Category: Epilepsy

Aaron Not Talking?

Night before last was a rough night for Aaron.  He had several seizures………… and while this is nothing out of the ordinary for him, these seizures were stronger, it seemed.  It wasn’t long after I had lain back down that I heard through the monitor in our room the sound of him rustling  around.  As I got out of bed I heard a loud thump and knew that he had fallen.  I found him sitting on the floor at his open bedroom door.  He was so out of it that he was hardly aware of what was going on.  I finally figured out that he wanted to go to the bathroom, and I also realized that he needed to change his pants after this last seizure.

As I helped him to the bathroom, I saw that Aaron couldn’t talk.  Sometimes these hard seizures have that effect.  He was trying so hard to communicate with me but the words wouldn’t come.  It was as if his mouth wouldn’t even open.  He tried and tried to say a word, and finally a word would come out after great effort.  I was able to put two and two together as he let me know that he needed to go to the bathroom, and then later let me know that he was in some pain and felt like he couldn’t breathe. 

I didn’t let him know how much that scared me……….the pain and the breathing issue.  I got him settled back into bed, pulling his pile of covers up around him just the way that he likes.  I sat there with him for awhile, watching his breathing and finally watching him fall asleep.  And I thought about how he reacted during the time in the bathroom and then as we sat on his bed, and he couldn’t form words.  He didn’t get frustrated, but instead he would just look at me as if he was asking for my help………and he would smile.  Over and over he would give me that look, and then smile.  It wasn’t a “Ha-Ha, I think this is funny” smile……….but instead it was like a trusting smile…….a sweet “It’s up to you now, Mom” smile.  It was up to me to finish what he was trying to say; to understand what he needed; to give him comfort and help when he needed it.

Aaron can be so rough and gruff much of the time.  He thinks that it’s funny to poke and pinch and give us whacks on our back or rear end.  He’s loud and sometimes says things that irritate everybody, and when corrected he says that he thought it was funny.  So when Aaron is vulnerable and needy, it touches a place in my heart that makes me realize just how fragile he really is.  His health because of these seizures is at the forefront at that moment, but also his frustrations and fears are revealed in his eyes.  And in that smile.

His last seizure was around 7:30 in the morning, and soon afterwards he roused up enough to want to come downstairs.  He made it down the stairs, which scared me again since he was so wobbly, but nothing would deter him from what he wanted.   And again, he couldn’t talk but kept giving me that look and that smile.  It was a tough morning as he tried to get comfortable.  He had a bad headache and he threw up.  I finally rubbed his back and tickled his arm, and he was able to tell me that it felt good.  He relaxed and dozed off and on, and finally woke up able to talk pretty well.  “Do you want me to eat something?” he asked.  I knew he was telling me that he was hungry, so when I asked what he wanted he immediately asked for tomato soup.  “Tomato soup?” I asked.  “Are you sure?”  But Aaron was very sure, so I fixed him the soup and then went to help him up.  As I pulled on his arm, he said, “You’re stretching me.”  He laughed and I could tell that he was feeling better.  He ate his soup, and then took his pills.  “Are you poisoning me?” he said…….and laughed again at his funny joke.

He lay back down and fell fast asleep.  Later I heard him stirring and then heard, “Mom?”  I asked him what he wanted and he said, “Well.  Did the fog go away?”  We talked about the fog, and it wasn’t long before he offered this observation:  “Mom, since you wanted me to lay here every now and then, do you know what I was doing?  I was gassing!”

This is when I knew that Aaron was back.  Yes, back full force and in all his honesty.  Later in the afternoon he went with me for a quick trip to Wal-Mart, and then to get tacos for him to take home and eat……….with his three forks and his knife that he didn’t use and the napkins and his toothpicks………you know the routine now.

Of course, he talked…….and talked some more.  He talked about fish and about lobsters and about snoring and about losing weight and about someone he knows that has not lost weight and who still snores.  He talked about lots of other things, too, as always.  I was so sleepy that between the driving and his talking I’m surprised I was able to find my way home.  But find my way I did.

I’m glad that Aaron found his way back from the effects of the seizures, and even glad that he was talking again.  I keep thinking about that helpless smile he kept giving me and the look in his eyes when he couldn’t talk.  Sometimes I say, either out loud or to myself, “Oh, Aaron.  Just don’t talk for a few minutes!”  But when he really couldn’t talk, I so wanted to hear him speak.  Again, be careful what I wish for, right?

Even his talk of gassing was good to hear……….sort of.  Oh, Aaron!

Get Lost

I wondered how Aaron would do this morning with having to get up to go to his day group after three fun days off.  On his days off he was up early, in the shower without having to be told, and very happy first thing in the morning.  I dreaded what this morning would hold as he faced reality.  Aaron likes his day group, but if given the choice I do believe that he would stay home every day.

It didn’t help that Aaron had two seizures during the night.  I was surprised, therefore, to hear him get up on his own this morning and go to the bathroom.  However, he went back to his room and shut his door – which is not a good sign at all.  He was either feeling bad from the effects of the seizures, or he just didn’t want to leave the house.   I waited for awhile until it was finally time for him to really start getting out of bed and getting ready.

I softly knocked on his bedroom door, and then I opened it and stepped inside.   He was all snug under his multiple covers…………and he did not want to be bothered.  I spoke to him, and then left.  I repeated this action several times until I finally got a reaction from him.  “Leave me alone,” he muttered.  And so it went for a few more tries.  I decided not to say anything about his seizures that he never remembers.  I knew he would latch onto that as a reason to stay home.
 
