Has Aaron Called You a Jerk Yet?

Aaron’s been home from his hospital stay for a week now.  He’s doing well, regaining his strength and overcoming side effects of some of the strong meds that he was on.  This was Aaron’s first major hospitalization for a serious illness, and we certainly pray that it’s his last.  It was interesting to watch him in that setting, and sometimes sad, sometimes funny, and often frustrating.  Gary and I were so thankful for the very patient and understanding nurses, aids, and doctors who cared for Aaron, for caring for special Aaron at times takes special calmness…..and some thick skin as well.

We were actually amazed that Aaron handled hospital life as well as he did.  He was totally out of his element, out of his routine, and out of anything remotely familiar.  He didn’t have his bed, his blankets, his clock, his animals, and so many other things that make Aaron’s life his life.  For the first several days, Aaron spent more time sleeping than anything.  But he still had to answer questions, some of which he thought were particularly dumb.  He really didn’t like questions pertaining to his bowel habits, and sighed and mumbled a definite, “HUMPFFF!” It took him awhile to understand the annoying catheter, and let’s just say that bathroom trips for the other were very dramatic.

“Are you going to flush?” Aaron would ask immediately.  Because this is what he does at home, and these nurses were taking too long, he thought.

“Yes, we’ll get that in a minute, Aaron,” they would answer as they tried to balance very weak Aaron and keep him from falling.

“When are you flushing?” he would quickly ask again.

“We’ll do it in a second,” they replied again.

“But you need to flush!” Aaron repeated.

“We know, Aaron.  We will,” they responded.

“When are you flushing?” he asked again.

And I just sat out in the room smiling, because I know Aaron and I know that this flushing business is supposed to be done a certain way by him.  He was realizing that he couldn’t count on the nurses to do it correctly at all.  No big deal to you and me, but huge to Aaron.

He wanted some normalcy, so on the day that he was admitted and I was going home in the evening, I stood over his bed and told him that Dad was staying while I ran home.  “Mom, can you bring me my watch and my glasses?”  Of course he wanted those things.  When I returned with them, he immediately put his watch on his arm, pushed up high the way he likes it, and there it stayed for the remainder of his time there. 

He had been wanting the movie “Tremors” that he had seen in Wal-Mart.  In the midst of his fever, coughing, and pain, he asked if he could have that movie.  On Sunday I ran up to Wal-Mart nearby and got it for him along with some head phones, for Aaron MUST listen to movies with head phones.  He tried watching it right away that day, but he mostly slept through it.

On Sunday morning, his coupon cutting day, he remembered.  “Mom?  I just want to go home and cut coupons.”  I felt so sorry for him!  But I assured him that I would save the coupons for him. 

In his sleep one time, he said, “This is not fun.”  Again my heart hurt as I looked at him with needles and tubes and gadgets all around him, burning up with fever and coughing, trying to swallow pills when needed.  Then later that same night, he unexpectedly said, “I love you, Mom.”  For Aaron those words don’t come often or easily, so with surprise and with hidden tears I stood at his bed and welcomed his hug.  He was scared and he was so sick.  I was scared, too, but I couldn’t let him know that. 

You can barely see his watch on his arm.  🙂
Several times that week he looked at the clock sometime after 7:00 at night, and told us that he missed Wheel of Fortune.  It bothered him to miss his show, but he was so often sleeping soundly during that time, and Gary, who was with him then, wouldn’t awaken him for that.  I wouldn’t either, so we again assured Aaron that he could watch Wheel of Fortune when he got home.  His routine was totally a mess!

His bluntness was often embarrassing to us.  I was so very relieved that the staff understood the autism, and that they made sure to brief all the staff that came on during the shift changes.  I went down with Aaron to get another chest X-ray one morning.  The technician said, “Well hello, Aaron!  Do you remember me?  I took your X-ray yesterday.”  Aaron immediately replied, “Who cares?”  I heard it out in the hall and Aaron heard me calling his name to correct him, but the nurse standing there with me laughed. 

All the nurses and others assured me that they understood Aaron, and they truly seemed to do just that.  Yet still I would find myself apologizing and explaining, even as they told me that it was fine.  They genuinely seemed to like Aaron, even when he would call them a jerk.  Yes, he called some of them a jerk, especially when he was feeling terrible and didn’t want them messing with him.  Once I went out to the nurse’s station, and they were laughing, asking each other if they had been called a jerk yet by Aaron.  Proud Mom moment.  At least they thought it was funny.  Andrea told me that Aaron just said what lots of other patients wish they could say when they felt bad. 

