Aaron Was………Aaron

Today was the day for our annual meeting with Aaron’s case manager, Carissa, and with Barb from Paradigm.  We meet at Applebee’s in order to make the meeting more fun for Aaron, because if a meeting involves food then it is automatically more tolerable than just a boring meeting sitting around a table and signing forms.   It’s amazing how quickly these meetings roll around………..how fast time goes by from year to year.  So far things are well set for Aaron, and so these meetings aren’t really a huge deal.  We have to correct some things on his paperwork like new meds or meds that he’s no longer taking; new doctor info; and of course this year put a brand new, much lower weight down for Aaron. Carissa was shocked to see the new, slimmed down Aaron……and Aaron was happy about that, although he was too busy looking at the huge Halloween spider stuck on the front of the counter near the entrance, and so he didn’t comment. 

We’ve learned over the years to have our own plan of action concerning the post-meeting issue of getting Aaron to return to Paradigm.  In other words, if Aaron is with Mom for even a small fraction of the day, then he thinks that it’s his right to return home with Mom and not to go to his day group.  Between Barb and me, we’ve learned to cover all the bases………telling Aaron that yes, he is riding to Applebee’s with Mom for the meeting; and yes, after the meeting he gets to ride with Barb back to Paradigm; and yes, you and Barb will stop at Quik Trip on the way to Paradigm.  Notice how positive we are? 

I also use some strategies at home, such as……….yes, you can have the computer keyboard put in before we leave if you are nice (or at least moderately nice, but I don’t say that to Aaron.); yes, you can have some money for getting a snack today (but do not buy Rosie crayons or give your money away to anyone); and yes, you have time to watch the old movie version of The Thing before we leave. 

Still, Aaron went through some spurts of hatefulness as he tried to process this day in which he has a change in routine…….a change which to him means that he should be able to come home and spend the entire rest of the day on the computer.  I went in his room this morning and found him with his headphones on, watching The Thing.  Well, he was actually finished with the movie.  As he heard me enter his room, he impolitely said, “Get lost.  I’m trying to finish the credits!”  Yes, there he sat with his eyes glued to the monitor as the movie credits scrolled by.  Yes, he watches the credits and reads every single word.  They ARE part of the movie, after all!  So I just left the room after chiding him for being rude, and I let him finish the all-important credits.  Soon he came in my room and his day began with, “Mom?  Are you sure I have to go back to Paradigm after Applebee’s?”

  He pushed a bit against our plan and was on the verge of losing his privileges, when he finally went in his room again and shut his door.  Thankfully, he calmed down and the rest of the morning was mostly pleasant.  He said he showered, but his hair didn’t look great so I’m not sure.  However, he smelled of deodorant…….although a different smell than his usual.  Barb cleared that up later by asking Aaron if he still had the deodorant that he put in his pocket at Paradigm and brought home…………and which is the community deodorant.  Oh my!  This was the different odor I noticed.  Community deodorant………and Aaron smiled proudly as he said that he did indeed put on his “new” deodorant today.  It is now in the trash.

At Applebee’s, as Aaron waited for his house salad and his chicken strips to come, he put a whole pack of sweetener in his mouth.  He loves sweetener, and if left alone he would swallow paper and sweetener both.  Yuck!  I told him how bad this was for him and how sick he could become, so up he hopped as he spit the package into his hand and headed for a trash can……….a trash can that was in an area where there were little beverage napkins stacked.  He proudly returned with a stack of small napkins………and it wasn’t long before he got up again and with purpose returned to the napkins and walked back with another hand full.  His need for napkins was satisfied……..as was his need for toothpicks, I learned later, as he emptied his pockets and dumped his toothpicks on the table.  Between these today, and the ones he got at TGI Friday’s last Wednesday, he shouldn’t need new toothpicks before Christmas.

Aaron left Applebee’s happily with Barb.  He called me later from her cell phone and told me that at Quik Trip he got some coffee, and some Good And Plenty’s …….and that Barb used some of her money.  “See Mom?”  he said.  “I told you to give me more money!” 

No, Aaron, you need to do less spending!  But this fact never computes with Aaron, although I will keep trying. 

I was texting my friend Atha later after she asked how our meeting went.  I told her that the meeting went smoothly and that Aaron was Aaron.  She understands exactly what that means.  She replied, “He can’t be anyone but Aaron.”  And then she continued, “You should be thankful.” 

And as I think of it, she’s so right.  There are times that Aaron pushes every button that we have, and then somehow finds even more to push.  But really, there are many reasons to be thankful for our Aaron……….and a big one is for how he makes us laugh, even sometimes between our gritted teeth and rolling eyes.  We have one more meeting next week, and then we’re done for another year. 

Done with meetings, that is.  I don’t think we’ll be done with Aaron……….not by a long shot. 

Walking With Dad

Every autumn when we were young, when the leaves were vibrantly colored and the mountain air was crisp in my home state of West Virginia, Dad would set aside a Sunday afternoon for our annual long trek through the woods.  I’m sure that Mary Beth, John, Jan, and Kathryn remember that special tradition as well.  Dad would take us up in the woods behind our old house in the Elmore addition and off we would all go, following Dad as he led us on the road or the path through the trees.  Dad worked six days a week, so I know it was a sacrifice of his time  to take us on this outing.  He would point out the various trees by name, telling us interesting facts about each species.  He would stop and tell us to be very quiet as we listened to the forest sounds around us.  We would listen expectantly………waiting……….waiting……….until we heard the unique chirping of a squirrel, or the rustling leaves caused by a hopping rabbit, or the unmistakable shrill of a Blue Jay or a hawk.  Dad wanted us to not only have fun on this walk, but to see and to learn from all that was around us. 
 