I became a little more insistent as I continued to go in his room and tell him to get up.  I also tried to interest him in his coffee that was cooling downstairs in the mugs he likes, and also in the applesauce that I thought he would want.  Finally, as I turned once again to walk out of his room, he perked up and asked, “Mom?  Did you see what was on my door?”  And as I looked up on his door, there on his Star Wars poster was a pink post-it note on which Aaron had scrawled a note to Mom.  He has done this before, but his notes rarely say the same thing.  I peered up at the note and saw what he had written.

Get lost.  I just shook my head and smiled as Aaron watched me and tried to gauge my reaction.  He laughed then.  He was quite proud of himself and also thought that his little note was funny.  I walked up the hall as I said, “Very funny, Aaron.  Now I’m getting lost and I want you to get up!”

Oh, if Aaron only knew how many times I’ve wanted to do just that……..to get lost.  Saturday evening was one of those times.  Aaron’s heart was set on watching Wheel of Fortune with me.  I thought I had enough time to do just a little ironing before Aaron’s favorite game show came on, but I wasn’t quite finished when I went in to Aaron’s room and told him to go on down and turn the TV on.  He set aside what he was doing, and went downstairs…….only to find that I wasn’t there.  “Mom?  Mom?  MOM!!”  he yelled.  He barreled upstairs to find me finishing up a shirt I was ironing.  One little shirt.  But Aaron was very unhappy that I wasn’t downstairs getting ready to watch Wheel of Fortune with him.  I told him that I would be down in just a minute, but to Aaron this was totally unacceptable.  He quickly escalated into yelling……..and I was not in the mood for this behavior on this day that had previously been so pleasant. 

I then did the thing that never, ever works.  I yelled back.  But Aaron cannot be outdone in these battles………a fact that I know but that I disregarded in my complete frustration.  No more details are needed, but I will say that I just totally lost my temper.  For those of you who might see me as the most patient parent on planet earth………..your bubble has just been popped.  I can get angry with the best………..or the worst……….of them. 

I’m not proud of this incident and have even wondered if I should write about it.  But I want to be honest as I portray life with an autistic adult child.  I am imperfect.  I get tired and frustrated and angry.  Sometimes other concerns are weighing me down.  When Aaron has a breakdown over something so selfish as me not being there to watch Wheel of Fortune at the moment he wanted me to be there, then I just might cross that line that leads to my own breakdown. 

I took a little time to remove myself from Aaron and from the situation.  Talking to Gary helped, as did getting some fresh air and collecting my thoughts.  I also asked God to forgive me, as well as Aaron.  But Aaron is so matter-of-fact about an argument.  He can resume his life as if nothing even happened, while I am in an emotional heap.  I was fighting guilt while he just wanted to know if we could play Skip-Bo later or tickle our backs.  I wish I could pick up, dust off, and move on as quickly as Aaron can. 

I know this is part of life that any parent faces.  A parent of a child, adult or not, with special needs must also balance figuring out what it causing the emotional outburst of their child with trying to maintain some calm and discipline…………..for themselves as well as for their child.  Sometimes it’s just too much, especially when our minds are tired or overwhelmed with other issues as well.  I know not to let the guilt of my lack of control be something that I allow Satan to use in order to discourage me.  I accept God’s forgiveness, even as I know I must forgive myself and close that chapter.

Get lost, Aaron wrote this morning.  Ah, if only life was that simple!  When Aaron starts escalating into anger, I wish I could hold up a Get Lost sign that either would apply to him…….or would allow ME to get lost until he calms down.  But I can’t do that, so I buck up and deal with it………with God’s help and with lessons learned from years of experience. 

I’ll just leave Aaron’s Get Lost sign on his door for awhile to remind me that it’s best not to lose the lessons we learn and the growth we experience as we travel this journey together.  

Do You Want to See My Bruise?!

Last Friday morning, Aaron and I headed to the lab where he gets his blood work done.  His levels need to be checked since his unexpected seizure that I wrote about in my last blog……..the seizure that made him fall backwards and sustain a nasty bruise on his upper back.  Aaron loves going to the lab and for that I am very thankful.  He doesn’t mind needles……he never has…….and this is indeed a huge blessing.  It would be heart-rending to see him fearful of a procedure that he needs so often. 

Aaron loves time in the van with me or with Gary in his truck.  We are captive audiences, after all, and have no choice but to listen to his constant talking in the midst of whatever favorite CD he has chosen.  As we passed Walgreen’s, Aaron saw the sign that asked the question:  Have You Had A Flu Shot?  Of course, Aaron felt compelled to answer this question because naturally every question deserves an answer in Aaron’s mind.  And his answer must be shared with whomever is willing to listen.
 
“Mom, that sign talked about a flu shot.  Have I had a flu?”

Well, Aaron, you don’t have “a flu” like you have a cold.

“So what is a flu?”  he asked.

I explained what THE flu is and why it’s different from having A cold………..and realized that only with Aaron would I even notice this distinction.  It makes sense.  Why do we say THE flu and A cold?  Oh my………I’m thinking like Aaron again!

I was rather proud of my explanation as we drove along, and then when I finished and hoped that Aaron would appreciate me for clearing up this confusion about THE flu and A cold – he said, “If I go to Burger King again, can I have a number 2?”

I was immediately jerked from Walgreen’s to Burger King with the blink of an eye!  I’ve learned to follow Aaron as he transports quickly from topic to topic, but I still smile at the randomness of his topics.  He was still relishing his special Burger King supper with Dad the night of his seizure.  Gary was concerned that night because Aaron was confused about how to use the drink machine, an art that Aaron has perfected for sure.  His confusion was alarming to Gary.  Sometimes seizures have that effect and we wonder about long term issues.

Anyway, I laughed as I heard Aaron’s question and realized that he assumed……….as always…………that I would know immediately what a Burger King number 2 meal contained………..as opposed to a Wendy’s meal number 2 or a McDonald’s meal number 2.  Of course, Aaron has recorded this info in his brain.  Hasn’t everybody??!! 

