Category: Epilepsy

This is The Day……

This morning I read about the death of one of my most remembered college professors……Martha Grace Green.  Tiny little Mrs. Green was a powerhouse as she taught speech to hundreds of students over the years.  We quickly learned not to underestimate her due to her size, for behind that small stature was a take-charge woman who taught us the proper way to give a speech……and to speak – (NEVER say each and every!!!)…….and also to live.  For at the beginning of each and every class…..so sorry, Mrs. Green!…….the entire class recited Psalm 118:24.  “This is the day which the Lord has made; we shall rejoice and be glad in it.” 

Many memories of Martha Grace were coursing through my mind this morning as I went about my routine, getting ready to drive Aaron to meet his day group.  I wasn’t at all surprised to hear Aaron knock on my locked bedroom door as soon as I got out of the shower.  Aaron often stands outside my bedroom door when it’s locked, knocking and waiting on me to let him in.  He will sometimes stand out in the hall for many minutes, as he did this morning, while he waits for me to open the door. 

When I finally opened the door this morning, there stood Aaron, holding onto the two sides of the hallway wall with both hands, arms outstretched.  “Mom,” he said.  “I’m dizzy!”  He then proceeded to walk inside my bedroom to follow me as I got ready to dry my hair.  However, he was having a very difficult time staying upright.  He was more than a little dizzy.  He was flat out very dizzy, leaning to one side and then the next as he tried to steady himself.  He held on to my dresser and then to the bathroom door as he followed me. 

I knew right away what this severe dizziness was.  His Epilepsy doctor recently increased one of his seizure drugs, a new one that Aaron has been on for a couple months.  The doctor had told me that the most common side effect is dizziness.  I had hoped that we wouldn’t see anything of significance with Aaron, but my hopes were dashed as I watched Aaron try to walk back to his room…….looking like a drunken sailor. 

I made sure he was safely in his room, sitting at his desk watching a movie, and I returned to my bathroom to dry my hair.  As soon as I finished, I heard Aaron again.  This time I looked and found him crawling up the hall.  Yes, he was crawling up the hall and into my bathroom like a baby on all fours.  Poor Aaron!  It made me so sad to see him like that.  He lay on my bathroom floor, wondering why he was dizzy.  He listened to me explain about the side effect of the increased dose of his new seizure drug.  He was satisfied that he was experiencing a side effect……relieved that it wasn’t his movie that was making him dizzy. 

 
Eventually Aaron crawled back up the hall and into his bedroom, where I helped him into his bed.  “I wish I didn’t take that pills,” he said.  “I just wish I could take my other pills.”  My heart hurt for Aaron.  He dozed a little and I hoped that he would sleep off the dizziness and return to normal when he was awake.  I knew that he couldn’t go to his day group like this, so I notified them that Aaron would be staying home.  I called his doctor to report the situation and to see what he wanted Aaron to do.  And as I finished getting myself ready, I was mentally rearranging my day.  At this time of year especially, but really every day, I have my routine figured out for each day.  I know what I will do when I drop Aaron off to meet his group……what I will do first, second, third, etc.  I try to make the wisest use of my time as well as the wisest way to save gas as I plan what to do when.  What will I do today because I can’t do it tomorrow……because tomorrow is also planned out……and the day after that…..

The side effects of Aaron’s medicine today that showed up in his body also showed up in my schedule, and in my planning, and in my LIFE.  Which brought me to the point of remembering Mrs. Green and then inwardly smiling as I made myself quote her life verse once again.  “This is the day which the Lord has made; we shall rejoice and be glad in it.” 

I shall rejoice and be glad in it, I told myself.   A little change in my routine is no big deal.  I can readjust, reschedule, rethink, and be just fine.  Some days it isn’t so easy, granted, but today I can…..and I will……and I really have to…..just stop and be glad in it.  So as I put away mounds of folded laundry that I had set aside for too long……and cleaned both bathrooms……and talked to Aaron when he stirred…..I kept repeating Psalm 118:24.  I kept telling myself to heed its message…..to not complain or sigh…..but to rejoice and be glad in it. 

