Category: Epilepsy

Back to Normal, For Now

This has been a wonderful weekend for Aaron, especially compared to last weekend when he was feeling so horrible with all the seizures he had.  And the weather has been pretty and warm, so he was able to get outside for his relaxing time in the mulch.  Sorry for the picture through the screen.  Aaron is getting a little tired of all the pictures that Mom wants to take, so I didn’t let him see me taking this one.  J 

He enjoyed a trip to Dillon’s, where we had fun looking at pomegranates and kumquats……..and where he got to buy some of his favorite croissants (pronounced as croysants if you’re Aaron).  His eating has improved over the course of this week, but it’s been slow in coming.  And he’s been so slow all week in every way – in his movements and his speech and his eating and his thinking. 

He’s getting tired of us mentioning anything remotely to do with his health or with how he’s feeling.  Last night he got his bed ready in the meticulous way that he does.  There’s Mr. Snake, who will be moved under the covers beside Aaron when it’s time to go to sleep.  This is Aaron’s pre-sleep set-up that he has as he reads his Handy Answer Book.  He changes everything when it’s time for actually sleeping.  Routine, routine, routine.  So anyway, I mentioned something last night before I left his room that made him think I was going to talk yet again about how he was feeling.  He said, “Stop with all the how I’m feeling stuff!”  I think he’s on overload and ready to get back to normal.

He clipped all my coupons today even though there were lots of them, and he did it without taking a break.  He’s back to clapping loudly when he watches television, especially Wheel of Fortune.  Man!  Tonight I had to tell him to stop, but it felt nice to actually hear him clapping, if that makes sense.  He’s been yelling as he watches a movie in his room, and talking our ears off about the latest alien plot that he’s trying to figure out.  Annoying sometimes?  Yes.  But right now it’s a welcome sign that Aaron is back to his normal self, and we’re thankful.

We took a walk around our neighborhood circle this evening.  It was a beautiful evening for a walk, so we stopped by the lake and snapped a few pictures.  When I compare last week’s picture, taken at about this very same time of day as today’s shot, I’m very thankful for the huge difference.  

 
Aaron and I will see his autism doctor tomorrow.  We’re continuing to pray for wisdom and direction as we talk to her, and then to Aaron’s Epileptologist in February. 

And Aaron……..he’s planning where we will eat tomorrow for lunch, when he’s not talking about aliens.  I was so bogged down in aliens as we took our walk that I had to re-direct him to the first thing that came to mind, which was naming various restaurant possibilities for tomorrow.  But he’s talking, which he can’t always do after some of his seizures, so again I’m thankful. 

Sometimes the hard times change our perspective on thankfulness.  What we took for granted in the normal times becomes huge when it’s taken away, and if it’s restored then we just well up with thanks.  I know myself, and I know that I’ll end up taking things for granted or I’ll get irritated too often again as I tend to do. 

Like yesterday……when Aaron was eating lasagna………and I stepped out…….and Jackson the lucky Great Dane had a nice piece of lasagna for his lunch. 

Aaron!!! 

Let’s Get This Working!

Aaron has had epileptic seizures since he was in the first grade.  While I can’t say that we ever get used to seeing him have a seizure, we are used to the fact that he has seizures.  They’re all difficult to watch, though – very difficult.  For the past few years, the majority of his seizures are at night.  On a rare occasion he might have one during the day while he is napping.  We keep a baby monitor on our nightstand so that we can hear him if he seizes during the night.  We just got a new monitor with a talk button that we can push down and then talk to Aaron in his room.  At first he didn’t like this.  He said that we were spying on him.  But now he thinks that this is pretty cool, and on the occasions that I have talked to him, I can hear him chuckle.  

His seizures have been spaced weeks apart for quite a long time.  We’ve become comfortable with this level of seizure control.  But over the past two months or so, his seizures have become more frequent.  Now they have been occurring every 10 to 12 days.  This isn’t good for many reasons, and of course we wonder why there is an increase.  We recently put him on a medicine to help control some of his impulsiveness and anger outbursts.  We wouldn’t do this unless these issues – these behavior issues – were interfering with his life and happiness………and they do just that.  However, many of these drugs can also lower the seizure threshold in those already prone to having seizures.  The medicine that Aaron takes only has a .1% chance of having this side effect.  We hoped that it wouldn’t increase his seizures.  We still don’t know if it is.  We are now removing him from this medicine, will see his two specialists soon, and will have many decisions to make.

Poor Aaron.  Sometimes I feel like he’s a pawn in this great guessing game of medicine controls.  It’s a huge responsibility for us as parents, as any parent of a child with medical issues can attest.  Aaron’s health and safety and happiness are our primary concerns.  It’s just very hard to know if we’re going in the right direction to achieve those aims or not.  What helps might also hurt.  There is so much weighing to do…….so many decisions to make. 

Early this past Sunday morning I heard that awful sound on the monitor by our bed that told me Aaron was having a seizure.   It was just after 3:00 a.m.  Then again he seized almost exactly 2 hours later, and again 2 hours after that.  3:00…..5:00…….7:00.  His poor body.  Aaron’s seizures are hard, and sometimes last for close to 3 minutes.  He made his way down to the kitchen sometime after 8:00 that morning, all groggy and with a terrible headache.  I had him take his pills, but right away he laid on the couch and told me he felt sick.  I ran for the trash can and he promptly threw up all his pills.  He spent the entire rest of the day sleeping, throwing up when he was awake, and managing to keep down a little ginger ale.  Did he have a stomach virus along with the seizures?  Sometimes he throws up after seizures, but this was extreme.

 
At 5:20 that evening, Gary and I watched him have another seizure.  Afterwards he was totally limp, and later when he awakened some, he couldn’t speak.  That’s always a hard thing to see.  At 10:00 he took his night pills, threw them all up, and later was able to finally keep a second set of pills down.  And he slept all night…………no more seizures and no more throwing up.  I was amazed at all that sleeping! 