There were so many moments with Aaron.  One night, late, he just wanted to go to sleep but had to take his meds and have his vitals taken, a new IV started, and so forth.  He was so tired, and when the nurse was finished he said, “You can go out of my room now.”  And one day when the sweet nurse’s aid walked in, I said, “Aaron, there’s your buddy.”  He looked at her and said, “You’re not my buddy.”  Very matter of fact, not hatefully, but he made his point. 

Physical therapy was interesting.  Aaron didn’t want to answer all their questions on their first visit…..questions about our house so they would know what he faced when he went home.  He sighed a lot and rolled his eyes a lot, and I fussed at him a lot.  One day he was in bed when they came to walk him up the hall, so out of bed he came and up the hall he walked.  We knew that Aaron needed to sit in the chair when he returned to his room, but he walked over to his bed, looked down at it, and told us, “I said I want here.”  Nope, Aaron.  You’re not getting your way, even if you call us jerks.

When his fever finally broke on Wednesday night, and he felt much better all day on Thursday, he was even more vocal about how frustrated he was.  Feeling better made him miss home more, and missing home more made him more vocal.  He never totally lost control, but he was more unhappy and bossy, that’s for sure.  I told the doctor on Friday morning, before she came in the room, to be sure that she had put her thick skin on.  But when she came to see Aaron, her face was all smiles.  His chest X-ray that morning was better, and she said he could go home!  YAY!!  Aaron smiled a huge smile, and was the happiest I had seen him all week. 

One of the last things he had to do was let Occupational Therapy come and give him a shower.  He was willing to do that.  In fact, he had enjoyed showers the past two days.  He did think sitting on the chair was pretty weird.  The occupational therapist was there to observe Aaron and to show him some ways that he could shower more safely.  I listened as I packed up our belongings out in the room.

“Aaron, first you need to wash your hair,” she said.

“No,” Aaron replied.  “I do it this way.”

And as he did it his way, she tried to instruct him.  But Aaron told her that he did it THIS way.  She finally told him to at least wash the top of his head, too.  My former suspicions about his showering were confirmed. 

This scenario continued as I listened and quietly laughed. 

“Aaron, now you can do this,” she would say.

“But I like doing it this way,” he would reply.

“OK, let’s do this,” she said.

“No, I do it like this,” Aaron stubbornly replied.

On and on it went, with the OT giving Aaron suggestions while Aaron would have none of it.  Nope, he was not about to change how he showered or how he dressed afterward.  I realized after several minutes that this nice lady wasn’t instructing Aaron on how to shower.  He was telling her and showing her how he showered.  She was basically helping him shower, his way.  I was thankful that she helped Aaron shower, and I was hoping that maybe something she said stuck with Aaron, but I seriously doubted it.  Aaron’s routine isn’t changed so easily, even if you are an OT.

We left the hospital with hugs from our wonderful nurse that morning and a big smile from the aid, the one who was Aaron’s buddy whether he agreed or not.  I’m sure Aaron left his mark on everyone.  I have the utmost respect for the hospital professionals who worked so well with Aaron, even when he was grumpy and at times rude. 

And was Aaron ever glad to get home!  That story will be for another time. 

Are We Having Fun Yet?