IN it…..no way around it or under it or over it.  IN the situation I was to rejoice.  And that included poor Aaron going to the bathroom after I had thoroughly cleaned his toilet and the floor……and finding myself on my hands and knees cleaning up an even bigger mess, with dear Aaron telling me he was sorry.  Dizziness and going to the bathroom when you’re a man don’t mix very well. 

Aaron is better now.  The doctor’s office called with new dosage instructions.  The bathroom is clean again.  Aaron even got some Sonic for lunch! 

I am better, too.  Better for having learned years ago a most valuable lesson from Martha Grace Green.  She had no idea…..or maybe she did……of the many ways that her many students would use that life verse in our own lives.  I certainly never dreamed that I would be helping my 30 year old special needs son crawl up the hall to his bed on the morning I learned of Mrs. Green’s death……and had her life verse repeating in my head over and over, giving me great encouragement.  I never imagined that this would be my life when I was a young college girl sitting in Mrs. Green’s speech class.

But Martha Grace had lived enough life to know that all of her students needed to have one thing ingrained in our heads when we left her class.  God has made each of our days to be what they are, and we are to rejoice and be glad in each and every one.  Sorry again, Mrs. Green!

“This is the day which the Lord has made; I shall rejoice and be glad in it.” 

Thank you, Mrs. Green.  Somehow you knew.

Martha Grace Green with her son, Steve
 
 

 

Birthday Weekend Highs and Lows

This past Saturday we celebrated Aaron’s birthday.  It was a big one, too, because Aaron turned 30 years old.  However, to Aaron it was a big birthday because every birthday of his is big in his book.  He had none of the qualms or sadness or excitement about turning 30 that most of us have……which is really good, I guess, because he doesn’t fret over age at all.  He frets over more important stuff, like are we sure we’re going to Texas Roadhouse and that Rosie can come and what time we’re leaving and can she come over to our house after dinner.  30 years old means nothing to him……supper and time with Rosie does. 

In fact, for months he and Rosie have talked about his birthday.  Every time I would see Rosie when Aaron was brought home from his group, she would ask me if she was going to get to come to Aaron’s birthday.  I think some of the other clients got tired of hearing about it, but Aaron and Rosie checked and double checked, over and over. 

A couple weeks before his big day, Aaron looked at the calendar and mentioned that his birthday was coming soon…..for real!  “Mom!” he exclaimed.  “At first it seemed like it was a long time for it to come!”  Now it was within sight, almost, and his excitement was building.  Aaron has never liked a ton of attention on that day, surprisingly enough.  He loves the food and the gifts, but he still doesn’t want singing or other attention focused solely on him.  He’s a mix of emotions around that day, for sure.

So I was surprised when he agreed for me to make cookies for him to take to his day group on Friday, the day before his birthday.  I offered, thinking he would say no, but instead he said yes…..and I was very happy.  It’s like having a child in grade school again.  I gave him cookie ideas, none of which greatly excited him……until I suggested M&M cookies.  He said a hearty yes to that idea, so last Thursday I made his M&M cookies.

He saw them cooling on the counter when he walked in the door that afternoon, but instead of sounding excited about them, he seemed a little hesitant.  I wondered if he would back out of taking cookies, not liking the thought of too much attention.  He barely looked at them when he walked by, so I pointed them out to Aaron with enthusiasm.  He flatly said, “It’s kind of crazy.”

“Oh, it’s not crazy to take cookies,” I told him.  “It’s a fun thing to do in honor of your birthday.”

“Well, what’s it mean to be in honor of your birthday?” he asked.

And I explained what it meant while he paced around the kitchen, acting almost scared of the cookies laying there.  I thought I gave a very concise, understandable explanation…..and then Aaron said, “But Friday is not my birthday.”

HaHaHa!!!  So typical Aaron!  Life should be in order, and celebrating his birthday the day BEFORE his birthday is very out of order.  Silly Mom, he seemed to be thinking…..but the next morning he did take the cookies and he shared them with his group.  Progress!

He didn’t know that I had planned tacos for our supper that night.  He had been wanting tacos for a while, so I thought that tacos would be a fun Friday night supper just before his birthday.  When he got home that afternoon, he grinned broadly when I reminded him that tomorrow was his birthday!  And before I could tell him about the tacos soon to come, he said, “Mom?  Can we have what I want for supper and not what you want?” 