Eventually we would end the day sitting on the ground of a sloping hillside, enjoying the wonderful sunshine and fresh air…………and time together as a family; although that is a treasure that is relished now, I’m sure, more than it was at that particular time.  I don’t remember how long we were in the woods.  Time was irrelevant as a child.  It seemed like forever, but I’m sure it wasn’t all that long.  I do know that if I had been in those woods alone, I would have been terrified.  But with my dad leading the way, and with my siblings around me, I never had a doubt or fear.  I was secure and carefree, loving the experience and trusting in the guidance of my dad. 
 
I’m thinking of all this because I was reading Psalm 5 this morning.  David is in a very bad predicament here, even dangerous.  He talks about the importance of preparing his prayers and the importance of knowing the God to Whom he is praying………and then in verse 8 he begins to pray.  “Lord (Yahweh), lead me in Your righteousness because of those lurking for me; make Your way straight before me.” 
 
David is asking God to lead him in the right way – that’s the first request he makes.  God, show me the way to go……..the right way.  And why?  Because all around there is danger.  There are enemies who want to trip him up, even to kill him.  But isn’t it interesting that David first asked to be led in the right way before he asked to be led in the safe way?  And that David didn’t ask to be delivered OUT of the way of the hard stuff, but to be led IN the right way IN the midst of the hard stuff.  “Make Your way straight before me” doesn’t sound like David was asking for a detour around the situation, but a straight way through it.
 
We’re all on a path, and many times it isn’t too rosy.  When it leads through the dark woods of suffering and anguish, we can easily lose sight of our Guide.  Sometimes we need to just stop and listen…………….listening for what it is God wants to say to us and to show us.  There may be times that we don’t hear anything at all, but we can pray.  Like Dale Ralph Davis says, “Sometimes we may not be fully aware of all the details – not know all the particular dangers or various pitfalls, nor even the precautions required.  Sometimes it looks like there are no roads in what’s ahead of us.  But we can pray verse 8.”
 
Lord, lead me in the right way………because of all the junk that is pulling me down.  Make your way straight……….through all the questions and the hurt and the loneliness and the darkness.  Step by step, just lead me on the straight path in front of me step by step.  There are times I wish I had all the answers, either for myself or for others, but I don’t.  Yet I do know that I need to take one step…….then another step……….then one more………and all the time, ask God to lead each of my steps in the right way.  I wish life was full of fun, but sadly that isn’t the case.  Yet in the hard times, there are things to learn and growing to be done. 
 
My Guide is totally trustworthy, even when He doesn’t explain why He’s leading me down this particular path.  I know that He loves me and that He’ll take care of me………even though at times I have fear of all the unknown that is around me.  Other times I’m even angry because the path is too difficult and I’m tired.  But still I can pray:  “God, lead me in the right way because there are so many enemies lurking on the other ways.  Make Your way straight before me.”
 
Someday I’ll sit down and rest, looking back on the path through the woods and thinking of all the lessons learned.  And realizing that God did indeed lead me in the right way and the straight way.

 

 

Just like my dad.

I Have The Name Aaron

Today was dentist appointment day for Aaron – time for his four month check up and cleaning.  Yes, he goes every four months because his dental cleaning skills are not at the top of his list of priorities.  And for Aaron, today was GO OUT TO EAT LUNCH AND GO TO WAL-MART DAY……….with a little unwelcome side trip to the dentist to mess things up a bit.  The dentist visit was a necessary evil that he had to endure in order to obtain his chief objectives.

Aaron does fine at the dentist, although that’s easy for me to say as I sit in the waiting room…….far away from Aaron’s open mouth.  I used to go back with him for his visits in order to just give him the comfort of my presence, to rub his arm and keep him calm,  and to be able to rescue the hygienist if needed.  Aaron actually has always done well at these visits but there have been times that he has gotten a little impatient and wiggly……….and borderline hateful.  Once he shook his fist in the air.  Only once, at least that I know of.  I put an end to that very quickly with the promise of NO lunch out and NO Wal-Mart if he did that again. 

Now I don’t go back in the exam room with Aaron.  I’ve convinced him that he’s grown up enough to do this dental visit on his own.  It would be nice, though, to just be near Aaron when he has his mouth open and no words coming out.  But he does great without me……….except  he told me during lunch today that he accidentally bit the hygienist’s finger while she was working on him.  Oh my!  I asked what she said and he told me that she said, “Ouch.”  Hmmmm…….I wonder if I should call and check on her.  She didn’t seem hurt when she came out with Aaron to talk to me.  Anyway, Aaron had no cavities, and his teeth were fairly clean, so we left happy.

And Aaron left with something in his hand that he had taken off the counter while I made his next appointment.  I thought it was a free calendar, but when we got in the van and I looked at it, I saw that it was a whole pad of coupons.  I told him that we don’t need all those dozens of the same coupons, and he said, “But Mom, they’re coupons and I want to cut them out.”  Oh good grief, Aaron!  So back in the office we marched and we returned the pad of coupons, much to the laughter and delight of the nice staff……..who also gave us two Wendy’s Frosty coupons.  Aaron wasn’t that impressed with those, though, because they are already cut out.  As we once again walked out, I told the staff to check their purses…….you never know what else Aaron may have taken.  I haven’t gotten a call yet so maybe we’re good.

We stopped at TGI Friday’s for lunch, for which I had a coupon…….one of three that Aaron had already torn apart on those serrated lines that he can’t resist.  Sigh.  Aaron chose chicken tenders to eat after making sure that they were boneless…………a salad with Ranch dressing, and even an extra dressing on the side that he dumped immediately on his salad even as I was telling him that it was extra IF he needed it…………and French fries.  He hopped up before his food came and before I could stop him he had gone to the front counter for his required toothpicks.  Fourteen.  He got fourteen toothpicks……..and when he offered to return them to the waitress later, she kindly told him that he could keep them. 


As the meal was winding down, our waitress asked if Aaron would need a box……but soon she returned and saw that Aaron had eaten every bite.  She commented on the fact that we wouldn’t need a box after all, and Aaron said, “I’m sorry I ate it all.  I’m sorry!”  So we both assured him that it was fine for him to eat it all, and he was happily relieved.  Our waitress was very nice, but I imagine she was a little puzzled.  Aaron tends to have that effect.