He continued, “Do you want a number 2?”  I asked him to remind me of what a Burger King meal number 2 contained before I committed.  This kept Aaron busily talking until we arrived at the clinic, parked, and began walking toward the door.  Aaron had chosen another favorite topic of late of which to chatter……Neil Armstrong.  Does Neil Armstrong have anything at all remotely to do with a Burger King meal number 2?  Of course not!!   

“Mom, I was reading about Neil Armstrong on the moon.  Did you know that when he walked on the moon he said something?”

Yes, Aaron, I knew that.

“Did you know that they didn’t put an ‘A’ in what he said?  He really said………..”

And as we checked in to the lab and sat down, Aaron continued to inform me of what Neil Armstrong had really said and why it was so significant that “they” had left out the ‘A’ in what Neil Armstrong said………….and he continued in this vein (pardon the pun) until someone walked into the waiting room that I know.

Aaron perked up as I spoke to this woman whom I know.  Ah, fresh ears!  If Mom is going to talk with familiarity to this woman, then surely Aaron can, too!  So at the first opportunity, as I told her why we were at the lab, Aaron expounded on his seizure occurrence…………and anything else that popped into his ever active mind.

I was called to the check-in desk to answer some questions, so as my back was turned and I answered the questions, Aaron had decided that this friend with the listening ears would surely want to see something special.  As I turned around to walk back to my seat, there stood Aaron in the middle of the waiting room.  He was preparing to lift up his shirt and show this kind, unsuspecting woman his prize bruise.
 
Now Aaron has done this before………….lifting his shirt to show someone his VNS surgery scar on his upper chest.  He does this very quickly, before we can react, and the effect is amazing.  We have never received any one’s therapy bill after this event, so that’s a comfort, but still I know that seeing Aaron’s full stomach and chest without warning can be rather shocking.  And here he was, in the middle of a waiting room with other people around, preparing to lift his shirt and show my friend his bruise.

In my mind I was yelling, “NOOOOOOOOOOOO!!!”  but in reality I hurried over and gently told Aaron no…………do not lift your shirt to show your bruise.  He thought that this was indeed a waste of a perfect opportunity while I thought that I was a very blessed mother for being able to turn around when I did and avert this shock to an entire waiting room full of wide-eyed, puzzled patients. 

The fake farting noise that Aaron made later as we exited the building……….and that echoed down the hall……..was mild in comparison to the near-exposure that we had endured in the waiting room.  We were, after all, walking away and leaving it all behind (pardon another pun).

Dear Aaron – you have no idea of the effect you have on people.  I will be very relieved when I can tell you that your bruise is gone and can no longer be seen………by ANYONE!!!  

The Personal Gift of Aaron

We were talking at supper last night, as we watched Aaron stuff pizza in his mouth, about how quickly Christmas zoomed by this year.  It’s like a big meal that takes hours of planning and prep, and then is over in a few minutes.  We had a great time having Sandra, Gary’s sister, here for her fifth year in a row.  We love having her come…………we’re surprised that she keeps coming!  Not really, but we laugh at all the mayhem that sometimes ensues at Christmas with the shopping and the cooking and the wrapping and the everything else.  Plus this year we had Darcy,  Andrea’s little dog, thrown in the mix along with our Great Dane, Jackson.  And Aaron…….always our Aaron……with his many facets that either delight or depress or demand.
 
Aaron was still trying to figure out Christmas carols as our holiday preparations were gearing up and I had Christmas music playing all day long.  Literal Aaron thinks that some of the words to our carols are quite ridiculous.  We were playing Skip-Bo one night and I had Pandora cranked up to a favorite Christmas station when he heard The Christmas Song.  When the phrase “……to kids from 1 to 92….” was sung, I heard Aaron go, “Hmpfff!!”  And I prepared myself for either laughter or rolling of my eyes as I awaited his comment.

“People at 92 years old aren’t kids, right?!”  I began to explain what that phrase meant when he continued with his commentary on this ridiculous song – “I think they’re warning people who are at the age of 92.”   ” Warning of what?” I asked.  But he really couldn’t explain what he thought and he certainly wasn’t getting my reasonable explanation, so finally he just admitted that he really didn’t get it, even as he repeated what he so often says about our weird world………..”That’s DUMB!”

He enjoyed “Ding Dong Merrily on High” more, though, because at least he thought it was rather funny.  “That ding dong song sounds like an alarm clock!”  he blurted as he laughed at yet another silly Christmas song.  I laughed, too, as I looked once again at our mixed-up world through Aaron’s eyes.

Aaron’s Aunt Sandra makes beautiful scarves.  She brought some for Andrea and I to have.  Aaron saw them on my desk the next morning and walked down the hall, carrying the pile of scarves.  “Mom!  Did you build these for me?” he hopefully asked.  I assured him that I did not build them, but that Aunt Sandra had made them for me.  He was disappointed………such interesting, curly scarves would have been fun for him to own, he thought.  “Are they like the Hawaiian women wear and then they dance?”  he asked with even more hope.  And again I assured him that they were not Hawaiian scarves and that I definitely would not be dancing a Hawaiian dance when I put on a curly scarf.  He laughed at this funny thought.

Aaron did very well with going to his day group when Sandra first arrived.  He often wants to stay home because she is here, but this year he was more controlled and willing to go.  Having pizza one day with his friends at Paradigm was a great pay-off.  He excitedly told me about it when he barged in the door that afternoon.  “Mom!  We had pizza!!  First I had one piece and then I had four!  They wouldn’t let me have a fifth.”  I reminded him that no person, especially him, needs five pieces of pizza.  And he is further convinced that our world is indeed without any understanding.