I laughed and asked him what he would want.  He said tacos, and I loved the smile on his face when I told him that tacos was what I had planned.  His birthday eve was going well! 

The next morning, Gary and I both wished him a very happy birthday and he just replied, “Yeah,” as he walked away.  I made his usual apple pie that he loves, and he looked at it with very little visible excitement……but I know how Aaron’s mind works and I knew that he was taking mental notes of everything and enjoying it in his way.  The traditional birthday sign, the gifts and “30th” birthday balloon on the table, the apple pie…..all of it was important to Aaron, though he showed little outward joy about it all. 

We met Leroy and Louise, along with Rosie, at Texas Roadhouse…..but there was an hour wait, so we decided to go up to Outback.  Rosie rode in our van, she and Aaron sitting in the back, and talking the whole way.  No one minded changing restaurants and it worked out well.

After dinner, we headed to our house.  Rosie and Aaron rode with us again, talking as always.  It was a fun evening of pie and ice cream, Aaron opening gifts and cards, and plenty of talking again.  It was wonderful to see Aaron and Rosie enjoying their special friendship on this special day.  And Aaron loved having everyone go upstairs before they left so that he could show them his bedroom.  That’s what Aaron does!

 
 
 
Later that night, I told Aaron about all the many birthday greetings he had gotten on FB.  I told him that at that point he had 48 birthday wishes!  He smiled, and so I started reading some of the comments.  He patiently listened for a minute and then interrupted me to ask, “Are you going to mention all 48?”  I guess he had heard enough, so off he went to his room to examine his new birthday gifts and to unwind after a fun evening. 

The next morning, Sunday, he had a seizure at 4:30, and another one at 7:00.  Gary and I stayed close to him all day, and sure enough he had another seizure later that night while sitting in his desk chair.  He was fine and was able to get in bed after a while…..but as always, our emotions were mixed.

So happy he had a wonderful birthday……so thankful that he didn’t have a seizure day on his birthday……so sorry to see him seizing and then see the effects on his body and mind all day.  So thankful that he slept well last night and woke up being his perky self.

I saw a picture on Facebook this morning that said no matter what is going on, there is always, always something to be thankful for.  Being thankful is an exercise that all of us benefit from, and is certainly what God has told us to do. 

And thanks to each of you who love Aaron and wished him a Happy Birthday!!  Your love for Aaron blesses our hearts and encourages us more than you know. 

“Yeah,” as Aaron would say. 

 

 

Stability

Now there’s a good, solid word for you……stability.  I believe that all of us crave stability even in the midst of changes in our lives.  Some changes are exciting……new friendships, marriage, a new job, a new house, new baby.  Yet even in the midst of these positive changes, we desire an inner stability….a steadiness in our lives at the core of our being.  If we find ourselves facing unhappy changes, then our inner stability can be threatened and we can become very unbalanced.

I remember losing my balance a couple years ago on our stairs in the middle of the night as I let our dog out to go potty.  I hung on for dear life as I rocketed down the stairs after losing my balance.  Our thick wooden door at the foot of the stairs was my stopping point, my shoulder slamming into it full force.  That instability resulted in major shoulder surgery with months of recovery and rehab, and still today I have a shoulder that will never be the same again. 

I know a lot of people facing instability in their personal lives today…..we all do.  I just heard last night about a dear 33 year old mother of four that I know who had a major stroke on Saturday.  I’ve had several conversations in this past week with parents who are terribly hurt and worried about wayward children.  We and our other neighbors are helping our little elderly neighbor, Nora, move to assisted living after losing her husband to cancer in May.  A year ago she never dreamed any of this would be happening.  Actually, none of us knows what a day will hold for us when we climb out of bed in the morning, do we?

These kinds of instability, and so many others, can rock our world.  We can be shaken to the very inner parts of ourselves.  But I also know that even when we are surrounded by so much instability, we can…..deep, deep in our souls…..have a constancy that never changes and is never shaken.  Of course, I’m referring to our relationship with God.  When you have a personal relationship with the One Who is always constant, then you know that you can lean on him when life becomes unbalanced, for He never shifts or changes. 