Off we headed to Wal-Mart, where the first thing I did was direct Aaron to the bath section.  I had promised him a buff-puff on a stick and he was excited to buy one.  Later, as our items were being rung up, Aaron told the cashier, “My mom bought me a puff ball on a stick!”  He further explained to her that he couldn’t reach his back in the shower and that now he could.  As he loaded our bags in the cart there at the register, he heard someone yell out the name Aaron.  He put his hand over his heart in shock and looked quite alarmed, which made me laugh as I assured him that it was another Aaron being summoned.  He told the smiling cashier, in a rather breathless voice, “I have the name Aaron.”  She and I both smiled, and I had the feeling that she was rather enjoying her unusual customer with the name of Aaron.

We walked past the nail salon, which so interests Aaron and which he has wanted to visit. “Mom, I heard they have men in there.”  Who knows?  Maybe someday I’ll let him try it…….but NO polish!  And soon after that you would have found Aaron and me looking down through a large grate in the parking lot at the drainage pipe that so fascinates Aaron.  He excitedly told me about the pipe he recently saw in Old Town that was “pushing water up out!!”  And I wondered what people thought of us standing there looking down through that grate, but I didn’t really care because I was having fun with my special boy.

Aaron loves reading personalized license plates, and trying to guess what they mean.  As we drove away from Wal-Mart, the car in front of us had the name “Wurtz” on their plate.  “Look at that license plate, Mom!” he exclaimed.  “That’s the stuff on your face!”  

“No, Aaron,” I said through my laughter. “That would be warts.” 

Wait!  Did he mean MY face?!

We stopped at the vet for dog food, where Aaron had to share the “Wurtz” and “warts” story with Charla as she rung up our dog food.  And Aaron got to pet Kato the cat, who was just shaved and looked so adorable with her puffy tail and legs and face……..and who promptly gave Aaron a few little bites when he wouldn’t quit picking her up.  As we left, Aaron happily told Charla about his good report from the dentist…….clean teeth and no cavities!  “Do you ever have the dentist say your teeth are clean?” he asked her.

Oh Aaron!  Time to go home!  You need to keep your mouth busy with your bubble gum tape I bought you.  Or your Sour Cream and Onion Pringles.  Or your flavored water. 

Yeah, it was a fun time for Aaron at Wal-Mart for sure.   And a fun day for me with our boy that has the name Aaron.

Some Saturday Morning Smiles

Aaron was up early again this morning.  I mean very early, long before Gary and I were out of bed………and we don’t sleep late.  I heard Aaron on his monitor, so I reached over to turn it off and hoped to catch a few more winks.  Jackson had already gotten me up during the night to go outside, and I had still been awake to see the shining of my digital clock at 12:30 something……….so I was moving very slowly when I finally went downstairs a little after 7:00.

But not Aaron.  No………Aaron was chipper and happy and full of talk.  I was mostly non-verbal at this pre-coffee stage, but Aaron didn’t care.  He stood outside the bathroom door talking to me, and I knew it was going to be one of those mornings.  I sometimes feel like I still have small children between the dog getting me up some nights, and Aaron arising early, full of chatter and questions and much information that he wants to share….whether I want it or not. 

I was at the one syllable word stage as I sipped a cup of coffee, but Aaron wasn’t fazed.  He told me that he was hungry, even after eating a bowl of cereal when he got up very, very early.  He asked for tomato soup.  Tomato soup at 7:30 in the morning?  Yes, tomato soup, he said.  Well, that was easy enough, and he was even happier and more full of talk as he slurped his soup and I slurped my coffee.
 
“Mom!” he blurted, “the day before last night I was reading about that place during war.  It’s in Texas!”  This brought a small smile to my face.  The day before last night.  As if reading my mind, he clarified by telling me that it was Thursday night that he read about that place in Texas during war.  “The Alamo?” I asked.   “That’s it!” he said.  “I bet Andrea would know all about that!”………..as if Andrea living in Texas would now make her an expert on the Alamo.  I’m fairly certain that sometime Aaron will ask Andrea all about the Alamo, too. 

Maybe it was partly the coffee, but Aaron’s way of expressing himself was also  responsible for my smile.   I was warming up to this morning, and especially to sharing it with Aaron.  I’m used to some quiet time before he gets up, but lately that’s changed.  I may as well be thankful that he was in a good mood, and then decide to share that mood with him. 

Soon my smile was even bigger.  Something made Aaron think about having pets, which made him remember a conversation he recently had with Barb at Paradigm.  “Mom,” he said, “Barb, she does not have pets……….but she just has those children.” 

I laughed out loud at this one.  Oh Aaron, you do have a way of saying things.  Yes, you do.

Later, we were up in his room looking for his missing wallet when I noticed this in his trash can.

It’s the large container of Sunburst tomatoes from Sam’s.  We had eaten a few but there was almost a whole container full when they were last seen on the kitchen counter the night before.  I hadn’t even missed them this morning, but there was the evidence in Aaron’s trash can.  I held up the empty container and asked Aaron if he had eaten them all.  He sheepishly said that he had eaten them the night before……….every single one.  That might explain his frequent bathroom trips this morning.

He went on to explain, “Mom, I was really hungry last night!  My stomach……..it’s like it was flat in!”  

He further emphasized what it’s like to have a “flat-in stomach” from such severe hunger.  And then he asked, “Mom?  Have you ever had a flat-in stomach?” 

OK.  Conversation over.  I know where this will lead………and the talk earlier in the week of how I would look in Vanna White’s skinny dresses was still fresh on my mind. 

I made my escape without answering the question………and I’m still smiling at my morning with Aaron.  It’s more than the coffee, too.  It’s just Aaron being Aaron that’s made my morning brighter.  

Gumby He Is NOT!