On Monday morning I went into his room several times to check on him.  Finally, I made some noise and he woke up, giving me an Aaron smile as he stretched his arms and legs.  He made it out of bed, and I had him scoot down the stairs on his bottom while Gary stayed in front of him to catch him if he fell.  He was just too unstable to walk down a flight of stairs.  He was much more coherent and alert, though still slow.  I knew he was hungry after not eating for 36 hours.  He said that some applesauce sounded good, so I fixed him some and watched him as he slowly ate……..and stared……..and leaned over………..and ate some more.  Feeling that he was tired, I told him that he could take a break and have some more applesauce later.  “How ‘bout I do it now?” he asked.  So hungry Aaron ate more applesauce, of course, and then drank coffee.  He was feeling better by the minute!

He had a good day……..slow and quiet, but very good compared to the day before.  That evening I asked him if he wanted a haircut and he quickly agreed.  I know it felt great to him to get out of the house, and he always loves getting a hair and goatee trim.  Then we walked down to Papa Murphy’s and got his favorite pizza for supper.  Later, he very slowly ate his piece of pizza.  I commented to Gary that I could tell Aaron didn’t have an appetite because of how slowly he was eating and because he had said he just wanted one piece of pizza…….unheard of for Aaron!  Very softly he said, “I have an appetite.”  And I assured him that it was fine to not want to eat much.  Then he reached for another piece of pizza, which I knew he didn’t want, as he repeated, “I have an appetite.”  It’s OK, Aaron.  You don’t have to eat.  And later, as he was settled in his chair to watch Wheel of Fortune and I was cleaning the kitchen, out-of-the-blue he said, “Mom!  I have an appetite.” 

Yes, Aaron, we’ve established that.  And I’ll know next time not to accuse him of losing his appetite!

He’s been doing fine yesterday and today.  He went to his day group both days.  He’s still very slow, almost like he’s in a daze.  He doesn’t have his usual bounce and hasn’t been talking much.  As I’ve said before, this quietness is a side of Aaron that is always concerning. 

Last week he came home as the proud owner of a new Whoopie Cushion.  I believe one of his day staff won it at All Star Sports and gave it to Aaron.  He hasn’t wanted to open it or to use it.  Does he remember the last time he had one?  We all laughed and laughed together as we each sat on it, including Aaron.  But then Aaron put it on the floor and from a standing position he sat on it with full force.  It exploded!  And we all nearly died from laughter.  Maybe Aaron is now cautious about his Whoopie Cushions after such an explosive event.

 
Last night as I helped Aaron get his bed ready, he reached over on his bookshelf and held up the still packaged Whoopie Cushion.  “Mom, I hope we don’t get this working!” he said with a smile on his face.  No amount of talking on my part could convince him to get the Whoopie Cushion working.  He tucked it back onto his bookshelf and headed for bed.

Who can tell what Aaron is sometimes thinking?  And I’ve been thinking about that statement today.  I DO hope that we get Aaron and his body working again the way it should………the way that is safe and healthy for him.  I also hope that his fun personality comes back, not in an explosive way but in the amazing way that is so Aaron.  His unique view of life……..his funny comments………his amazing insights.  All of these traits are what make Aaron such an interesting, and sometimes frustrating, person to live with. 

He just came home from his group, immediately coming downstairs to find me.  “Mom!  Barb said I made a new friend today.”  Then he told me about J., whom he hasn’t gotten along with too well.  “J. had some silly putty and he put it over his mouth.  Then it made farting noises!”  Aaron was laughing as he told me, and apparently was laughing a lot at J. as he did this….and J. was laughing as well.  “Those farting noises were funny!”  Aaron said.

I think Aaron’s coming back.  I’ll take it…….I think. 

 

Getting Back in the Groove

I have definitely been out of my groove lately……and when mama is out of her groove, Aaron responds.  Both of us being out of our groove makes for some interesting times around here.  Both of us have been physically down at one point or another since before Christmas.  I was sick before Christmas, the week after Christmas, and again this week with my first ever sinus infection – for which I got an antibiotic that I hope will completely remove whatever bug is in my body for GOOD!  Aaron has struggled with some seizures; a bad sore throat that I shared with him because I’m nice that way; and an upset stomach that caused him to completely lose every bite of his favorite lasagna immediately after he got up from the supper table last night. 

Can we be done now?  I certainly hope so.  Yet I don’t want to complain.  We enjoy very good health most of the time.  And Gary has remained healthy through all this, which has been a blessing. 

Aaron isn’t used to seeing me sick.  I mean, he’s seen me not feeling well but to see me in bed in the middle of the day is unusual for him.  To see me cuddled under a blanket on the couch when it’s dinner time is highly unusual.  And of course, if something affects Aaron in a negative way then he will react.  And his reactions are not of the kind and caring variety, hardly ever.  He would have a very difficult time portraying care for me, although he has done that on occasion with a hug or by sharing a band-aid. 

On Monday, however, when I felt my worst and had been to the doctor, Aaron was at a loss.  This was the day that I was on the couch while Gary fixed Aaron something to eat.  When Aaron walked through the family room, I saw his eyes dart quickly over to my huddled form……..and then look away again just as quickly.  He had that familiar scared look on his face that I’ve seen so often…….the look that tells me he is uncertain and uncomfortable.  He cannot bring himself to express feelings like you and I can, but he must show something………and so he shows a measure of fear.  And also anger. 