The first part of Isaiah 33:6 jumped out at me this morning:  “He shall be the stability of your times.”  I know this chapter is talking about the future, but I also know that we can apply this truth to our lives as believers right now, today, because it’s a truth about God that never changes.  What are your times?  What are my times?  What times are we each living in at this point in our lives?  Whatever it is….wherever we are…..if we know the Lord, He will be the stability of our times.

And I think of our Aaron, who in so many ways forces Gary and I to fall back onto the stability of God.  Aaron’s Epilepsy and autism are issues that we deal with every day of our lives…..and just when we think we’re somewhat coasting along in our version of normalcy with Aaron, something changes.  It could be a behavior or a health issue, but change is fairly certain to be constant with Aaron….if that makes sense. 

Gary and I were slapped in the face with this reality on Saturday night.  Aaron had one seizure during the night before, which is not at all unusual.  He has had seizures in his sleep for years after enduring all sorts of other seizures, day or night, during his young years and into puberty.   We have grown accustomed to rarely ever seeing a seizure when Aaron is awake…..except for one at the theater with his group in September and one at the YMCA a few weeks ago…..and then again Saturday night.

Gary and I were watching the World Series, and Aaron was sitting in Gary’s desk chair talking to us.   I looked down at my notebook on my lap, and in two seconds Gary called my name.  I looked up to see Aaron having a seizure, out of the blue and totally unexpected.  Gary was able to keep him from falling out of the chair, and when it was over and Aaron was a little lucid, we eased him onto the floor.

Aaron was conscious but he wasn’t with us.  His eyes were wide, his arms and hands kept lifting up awkwardly as if he was reaching for something, and he couldn’t speak.  He tried to speak, but all he could manage was a smile.  That was pretty heartbreaking.  Finally he was able to muster one word, with effort.  You can guess what it was.  “Mom?” he said.  I had to smile to keep from crying.  Aaron must say “Mom” at least a hundred times a day…..or so it seems…..so it was fitting that this was the first word he was able to say. 

We kept him with us while we watched the game.  I tickled his back, which he loves, while he recovered.  Soon he was talking again about aliens and wanting to go to his room to watch his alien movie, which we reluctantly let him do.  It’s just that we have this fear now…..that started a few weeks ago…..as we see him edging back into sudden daytime seizures while he’s up and around. 

On the next day, Sunday, we let him sleep.  He woke up too late for Gary and me to go to church, but we wouldn’t have left him alone anyway at that point.  We later took him with us to Sam’s, which he loved, and on the way home I told him that I would fix the Lasagna that he had been wanting.  That made him very happy.  I invited Nora over for lunch and to watch some football, not knowing if Aaron would be nice to her this time or not…..but he was perfectly nice and funny…..and we had a wonderful afternoon.  Of course, we had to endure watching some of Aaron’s Mountain Monster show that he was watching before we could change the channel to football. 

For the rest of the afternoon, after Aaron had gone back up to his room, he kept bounding down the stairs and coming into the family room to ask Nora some important questions.  Questions like:  Would you eat an alien egg?  Did you know that those aliens have concentradik (concentrated) acid in their blood?  Why is there a Queen alien?  Have you seen aliens hang from the ceiling?   Would you watch the movie, Alien?

With each question, Aaron would bend over and rub his hands together with delight…..and Nora would laugh and laugh.  He didn’t really care about the answers to his questions.  He just wanted to talk and to share his alien discoveries and to be the center of things…..which he is without even trying.

Later, he and I played Skip-Bo.  You would never have known he had such a strong and unexpected seizure the night before.  Life with Aaron has returned to normal.  Just now he came downstairs carrying a little dirty carrot from the bucket of garden produce that I haven’t yet washed.  He was so excited to hold that carrot and to ask questions about the carrot….and to let Jackson sniff it, of course.  Typical Aaron. 
 

 
We have the continuity…..the stability…..of who Aaron is mixed in now with that cloud of fear concerning his unexpected seizure activity.  Instability is at the back of our minds.  I know that’s to be expected because we love Aaron and we are concerned for him.  But I’m so thankful that we can lean on God when we feel ourselves getting unbalanced with worry, and know that He is “the stability of our times.”  None of these developments surprise Him.  He is here with us and here with Aaron. 

