Artichokes and Pomegranates

Whenever Aaron goes somewhere with Gary or me, it’s an adventure for him.  He’s observant – and then he excitedly likes to talk about everything that he observes.  Everything – really.  He’ll even mention that someone has orange hair, lots of wrinkles, a big nose, a weird voice – and then say, “I’m not making fun, Mom!  But they did have……………”   He notices what billboards are new or that an office building has been repainted a different color or design.  And talk and talk and talk about his findings.

When he and I went to his doctor appointment last week the experience was just that………..one fun discovery after another for Aaron.  The visit to the doctor was just the parentheses for him.  The real purpose of the trip for him was the promise of a visit to Sam’s for him to point out some possible Christmas gift ideas among the DVDs there – and lunch, of course. 

When we arrived at the Epilepsy Center, Aaron marched purposefully up the hall to the elevator and pushed the “up” button.  When the door opened, he went right to the back corner of the elevator and with delight said, “Mom!  Stand in the corner and feel how it feels when the elevator goes up!”  And we repeated that scene when we left and the elevator was going down.  I’m not sure how he discovered that the corners felt different, but somehow he did! 

At the check-in desk, there’s always a pen for him to try to put in his pocket.  I’ve learned to watch him and so he rarely gets by with that.  His drawer at home is stuffed with his pocketed pens from all over town!  And in the exam room there is a blood pressure cuff for him to try to finger, or the light that goes in his ears, or plastic gloves to try to put on.  Aaron!  LEAVE EVERYTHING ALONE!!  And he talks and talks some more as the doctor visit takes place in his random Aaron way.

After we left there, Aaron sat on a chair in the hall while I went to the restroom.  I told him to stay right there and not to get up.  He did just that – at least I think he did.  I didn’t hear any sirens going off so we were good.  I told him that before Sam’s I wanted to stop right down the street from the hospital at a wonderful store here called the Nifty Nut House.  This store has candy and nuts of every variety imaginable!  It was so crowded with holiday shoppers on this day, but Aaron was fairly patient as he waited for us to leave so we could go to Sam’s.  And with all the fun candy there, Aaron asked if he could have some Twizzlers or Skittles.  Really, Aaron?  We can get those at Sam’s – don’t you want something unusual?!  Then he spied the Nutcracker, which he loves, and he let me snap this fun picture of him:

Off to Sam’s we went and Aaron was in his element for sure!  Pizza and a cinnamon bread stick made him happy before we headed out to look at DVDs.  That done, we walked over to one of Aaron’s very favorite parts of the grocery store – the produce section.  He loves finding unusual veggies or fruits.  I remember how years ago he was very fascinated with artichokes.  I would be looking at something else and hear Aaron yell, “Mom!! What’s this?!”  He would nearly run as he brought it to me, so excited at this unusual “thing” that turned out to be an artichoke.  Finally one day we bought one, took it home, and cooked it.  He was thrilled to eat it and to experience this unusual food.  He still talks about our artichoke.

At Sam’s it was a pomegranate.  “Mom!!  What’s this?!”  

It’s a pomegranate, Aaron.

“Oh,” he said, “so it’s an apple?” 

No, Aaron, it a pomegranate!  So we discussed what little I knew about pomegranates and I told him to research it later. 

He also decided to bang on the watermelons.  No, Aaron, the watermelons are not to be used as drums.

And then it was, “Mom!  What are these?”  Whereupon I turned and saw him holding up a container of blackberries.  When I told him what they were, he said, “Oh, I thought they were wrinkled blueberries!”  Hmmm………let me look at those again!  I do love his fresh take on things!

So it went.  On the way home, he told me again how on his way home the day before he thought he saw an owl sitting on the telephone wire.  I figured out that it was probably a hawk he saw, so we discussed hawks – why they sit on the wires, what they eat, where they live – and Aaron said, “So do hawks come out at 4:00 or 4:30?”  Ah, so much to think about.

Time with Aaron is always interesting and sometimes a whirlwind as I try to keep up with his thinking, or stop him before he does the thing that I know he’ll try, or say the thing that’s on his mind no matter who hears him, etc.  At supper that night, Aaron was telling Gary the details of our day. 

“Dad, after we went to the doctor Mom wanted to go to this place called the Nut House!”  HaHa!  Actually, that’s not too far from the truth sometimes!

Cemetery Cars

As we dealt with the deaths of three of our parents in 14 months, we also observed how Aaron would process this sad reality.  Never did we see a tear.  The thought of Aaron crying over any one’s death, even someone he loves, just doesn’t fit the Aaron that we know.  Instead he will seem emotionally flat, unaffected except for perhaps a flicker of surprise that crosses his face. 