Gary’s military career took us to many places over the years.  Many of our family were able to come visit us in the various places that we lived, including Germany.  Fort Huachuca, Arizona, was our last assignment before Gary retired.  We had lots of family and several friends that were able to come and spend some time with us while we were there, but one trip will always stand out as the trip like none other……….the trip that no one would want to re-live.
Our military housing on Fort Huachuca, Arizona
My mom and dad came out to see us in October of that particular year.  October in Arizona is usually a great time to travel because it’s not too hot and not too cold.  Since Dad didn’t like to fly, they drove for several days across country, all the way from southern West Virginia to southern Arizona.  Mom and Dad enjoyed traveling, so the long drive didn’t bother them.  They had decided to just take their time and enjoy each day.
Our backyard view –  Fort Huachuca, Arizona
Now my mother, years prior to this trip, had been diagnosed with a very rare form of colitis.  She would go for rather long periods of time with no problems, and such was the case before they left for this long vacation trip to Arizona.  She had been fine, so she didn’t even think about bringing any of her prescription medicine.  However, on the long drive across the country she began having problems with her colitis.  As soon as they arrived at our place, later that evening, Mom pulled me aside and told me that she would need to go the emergency room the next day to be checked and to see if she could get some of her medicine.  It really wasn’t a big deal, she assured me, and so I wasn’t alarmed.
The following day, I took her and Dad to the ER in the town of Sierra Vista.  She was examined and plans were made to get her unusual prescription filled there in town for her rare form of colitis.  This would take some time, though, so in the meantime the doctor gave her something else to take.  In addition, they noticed that her blood pressure was high……….so the doctor said that she would need to come back the next day to have that checked as well.
Over the next several days, we juggled Mom’s ER visits with our day trips around southern Arizona.  There is so much to see and do there, and they didn’t want to waste a minute.  Mom’s colitis, though, was not getting any better but was actually worsening.  And her blood pressure was still an issue, so back and forth we would go to the ER to have her checked.  We were also dealing with Aaron’s seizures and behaviors……but despite it all, we were having a great time as we saw the sights and went on picnics and enjoyed time together.
One day I drove us all up through the Coronado National Forest.  We ended up at the top, at Montezuma Pass, where we looked out over the gorgeous view.  On the way back to the van from the overlook, there was just a tiny little incline with very small rocks on the ground.  Dad usually took hold of Mom’s arm to help her in an area like that, but this time she had gone on by herself.  Before we knew it, she slid on those tiny rocks and fell down.  We rushed over to help her up, and she assured us that she was fine………except that her lower leg hurt.  As we drove down off the mountain, I heard her tell Dad that her leg really hurt and that she thought she should go back to the ER to have it checked.   Now Dad, who was the sweetest husband ever, proceeded to tell Mom that her leg was fine and that she did not need to go to the ER.  At this point, they had been to the ER so many times that some of the staff knew them by name.  Dad was hoping that their ER days were over, but it was not to be.
Coronado National Forest
As soon as I dropped the kids off at our house and left them with Gary, I drove Mom and Dad back to the now very familiar emergency room.  Dad and I waited while Mom was X-rayed…….and then we were both shocked when the doctor walked out to tell us that Mom’s lower bone in her leg was broken.  Broken?  Are you sure, we asked?  Yes, we’re sure, he answered.  So Mom’s leg was put in a splint, and we were instructed to be seen by a certain ortho doctor on Monday.  This was Friday, so we had the weekend to wait.  And now Mom couldn’t walk……..and her colitis was bad, which meant frequent and VERY fast trips to the bathroom.  Oh dear.
We also, for some reason that I have forgotten, could not get a wheelchair at that time.  So we would put Mom in Gary’s desk chair with wheels, and we would roll her quickly around our quarters to the bathroom when the need would hit…….which as I said, was often.  VERY often.
We also had another little complication on this ever more interesting vacation trip.  Remember that we lived in military quarters.  When the housing authorities decide to make repairs on your quarters, they don’t typically ask if they can make said repairs.  They TELL you when they are making the repairs, and you deal with it.  Before Mom and Dad’s trip, we were told that there would be a certain project that would start on such and such a day on our house.  Just a small project…………putting on a new roof.  Oh, and since they were fairly certain that there was asbestos in the old roof that would be removed, we would need to make plans to be gone from our house on that day.  Gone…….as in gone ALL day……so as to avoid the asbestos.
You can probably guess that the day of the roof removal was on that Monday……….the Monday that Mom was scheduled to go get her broken leg put in a cast.  I had planned a full day trip to Mexico for all of us so we could do what the contractors told us to do……..which was to be gone………..and so we could avoid the nasty asbestos……….and so we could show my parents Mexico and we could shop and we could eat and we could have so much fun.  Instead, we were trapped in our house with Mom in a rolling chair with her leg stuck straight out, careening up the hall like crazy people to take her to the bathroom……and contractors at our door bright and early, asking us when we were leaving.  I explained that we were NOT leaving, and these Mexicans were trying to understand until they saw Mom……….and then they knew.  So they instructed us to keep our windows closed and good luck.