I understand this about Aaron but it still puzzles me sometimes.  That evening as he walked several times through the family room, he made some comments or asked some questions.  I don’t even remember what they were, but I remember that he was mad.  I watched Wheel of Fortune with him, which I thought might help, but he was still showing frustration toward me.  Actually, though, the frustration was really aimed at the situation.  Mom being sick and out of commission made Aaron feel insecure.  His insecurity is shown by frustration, which is often exhibited with anger.  That night was no exception.  It didn’t get out of hand but his anger was evident in his tone of voice and his impatience.  I knew to just let it ride and to give him space, not asking lots of questions or trying to engage in much conversation.

Of course, the next morning he hoped that my sickness would mean that I couldn’t drive him to meet his day group, and therefore he would have an unexpected day to stay home.  When I told him that I was feeling better and that I could indeed drive him, he was suddenly wanting Mom to be sick again.  So funny how that works!  Again, Aaron is all about Aaron most of the time.  That night I knew that some one-on-one time with Aaron would mean a lot to him, so we played Skip-Bo……..and he was very happy!  It did us both good to spend that time together, despite his attempts at cheating.  He is quite adept at picking up extra cards or digging under the pile for a card instead of getting the one on top or any number of other cheating techniques.  I don’t dare turn my back on him during a game!

 
Two days later, though, Aaron for some reason had a very sad spell at his day group.  He cried there, wanting to come home so that he could “have fun”, and when he walked in the door at the end of the day he was a mess.  His eyes were swollen and blood shot, his neck red from rubbing his jacket back and forth over his skin, and he continued to cry as we talked.  When Aaron cries, then we know that he is extremely frustrated.  He kept declaring that nothing happened, that his friends were very nice when he started crying, and that he just wanted to come home.  He was somber at supper and for the rest of the evening. 

The next morning, Friday, he came downstairs fairly early.  He was still very quiet, and asked if he had to go to his group.  I said yes, which he calmly accepted – much to my surprise.  We talked about things Aaron likes to do at home and I told him that he should read more than just before bed……the only time that Aaron will read.  He said, “Like now?”  I said yes, and so he went up to his room, soon returning to the kitchen table with his Handy Answer Book and his watch, of course.  Keeping track of time is very important, you know! 

 
This was such an unusual moment!  For one thing, I was clipping some coupons I had hidden from him because he thinks he must clip ALL the coupons, but gets angry when he’s tired of all the cutting.  So I had hidden these and he caught me with them.  He asked about them, but he didn’t insist on doing them himself.  And the other thing was the simple fact that Aaron was reading his book in the morning!!  Not at night before bed, but in the morning……….gladly sitting across the table from me, seriously reading his book, with his watch perched near him so that he could see the time.  It was all very sweet and special to me.

I told Aaron that I would fix him his favorite lasagna for supper, and he was happy about that as we later drove to meet his group.  When he got home, he still seemed unusually quiet and remained so at supper.  He hardly said a word to Gary and I as he carefully took the top layer of cheese off of his lasagna, like he always does………because he saves eating it till last.  He was so quiet that we were a little worried, and then really worried when he didn’t want his salad, which he loves.  And he only wanted one helping of lasagna.  He laid on the love seat after supper, and within a minute he asked for a trash can…….and Gary and I ran, with Gary barely making it in time to hold the can for Aaron to use as he threw up all of his lasagna. 

Well, maybe that explained his somber mood over the past two days and his very quiet demeanor.  He dozed on the couch but didn’t throw up anymore.  The rest of the evening still found him being very unlike himself.  He was happy to go to bed and he slept well all night.

When he came downstairs this morning, his eyes were bright and he had a big smile.  “Mom!” he exclaimed, “I was upstairs watching a movie.  I have been not asleep!”  And I knew that Aaron was back.  He was talkative and happy, and proud of the fact that Mom probably thought he was up in his room sleeping late, but he had “been not asleep.”  I love the way Aaron arranges his words, and I love to hear him talk (most of the time!), and I love to see him happy and chipper.  He has been bouncy today, and full of talk, and he laughs as he tries to whack us when we walk past him.  Typical Aaron!

A while ago I put a load of clothes in the dryer and turned it on.  Right away I heard such a loud racket that I opened the dryer door to investigate.  Soon I found the cause of the noise…….a huge plastic die from a game of some sort.  And yes, Aaron had brought it home in his pocket……….his often bottomless pockets that hold his many found treasures.  And yes, he grinned broadly when I showed it to him and yes, he objected when I told him that he must take it back to Paradigm.  This is all so true to Aaron’s nature.

 
And I thought of how Aaron’s talking and all his noise and clatter are so typical of him………so true to his nature.  I miss it when he’s too quiet.  I don’t like it when he’s serious and somber.  I’ve gotten used to the loudness that is Aaron, and to all the clatter that tells me Aaron is fine and Aaron is being………Aaron. 

I’m thankful that he and I are both feeling better, and that we’re both getting back in our groove.  Sometimes I crave the alternative with Aaron…………quietness……….but I realize it’s not natural and I don’t like it at all.  The breaks I get from Aaron are needed and good, but when Aaron comes home, I want the real Aaron.

Loud clattering and chattering and all! 

When Questions Come

I’m sitting at the kitchen table on this fairly early morning, listening to the sounds of my day beginning.  It’s really a quiet morning, almost as if the outside fog is buffering all other noise.  I hear our Great Dane let out an occasional groaning sigh, so typical of him.  He just ate his breakfast and ran outside to do his business, so he is once again lying on his big pillow with his ever-present blanket close by his side.  I hear the swishing of the washing machine as it begins to wash the load I just piled into its tub.  I hear the quiet sound of the furnace running on this cool morning, and I am thankful for the privilege of heat for our house.     