The next day we had a little snow and I knew that Aaron would not like this.  He doesn’t want to get out in the snow, often acting like an old man who can’t bear the thought of the cold and the mess.  Sure enough, I heard him knock on my bedroom door as I got ready and then heard his low, depressed, monotone voice as he said, “I do not want to leave this warm house.”  He was very flat………very resigned……..very certain about this fact.  I dressed and then went out in the hall, where I found his door closed.  I opened his door and found Aaron in his bed, all covered in his warm blankets……….but smiling as I patted his shoulder.  His smile showed me that he was finding this all to be funny and I was relieved that we were not going to have a small war over this issue of the messy, cold snow. 

He did go to Paradigm that day, happily, and later in the week he ended the season there with a Christmas party.  He came home very animated as he held up his Wal-Mart gift card and his stocking with his name on it………..and which he decided that he wanted to give to visiting Darcy, who didn’t have her own doggie stocking.  He liked the food, too, especially noting some fascinating cookies – “Mom, we had cookies that had whiteness on them!”

Christmas Eve was, well, interesting.  Aaron was very happy about the bustle and activity of the day.  He came down from his room from time to time to talk, of course, or to play with Darcy or Jackson.  He was very intrigued by Darcy’s dog toy.  “Mom!  Darcy’s dog toy has warts!”  And he was also fascinated by the Polish sausage that I was putting in my spaghetti sauce.  “Mom, are you putting that bent hot dog in the spaghetti?!”


Andrea was not home during the day, as she was visiting her friend James and his family on their farm near Salina.  Aaron asked where she was and he did not like the fact that Andrea was not at home……….and he definitely did not like it when I told him that James would be joining us for supper and for the evening of games and fun.  It was hard to tell why he reacted so strongly, but I believe he feels an ownership of Andrea.  He sees her as a mother figure who is there for him when she is home.  James was an intruder who took Andrea away from him……..a stranger who was going to make life uncomfortable for Aaron during our special evening.

Sure enough, Aaron was less than enthusiastic to meet James.  During dinner, as we talked and laughed, Aaron kept muttering comments to me about this situation.  Thankfully, Aaron didn’t have a full blow-up about James, but he was certainly not happy with this turn of events.  It would be so helpful if Aaron could just express his feelings verbally…….but he usually can’t do that, at least not right away.  So we tensely muddled through the moment, hoping that Aaron was not too terribly embarrassing to us or to our guest.  And what a blessing that Andrea is very understanding of Aaron, and was able to smile and put us all at ease.   

Later we played Christmas Bingo, and once again Aaron was very unpleasant.  He doesn’t like parties, as he sees the laughter and the silliness that may ensue as being abnormal.  Yet he wanted to join us, even as he sat there making comments about how Gary called out the Bingo moves and being very rude when we tried to calm or correct him.  We were honestly relieved when Aaron went back up to his room and we could continue the evening without worrying about Aaron telling us all very ungraciously about how weird we were and that we needed to shut up!

Christmas day found Aaron a little unnerved because we decided to open gifts in the living room instead of the family room.  Change!!  And change does not go over well with Aaron!  The family picture in front of the Christmas tree was an exercise in futility for us, as Aaron did not want his picture made when it was just time to get on with the gift opening.  And opening gifts, for Aaron, involves a process.  He must have his little Swiss Army knife for cutting the paper; and he must open each DVD or PC game right away with his knife;  and he must put the DVD wrappings and tape in his trash can from his room that he has sitting right beside him.  He shows very little emotion as he continues his mission of opening his presents from beginning to end……….and then it is over and he must move on to the next day’s event.

The day after Christmas, Aaron was up and about as usual.  He drank his coffee and he took his pills and he talked a lot as always.  He was upstairs talking to Andrea, as normal as ever, and then walked down the stairs………..and we heard an awful crash.  Aaron was having a seizure.  He had fallen backwards at the foot of the stairs and was laying there on the hard floor, seizing.  It was terrible and was very frightening to all of us.  Aaron’s seizures have been in his sleep for years now, so this breakthrough seizure was very surprising.  He finally stopped and Gary placed a pillow under his head as I covered him with a blanket.  Aaron is too big for us to move, so he slept there for awhile as he recovered from this episode.  We checked him for blood and we worried about a concussion, but later when he was able to be helped to his bed we felt that he was all right. 

He has an ugly bruise and some scrapes on his upper back from hitting a piece of furniture when he fell.   We are very thankful that there was no major injury to him from such a hard fall.  I’ll be taking him to the lab for some blood work to check his levels.  Keith, Aaron’s nurse practitioner, told us not to be alarmed at this seizure and not to assume that these will continue.  We hope this is true.  This episode has made us face an element of fear that we haven’t had for a long time.  It makes us realize how serious seizures are and it jerks us back to the reality of how fragile Aaron’s health is.  How fragile, and how very dangerous and serious.
   
And our love for Aaron was confirmed as we struggled emotionally, watching him lay on that cold, hard floor both during and after his seizure.  He yanks us around a lot…….one minute we are laughing because of Aaron and the next minute we are so frustrated with his behavior.  The frustrations melt away when we see him so vulnerable. We know that life for Aaron will never be normal or easy.  Life for Gary and I will never be normal or easy.  But it’s the life that God has chosen for all of us……….for Aaron, for Gary, for me, and for Andrea and Andrew.  I pray that we will trust God as we travel this road, and that we will bring glory to God as He enables us to move forward.
 
Christmas is a season of light and of hope.  Aaron points us to that light and hope in ways of which he is totally unaware.  Whether through our joyful laughter or through our gritted teeth, Aaron does have his ways of pulling us back to Him on which our dependence lays.  And I believe that Aaron will receive a great reward for fulfilling that purpose of his life. 