Yesterday my friend, Nancy, asked me if Aaron and I would like to come up to her uncle’s farm.  She knows that I am fascinated by big Kansas farms, and she thought that Aaron would also enjoy seeing the large machinery and the dairy cows.  Now, I know Aaron, and while I felt like he might want to see the farm and the cows, I also knew that he might balk at this change to his daily routine.   I have told you that Aaron loves daily routine, right?  I thought so.

Nancy said that she would be at the farm today, Thursday, so that would be a good time for Aaron and me to go.  Therefore, I told Aaron about the invitation last night so that he would have time to process the information.  As I expected, he had some questions about it and wasn’t exactly hopping up and down with excitement.  I knew what he was thinking, but I decided to just leave him with the proposal and let him think about it.  He later said that he would go, but still he wasn’t thrilled.

This morning, Aaron got up early and came down to the kitchen.  As we talked, I once again mentioned our trip to the farm.  And once again I saw that Aaron was less than excited.  Finally he said, “So when I come home from Paradigm, we’ll go to the farm?”   I told him that we would.  “How long will we be there?” he asked.  I told him that it wouldn’t be terribly long…….and I knew where this was going.  “So when I get home from the farm, will I have time to play the computer?”   I told him that he would.  He was silent for a minute as he thought through this change in his day. 

He continued, “But we have to watch Wheel of Fortune.”  I admitted that I wasn’t positive we would be home but that we could tape it.  “Then after Wheel of Fortune can I get on the computer?” he asked.  I assured him that he would have time for his computer.  He was still unsettled, and it wasn’t long before he was asking these same questions all over again.  I finally stopped him and just asked him if he really wanted to go to the farm or not……….and he admitted that he did not.  He felt bad but I assured him that it was all right, and that perhaps another day would work better, like a Saturday. 

You see, when Aaron comes home from his day group, he first of all talks to me and fills me in on his day.  Then he changes into his pajamas, plays a computer game, and relaxes his busy mind.  Around 6:28, he thumps loudly down the stairs so that we can watch Wheel of Fortune.  After Wheel of Fortune, he might stay downstairs and watch something that has been recorded……….or talk to Gary and me awhile……..and pet Jackson…………..and then head back upstairs to his computer.  Sometimes he and I will play a game later in the evening, and sometimes we don’t……..but he always knows that this is an option.  If we run to a store like Wal-Mart or Dillon’s, or go to Great Clips for a haircut, then he is excited. 

Do you see any room in this schedule for a trip to a farm?  Well, neither did Aaron.  It just wasn’t working out in his mind, no matter how hard he tried.   I could see that instead of anticipating the fun farm trip,  he was becoming agitated over it instead.  And if I forced the issue, he would become angry and then no one would have fun. 

It wasn’t long after this conversation that Aaron was growing restless.  He was up early and there was a long stretch of morning ahead of him.  He had showered and had eaten and had drunk his coffee.  I suggested that he go out in the mulch, but he didn’t want to for some reason.  Then I told him that he could watch Animal Planet.  He enjoys looking at that show when he clips out my coupons on Sundays. 

As soon as I had made the suggestion, Aaron said, “I only watch Animal Planet on Sundays when I’m doing the coupons.” 

“So you absolutely won’t watch Animal Planet this morning?” I queried hopefully.

“No,” he flatly answered.

And there it is………life with autism.  Sometimes Aaron is flexible, but many times he is not.  This morning he was not.  And it’s OK, really.  If he was allergic to dairy foods, then I would not have let him pour regular milk on his cereal that he had just eaten.   If he was diabetic, then I would not have let him eat the Honey Nut Cheerios that filled his breakfast bowl. 

But Aaron is autistic, and therefore I cannot expect him to easily adjust to changes in his routine.   This means that I am often the one doing the adjusting as I adjust my expectations, my demands, my desires, and all too often my attitude.  When he knew that I wasn’t going to push the farm trip on him today……or Animal Planet……..he was relaxed and happy.  The story would have been quite different if I had reacted angrily.  And if I had exhibited even a hint of ridicule in my look or my voice, you can bet he would have sensed it, and he would have been hurt and defensive. 

So today Aaron came home from Paradigm, where he found me on the phone with my good friend from North Carolina.  He leaned down in my face and asked if I would come to his room when I hung up.  I did just that, and he told me about his day.  He had already changed into his pajamas.  Later,  he thumped down the stairs……and we watched Wheel of Fortune while he ate popcorn……….with his blue bowl there, of course, in case there were crumbs. 

See his blue bowl?  HaHa!

Our evening is going the way that Aaron likes and he is happy.  Maybe we’ll visit the farm on an upcoming Saturday……a day that gives Aaron the freedom to be more flexible.  As for Animal Planet, Sunday is coming!  Provided there are coupons to cut…….because remember that Animal Planet is only for coupon cutting sessions.
 

I’m learning, Aaron, I’m learning.

You Don’t Want Me Still Talking

I’ve been thinking about the past few days with Aaron, and how he takes the most normal of things and makes them uniquely his own.  He gives so many things a different twist and often we end up laughing……..or shaking our heads in frustration.  One thing is for sure – it’s hard to be a step ahead of Aaron.  Usually I’m running to catch up to him!

This past Saturday morning, Gary and I ate breakfast with Aaron as we listened to him talk.  He was very happy that I had fixed his favorite biscuits, and even happier that the blessing Dad asked wasn’t very long so that he could dig in quickly……….all the while keeping an eye on the pan of biscuits in the kitchen, hoping that no one would claim any more of them and they would all be his.  As I later cleaned up the kitchen, I turned around to find Aaron holding the small gourd that Rosie’s mom, Louise, had given me from their garden.  Of course, Aaron had noticed it sitting in the kitchen because it’s unusual and bumpy.  Aaron was walking out of the kitchen, headed to his room with the little gourd that he had claimed as his own……..without asking.  I stopped him and we had a conversation about the gourd and where I got it and what it is and could he have it………so I said yes.  He’s so delighted by the simplest of things.  Plus, he had experienced a rough time at his day group the day before so I was hoping to give him a happy weekend.  If the gourd helped us accomplish that, then so be it.