However, as always, Aaron is processing this information.  He needs to file it away in his brain and make it a part of his factual world.  He does NOT need to express outward emotion the way that we do.  In fact, our emotion baffles him.  It makes him uneasy and probably feel very insecure.  What does he do with a crying mother?  He is totally unprepared to handle that issue, and so he withdraws from it and doesn’t show any concern or offer any comfort. 

Yet Aaron does, in his own way, show that he is sad and that he cares.  He demonstrates this, as usual, by doing what Aaron does best – talking!  At the most random moments he will mention something about Granny or Granddaddy or Grandpa or Mama Rachel, etc.  Perhaps it’s to talk about a special memory, or a physical feature of one of them, or a gift they had given him at some point.  The most endearing comment that he makes, though, is when he says, “I miss Granny.” –  or one of the other grandparents.  He’ll want to know if we miss them, too.  We know that he cares and we must allow him to show it in his own way, not in our way. 

We often pass a large, beautiful cemetery a few miles from our house.  Aaron will talk about the big cross, the flags, the headstones, or why a covering is up as a funeral is being prepared.  The funeral processions that he sees as he’s driving around with his group particularly intrigue him.  Just the other day he said, “Mom, today we saw some of those cemetery cars.  Why do we have to stop when they come by?  I don’t know that person!!”  There again, factual Aaron doesn’t display care or concern over the grieving family.  I’m able to use that as an opportunity to discuss how important and meaningful it is to show respect for any grieving family and for the loved one they lost.  I’m not sure that concept made much sense to Aaron, though.  I know him well and I’m pretty confident that he’s pondering why on earth he should show respect to someone he doesn’t even know! 

One day we were driving to an appointment.  Aaron often points out things to me that he sees as he rides around with his day group.  On this day as Aaron and I were riding along, he bent over and was peering intently out the front windshield of the van.  I wondered what he saw.  Then suddenly he said, “There!!  Up there, Mom!”   I asked him what was up there and he replied, “See those flowers and that cross?  Someone is buried up there!!”  

Oh my.  I told him that this site was a memorial set up by the family of someone who had been killed there in a car accident.  As we talked I realized that Aaron had seen other memorials such as this and thought that all of them were graves.  He wondered why people were randomly buried all over town!  Flowers and crosses mean graves, right?  I was glad that we cleared that up! 

And ever aware of the way that Aaron connects the dots in his world in the way that makes sense to him. 

Dealing With Death

Part of Aaron’s inability to relate to our world socially has inevitably involved the issue of death.  I’m thinking of that now because it was three years ago today that my dad died after his valiant fight against cancer.  Dad was diagnosed with lung cancer in 2000, and after his treatments we were very hopeful that he was going to be fine.  However, in November of 2004 some routine blood work raised alarms and he soon found out that the cancer had spread to his liver.  I’ll never forget that phone call and the ensuing days of sorrow and pain for our family – but also God’s amazing presence and peace.  That will be for another story.

My family all decided to rearrange any Christmas plans we had and to all go home to be with Mom and Dad.  We weren’t sure if there would be another Christmas, or another year, to see my dad.  Gary and I, and our three children, all drove from Kansas to West Virginia to join my four siblings and their families for this special time.  It really was a sweet time together.  None of us knew that God would give Dad four more years to be with us.  What a gift! 

I’ll never forget the early morning that we left Mom and Dad’s to drive back to Kansas.  It was such an emotional goodbye for all of us.  We stood in their living room in a circle, holding hands, and prayed.  Except for Aaron.  All this emotion and all the tears as we openly wept was just too much for Aaron.  He was confused and bothered by it – overwhelmed and unsure of how to express himself.  And so he sat in a chair near us, and softly in a monotone voice he was saying, “Cry-babies.  Cry-babies.  Cry-babies.  Cry-babies.”   Over and over.  It was actually pretty funny and broke some of the tension for us.  Yet we knew not to laugh openly at Aaron because this was evidence that he was also struggling with all of the burden of possible death.  He just couldn’t express himself like we could. 

That scene also showed us that we couldn’t bring Aaron with us on our trips home over the next few years, and certainly not have him involved in hospital visits or funerals.  He would be overloaded emotionally, and his actions and comments would be offensive to those who didn’t understand.  Little did we know what the next few years would hold.  In 2007, Gary’s mother literally overnight went to the hospital and never returned home.  She passed away in October of that year.  The next year, also in October, Gary’s dad passed away suddenly.  My dad died two months after that.  During that time we made several trips home to visit and to help, but we always left Aaron in Kansas under the care of friends. 

Two years ago we decided to go back east for a visit with both of our families – and this time to take Aaron with us!  When I told Aaron that we were going to make a trip home, he said, “So who died?”  We had been so consumed with the death of our parents that he assumed someone else must have died!  Aaron was delighted when we told him that no one had died, and that he was going with us on this trip!  He had such a wonderful time getting to see everyone.  We took him with us this year, too, as you know from my blog. 

