mom, I’m telling Barb that you grind your teeth!!”
Barb is his second mother – his favorite Paradigm person.
“I don’t grind my teeth,” I replied to Aaron.
“Yes you do!!” he asserted forcefully. “Last night you went like this!!” And he clamped his teeth together and bared his lips, much like a rabid dog.
Oh dear. Is that what I looked like to Aaron? Probably.
But more than how he said I looked, his comment was a glimpse into how it hurt him for me to respond to him the way I did.
I’m so thankful for every new day, and for God’s new mercies that He shows me every new day. Those are the same mercies I must extend to Aaron, hard as it sometimes is.
You know what’s really hard? It’s really hard to remember who has the special needs here. Sometimes Aaron is so high functioning that it’s easy to lose sight of the fact that his brain does not operate like mine. And also easy to lose sight of the reality that he deeply feels his struggles more than we can know.
A day or two after I gritted my teeth with Aaron, I noticed that our house was getting a little dark. The sun had been shining so brightly, but I looked outside to see a dark storm cloud forming right over our house. Then I heard thunder, and next came a few large raindrops. Nothing even showed on the radar at this point, but I sure saw and heard our little storm that soon moved on east of us and became a big storm in Wichita.
And I thought of what a picture that is of life with Aaron. He can be our personal storm, loud and disruptive, and then move on to Paradigm to do more of the same there.
But on this day of our storm cloud, Barb had called to say that Aaron had a bad day. She said that her daughter, who has Barb’s kind heart, wanted to take Aaron to Wal-Mart. I agreed, and then when I picked him up later he was so very happy. He held a Dr. Pepper, and was full of laughter and talk about their little adventure. What a difference Casady made in Aaron’s outlook with that one simple kindness! The rain had ended and the sun was shining, both literally and in Aaron’s heart.
And this week, Aaron hurt his friend’s arm by being too rough as they were goofing off or as he greeted her…..I don’t know which. He broke his glasses in anger on the same day. Another storm cloud.
He didn’t go to Paradigm the next day. I took him to Carlos O’Kelly’s for lunch. It’s one of his very favorite places. We had a wonderful server who has two special needs boys. She was so good with Aaron, and I relaxed. I just watched Aaron eating his food. He loved every single bite. He asked to go to Best Buy. I’ve been saying no to that, but I agreed and off we went…..with Aaron happily pocketing two toothpicks to add to his toothpick collection.
He strolled through Best Buy, looking at this and that, and not asking to buy anything. He just wanted to look. It felt good to make him happy in such a simple way……lunch and Best Buy.
He’s so dependent on us for these times out…..and so dependent on us for his happiness. Despite our tiredness…..our frustrations…..our ineptness…..our failures…..he needs us.
I want to see Aaron growing, learning, controlling himself, being responsible. Like any parent, right? It’s just a little more difficult for those of us with these issues like we have with Aaron.
But I must agree with Aaron. Maybe on most days, more than anything, I want to see Aaron laughing again…..laughing from his heart.
And I want AARON to see himself laughing again, happy and having fun, knowing that he is loved. Loved by his Paradigm staff……loved by me and Gary…..loved by friends and family.
And most of all, created and loved by God.
While she was in grad school, we loved talking to our daughter about many of the things she was learning about science…..about genetics, in particular. The “hidden to our eyes” world of genetics was opening up to her, and somewhat to us, as she learned more and more about the complex codes that make us….us. We were especially happy to hear her say, more than once, that what she was learning about our DNA pointed her to God and to scripture. Truly we are “fearfully and wonderfully made!” (Psalm 139:14)
Made. Not evolved, but made. Made by our Creator. Each of us designed, uniquely designed, by His very creative hand.
Now working as a geneticist, Andrea designed and now supervises a lab in Texas. Did you know that each of us processes medicines based on our DNA? How my body responds to an aspirin is different from how your body responds to an aspirin. Our response is all tied into that unique strand of DNA that we each possess. So a geneticist can take your sample sent from a doctor and from that sample can determine how your body will respond to various medicines.
It’s called Pharmacogenetics. The definition is: the branch of pharmacology concerned with the effect of genetic factors on reactions to drugs.
It’s pretty amazing. Because of this testing, a geneticist can help a doctor determine the best drug for you…..special you…..to take for certain conditions. And it’s all because God made you….you. How exciting that He is letting us have a peak, through DNA and genetics, into just how very special YOU are!
This is the testing that Andrea does in her lab. They are also doing Cancer Pharmacogenomics, meaning that chemo can be personalized for each patient based on their DNA. Knowing that your body will process certain chemo drugs better than other drugs is a huge step in better cancer treatments and cures.
Amazing stuff! Complex stuff!
“Fearfully and wonderfully made!”
Said another way, we are awesomely and wonderfully made!
None of this was on my mind as I walked out into our back yard one recent evening. There, out on the lawn, a gaggle of geese was parading past. They were fun to watch, and funnier to listen to as they squawked when they realized my presence. Finally one of them took to the air, and the others nervously followed.
The next day, while on pooper scooper duty before Gary mowed the yard, I saw there in the grass a long goose feather. I picked it up so I could look at it more closely, and to also show it to Aaron.
When I examined it later, I was amazed at how tight each little feather strand was. Nothing could easily break through that strong feather…..and a goose has hundreds upon hundreds of similar feathers, every one made specifically for each part of his body.
The fact I loved the most, though, was to see what happened when I put water on this feather. I loved showing this to Aaron! The feather was waterproof, which is no surprise, but it was so fascinating to watch. The water just formed into little balls and rolled right off the feather, no matter how much water was poured onto it.
It was fun pointing out to Aaron that God made this goose feather to be just right for a goose. Our Great Dane doesn’t need goose feathers. But a goose sure needs goose feathers! A goose puts his feathers to very good use as insulation against water, and also for protection from the cold.
A goose is also “fearfully and wonderfully made!”
I randomly laid our goose feather on the server near our kitchen. I saw it this morning, laying there beside this picture that Andrea gave me one year for Christmas.
We have Cow Patty jokes galore in our family. This picture is the sequencing of the Mitochondrial DNA of a North American Bovine.
HaHa! A cow’s DNA!
But WOW!! How complex it is!
So my simple, though really complex, goose feather…..and the DNA sequencing of a cow……and my very own individualized DNA…..are all reminders of what a very capable God we have.
And also they are reminders that each of us is created by God. Every skin color, every hair texture, every eye shape…..all are designed by the God of the universe.
If anyone hates a person that God has created, then that person hates God Himself. That person also doesn’t know God. Period.
Let’s focus on knowing and following this great and good God. And loving each other as the very special people that He designed us to be.
From genetics to goose feathers, it all points us back to God.