There is another sound I hear, as well as one that I hope I do not hear.  I hear the sound of Aaron’s soft breathing coming from the couch where he is now lying.  Every little bit I hear the soft fluttering sound of an almost-snore coming through his lips.  His head is on his very fluffy black pillow that he often perches behind his back when he watches TV or when he reads in bed at night.  And he is all snug under his new animal print blanket that he received from Paradigm for Christmas.  This is his new favorite blanket that has now been added to his growing list of bed covers at night……..and it is put on his bed in just the right order, which is on top of all the other covers so the fun animal print is visible.  I hear his slurred speech as he just stirred and asked about his coffee, and then was asleep again in seconds.  His throat is swollen and sore from probably the same virus that I had after Christmas, so I empathize with his pain and discomfort, and I wish he could have his warm coffee.

The sound I do not want to hear……..and the reason he is not drinking his coffee………is the sound of another seizure.  Aaron had two hard seizures during the night.  He has a bad headache right now, is very slow both physically and mentally, and will probably sleep for quite some time.  Yet his seizures usually occur in his sleep, and so I sit here listening and waiting and praying that he does not have another episode. 

I’m amazed at Aaron’s strength……at his ability to even get out of bed and make his way downstairs when he obviously feels so awful.  I’m amazed at his desire to keep his routines going even though he can barely stand.  He really wants to begin his day…..to get out of bed……to shower and drink his morning coffee…..and to talk, of course!  But none of this is very possible for him on this morning, so he clumsily made his way over to the couch and lay down.  I got his fuzzy pillow and animal print blanket, and he was asleep before I finished wrapping him all up in soft warmth. 

I don’t know why Aaron has to suffer like this.  His sore throat kept him from going to a basketball game last night with Barb, and that made me sad.  Now he also has seizures piled on top of feeling miserable anyway.  It’s very easy for me this morning to ask those ever-present questions……..the ones that lurk near the top of my mind on days like this.  Why does Aaron have to suffer?  Why is life so hard for him?  Why are things so complicated?  We’ve added a new drug to help with Aaron’s autistic behaviors, but is this why his seizures are increasing?  Now what?  One thing helps but also hurts, so here we go down this path again.  It can be overwhelming and frustrating and deeply hurtful to watch Aaron endure all of this. 

From the time our children are growing in our womb, our hearts are entwined with theirs.  We cannot, and would not, separate ourselves from their pain and their trials……but also from their joys and triumphs.  It’s just that poor Aaron doesn’t have a lot of joys and triumphs, it seems.  At least that’s how I feel on a day like today.  The poor guy is even color-blind! 

Yet I know from years of experience that when Aaron is suffering, like today, that I need to especially guard my heart.  It’s easy to keep trudging down that path of defeat and unanswered questions.  I will probably never know until eternity why Aaron suffers.  Why does Elijah, and so many others, suffer on such a great level?  Why did Paul, and Ben, and Katy not live past their young adulthood?  I could name so many families who are suffering from ongoing hurts and trials.  We all can.  Why?

Just like Job did, we question God sometimes.  I am convinced that God wants to use Aaron to point me more to Him.  To learn to give God my complete trust and my praise even on these days when Aaron is seizing and has a bad sore throat and wasn’t able to go have some fun at a basketball game like everyone else does.  Oops, there I go again……….letting my mind focus on the sad and the negative instead of on God. 

I opened my Bible here at the kitchen table while listening to Aaron’s sleeping sounds.  I sometimes just open it and see where my eyes land, and what God has for me in those verses.  This morning it was Job 9, where Job talks about God’s power revealed in nature but also questions God’s bruising and wounding in his own life.  Job couldn’t figure out what God was doing at all, and neither can I.  Oh, I know what God was doing with Job because I have the whole picture as written in the book of Job.  But I don’t see that whole picture in my life as it relates to Aaron’s sufferings. 

Reading Job 9 today reminded me of how God led me one morning in a hotel room in Missouri to read Isaiah 40.  Reading those verses about God’s mighty power in creation impacted me more than anything had in a long time.  I was reminded that this powerful God Who holds the oceans in His hand can certainly heal Aaron……..or do any number of other things that would mean a lot to me.  Yet He is also worthy of my complete trust when He does NOT choose to heal or to rescue immediately…..or ever.  I trust God because I know Him, even when I don’t understand Him.

Those surrounding chapters in Isaiah are rich with promise.  God does not become weary; His understanding is unsearchable; His strength is there for me; He will hold my right hand; He tells me not to fear.  He doesn’t say I won’t hurt or that I won’t question.  But my thoughts are to not dwell on those questions as much as they dwell on the One Who has the answers……….revealed to me now or not. 

So I wrap up my heart with God’s promises just as I wrapped Aaron up in his special animal print blanket this morning.  Once again I face my hurts and my pain for Aaron, propped up with God’s ever present love and his strong arms that are always under me.

Like Job I can say, “I have heard of You by the hearing of the ear; but now my eye sees You.” 

Experience does that, you know.  We can see God in ways we never have before. And that kind of experience is never wasted.    

A Fix For Aaron?

I had a sweet and telling conversation with Aaron this morning.  Gary and I aren’t getting out today because there is a layer of ice on everything, and neither of us wants to fall.  Therefore, I was enjoying another cup of coffee while Aaron clipped coupons……..and talked, of course.

He was thinking of The Sound of Music because I watched it on television the other night.  He didn’t want to join me in watching it but he knows the story on which it’s based.  He watched the DVD with Julie Andrews as Maria several times in the past.  As he was working away on the coupons, he asked me again to affirm the fact that The Sound of Music is based on a true story. 

Then, for some reason, he jumped to Pollyanna.  “But Pollyanna is not a true story?” he asked.  I told him that I didn’t think it was based on a true event, but that it taught us a good lesson regardless.  He agreed, so I asked him what the lesson was that Pollyanna taught us.

“It teaches us about happy,” Aaron answered.  I agreed, and then talked about how even when things didn’t go well with Pollyanna, she still looked on the bright side and was positive.  I told him that we could all learn a lesson from Pollyanna. 