Dad and I got Mom to the doctor, and she came home with a nice new cast…….and still with her colitis, as strong as ever.  I don’t even remember how high her blood pressure was at this point, but I’m pretty sure that Dad’s and mine was right up there with Mom’s.  At least now we also had a wheelchair, and so life was a little easier……..except that our quarters weren’t exactly big enough, especially the bathroom doors, for a wheelchair.  Boy oh boy!
The Mexicans were working on the roof and we had our windows closed, but we noticed the dark clouds that were rolling in over the mountains.  Surely not.  It couldn’t be threatening rain in Arizona in October.  Not with our roof off………not with Mom in a wheelchair and a cast.  Soon our doorbell rang, and one of the Mexican men stood there rapidly firing off his mixture of Spanish and English.  I knew enough to know that he was telling me that they were hurrying as fast as they could to beat the rain, but that most of the roof was still not rain-ready.  And as we stood there, they also told us to move our vehicles because they were spreading tar on the flat roof………and the wind was whipping up because of the approaching storm.  So now we had very little roof and we had blowing tar.  Yes, blowing tar.  The tar didn’t get on our vehicles that we moved, but it blew all over our yard and carport……..and it seeped into our storage room………..and it got tracked all over the inside of the house.
Then the rain came………a hard, blowing rain.  The workers all left………..and we were left with drips coming out of our ceiling all over our quarters.  We used trash cans and buckets and bowls to catch the water.  Which meant that now we had Mom with a broken leg in a cast and with colitis………bad colitis, remember………being pushed quickly up the hall to the bathroom while dodging buckets and bowls and trash cans……….and somehow making it with our help to the toilet.  Soon after this rain fiasco started, I heard Mom in the bathroom laughing.  There she sat on the toilet, with steady drips of water landing right on her head.  Well, at least it was one drip that didn’t need a bucket.  We just kept the toilet lid up to catch the drips, and handed Mom a towel to hold on her head whenever she had to go.
The next day the workers returned and I tell you no lie………the same thing happened.  It rained yet again!  We had to laugh at this point.  I was so thankful for Mom and Dad’s good attitude, especially Mom’s.  Dad was getting a little stressed, of course, as he worried about her and wondered how on earth they were going to get home to West Virginia.  Finally, the decision was made.  My sister, Jan, flew out to Arizona in order to ride home with them.  I picked her up in Phoenix, and on the drive down to Fort Huachuca she asked if I could stop to let her use the bathroom.  On down the road a short way, she asked me once again to stop.  When she got back in the car, I asked if she was OK……..and she sheepishly said that her colitis had flared up.  OH NO!!!!!  She made me promise not to tell Mom and Dad, and she said the next day that she was fine……….and off Mom, Dad, and Jan went to drive back to West Virginia.
From what Jan told us, the drive back across country was pretty much a nightmare.  One day she told me that she stopped counting at 27 the number of times they stopped for Mom’s colitis attacks.  Many bathrooms were not wheelchair accessible.  Some hotels didn’t have any handicap rooms available.  It took at least 5 days to get home………..maybe more………..neither of us can remember.  I do know that Jan said by the time they got home, Dad was totally exhausted and he looked grey.  Poor Mom was wiped out………pardon the pun, but she would totally love that.
But things were not over.  Nope, not by a long shot.  When they got back home, Mom ended up in the hospital with pneumonia!  Yes……..colitis, broken leg, and now pneumonia.  But wait……….there’s more.  While in the hospital with pneumonia, she developed a blood clot and had an embolism.  She was in the best place for that to happen, although it was still a miracle that she didn’t die.  Of all things, this was her second embolism.  She had one years earlier after toe surgery.  She must be some sort of statistical miracle for sure!
This long story is just to show that through it all……….through this absolutely horrible vacation……….Mom and Dad stayed calm and strong.  Especially Mom.  Her strong will and her sense of humor kicked in, and she never acted like she was down or distressed.  She joked about everything and made the whole situation easier.
And most of all, as she lay in that hospital bed after the embolism, she said that God comforted her by giving her the verse that became her verse.  I wrote about that verse yesterday.  Psalm 46:10 – “Be still and know that I am God.”  She said she lay there and just let her mind dwell on that verse.  She knew that God was in charge of all this craziness, and in charge of her health………..and that if she died, it would be fine………..and if not, then she would remember that He is God.
Tomorrow is Mom’s 87th birthday.  She has Alzheimer’s and has forgotten more than she remembers now.   I bet she can’t remember that disaster of a vacation…….and maybe that’s best.  But I’m thankful that the rest of us can think of it and remember what a testimony she was through it all.
We love you, Mom!  And we think of what you always said when you had these colitis episodes……”It’ll all come out OK in the end.”   HaHaHa!  That’s my Mom!