 Christmas is also a season of gifts………..and Aaron is our gift, one which we continue to unwrap and try to understand every day.  He comes with a no-return policy and on some days, that’s a very good thing!  On Christmas Eve, I told Aaron not to come in the bedroom where I was stuffing the stockings.  He replied, “So you said you were doing my personal present?”  He was sweet and hopeful. 

God has given us a personal present in the gift of Aaron.  Even on the hard days, we are especially blessed. 

We love you, Aaron!

28 Years Ago

Today is one of Aaron’s favorite days of the whole year.  Today is his birthday!  Aaron is now officially 28 years old!  His countdown is now over…….the long anticipated day is finally here and he can continue his celebration that actually began yesterday with a special lunch, and then being taken out to get ice cream last night by the Atkesons.  Aaron has never lost his child-like enthusiasm for his birthday.  He relishes the fact that the day is all about him, although he’s not annoying about it.  He’s happy and exuberant for sure, and sometimes uncomfortable with too much attention……yet he would be very disappointed if that attention never came. 

I’ve been thinking back to that time 27 years ago when Gary and I were wanting a baby.   We were nearing our 5thyear of marriage when we found out that I was pregnant.  That was such an exciting time for us!  When I went into labor late on that November night, three weeks before my due date, we were surprised and a little scared.  My labor lasted only about 5 hours and there he was……..our baby boy.  A son!  We named him Aaron Daniel, and I was positive that no one on planet earth had ever given birth to a baby as beautiful as our Aaron.  No mother could have been prouder and more thankful than I was.  Those were my thoughts as I looked at this little tiny bundle of boy………our Aaron Daniel.  He only weighed 6 lb. 4 oz. at birth, and was even lighter than that when we took him home with us. 

 

Aaron grew and thrived normally, never giving us pause for alarm in any way.  He was bright and curious, and as cute as he could possibly be.  Aaron knew all of his letters, randomly, before he was two years old.  Gary was so shocked one day as he held Aaron on his lap before his second birthday.  Gary was reading a magazine and suddenly Aaron started pointing to the letters on the page that Gary was reading.  Aaron was telling what each letter was and in his amazement, Gary called urgently for me to come.  I thought that Aaron must have hurt himself, so I ran downstairs to find Aaron safe………..and calling out letters as Gary would point to them.  We laughed and cheered for Aaron, and Aaron was delighted……..though he wasn’t quite sure why.

 
 
 
 

As Aaron grew, we noticed that he was sometimes a little different from other children.  Still we weren’t alarmed.  His funny clapping seemed like an appropriate behavior for a young child, and was something that we knew he would outgrow.  He didn’t like the feel of certain clothes or the tags on shirts, but sometimes other kids didn’t like those things either.  He was very hard to potty train, but aren’t boys often that way?  Then came his first seizure in the winter of 1992 while we were stationed in Germany.  We were terrified at this unexpected and awful event.  Aaron spent nearly a week in the German children’s hospital in Mannheim and was diagnosed with Epilepsy.  I cried one night at home until I felt that I had no more tears, and then Gary and I faced the future with faith in God and love for our Aaron. 

Aaron adjusted to his seizure meds and kept on being a normal little boy.  He taught himself cursive, learned to read, and played with his friends.  But he didn’t like many of the loud sounds at school, and we noticed that he had a hard time with maintaining friendships.  We returned to the States in 1993, and that next year Aaron was removed from his seizure meds because he had been seizure free for two years.   Soon, though, the seizures returned and so did various medicines.  Aaron continued to regress socially as he grew older, and his behaviors were more extreme and very hard to understand.  He became more isolated…….it took very special people to understand him, especially boys his own age.  Yet God put us with some wonderful friends as we lived in Leavenworth and then again when we were stationed in Arizona.

But life was difficult for Aaron, and therefore for us as well.  In Arizona, his seizures increased dramatically as did the behaviors.  Finally, when Aaron was 14, he was diagnosed by a pediatric neurologist as having Asperger’s Syndrome.  I had never even heard of this, and was so shocked when the doctor told me that it was a form of autism.  We researched and studied and read……..and again, I cried at this news.  One long, hard cry……….and then we moved on in our life with Aaron.

 

There have been many ups and downs in our journey………..many hard times and hard decisions………many moments when we thought our hearts would break……….and many times when we just wanted to walk away in our frustration during a particular behavior.  But Aaron is our son and we love him deeply.  With time comes acceptance and knowledge and understanding.  With God all things are possible.

 

God allowed Aaron to be the young man that he is today.  Aaron has redefined our parenting……he has reshaped our family……..he has refreshed my world on so many levels with his unique view of the world around him.  Would I have designed Aaron to be this way?  Probably not.   But I have a God Whom I can totally trust and Who wove Aaron in my inward parts.  Even though I don’t know the answers to the “why” questions, I do know the Who of creation.  I trust my sovereign God with all my unanswered questions.  He is an awesome God.

And He gave us an awesome son!
 

God is Great……..God is Good

 

Last night I enjoyed a beautiful light and sound show, thanks to our great Creator God.  Just as we were turning in for the night, a pretty significant Kansas storm was cranking up.  Aaron loves storms, and so he was getting all ready to sink into his covers and watch the lightning through his windows that he faces from his bed.  Of course, that was after he made sure that all of his covers were just right and that his clock that was flashing from a previous short power outage was reset – using my cell phone as his reference point since his portable digital clock is broken.  I hoped he was settled as I finally made my way to bed.
 
I’m sleeping in Andrea’s former room right now due to a shoulder injury that causes much tossing and turning on my part, along with pillows and grunts and groans that I feel will bother Gary.  The windows in Andrea’s room face the direction from which the storm was coming, and it’s upstairs so the open, rural view is perfect.  The blinds were staying up so that I would have a perfect, unimpeded view of the storm.  I knew exactly what I was going to do as I climbed into bed and turned the nightstand lamp off.  Worship.  And rest in God’s greatness and power on full display outside.
 