We all learn the deepest lessons in the hard times.  We test the solidness of God when the ground upon which we stand is uneven and giving way beneath us.  Whatever you’re going through, I hope that you have experienced the stability of God in the center of your pain.  He is there for you, constant and sure.  I pray that I remember this truth in whatever lies ahead as well.  

 

 

The Funny and The Sad


It’s been a mixture of funny and sad with Aaron over the past two days…..well, over the past 27 hours and 22 minutes, to be exact.  But who’s counting, right?  Oh……well, yes, Aaron does.  Count, that is.  So he would appreciate it if I would as well, thank you.  
Aaron burst in the door from the garage yesterday when he came home from his day group.  He saw me right there in the half bath/laundry room as he shot through the door.  Of course, he didn’t say hello or hi Mom or anything close to resembling a greeting.  Instead, just as he slammed the door and saw me folding laundry, he loudly said, “Mom!!  King Tut is a real person, right?!”
And so began our late afternoon and much of our evening, as well as this morning.  King Tut this and King Tut that.  Can you tell that he’s watching a movie called The Curse of King Tut’s Tomb?  I don’t recommend it.  It’s beyond lame……but it suits Aaron just fine, because King Tut comes alive and saves everyone from the monster.  The monster with wings. 
Which prompted Aaron to also ask, “You mean King Tut is a humaning being?  He’s not a monster with wings?” 
And this morning I had to watch a YouTube clip of this beyond lame movie.  I had to type Google Videos and then type The Curse of King Tut’s Tomb…..just right, because Aaron was standing over my shoulder, observing my every move.  As we scrolled down to find the right clip, Aaron saw it.  “YES!!!!  That’s it!!!!  It’s the 1:41!!!!”
Good grief, Aaron…..remember my ears close by.  And the 1:41, for you who don’t know or remember……..how could you NOT??!!…….is the length of the video.  Aaron remembers the length of video clips even better than he remembers the names.  Anyway, I endured the video clip for 1:41.  It’s pretty awful.  In fact, I think it’s under awful movie clips on YouTube, but Aaron would strongly disagree with that.
Tonight, he told Andrea on the phone about this classic movie and she told him that she would watch it with him the next time that she “comes over,” as Aaron says.  But then she added that we should make it a FAMILY movie night and all watch it together.  I may suggest that she find a new family.  Really, the movie is that awful.  That girl is in so much trouble.
Back to Aaron’s return home yesterday…. he also told me about teasing Ashley at his day group.  He seems to get great delight from teasing her, which isn’t usually a good thing with Aaron, as his teasing can be annoying and even a little mean.  The more fun HE is having, the less fun YOU are probably having.  I’ve been trying to determine if Ashley is the same Ashley he knew at a school here years ago.  I asked him yesterday what color hair Ashley has.
“She has the color of Goldilocks and the Three Bears!!” he happily said.  Of course, he can’t just say blond. 
 