Aaron knows that we usually change his sheets on Saturday, so he was very happy that I went up to his room at the same time that he did and that I asked if he wanted to do this sheet changing job now.  He prefers to do it early in the day instead of often having to wait on me to get to it later.  It hangs over his head all day, so finishing it early was a good thing for him.  It had rained the night before, so Aaron pointed to the raindrops still on his window as he said, “Mom, look at the dots on the window!” 

He told me how he read about the Boston Tea Party in his Handy History Answer Book the night before.  He had some questions about what kind of tea was at this party and what made them throw it in the water, so as I tried to explain what had happened I told him that the tea tax was the straw that broke the camel’s back.  I know better than to use those sayings with Aaron.  He takes them quite literally, so soon I was explaining that there were no camels at that tea party that really wasn’t a tea party and that the camel wasn’t carrying straw and that his back didn’t break if he WAS a real camel and it’s just a saying and this is what it means……..oh, never mind.  Forget the camel. 

And by the way, Aaron, why is there an empty toilet paper roll under your bed……..and a bowl of Skittles?  And yes, we can plug in your disco light thingy and close your blinds and turn your light off while you play a computer game in your disco room.

  Yes, you can put the gourd on your bookshelf.  Yes, I’ll look at that one clip about whatever movie it is you’re watching or whatever game you’re playing.  Finally, after much more talking, I edged toward the door and said, “See you later, Aaron.” 


“Where are you going, Mom?” he asked.  I told him that I was going to take a shower, and he concisely replied, “You’re weird.”  So I asked him why on earth that was weird, and he answered, “Because you don’t want me still talking.”  Actually, escaping to the shower was a huge relief, but I knew that Aaron was very likely to stand outside my locked bedroom door and still talk as he so often does.  And who is the weird one anyway??

There were more simple things that made Aaron happy over the next few days, like going to Dillon’s and seeing the spooky house full of “smoke.”  That made him nearly as happy as his cheddar pasta salad and chicken tenders.  And taking Jackson on a walk, because I let him hold the leash the way that Zach did. 


He came in my room after taking his shower yesterday and asked, “Mom?  Can I have one of those string things with a puff ball on it?”  I knew exactly what he meant and I said that he could have one and he was very happy about that.  In fact, I suggested a buff puff on a stick because he could wash his back better with that………and he thought that a buff puff on a stick would be just too cool!

This morning on the way to meet his group, he talked about Napoleon after reading his history book last night on that subject.  He observed, “Mom, Napoleon’s war suit was different from other war suits.  It was fashioner!” 

You are so right, Aaron!  It was more fashioner than some of those other military guys.  I was thankful, too, that Aaron didn’t broach the topic of Vanna White’s clothing again today like he did the other day.  He and I love to see what new dress she is wearing when we watch Wheel of Fortune.  Aaron often wonders what I would look like in those dresses…….and I try to change the subject.  But the other day Aaron said, “Mom, those are real skinny dresses.”   Pause.   “Can you wear those?”   Pause.   “I don’t want to use the word fat, but you’re not as skinny as her.”

What did you say Saturday, Aaron?  Something about me not wanting you to talk?  Sometimes I wish!

Walking the Tightrope

I heard Aaron on the monitor early this morning, a little after 5:00.  I rolled over in bed so that I could hear better.  No, it wasn’t a seizure.  I listened for a couple more minutes and then knew that Aaron was awake.  Not only awake, but it sounded like he was out of bed.  Soon Gary got out of bed and went downstairs.  Aaron popped out of his room when he heard the footsteps and said, “Mom?”  But he knew it wasn’t Mom when he heard Gary’s voice, so he went back to his room while I listened again on the monitor.  Soon I got up, too, and went down to fill my coffee thermos.  I headed back upstairs and was in Andrea’s room, where my quite time desk is, and was quietly closing the door when once again Aaron quickly opened his bedroom door.
 
I was discovered!  He clomped up the hall and began to tell me about his head and stomach hurting.  His blood shot eyes also told a tale.  Aaron has started a new medicine this week, and every morning he has gotten up early……..much earlier than usual, but this morning was way too early.  Is it the medicine that is causing his sleep to be disrupted?  Does he really feel sick?  With Aaron it’s hard to tell because he tends to exaggerate aches and pains in order to either get sympathy or to be able to stay home from his day group. 
 
I ushered him back to his room while listening to him talk about not feeling well, and then he launched into a rundown of the latest movie that he’s watching.  I told him to hush about the movie, helped him take his sweater off, pulled back and straightened his covers, and finally talked him into getting in bed again over his protests that he wasn’t sleepy.  He kept talking.  “Aaron, Aaron,” I said.  “Just close your eyes and relax.  Don’t talk anymore about movies or about your head or stomach.  I bet you’ll go back to sleep.”  He wasn’t sold on that idea, but I could tell that he liked the feel of his multiple blankets on top of his tired body and that he was indeed relaxing.  I turned off his light and closed his door.
 
It wasn’t long before I could hear his steady breathing through the monitor.  Good!  He had fallen back asleep.  Hopefully he would stay in bed for a couple more hours, at least.  It was just a little over an hour later, as Gary was getting ready to leave for work, that I heard Aaron stirring and soon he was downstairs.  I waited in the kitchen to see what look was on his face…….what mood he was showing………when he came into the room with a smile.  Ah, relief!  He talked about not being able to sleep, about his head and stomach, and his movie once again……..but he was happy and I was hoping the pleasant mood would last.
 