I have other stories to share in another post about Aaron’s handling of this issue of death, but let me share one more now.  My niece, Ruth, was diagnosed with a rare form of cancer at the time my dad was dying.  Dad would pray for Ruth in his soft, weak voice.  His heart broke for his granddaughter that he loved so much.  It’s a long story, but God has healed Ruth and even blessed her and Robert with something the doctors told them would never happen – a baby!!  Little Raphael was born this past October.  One night after Ruth found out that she was pregnant, she and I were communicating on the computer while Aaron and I played Skip-Bo.  Ruth and I were both crying as we talked about how happy Granddaddy would be that she was going to have another baby. 

I couldn’t hide from Aaron the fact that tears were rolling down my cheeks.  He looked up from his cards and just stared at me – and stared some more.  Then he said, “WHAT?”   He waited a couple seconds and repeated it – “WHAT?”  It really troubled him to see me crying.  So I told him, “Well, Aaron, Ruth and I are talking about Granddaddy and it makes us cry.” 

And Aaron said, “Well, why are you crying for Granddaddy?!  He’s already DEAD!” 

Oh, Aaron.  To some that may sound heartless, but for Aaron things are pretty well cut and dried………black and white.  Dad would have laughed at Aaron’s response and seen the sense in it.  And really, doesn’t his statement make sense?  Even when I tried to explain that we were crying more for us and how much we miss Granddaddy, our tears should never be for Dad.  He’s far happier than we are!  And we know that someday we’ll see him again and enjoy all of eternity in heaven together………….where there will be no more Cry-babies!!!!!
 

The Epilepsy Center

Yesterday Aaron had an appointment at the Epilepsy Center for his regular check-up.  Thankfully, his nocturnal seizures have lessened over the past few months – or we’re not hearing them as we sleep during the night.  We have a baby monitor on our nightstand but I’m convinced that we don’t always wake up during his seizures.  The Epilepsy Center here in Wichita has been a tremendous blessing to our family, not only to Aaron.  Keith Trevolt, the Nurse Practitioner there, has taken such good care of Aaron over the years – even making a house call one Thanksgiving.  I wrote about that in an earlier blog when telling Aaron’s story.  Keith is a dedicated follower of Christ and everything he does is based on his relationship to Him.  We share about the Lord at every visit and it’s such a blessing. 

Keith is very patient with Aaron and listens to Aaron as he talks about anything and everything.  Aaron tries to cover as many subjects as possible while he has a captive audience.  Keith and I often have to talk over Aaron.  Aaron sits on the exam table and rubs his hands together in excitement as he tells Keith about his latest movie, or game, or Paradigm experience, or a delicious overeating experience.  Like yesterday when Aaron told Keith, “I was with Paradigm at the east mall and I went to Dairy Queen.  I bought that new Chocolate Blast [or whatever it’s called] and after I ate it I had problems.”  When Aaron said he had problems after eating something he means…………intestinal issues……………medically speaking – diarrhea……………..      “Mom, my stomach is making funny noises.  Do you think I’m sick?”  No, Aaron, you ate that triple super duper chocolate mess so now you’re paying for it.  And so Aaron shared that with Keith, unembarrassed and factual, rubbing his hands together happily at this new story that he’s sure Keith really wants to hear. 

Keith acts as if he has all the time in the world.  Sometimes it’s so much fun visiting that I tend to forget the reason that we’re there.  Then we get back to talking around and over Aaron about his seizures and the best course of action to take from this point. 

The Epilepsy Center is without an Epileptologist right now and has been for some time.  We pray that one is hired soon and that this awesome facility that has helped so many Epilepsy patients and families can stay open.  What a huge loss it would be to so many if they were forced to close their doors, or change their dynamic in some way from focusing on Epilepsy in its many facets.  The Epilepsy Center is a big reason that living so far from our families is tolerable.  It would be very hard to leave the excellent care they have provided not only to Aaron, but to Gary and I as well.  They have walked with us through the stages when Aaron had many seizures day and night; his hospital stay for 5 days for his video EEG; his VNS surgery; all the adjustments after that surgery and finally having to turn the VNS off; medicine changes and tweaking;………………I could go on and on.  And I’ll never forget the time that Keith counseled Gary and I in his office, without Aaron there, about the best path to take for Aaron.  He opened his heart and personal experiences with us, and saw my tears and heard our hearts, and was there for us. 

Epilepsy, as with any chronic illness or condition, is more than a matter of pills and doctor visits.  It’s a matter of walking this life-long walk with caring professionals at your side who care and who take the time and who have a heart……………and who pray to the One Who is truly the ultimate Great Physician.

Slipper Socks

When the weather gets cold, Aaron likes to get out his slipper socks and start wearing them.  They become a permanent part of his pajama-wear during the winter. 