“Yeah!” he said.  “Like with that computer thing at Paradigm.”  The other day he had an issue with another client regarding the computer – not Aaron’s fault – and so the next day Aaron didn’t want to go to Paradigm.  I talked him through it and he went, but the incident is still fresh on his mind. 

I was so glad to see him making this connection!  I reminded him of what I so often tell him:  to set aside what happened and to move forward.  I tried to get him to fill in the blank and he said, “To move ahead.”  That works! 

Still connecting, he said, “Like when Pollyanna went in the hospital to get fixed, would you say?” 

Well, kind of, Aaron.  Smile.

He talked about how she was in “that chair” because she couldn’t walk and how she wasn’t happy anymore.  And then I asked him what happened, and he said that her friends came and reminded her to be happy. 

“Just like I do with you!” I reaffirmed.

“OK, Mom!” he laughed.    

A short while later, after I peeled him some mandarin oranges to eat, he wanted me to sit nearby while he finished the coupons.  “You sit there and I’ll talk,” he told me. 

I laughed.  Oh, yes, you’ll talk for sure, Aaron.  Of that I have no doubt.  And thankfully, I had the time to sit there for those few minutes………watching Aaron work and listening to him talk about this and about that.  Watching him clip coupons is to see autism in motion.  He works hard to clip each coupon ON the dotted line.  He takes the little strips of paper that are left over and meticulously cuts them into small pieces, and watches as those pieces fall into his special trash can full of thousands of those colorful cut papers.  In another trash can, he places larger cut pieces that he knows I don’t want.  And then to the side, he carefully stacks the remnants of each coupon sheet that he has cut.  It’s quite a process, and one that he thinks I fail at miserably……which is why he gets very upset if he finds out that I have some extra coupons that I set aside to cut myself. 

 
 
As I watched him work and listened to him talk, I thought about how unique and amazing he truly is.  Would I like Aaron to “get fixed” like he said Pollyanna was?  Well, certainly I would like for the seizures to go away and for his autism to not hold him captive in many areas.  Yet I also know that Aaron is the person that God created him to be.  We work to help him be the best that he can be, but I don’t want to have the attitude that he must be “fixed.”  Instead, I hope to set aside any disappointments that I may have about Aaron and his life, and to move forward every single day.

Move forward to understand him……to accept him……to instruct and teach him…….to continually reinforce positive traits and actions.  But not to try to “fix” him……..because Aaron isn’t broken.  Aaron is fully who he is, as all of us are, and I love that about him.  Even through tears and fears and frustrations, Gary and I both love and treasure good old Aaron. 

I have also discovered that the person who needs to “get fixed” is me.  Aaron has shown me so much about myself……….about my weaknesses and about how I need to be refined into what God wants for me.  God is using Aaron to fix my broken self in so many areas. 

The coupons are done…….the oranges are eaten………and Aaron stretched out on the floor and laughed loudly as I sang “Do Re Mi” to him.  It’s another day with Aaron.  A day to be reminded to be happy, as Aaron so often does  Even when he’s unaware of it, he is showing me a lot about moving forward and being happy. 

I don’t ever want a fix for that!

A Very Special Lady

I dug into my memory drawer today when I had a few free minutes.  There was one thing I was looking for, and soon I found it.  Or found them, I should say.  I need to organize that drawer that is stuffed full of random cards and letters and other mementos.  The unmistakable hand writing on the particular envelopes I pulled out, though, easily identified the sender of these treasures and made them easy to find.  I’m sure there are others still there in my drawer that I will find later, but for now I was happy to find the ones that I did.  I was actually surprised at the many cards and letters that I found in that quick search.  It’s a testament to the gracious caring of the amazing person whose heart touched so many of us by the cards and letters and copies of poems and articles that she spent countless hours mailing to hundreds of people, I’m sure.

Alice Zwemke……..Mrs. Alice, as she often signed her name.  I’m so grateful that Gary and I had the wonderful privilege of knowing her here in Wichita.  She was the embodiment of kindness and gentleness, her voice soft and her smile so full of sweetness.  She most definitely possessed the gift of encouragement, and she exercised that gift to the fullest of the abilities God gave her until her age and poor health made it more and more difficult to do so.  She would encourage by her kind words and her soft touch, but the way that stood out to so many of us was in her mailings.  If I sang a song at church, I would almost always get a card from Alice thanking me and giving me encouraging words.  She would thank Gary for teaching or for praying, or thank us for various other ways that we served.  Always lifting us up…………always showing us love.

However, even more touching than the many cards and articles and letters that she sent us….and the many hugs and sweet words that she spoke to us……..was the complete love and acceptance that she showed to our Aaron.  She never looked at him like he was odd.  She never seemed put off by his brusqueness.  I never saw her cringe when he was loud or angry. 

After Aaron was in the hospital for five days for a video EEG in 2003, there in our mail came a letter from Mrs. Alice.  As she so often did, she referred to Aaron as “A very special Aaron.”  She quoted a verse that she put in other cards to him: “His eye seeth every precious thing.”  I remember reading these cards to Aaron, the cards from Mrs. Alice, and having a hard time being able to finish them because of the lump in my throat and the tears burning my eyes. 

 
Here’s a card from Mrs. Alice for Aaron’s birthday in 2004.  Again, she told him how precious and how special he was.  She said that she hoped at the Thanksgiving meal that she and Aaron could share a bit. 

 
Fast forward to 2009.  Mrs. Alice sent Aaron another birthday card.  You can see from her handwriting that age was taking its toll on Alice.  Her writing was shakier, but her sentiments of love were as strong as ever.  Once again she reminded Aaron that he was special.  Mrs. Alice loved that word.  She used it often with Aaron……and then on this card, she used that word as she signed her own name – your special admirer. 