“Mom!  I woke up at 5:09!  Why couldn’t I sleep?”  We talked about Aaron’s sleeplessness even as I reminded him that he did get an extra nap after he went back to bed.  I wanted him to feel rested and not to claim extreme tiredness as a reason to stay home today.  Soon I had talked him into eating some breakfast.  
I suggested boiled eggs and bacon, but he only wanted eggs.  He finally agreed to the bacon if I would make it crispy and not chewy.  Later he had his eggs and bacon along with his coffee as he was snuggled under his blanket watching a program on the DVR.  What a life!  Of course, the program he was watching was one that he started yesterday but he didn’t get to finish it.  Therefore, in true Aaron fashion, he started the recording over from the beginning.  He will NOT usually resume watching a program where he left off but will instead start all over from the beginning.  Some programs take several times to watch because of this regimented way of doing things.  He also presses the pause button every time he looks down at his plate to put food on his spoon or fork.  He cannot miss one second of his program………not one.  So it’s pause……scoop food……..look up…….press play……..chew and swallow……press pause…….scoop food……….
 
I mentioned this to Aaron this morning in a very matter-of-fact way so that he wouldn’t get defensive.  He confirmed that this is how he operates.  I just agreed with him and walked back in the kitchen as I left him to his pausing and playing, over and over and over.  There he sat, with his food and his multiple utensils and napkins and coffee………..with his particular way of watching his program………and his mother just smiling inwardly at this unusual son.
 
I got our supper in the crock pot and cleaned the kitchen while Aaron finished his pausing and chewing and playing.  He was very quiet, and I saw that his head was laying back though his eyes were open.  He got a little grouchy when I told him that I was going to shower, and that he should do likewise.  Later, I looked up the hall and saw that his door was closed.  When I knocked and then walked into his room, I saw him sitting at his desk, watching a movie on his computer.  Now his mood was different.  He was grouchy Aaron, and he let me know that he wanted me to leave him alone.  In fact, he took off his headphones and got up from his chair as he pointed to the sign that he had put on his door.
 
 
He was quite irritated that I had not seen the glaring sign………..the sign that told me to not only stay out, but to get lost.  Oh boy………here we go, I thought.  So I just told him that soon we would be leaving, and then I left his room as he closed the door behind me.  Surprisingly enough, the rest of the morning was pretty calm.  He allowed me in his room a few more times………he gladly let me help him with his belt………he listened while I explained that his tiredness was not my fault……….and he actually got ready to leave for his group without a fight.
 
He talked on the way to meet his ride about all the things that Aaron talks about, which is anything and everything that crosses his mind in that 10 minutes.  “Mom, I saw a boy walking a dog this morning.  That dog is full of fluffy fur!”   And off he went, only pausing for a brief comment here and there from me.  As we neared Quik Trip and the Paradigm van waiting in the parking lot, Aaron said, “Mom, tell them that I got up at 5:09.  Tell them about my stomach and my head and that I’m tired.”   I said, “So you want me to tell them that you got up a little after five?”  Of course, Aaron replied with impatience, “I got up at 5:09!!!!” 
 
Aaron played the part of being very tired as I conveyed to the driver that Aaron had gotten up at 5:09 and didn’t feel well, etc., etc.  He was satisfied then, got in the van, and off they went.  Off I went, too, driving to Sam’s and thinking of our morning.  I feel like I am walking a tightrope nearly every day.  Hearing that Aaron was up so early……..at 5:09!!…………..was how I started my tightrope walk today.  One foot gingerly in front of the other as I heard him stirring and then as I went downstairs, hoping that he wouldn’t hear me.  Silly me!  Of course he heard me.  I headed across my tightrope as he came out of his bedroom and as I helped him get back in bed.  I was steady on the rope as I heard Aaron sleeping again, but I wobbled when he came downstairs an hour later.
 
I kept my balance as I suggested breakfast and talked Aaron into eating something, and as we talked about his unique way of watching his recorded programs.  Things got tricky when I mentioned taking a shower and getting ready.  Then I really felt like I was going to fall off the rope when Aaron pointed me to his sign and abruptly shut his door again.  Wobble………get my balance………wobble………..get my balance.  Such is life with Aaron.
 
I couldn’t completely breathe a sigh of relief until I was driving away after conveying his message to the driver, being sure I got the 5:09 part correct.  This balancing act covers the complete spectrum of Aaron’s life………from serious new medicine issues and behavior problems and seizures………to whether he wants to eat a somewhat healthy breakfast or will refuse good food………to being told to stay out of his room.  Always balancing our decisions about Aaron and our direction with Aaron, wondering if we’re going to fall off that rope at any given time. 
 
We balance our reactions to Aaron as well, struggling to be patient and loving while knowing at times that we need to be firm and strong.   We balance our time spent with Aaron as opposed to our time spent doing what we want to do……without guilt.  We balance whether to listen to Aaron’s same stories or same issues over and over and over again, or whether to pull the plug and tell Aaron that he just needs to quit telling us this same thing….AGAIN!  And as time goes on, we will need to balance how to protect Aaron with how to release him. 
 

 

I’m just very thankful that we have God to steady us when we start going sideways.  Thankful that we have good family and friends who give us love and support and advice and laughter.  And very, very thankful that even if we do fall off the rope……….underneath are God’s everlasting arms to catch us and to gently lift us back onto the rope……….where we will once again put one foot in front of the other and once again walk this tightrope of life with Aaron.

Home Again, Home Again

Gary and I just returned from a wonderful trip to Texas.  We spent the weekend at the AAA Texas Nationals NHRA race at the Texas Motorplex…..where I went from being “Miss woman who likes to watch Andrew on TV” to being “Miss woman who likes to watch Andrew in person.”  Aaron hasn’t thought to say that yet, but it’s probably just a matter of time before that comes out of his mouth in some form or fashion.  We also finished the weekend perfectly by getting to have dinner with Andrea and Pete.

Zach, whom we’ve known for years, came over to spend the weekend with Aaron.  Aaron has, of course, talked and talked and talked about the weekend and all the fun they had.  They went to Chipotle’s, which was new to Aaron…….and which he keeps calling by names like Alfredo’s and other Italian sounding names.  He described what they ate and what it had in it and the soft shells and how it tasted……and that’s just one place that they went, and one thing that they ate.  He has expounded on everything they ate and everywhere they went, trust me.  He will continue to do so until every topic is thoroughly exhausted……….and Gary and I will be, as well.  Of course, Aaron doesn’t care about that.  I am sure that his favorite Bible verse, if he knew of it, would be, “He who has an ear, let him hear….”   And to think, we have two.