On his way to bed later, as I fixed the percolator for the next morning, Aaron said he was going up to his room to get ready for bed.  He walked part-way through the family room and I heard him stop.   “Mom, is it going to rain tonight?” he asked.  This before-bed information is very important to Aaron. 
I told him that I wasn’t sure, but maybe later it would rain.  He took a couple more steps, out of my sight, and then I heard him stop again.  Pause.
“When is later?” he inquired. 
 Oh dear Aaron, you who must have an exact time for everything…..
I told him that I wasn’t sure of an exact time when later would occur, but that it just might rain…..sometime…..later.
Pause.
“Midnight?” he questioned.
When you’re in Rome…..and when you’re in Aaron’s world, do as Aaron does.  And thankfully, since I had recently looked at the radar, I could safely tell Aaron that it would not rain at midnight…..that it would rain sometime after midnight, if it rained at all……but I very carefully did not use the word “LATER” again.  Sigh.
And he was satisfied.
It was only a short time later, just after he had fallen asleep, that I heard him having a seizure in his sleep.  I stayed with him until it was over, and I prayed when I laid back down that he would not have a night full of seizures.  And he didn’t have another one……and I was so thankful……even as that little cloud of sadness hovered over my head.
We had more funny times this morning.  Aaron talked and talked about the The Curse of King Tut’s Tomb again, and of course we watched the YouTube clip.  He followed me out to the garden, where he talked more while I snipped okra off the stalks and picked a few tomatoes.  And where he breathlessly told me about Rosie eating some of the tomatoes I sent to Paradigm yesterday.
“Mom!!  Rosie ate tomatoes RAW!!”
He was so relieved when I told him that this is how we usually eat fresh tomatoes from the garden……and I learned that to him, eating them raw means that she didn’t wash them before eating them.  I already did that, I told him, and he was happy.
Then in the afternoon, while at the theater with his day group, he had another seizure…….a rare afternoon seizure.  He probably fell asleep in his chair in the dark, and then the seizure came.  Poor Aaron.  And worry and that hovering sadness was pushing the funny out of my sight.  
He was able to stay at his day group.  He called me and we talked about his seizure.  He was calm about it.  Later, I heard the door open when he got home, but he didn’t have the gusto of the day before.  He walked slowly across the kitchen and came downstairs to find me.  He was much more somber than yesterday as he walked over to me and told me that he didn’t feel very good because of his seizure.
“I guess I didn’t have much fun time in the theater because of that,” he flatly said.  
He made my heart hurt.  I agreed that it wasn’t much of a fun time for him, but that I was glad he was better now.  I was trying to soothe my own pain more than his.
“Yeah,” he said.  “I guess watching a movie today wasn’t very much fun.”
Poor Aaron, indeed.  He loves going to the movies but today he didn’t have much fun time there, for sure.  Yet it’s amazing how quickly he can bounce back…..how soon he was happy again, bending over and rubbing his hands together when I was talking to Andrea and he was trying to tell me what to tell her until I finally just let them talk……and the two of them talked the whole time Gary and I ate supper.  
Aaron is amazing in many different ways, but his ability to keep on going even when his day wasn’t much fun is a lesson for me every time.  And even more amazing is that even though he is the reason for my sadness at times, he can also turn right around and be the reason for my joy.  He can be so much fun!  
The funny and the sad, all wrapped up in Aaron.
A lot sure can happen in 27 hours and 22 minutes.

I Worked on a House!