 
Yes, Alice was indeed special.  Aaron didn’t realize just how special Alice was as I would read him what she wrote.  He enjoyed getting the cards and he knew who she was, but he didn’t fully realize just how much she cared for him or what she was trying to convey to him.  But Gary and I knew, and we were and always will be so very grateful for her sweet love for our special Aaron. 

Tomorrow, November 8, is our special Aaron’s birthday.  And tomorrow is the day that many of us will attend the funeral service for our very special Alice.  I think it’s pretty special that we get to attend Alice’s graduation service, as she would want it called, on Aaron’s birthday.  She would smile at that thought and think of just how special it all really is, too.

We love you, Alice, for all that you were and all that you meant to us…..but especially for the love that you generously poured out to Aaron. 

What a special lady you were!   

I Held A Butterfly

 

I’ve had a bit of an up-and-down weekend for several reasons – finding myself sometimes nostalgic as I think of Gary’s and my role as parents to our three wonderful children.  It’s been the most fulfilling calling of our lives, that’s for sure.  Sometimes challenging, too, as it is for every parent.  Now Andrea and Andrew have moved to other states as they pursue their own callings at this point in their lives………..Andrea in grad school studying genetics, and Andrew living his dream of working for a professional NHRA drag race team. 

 

And we have life with our special Aaron, still living at home and treating us to his unique view of life every single day………whether we totally relish his unique view or not.  For at times his unique take on life may be funny……..or it may be interesting………..or eye-opening………..or tiring……….or maddening.   But never dull.  Never, ever dull.

 

This morning Aaron followed me outside where I was picking up some small branches and sticks that had blown out of our trees.  Aaron was happy that Jackson was out with us, too, as we said goodbye to Gary when he left for work and I continued to look around the yard for more sticks.  Soon I heard Aaron say, “Mom!  There’s a butterfly!”  I turned around to look and there I saw Aaron holding the butterfly in his hand.  He was looking at this beautiful butterfly with awe, just as a small child would do.  Therefore, I did the same………bending over Aaron’s outstretched hand as we both admired the intricate markings and brilliant colorings of this special little creature.  It’s something I probably would not have been doing on this pretty morning had it not been for Aaron.

 

I’ve been thinking about that a lot today.  Last night Gary and I talked to Andrea for a long time about her thesis research……..about the rapid sequencing machine that she is privileged to be using………about her research being presented to the DOD……….about her research being published…………about where she might apply for her PhD studies in genetics……….and so much more.  Andrea’s very interesting studies have opened up a whole new world to Gary and me.

 

With Andrew, it’s been so much fun to experience the world of professional NHRA racing.  It’s been pretty amazing to get an inside view of this life through visiting him as he worked at the race in Texas and then to talk to him about his new life……….the traveling………the drivers and their crews……the inside stories and insights……….the new things he’s experiencing and learning………watching him on television…….and for us to stand in the winner’s circle in Texas while I got to hold the winning trophy, a Wally, for real!

 

And just this morning, I held a butterfly, for real!   I got to stand in our driveway and have Aaron show me his wonderful butterfly, and then let him gently slide the butterfly into my hand so that I could experience holding him myself.  Aaron was as thrilled with this experience as Andrea is with her research and as Andrew is with his job in the NHRA.  Once again, I am reminded of the importance of perspective in these matters, and of how true this perspective is in so many areas of life.  My attitude, my perspective, makes a huge difference in how I view these matters. 

 

In sharing life with Aaron, the seemingly small things become big and important.  Sometimes that’s a good thing………and sometimes not so good.  But just like I am excited about Andrea’s and Andrew’s accomplishments and their lives, I want to also be excited about Aaron’s……….or at least appreciative of Aaron’s life, and often downright awed……..I hope.

 

This wonder that is Aaron……….it’s in a butterfly in the driveway.

 

It’s in him putting his plastic Halloween rat on the dashboard last night as we drove to Sonic for his milkshake………and him hoping that the cashier would surely notice it!

 

It’s in exuberantly asking if the Buffaloes beat the Chiefs in football.  The Buffaloes?

 

It’s in being very excited to be in Papa Murphy’s as we ordered pizza on Saturday……and instantly picking up the container of red pepper, telling me that he put red pepper on his Target pizza the day before.   “It was full of hotness, Mom!!”

 

It’s in the joy of playing a simple game of Skip-Bo.

 

It’s in him sleeping with Mr. Snake that he took from Andrea’s room.

 

It’s in him meticulously writing down the times that he goes to bed every night and the times that he gets up every morning in his special notebook………even when he’s groggy from a seizure.

 

It’s in the necklace that he made for me and that he loved seeing me wear.

 

It’s in plopping on the floor in the middle of the vet’s office to pet Kato, the resident cat.

 

It’s in wearing his slipper socks AND slippers, even with shorts, and not caring one whit how he looks.

 

It’s in happily buying Gary a treat at the grocery store.

 

It’s in watching Wheel of Fortune………and yes, even with his VERY loud clapping and yelling.

 

It’s in his childish excitement about his upcoming birthday.

 

It’s in his pure delight with anything and everything that is even one iota out of the norm…………and him not knowing that he is just that…..out of the norm – unique and amazing.

 

It’s in his final good night hug……either because it’s so sweet……..or it’s because I’m so tired that the hug makes me that much closer to quiet sleep.

 

It’s that last knock on our bedroom door to check for one last time on the weather………and the outdoor temperature………..and whether it’s going to rain during the night…………..and will there be lightening……….and thunder……….and should he leave his blinds up………and he might not read before bed……..

 

It’s one of many reasons that we lock our bedroom door.

 

But not our hearts.  I hope we never lock our hearts to Aaron and to all that he teaches us and opens our eyes to every single day.