Aaron was very happy that he and Zach took Jackson on some walks around our circle.  I don’t often let Aaron hold the leash.  I just don’t think about it a lot, but Aaron was very thrilled that Zach let him hold the leash.  “Mom!” he exclaimed.  “Zach let me hold the leash!!  How come he’s more trustable than you?” 

Zach also took Aaron to the Renaissance Festival on Saturday.  He texted me some pictures of him and Aaron and some friends.  Aaron laughed when I showed him the pictures, and then launched off into how weird things were at this “festibal,” as Aaron calls it.  We’ve discussed castles, bows and arrows, spears, spears of fire, kings, queens, knights………..you name it.  “Mom?” he asked.  “Can women be knights?”  I told him that I didn’t think so.  “Well, would you want to dress up as a lady knight?” 

No, Aaron, I would not want to be a lady knight.  “Oh yeah,” he replied.  “I bet you’d like to be a queen.”   Absolutely, Aaron!



As Aaron crammed salad and pizza down for supper on Monday, he said to Gary and me, “I noticed that Zach talks like, ‘Cool dude.’  Why does he talk like that?”  So we told Aaron that guys that are Zach’s age just talk like that.  I know.  We’re so profound.

Aaron thought for a minute and then continued, “Zach said, ‘That’s cool, bro.’  What’s bro?”  Gary told Aaron that bro is another word for brother.  And of course, literal Aaron in his flat voice responded, “I’m not his brother.” 

We know you’re not his brother, Aaron, but that’s just the way guys talk. 

But to Aaron, this makes no sense.  You should only call someone bro if they are truly your brother.  After another moment of thinking, Aaron said, “On Sunday, Zach said ‘You can watch whatever you want on TV, bro.’ ”  

There was a short pause and Aaron informed us, “I’m not bro.”

Gary and I laughed at Aaron’s rigid predictability as he sat there trying to figure out this bro business.  I will always be amazed at how Aaron notices everything……..absolutely everything.

Like this morning.  Aaron had been outside in the mulch as I finished getting ready to take him to meet his group.  I heard the door slam shut as he came in the house.  Perfect timing, I thought, as I hooked up his computer keyboard.  He yelled, “Mom!  I have something to show you!”  He came up the stairs and in to his room just as I turned around………..and saw him right behind me, holding up a little baggie.

And inside the little baggie was a little mouse………a live MOUSE!!!!  Oh my word!!  Aaron knew that last week I had seen a mouse in the garage, and so he thought that this was the mouse……..but the mouse I saw had already been caught in our mouse trap, which he didn’t know, and that mouse was history.  This new mouse was just a tiny baby.  Aaron said he found him just outside the garage door, so he used a stick to put him in the baggie.  Aaron was quite proud of himself for finding the mouse.  He held up the baggie and I could see the little fellow crawling around inside the bag.  Gulp!

I let Aaron walk out in the back yard away from the house and let the mouse go.  Aaron watched to see if he was moving and when he was satisfied that he was OK, he walked happily back to the house.  He washed his hands and off we went to meet his group, and to talk about mice and anything else that came into Aaron’s mind. 

Aaron, whom as you know is very blunt, has said several times that he wished Gary and I had not come home and that Zach was still here.  This doesn’t hurt my feelings.  In fact, I’m very glad that Aaron had so much fun with Zach and that Aaron adjusts well to being with someone else other than us.

I also wish that Zach had been here this morning so he could have handled the mouse deal.  Why did that have to happen on my watch?! 

It’s good to be home, though……….mouse and all! 

You Just Like Andrew

I’m sitting here thinking of our weekend and thinking of our children.  Sometimes I still wonder where the time went.  Our three kids are all adults now.  We watch Andrea and Andrew from a distance now as they live their lives.  They both live hours away from us,  and while that can sometimes be sad it’s also very fulfilling for Gary and I to see them so happy in the lives that God has given them.  Andrea is in graduate school studying genetics, and Andrew was recently hired by Cruz Pedregon Racing as a member of the pit crew. 

Aaron, of course, still lives at home with Gary and me.  Even when he may someday move out of our home, he will still be under our close care and supervision.  Such is life with a child with special needs.  Thinking back on the years of raising our children, it seems that times with Aaron stick in our memory the most.  With Andrea and Andrew, we had all the typical home schooling and life activities………..music, sports, friends, church.  With Aaron, we started out with those things but as time went on, he became less and less interested.  Life for Aaron became harder instead of easier.  He had such a difficult time with making friends or with wanting to be involved in outside activities.   Or sometimes he wanted to be a part of a normal life but he just didn’t know how to do that, or simply couldn’t meet the expanding expectations of a person who is supposed to be growing into adulthood. 

It’s hard for family life to be normal when parents are trying to manage and understand an issue as complex as autism.   Throw epilepsy in the mix and it becomes very muddled.  We had many frustrating days when Aaron was a teenager and then in his early twenties.  One issue that kept coming up was jealousy.  It was sad for Aaron to watch his siblings move on with life while he was stuck with doctors and medicines and surgery and hospital visits.  Yet in many ways Aaron took it all in stride, even enjoying the time and attention that these events afforded him. 

Aaron has always had a special relationship with Andrea.  First she was his buddy, his special friend and playmate when they were younger.  Now he looks to her as a mother figure in many ways.  He misses her since she’s moved away, and often asks, “Mom, when is Andrea coming over?”……….as if she only lives a few blocks away and just comes over every now and then.  She and I were on the phone the other night.  Aaron walked in the room and when he realized that I was talking to Andrea , he wanted to talk to her as well.  I put the phone on speaker and off went Aaron, bending over and rubbing his hands together in delight as he nearly yelled.  “Andrea!  Is there such a thing as deadly mutant viruses?!!”   No “Hi, Andrea!  How are you?  I miss you.”   We would faint if he ever expressed such emotions verbally, but Andrea and I both through our laughter knew that Aaron was happy to talk to his sister.