Several years ago, Gary and I were going through a particularly trying time in our lives.  I had been praying for Gary in specific ways as he faced certain stresses and frustrations that were weighing him down.  As I prayed for him, though, I didn’t really know what to pray for.  I just knew that I needed to pray for God to do a work in his life and in our lives together.  God did just that.  He answered my prayer……but not in the way that I would ever have expected, and definitely not in a way I would have wanted.   God moved in a way that caused much personal pain for both of us over a period of many months, and still continues somewhat today.  Yet through that rough time, God showed us more than we could have imagined.  He proved Himself faithful, and He caused us to grow in our walk with Him and in our relationship to each other, to our children, and to our dear family and friends. 
 
Gary and I had gone to Missouri one weekend to spend some time with Andrew at a racing event.  On that Saturday morning in our hotel room, while Gary did some studying for his Sunday School lesson, I opened my Bible randomly and looked down at Isaiah 40.  I began to read that chapter as well as the next one, and was overwhelmed with the reminder of just Who God is.  God was speaking to Israel, but the concepts of His greatness and power apply to all of us today as well.
 
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Reading about the pure power of God in creation had a profound impact on me as I sat on that hotel bed.  This God of mine holds the oceans in His hand!  Imagine that!  He measures the universe with the span of His hand!  He weighs the mountains!  He sits above the circle of the earth, and stretches out the heavens like a curtain!  He calls each star by name!  And to Him, we are like little grasshoppers; nations are like a drop in a bucket or like a speck of dust on the scales; rulers come and go at His command.  I could go on and on from these two chapters in Isaiah that spell out God’s might and our insignificance.  What really struck me was this thought:  How can I doubt God’s ability to handle my life, Gary’s life, or our children’s lives when I catch a glimpse of His unbelievable power and strength?  How can I question whether he can arrange our lives when I just read about how he arranged universes? 
 
When I pray with my eyes on my problems, then certainly I pray in my own weakness.  But when I pray with my eyes on this God of the universe, then certainly I pray in His strength.  And in that strength I can rest, knowing full well that He can absolutely do anything and everything.  When I think in my heart, “Well, I don’t know how on earth God can manage to do this thing that I’m praying about,”  then I am relying on my own power…………and I have none.  It’s good for me to return often to Isaiah 40 and 41, and to be reminded of just Whom I am praying to and relying upon. 
 
God does things that I don’t understand.  In these Isaiah verses, He also asks this question:  Who has directed or counseled or taught God?  No one has done those things!  Who could ever teach this great God?  Yet there are times that I try to take that place in this life and figure things out……make sense of situations……give God ideas of how to work, all the while wondering if He can really do those things for me. 
 
I don’t know why God made Aaron to have Epilepsy and Autism.  But I do know my wonderful God………the God that I worshipped last night as I was nearly blinded by His fantastic light show.  I know that He is sovereign and perfect, and that I can trust His plan for me and for Gary and for our Aaron.  I know that He will take care of Andrea in grad school and of Andrew in his senior year of college. 
 
God is great……..I am not.  That’s the bottom line.  God loves me and He loves my family.  These Isaiah verses also state that He does not become weary or tired; that His understanding is unsearchable; that He gives strength; that He will uphold; and that He doesn’t want me to look anxiously about me. 
 
I relished the time with Him last night, being reminded of His power with every dazzling flash of lightning and every boom of thunder.  I felt small and overwhelmed………but so protected by this all powerful God Who loves me with a fierce love.  He can do anything and everything.  He wants my time and my obedience and my trust. 
 
Everything else He can handle just fine.  

Throw ON the Towel!

Here we go again.  I heard it from upstairs…….the sound of the plastic containers full of coffee hitting the floor and then the thump.  My heart sank as I hurried downstairs to check on Aaron.  He was fine, although sprawled on the floor with spilled coffee all around him.   He jerked and dropped his coffee yet again………lukewarm coffee, thankfully.  And thankfully he didn’t throw his coffee containers as he has been known to do when he’s in a rage. This was a true accident, but messy and discouraging none the less.

I was frustrated with Aaron this morning over a couple things already and this didn’t help, believe me.  My compassion for him still hasn’t quite kicked in yet.  He has cleaned up and showered, and seems to be fine.  I hope he’s not bruised.

I just stood and looked at this mess………coffee all over the floor, the cabinets, on and under the frig.  UGH!  And I thought of how many times I’ve just felt like throwing in the towel.  We all do, don’t we, whether we are parents or not.  But we can’t quit.  God doesn’t and we can’t.  Especially as parents……….these children are given to us by God and He wants us to hang in there despite how tough it sometimes is.

So instead of throwing IN the towel, we throw ON a towel.  We clean the messes up step by step, bit by bit. We’ll see progress one day, even if it’s slow to come…………even when we just stand there and don’t know where to start.  God gives patience; and God gives us the same grace toward our children or others that He has extended to us.  We clean up the messes, whatever they may be, and we push forward.

The rest of the day is before us.  It’s up to me now not to mess up my reactions and my attitudes.  I’ll need to grab another towel if I’m not careful!

Our Nest

I remember being pregnant with Aaron and hearing the term “nesting.”  I wondered if that phenomenon was really true, and later discovered that it certainly was.  I had the rush of energy and the desire to get our nest in order before Aaron’s birth – and he was three weeks early!  Interesting!

I find myself considering our nest again, but now on the other end of the spectrum.  Goodness, how time flies!  And now I sound old even in just saying those timeless words about time.  I don’t really feel old, but soon our nest will be a little emptier, and I know that the years have rushed by much faster than I ever dreamed they would when I was knee high in diapers and runny noses.