The Reality

I was awakened early Sunday morning to the unmistakable sound of Aaron having a seizure.  I turned the baby monitor on my nightstand down and mentally checked the time as I got out of bed and headed for his room.  I have to chart Aaron’s seizures, writing down the time they occur and the duration.  He would love the fact that I note the time so precisely………the seizure began at 4:57 and ended at 4:59.  The second seizure was two hours later, after we were already up, and again I heard it on the monitor that I had put beside me on the kitchen table.  After a while, Aaron got out of bed and slowly made his way downstairs, where he told Gary and me that his head hurt………and we told him about the seizures, which of course he never remembers. 

He had a normal day, but was lethargic and rather quiet.  Then at 2:30 he decided to take a nap, and around 3:30 I heard another seizure – unusual for that time of day.  After such a hard day, I was happy to take him to Sonic that evening for his favorite hot fudge milkshake.  When we got home, he put the milkshake in his blue bowl, of course, and sat there slowly enjoying it.  He was very quiet as he sat there sipping his milkshake.  He wasn’t doing his usual talking a mile a minute about everything under the sun……..and even though when he IS talking a lot I sometimes wish for quietness, this silence now was unnerving to me.  As I looked at him hunched over his favorite milkshake, I felt a keen sadness.  I knew that the reason he was so quiet was because he didn’t feel well……….and he didn’t feel well because of the seizures………and we don’t know why he has seizures………and we can’t take them away.  He just looked very alone and vulnerable as he quietly sipped his milkshake.

 
He wasn’t through with his milkshake when he stood up and groaned.  At first I thought he was just full, or maybe had brain freeze from drinking too quickly……….but he then told me that his stomach hurt.  Stomach aches after seizures aren’t unusual, so I wasn’t alarmed.  He lay on the couch, and I turned to go upstairs and get his blanket.  “Mom?” he asked as I headed for the stairs, “Will you get my black fuzzy pillow and my black fuzzy blanket?”  I didn’t correct him and tell him that his blanket is brown because I knew it didn’t matter at all.  When I brought the blanket back, he was giving Gary instructions about what to do with his milkshake.  “I don’t want it in the freezer.  Will you put it in the refrigerator?”  And soon Aaron was fast asleep, a little after 8:00 on a Sunday night.

As I sat there looking at him, with football on the TV screen………and Aaron having asked me before he fell asleep about which team I was “voting for”……………I again felt such sadness.  Sometimes the reality of Aaron………of his epilepsy and of his autism and just of his life in general…………sweeps over me in waves of sadness.  As his mother, too, I am pulled to him and filled with compassion for my son.  But sometimes it goes beyond compassion to just plain old sadness………..lump in my throat, tears in my eyes sadness.  This was one of those nights.

I sat there, aware of the football game that I had wanted to watch, but more aware of my boy on the couch……….sleeping when he should have been drinking his favorite milkshake…….having seizures when he should have been young and vibrant………..living at home with Mom and Dad when he should have been out on his own.  I know not to go there in my mind, at least not for long, for it serves no purpose.  Yet sometimes those thoughts do come and they do stay longer than I intend……….reminding me of Aaron’s reality, and ours as well. 

As I listened to Aaron’s deep breathing and watched him sleep, I thought of other families and other children and other situations.  I could list so many people that we know who have very serious problems in their lives.  I know that Gary and I are so blessed, for things could be far worse for Aaron and for us.  I wonder how some of our friends handle the stresses and the heartaches that they daily face.  So many people with realities that seem almost impossible to fathom. 

I remember being in Wal-Mart one day several years ago and coming upon a group of special needs adults on an outing with their staff.  It hit me almost like ice water in my face that now my son is one of these special needs adults who goes on outings.  He is one that you may see in Wal-Mart or the mall or at the theater.  And believe me, if it was Aaron, you would probably hear him as well.  But really, I mentally shook my head in disbelief.  I never saw it in quite that light before.  Our bright-eyed-at-birth Aaron who had all the promise in the world…….our first-born…………our son………was one that people now see with his special needs group out in town.  And while we love and accept Aaron, and we are very thankful for what makes Aaron  –  Aaron………well, mostly…………it was just a very firm reality check for me that day.

For the past few days I’ve been thinking about what I was like when I was young and life was full of promise.  High school and college days were wonderful.  All of us had so many good times with all the fun that goes along with youth.  I remember nights in the dorm with my girlfriends as we talked about boys and dating and marriage.  No one ever thought about facing life’s serious issues someday.  If such things ever did happen, it would be very far away……..and would probably happen to someone else……….never us.  Later, we were starry-eyed brides with our handsome grooms…….or single with a career or ministry.  Many of us shared news of babies and jobs and life. 

None of us ever dreamed about cancer…….saying goodbye to a spouse or child way too soon……..divorce………losing everything……….wayward children………a special needs child.  And I know that what we tried to teach our children, and what I tried to instill in girls I have taught in Sunday School, is very true.  We must have our knowledge of Who God is firmly rooted in our hearts before the realities of life hit us full force. Know God.  Know His character.  Know His love.  Know His promises. 

Then some night when you’re looking at your son laying on the couch, like I was, and you’re struck with the harsh reality of how things really are………….or you’re standing beside a coffin………or you’re looking at divorce papers…………or you’re reeling from yet another heartache caused by your wayward child………..or you’re voted out……….or you’re signing foreclosure papers…………you can reach out and grab the only absolute that is there for that moment.  God, and Who He is.  Maybe you’re even angry at Him, and don’t understand anything at all……….but you do know that God is Who He says He is, and that He will be all that you need at that moment, and for the moments still to come. 

Learn it early and learn it well, because if you live long enough you WILL need to hold on to this God Who loves us more than we can ever love another……….even more than we love our Aaron.   

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.