Aaron’s relationship with Andrew has been more complex.  Aaron has always shown some jealousy toward his brother.  I wonder if it’s something to do with both of them being male.  It seems that there is a competition there on Aaron’s part that he has just never known how to handle.  As they got older, Aaron had fewer friends while Andrew had more friends.  Aaron was very jealous of Andrew’s friends who would come over, especially if they spent the night.  Aaron loved sleepovers and always wanted to do that.  Who could ever forget the day that a female friend of Andrew’s stopped by for a quick visit?   Aaron stood at the top of our stairs and yelled down, “Andrew!  Is she sleeping over?!”  Poor Andrew.  Who could forget all the rude comments that Aaron made to Andrew’s guy friends that would be at the house, or the time that Aaron hit Sam in the stomach?  Or the day that Andrew got his driver’s license and Aaron saw him drive the old truck in the driveway that we bought him……..and Aaron quietly said, “Andrew drives?  I wish I could drive.”

We had some good times with Aaron this past weekend…….just normal life but things that Aaron enjoys.  He went for a haircut and even got a shampoo…….something he’s never done before and which delighted him a lot.  We went to Dillon’s afterwards for him to get a Cheddar Pasta Salad and some of his favorite jelly beans.  He ate dinner with Gary and me, talking between bites of his pork chops and fried squash that he loves.  We played Tri-Ominos and we watched Wheel of Fortune.  He ate some pizza, and then on Sunday evening he tried a new dish at Taco Bell as well as his tried-and-true hot fudge milkshake from Sonic.  He talked our ears off, as always, and he did his quirky things that make Aaron…..Aaron.  Like putting his peanut jar in his ever-present bowl on top of a plate, and then eating the peanuts out of the jar inside the bowl on top of the plate.  That is SO Aaron!  And he found my restaurant coupons that I’ve told you about…….the ones that I don’t want him to cut……….and that I found all in a pile……….CUT ON THE DOTTED LINES!!!!   Oh, Aaron.

In the midst of life with Aaron, we enjoyed hearing about Andrea’s research and her time on Saturday with her boyfriend Pete and his parents.  We also got to watch the NHRA race from Charlotte, and to see Andrew on television.  This part of Andrew’s life now is something that we’ve tried to downplay in front of Aaron, but he found out about Andrew’s new job and the fact that he’s on TV sometimes.  Aaron has seen Andrew on the screen.  Aaron didn’t show much reaction to it the first time.  This past weekend, he again saw Andrew and he again didn’t act excited……but I did hear him at one point mutter, “So what?”  Oh boy, I thought, here we go.

On Sunday night I went in Aaron’s room to say goodnight.  He was sitting up in bed reading his Handy History Answer Book (of course!) with his pillow just right and his back scratcher there beside him and his other pillow on his lap and his stuffed snake that used to be Andrea’s stuffed snake laying there beside him and his covers all wrinkle free and just so-so (of course!).  I hugged him and I listened to his usual talk and I had a hard time leaving the room because every time I would ease over toward the door he would say, “Mom!  Wait!”  Then he would quickly think of something else to say or to ask in his attempt to keep me there as long as possible.  Finally I said a final good night, and as I closed his door I heard him say, “Good night, Miss woman who wants to watch Andrew on TV.”

There it was, that old green monster of envy coming out.  The next morning, yesterday, Aaron was talking to me as I got my make-up on and he said, “You just like watching Andrew on TV.  And you just like talking to Andrew when he comes home.”   I tried to explain to Aaron how little we see of Andrew and how happy we are for him, and that we do enjoy seeing him on TV.  But I also reminded Aaron of the time spent with him and the love that we have for him, wondering if any of what I was saying was penetrating his hidden heart. 

I thought of how I walked into Aaron’s room over the weekend and tapped him on his shoulder to tell him that we could play Tri-Ominos.  He looked up at me with his headphones on as I sat on the bed right beside him.  He made very direct eye contact with me, and with warmth and feeling he said, “Mom.  I was waiting for you.”   Something about his look and that comment just went straight to my heart. 

I smiled and I gave him a quick hug………too much hug was not what Aaron wanted at that point.  And I nearly cried.  He looked so needy and so vulnerable.  “Mom.  I was waiting for you.”  Oh Aaron, you don’t have to wait for me.  You have me always.  I am always here for you.  You don’t have to be doing genetics research or to be on TV to be important or special to us.  How I want him to know that he is loved and he is treasured for who he is………even when he’s driving us nuts!  That is Aaron in all his many facets.   I hope that he realizes that going to get a haircut and visiting Dillon’s and eating together and playing Tri-Ominos and watching Wheel of Fortune are just a few of the ways that we say, “I love you.”

So is making him the pretzels this morning that I bought a few days ago, letting him watch me bend the dough into that pretzel shape.  And helping him get all set up in his chair with his blanket over his legs and his cups of coffee beside him, his hot pretzels fresh out of the oven on a plate in his lap, his napkins and toothpicks close by as well……….and then hearing him ask, “Mom, will you bring me a knife and a fork and a spoon?  A knife….AND a fork……AND a spoon?  All three……a knife, and a fork, and a spoon.” 

Yes, Aaron, I will bring you a knife……AND a fork……AND a spoon.   Even though you do NOT need a knife……..or a fork……..or a spoon……… while eating pretzels.  But I didn’t remind him of that fact, because I know that Aaron DOES need a knife and a fork and a spoon, for some reason that we cannot quite understand but that we accept. 
  
It’s just another way to demonstrate to Aaron that he is loved and that he is accepted.  I hope that he sees that and feels it in his heart as he gobbled down the pretzels……..and never touched his knife or his fork or his spoon. 


But they were there, within reach…….and so are we.

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!