Tomorrow, barring any delay, Andrea will officially be moving to her new apartment.  She’ll only be an hour away but the distance isn’t what matters.  This marks the beginning of her independent life.  She’s worked since she graduated from college, but has patiently still lived at home as she waited for the wisest opportunity to launch out on her own.  That time has come for her, and no one could be any happier for her than Gary and I are.  Yes, we’ll have the normal sadness as we watch her go, but the sadness is tempered by the happiness we feel for her.  She has a job that she’s wanted and that God put into her lap, so it seems, and now her own place.  Her patience has paid off and we believe that God has honored her.

When Aaron found out that Andrea would be moving, he was very surprised.  He blurted out, “NO MORE ANDREA??!!”  Well, kind of, Aaron………….she’ll still come to visit but no, she won’t be living here anymore.  He’ll miss her a lot, as we all will.  And she’ll miss him, too – in some ways more than others, for sure.

The nests I’ve seen around our yard, up in the trees, are all empty.  It’s the time of year for empty nests.  When I think of our nest, the Moore nest, I know that we have a different nest than many other people have.  We’re not alone in our uniqueness, certainly, but we are in the minority.  At our age, Gary and I should have an empty nest…………but when you have a child, or an adult, with special needs – sometimes the nest won’t be empty for a long time, and maybe never.

This fact hit me at some point when Aaron was entering adulthood.  Some of our friends were anticipating their own empty nests, or celebrating that fact when it occurred.  None of us dislike our children, but when the time of life comes that our children move on and we’re still young and healthy enough to be alone again – well, it’s just fun!  But as Gary and I dealt with the reality of Aaron’s needs, part of that reality that hit us square in the face was that Aaron may not leave home for a long time.

I’m not complaining and I sure hope I don’t sound whiny.  When we were first exploring what options we had for Aaron’s services, we chose an agency that would provide Aaron with a group home.  We were definitely headed in that direction…………..until one of the staff physically and verbally abused Aaron.  Gary and I considered that door shut, and so have kept Aaron at home with us.  Some day we will have to cross that bridge again, but we don’t know when that will happen.  His day group is a blessing to all of us, with an awesome staff.  But honestly, I can hardly imagine someone being able to love and understand Aaron enough to live with him, to care for him during his seizures, to know how to defuse him when he’s angry, to read his body language, and on and on.

There are some lessons that I have learned over the years in regards to our lack of an empty nest at this point in our lives. I don’t always practice what I preach, but I have learned:

1.  Do not compare myself to others!
This is a trap that I think we women fall into so easily.  I remember in our early years of marriage how I would listen when other wives told me that Gary and I should do this or go here or experience that.  I had to learn not to compare our lives with their lives.  Now as I think of Aaron being home I must also not compare our lives to those who are “free.”  God has given us this life with this situation, in His sovereignty, and to live any other way than in freedom would be defeating.

2.  Do not covet the life that others have!
     This goes along with not comparing ourselves to others, but coveting takes it one step further down that slope of sinful behaviors.  Other couples may have more time alone, more opportunity for travel, more peace and quiet, more time for their own hobbies or pursuits……..but I should never covet these things.  Coveting is purely sin!

3.  Be content!
     Paul had a lot to say about being content………….”Godliness with contentment is great gain;” and “I have learned in whatsoever state I am, therewith to be content.”  Being content is an act of my will and an act of obedience to God.

4.  Count my blessings!
I have so many reasons to be thankful and so many blessings to count, every single day!  And counting my blessings keeps my mind on positive attitudes and focuses me once again on being content.

As Andrea and I worked in her apartment the other day, we noticed the pretty tree out the front window.  It’s a Redbud and this spring it promises to provide lots of beauty for her to enjoy.  As I was working on something, Andrea said, “Look, there’s a nest in the tree.”  And sure enough, there sits a nest up in the branches of the Redbud.  What a perfect reminder that now Andrea is starting her own nest!  Her first nest is not like my first nest, but it’s a nest and will be blessed by God as she honors Him.

 

And I want to continue to honor God with the nest that God has given to Gary and me.  Our last bird may be here for a long time, but that’s OK.  What a privilege to mother our special bird!

Besides, what would I write about if not for Aaron?

Matters of the Heart

Aaron is now 27 years old.  I know that he is a man, a grown man, and that fact is very hard to imagine.  28 years ago Gary and I were anxiously awaiting the birth of our first child.  I had made all the yellow gingham nursery curtains, bumper pads, changing table covers, and decorated with yellow, fluffy duck decorations.  Everything was as I wanted it.  And even though I went into labor 3 weeks early and Gary had just changed out of his flight suit when he rushed me to the hospital, we were really ready – for the most part – or so we thought.  What new parents can ever be really ready for the responsibility that awaits them?  And what new parents can ever comprehend the depth of love that washes over you when you first hold that little part of both of you?  Aaron was so little and perfect and beautiful.  And my radar screen was still showing sunny weather with not a storm in sight.

When Aaron had his first seizure and was diagnosed with Epilepsy, and then years later was diagnosed with Autism, we were completely unprepared.  We never, ever expected such a thing to happen to us.  To someone else, yes.  Someone we would read about in a magazine, or hear about from a friend, or receive a prayer request for at church.  The reality of this event in our lives with our Aaron was just so unexpected and unwelcome.  And as I said earlier, when I got home from the hospital after his Epilepsy diagnosis, I cried my heart out with tears for Aaron, for us, and with pleas to God for His grace and strength.