Aaron’s Footprints

I wrote a blog in January of this year entitled Footprints.  I wrote about two young men, Tyler and Paul, who left footprints of blessing in Aaron’s life.  Today I’ve once again been thinking about footprints, but in a different way than before.  It all started this morning with Aaron saying, “Mom!  Guess what woke me up at 5:30?”  Since I could not guess what woke Aaron up, and since he barreled right ahead without really even giving me a chance to guess what woke him up, he continued.  “Dad walking down the steps.”

“How did you know it was Dad walking down the steps?” I asked.   Aaron quickly answered, “Because I know his footprints.  His footprints are heavier than yours.  Yours are lighter.”  I smiled, thinking of how on another occasion Aaron had described Gary’s footsteps as being deeper than mine.  Today he used the word “footprints” instead of “footsteps.”  With both words, though, he talked about hearing our feet as we walked without even being able to see us.  He recognized who was there without sight because he was so used to the sound of our steps. 

I’ve thought about this today in relation to Aaron’s footsteps and therefore his footprints in our lives.  Physically speaking, Aaron’s footsteps are very, very loud.  He doesn’t usually just walk up the stairs, for instance.  He thumps on each step with such force  that he sounds like a huge animal going up the stairs.  The same is true as he barrels down the stairs, and even as he crosses the floor.  Clump, clump, clump!  There is no mistaking that Aaron is on the move! 

Often when we walk into Aaron’s room to tell him something, we’ll find him with his headphones on as he plays a computer game or watches a movie.  He can hear us coming in, but he acts like he can’t.  We’ll speak to him or touch his shoulder, and he’ll give a fake jump and then loudly say, “You scared me!”  The other day I was downstairs on my computer when Aaron came home from his group.  I heard him, of course, but as he came down the stairs to find me he decided to turn the tables and be the one to do the scaring.  It was so funny to hear him trying very hard to come down the stairs as quietly as Aaron can be quiet………which isn’t very quiet at all.  But I played along and didn’t turn as he came into the room where I was sitting with my back to him.  He walked near my desk and then stopped, so I finally turned around and found him standing there with a huge grin on his face.  “I was trying to scare you, Mom!” he exclaimed.  “Did I scare you?”   I told him that he did scare me and I faked being scared as much as Aaron fakes being scared and he was very happy to have scared Mom!


Emotionally, Aaron certainly leaves footprints in our lives that we hear loud and clear.  One minute we’re laughing and the next we’re wanting to yell……….and sometimes do!  This morning he was talking to me and he was so happy.  Then I felt that little sting that he inflicts when he puts his middle finger behind his thumb and gives me a ping on my arm or my back.  I fussed at him all the way up the stairs!   And I know he’ll do it again at the first chance. 


Sometimes Aaron’s footsteps are light, as he says that mine are.  He can be funny and happy, showing us a view of life that we don’t see otherwise.  He notices everything, like this morning when he talked about the three sprinkler tripods that Gary set up in the front yard to water some grass seed.  “Mom, I see dad put sprinkler systems in the yard.  There’s almost a lot of them.”   I asked him how many sprinklers are “almost a lot” and he simply said, “Three.”  He didn’t say it, but I do believe he was thinking that Mom was very slow today.

Or the day that there was a staging crew at the house for sale across the street from us.  Aaron asked what they were doing and I told him they were staging the house to help it sell……..and I explained staging.  Later he went out to the garage and told Gary, “Dad!  There were scavengers in that house today!!”  Gary came in laughing and Aaron was still wondering about scavengers. 

His descriptions of things are amazing and unique and so funny.  Talking about a hot air balloon as opposed to a blimp, he said, “You know a hot air balloon……..the one with the bag on top!”  After listening to a song several times that I had played on a CD, he complained, “Mom, you got that song stuck in my head.  I want it stuck OUT of my head!!”  And describing the fact that his whiskers on his cheeks have grown some, he informed me, “Mom, the whiskers on the side of me have grown!”

Just as Aaron leaves footprints of frustration or footsteps of joy in our lives, he also leaves us at times with those deeper prints……….those times when we see his vulnerability and when we get a glimpse of his heart.  When he tenderly puts his arm around my shoulder and lays his head against mine………for no reason but to want to be close for a few seconds.  When he can’t speak after a seizure but looks at me with such trust and pleading in his eyes.  When I look outside and see him sitting by the mulch, thinking his thoughts and processing his stories in his head.  When he offers Andrea or Andrew a movie to take with them when they leave after a visit, or when he wants to buy them candy at the store when they are here.    When he calls me from his day group, like he did today, and says with childlike joy, “Mom!  I’ve been good today!”  And certainly when he talks about Rosie, like this morning when he said, “Mom, Rosie likes me.  What does it mean that she likes me?”


Sometimes Aaron’s footprints leave us heavy, as he described Gary’s prints.  Heavy with guilt as we react angrily to him.  Heavy with worry when he has seizures, or when we wonder about his future.  Heavy with responsibility as we weigh medical decisions, weight loss, friendships or lack thereof, and many other issues.  Heavy with tiredness at the end of a long day, when Aaron wants to play a game or wants help with getting every single wrinkle out of his bed or wants to ask about the weather one more time or tell me that he saw an ant in the sink……..and then thumps up the hall and knocks on the door one more time to tell me what the current outdoor temperature is.   Really?

With the deep prints and the light prints of Aaron we learn more about him……….and we learn much more about ourselves.  Some of what I learn about me isn’t so pleasant, and then at times what I learn is that I have grown a lot by having Aaron in my life.  Some of his prints I see and some I only hear, but they all are a definite part of my heart and of who I am today.  And I can hear him loud and clear, like when he was trying to quietly sneak down the stairs and scare me.  He doesn’t even know that I can hear him all day long, but I can.  In my heart I can hear him and I know his footprints in my life.

I pray that each step…….each print……..will make me a better mother to our special son.