Yesterday evening I was on the computer and heard Aaron come thumping loudly down the stairs.  He plopped down in the chair beside my computer desk and started talking.  I turned my chair to look at him and this is what I saw on his feet:

“Uh, Aaron, one of your slipper socks isn’t on right.”  He looked down at his feet and said, “What’s wrong with it?”  I told him that his slipper sock needed to be turned around and so he started turning the one around that was on his foot correctly.  HaHa!  He thought the cute designs should be on the top of his foot! 

So I told him that the little non-sliding thingies go on the bottom of your foot.  And he was surprised at that.   We discussed what the little puffy designs are really for and why that slipper sock needed to be turned around.  He turned the sock the right way and thumped happily back up the stairs.

Funny how many things we take for granted that he should know.  Maybe I’ve never paid attention to how he wears his slipper socks in the past – but I will now! 

Stripped Cheese

If Aaron is given a choice of something to buy at the deli, either at Dillons or Wal-Mart, he’ll choose a Cheddar Pasta Salad 99.99% of the time.  And 99.99999% of the time he’ll order a large Cheddar Pasta Salad.  When it comes to eating, Aaron is definitely a “larger is far better” kind of guy. 

Anyway, today he came home from his group and said, “Mom, I got a Cheddar Pasta Salad at Wal-Mart for lunch.  I got a large [shock!] and I’m stuffed!” 

I was glad that he was able to get the Cheddar Pasta Salad today.  It was last Tuesday that the deli was out of his favorite salad, and he bought those 36 rolls.  A large Cheddar Pasta Salad is better – believe me!

After telling me that he bought his Cheddar Pasta Salad [large -shock!], he proceeded to discuss each ingredient with me – from the “twirled pasta” to the dressing.  “Mom, it has those purple onions.”  Yes, Aaron, and for some reason they’re called red onions.  Being color blind, this doesn’t overly concern him.  Good. 

“And it has broccoli – it’s very crunchy!”  Yes, and good for you, too.

“It has that dressing that you don’t like too much.  Is it mustard?”   Oh, good grief!  AGAIN??!!   Can he not ever tell the difference between mustard and mayonnaise?  “No, Aaron – it’s mayonnaise.  Remember, mayonnaise is white.”   “Oh, yeah!!!  Mustard is yellow!”   For the time being, yes.  Until we talk about it again.

He continued, “And Mom, it has that yellow stripped cheese.”   Well, that’s a new one.  It took me a minute.   “Aaron, stripped cheese?”   

“Yeah!  You know, it’s in pieces.” 

Aha!  Of course!  The grated cheese IS in pieces that are strips.  I pulled out a bag of my grated cheese and we talked about it, and about the cheese being grated. 

I don’t know, though.  I really love Aaron’s descriptive words.  Sometimes I wonder if I ruin a good thing by “educating” him. 

Stripped cheese it is! 
  

Goldfish

Aaron loves to eat Goldfish crackers.  The other night we were watching football and he went into the kitchen to get a snack.  Soon he came back into the family room with his blue bowl heaped full of Goldfish.  He was also carrying an empty bowl.  He got settled again in the big chair that he loves, stretched his legs out on the ottoman, covered his legs with his fuzzy blanket (nursing home style), and proceeded to get his bowls situated just right on his lap.  Things must be done correctly before the serious business of eating takes place!

I felt like I knew what the second, empty bowl was for but decided to ask anyway to see what he would say.  “Aaron, you have two bowls.  What’s the empty bowl for?”    And he replied, succinctly, “Crumbs.”  Now I know that Aaron does get a second bowl when he eats things like tortilla chips or cookies – food that is larger and may be crumbly.  He’ll lean over the empty bowl when he takes a bite and then give the chip or cookie a shake in order to get rid of the crumbs.  Crumbs must never go into the same bowl as the uneaten chips or cookies.  But Goldfish are very small and you don’t bite into them, creating crumbs. 

I watched Aaron out of the corner of my eye as he ate the Goldfish.  Every now and then he would toss a Goldfish into the empty bowl.  He would toss it rather quickly, like it was almost hot or uncomfortable for him to hold.  And I knew what he was doing.  Here’s a picture that I took later, after he had gone to bed.

The Goldfish that Aaron won’t eat and must dispose of are those that are defective.  They have part of the cracker area missing, or have a hole in them, etc.  He will NOT eat those Goldfish.  I’ve noticed this in the past.  He’s pretty secretive about it, as if he knows this behavior is strange and so he doesn’t want to talk about it.  In fact, as he tossed the unwanted Goldfish into the empty bowl that night he would glance at me to see if I was looking.   The workings of Aaron’s mind continue to fascinate us, no matter how long we live with him. 

Deep thoughts also cross my mind, such as:    Why on earth will Aaron sometimes eat a paper towel (no joke!) but won’t eat a defective Goldfish cracker?  I’ll probably never figure that one out!