I had a choice to make and I chose to focus on what I KNOW.  And what I know is that God is sovereign.  God is in control and none of these events surprised Him or confused Him.  God loves me and God loves Gary, and God certainly loves Aaron.  I cannot and will not ever try to explain the ways of God.  There is no unfairness with God, I do know that.  So instead of wasting time and energy trying to explain the why of our situation, my choice was to trust the Who in our lives.  And that would be God.  I know from my walk with Him for all these years and from reading His Word, Who He is.  I know that His sovereign plan is best even when He doesn’t choose to reveal it all to me.  I trust Him and I love Him and I have found Him always faithful.  Those things I know.

While in Leavenworth, God gave me Psalm 18:29:  “For by You I can run upon a troop; And by my God I can leap over a wall.”  I just love this verse!  It’s my theme verse in so many ways.  Oh, the walls that I’ve run into in our life with Aaron!  I’ve shared many of them in the past few posts.  So many times I’ve run into walls, beat my head against walls, beat my fists on the walls, tried to climb walls with my own strength – but by my God, I can LEAP over the walls.  What a promise, fulfilled in so many different ways in so many different situations.  So I also know that with God, I’m a wall leaper!

But there are also some things I feel, and feel deeply.  These feelings come from within my mother heart.  I think of my heart as having various doors that open when needed.  Doors of love, of wisdom, of encouragement, of laughter, and on and on.  But there is a door that I rarely open because it is too painful.  That is the door of my regrets and wishes for Aaron.  I do not live in regret or in unfulfilled wishes for Aaron, but occasionally those thoughts slip in or that reality hits me in my heart.  Once after Aaron started going to the job skills school, he came home one day and said, “Mom, I’ve noticed something.  All the kids at that school have problems.  What are my problems?”  I struggled not to cry as I tried to talk to him about Epilepsy and Autism.  He was satisfied and seemingly unconcerned, but I knew he was pondering these issues very personally now.  And it broke my heart.  I remember when Andrew got his license and later came home with his used truck.  We had purposely not made this a big deal because Aaron was often jealous of Andrew’s life.  But Aaron looked outside and saw the truck, so he asked if that was Andrew’s.  I said yes and Aaron said, “I wish I could drive.”  Little glimpses like that into his heart made that door of my heart start coming open.  There are times for tears, but not time to wonder about what could have been or might have been.  Living in defeat is not God’s plan for me or for Aaron.

And there are so many reasons to be thankful.  Gary led Aaron to the Lord when he was 6 years old.  Aaron has that understanding.  He can walk, and run, and see, and talk (can he ever!).  Things could be so much worse.  He can read and understand, and even though he can be sooooooo irritating sometimes, he also makes us laugh – a lot!

In closing I want to post a piece that has always spoken deeply to me and I hope it will to you, as well.

 

“WELCOME TO HOLLAND”
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability- to try to
help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this………..
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.
You buy a bunch of guide books and make your wonderful plans.  The Coliseum.
The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in
Italian.  It’s all very exciting.
After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.
Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say.  “What do you mean, Holland??  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy!”
But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.  It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.
But after you’ve been there for awhile and you catch your breath, you look around…………and you begin to notice that Holland has windmills and Holland has tulips.  Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy………..and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away………because the loss of that dream is a very, very significant loss.
But………if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things………….about Holland.
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Lessons From the Little Black Ant

Let’s face it – life isn’t easy for any of us.  God has allowed Gary and I to be in a place we never even thought about as new parents to our beautiful baby Aaron over 32 years ago.  One summer I wrote some thoughts about persevering as we carry the burdens we face.  It involves an ant:

If you had driven by my house this morning you would have seen me standing in the front yard under our maple tree, watering hose in one hand and coffee in the other, with my hair blowing crazily in our Kansas wind. And to make me even more noticeable, I’m sure, was the fact that I was staring up into our maple tree for a long time. You see, God has often used my gardening as a time to teach me. Object lessons abound and this morning was no different. So I was observing God’s lesson for me this morning in the form of an itty bitty tiny black ant. An amazing itty bitty tiny black ant.

There he was, this little ant, carrying a white load that was bigger than he was. As he climbed up the tree, defying gravity with his load, he never wavered from the task at hand. Other ants were barreling down the tree, passing him as they went merrily on their way, seemingly oblivious to the load he carried. Several times he bumped into rough, curling bark that threatened to stop his progress. Then the wind blew and it buffeted him terribly. He would swerve and I wondered if he was going to fall down to the ground, but he never did. He pressed on and on until finally I could barely see him. I don’t know if he made it to his goal today or had to start over, but something tells me he accomplished what he set out to do. I know that God used that little oblivious ant to accomplish a work in my heart.

We all face those loads in life and I’m no different. I remember some of them in particular as milestones in my life. Usually the loads are painful, for that is when I learn the best. Aaron’s diagnosis of Epilepsy and then several years later of Autism were particularly hard loads to bear. Our frequent military moves were often painful as we once again said goodbye to family, friends, and ministry that we loved. Receiving the news of my dad’s two cancers, and then losing three of our parents in 14 months was at times too heavy to bear. Watching family that we love go through terrible trials takes a toll as well. That out-of-the-blue phone call that came several years ago that changed our lives and has impacted our children continues to be difficult.

I admit that lately I have become discouraged with it all. I have wanted to throw the load down and head merrily back down the tree to a life where things aren’t so burdensome. I’ve become tired of the impediments, the rough tree and curling bark. The winds of doubt and of feeling unused threaten to blow me off course. Worry, concerns, injustice – it all crowds in during the dark hours of the night when sleep won’t come. But today God spoke to me. Not with a mighty voice or an awesome miracle, but He allowed me to “consider the ant” and to be uplifted and blessed.

James said that we can know “that the testing of our faith produces endurance.” Endurance, which means abiding under difficulties. Not dropping the load and running back down the tree but living under the difficulties, pressing on toward the mark, and counting it joy. Thank you, God, for the strength that you promise; for the joy that you give under the loads of life; and for the little black ant that you sent my way today.