As I wrote in my last blog, Aaron had a rough seizure day on Tuesday of this week.  When he made it downstairs that morning, he said, “Mom, I don’t feel good.  The reason was……I’m guessing was……I couldn’t sleep well last night.”  Thankfully, he doesn’t remember his seizures and so he was trying to understand why his head hurt and why he felt terrible.  He had another seizure later that morning.  His whole day was spent on the couch.
That night I played a game of Skip-Bo with him.  It was sad to just sit there and watch him…..so slow and clumsy.  He had a hard time holding the cards, and it took him a long time to think of the moves to make…..decisions which usually come quickly to him.  In fact, when we play Skip-Bo he is often urging me to hurry up.  But on this night he was really out of it.  I prefer the quick, sharp Aaron for sure……even when he’s trying to cheat! 
But on Wednesday he was well enough to go to his day group, and by Thursday he was fully back to normal.  On Thursday morning I took him with me to Chick-fil-A, where we got a free breakfast biscuit.  We brought it back to the house and sat at our table, enjoying every bite.  I was enjoying Aaron’s laughter, though, and his being back to his usual funny self. 
That afternoon, when he returned from his day group, he bounded in the house in his usual loud fashion.  He found me downstairs and as always, with no hello or any other greeting, he immediately said, “Mom!  I worked on a house today!!”  He then excitedly explained that he had gone with Brian, one of the staff, to work on one of Paradigm’s residential houses.  Brian is getting this new house ready for clients to move into, so Aaron was one that went with Brian to help.
Now helping in this fashion is totally out of character for Aaron, so I was surprised.  Surprised that Aaron went……surprised as he told me that he helped……and very surprised that Aaron was excited about it.  He told me that he helped Brian put up “fire detectors.”  And that he helped Brian by handing him tools.  And that he helped “tear carpet.”
“Mom!  We cut carpet with a slicer!!”  
Well, I know Aaron loved that because he always wants to help me cut vegetables in the kitchen.  You know…..a guy and a knife.  But this isn’t always a good mix with Aaron involved.  I asked Aaron if he liked all this house work that he did.
“Well, it wasn’t my favorite,” he replied.  “I’m not a house person.”
And I smiled……and smiled again when he saw me talking that night on the phone with Gary.  Aaron leaned close to my face several times while I talked to Gary.  “Mom!!” he tried to whisper……but not quite achieving that, as usual.  “Mom!!  Can I tell dad that I worked on a house?”  
So I let him tell Dad that he worked on a house, while I watched Aaron grin from ear to ear as he talked.  He paced the family room over and over as he talked about the “fire detectors” and the carpet and the tools.  It was fun to see……and I knew that Gary shared my surprise at this working on a house business that Aaron has rarely enjoyed before.  
Aaron had also told me that one of the other clients went along to help as well.  I was a little concerned when he told me that it was J who went, because Aaron and J often seem to have issues.  But Aaron said things went well between them, except that he added:  “Well, some of the time J and I were rowdying around.”
Now I wonder what Brian would add to that…..but I’m not sure I’ll ask.  I want to relish the thought of my new handyman Aaron, at least for a while.
And there was one more element to this working day that Aaron had.  Lunch.  Aaron’s favorite activity, by far.
“Mom!!  Brian took us to a Chinese restaurant!  We had soup that looked like it had worms in it……and parsley weeds!!”
Well, isn’t that the most appetizing meal I could imagine?  I know that Aaron will never be a promoter for a restaurant.  I’ll mark that off his possible job list.
He seemed to fully enjoy the wormy soup, though, and the egg rolls he told me he ate, because when I asked him later if he wanted some supper, he said, “No, I’m full.  That Chinese restaurant…..their food is BIG!”
Aaron, it’s not the food that’s BIG.  
Later, Aaron and I took Jackson on a walk around our back yard.  After all that BIG food, I especially wanted to take Aaron on a walk! 
We were near the end of our walk when Aaron sighed and said, “I’m tired after doing all that fixing!”
It’s hard being a house person, isn’t it, Aaron?  Hard for you…..but so much fun for me!

My Wormy Cucumber…..and Aaron


Last night was a seizure night for Aaron.  We are so thankful that he doesn’t have constant daily seizures like our friend’s son, Elijah, has.  I told Wendy this morning that I don’t know how she does it apart from God’s grace.  I know that each of us who know the Lord depend on His grace for the many circumstances that we face in this life.  Having a suffering child is tough.  When Aaron has seizures is when I feel most vulnerable emotionally.  His autism is high functioning, though in its own way debilitating, but he at least can function.  His autism makes him at times very frustrating and it causes him to be in trouble more than we like, both here at home and at his day group.  Or then he can also be very endearing and funny, even hilarious.
But his seizures……they make me sad.  They show me the seriousness of Epilepsy…..the danger.  I may be vulnerable emotionally on these days, but he is vulnerable physically.  And as his mother, that scares me….and makes my heart hurt. 
However, I know from experience over the years that I cannot dwell on the scary or on the negative, even when it comes to my son…..my first born.  Being aware is one thing.  Being defeated with constant worry is quite another.  And constant regret……that’s one thing that I very consciously pull my mind away from when it starts down that path.  I would love for Aaron to have a normal life, a job, a wife and children…but he doesn’t and he probably never will.  Living with regret over those issues only pulls me down and doesn’t do anything to help Aaron.  Plus it’s not honoring to God, Who wants me to trust Him in all things.  That means ALL.  Even Aaron, my son, and my hurt over his pain and difficulties. 
 
Aaron slowly made it downstairs this morning after his three seizures.  He tried to stay up and awake but as is typical for him, he laid back down on the couch and fell promptly asleep.  I covered him with his favorite blanket……the animal print blanket…..and he slept deeply until he had another large seizure.  Now he is awake off and on, talking about wanting his coffee that he missed this morning……will it still be hot…….when can he have it……worried that he won’t get to drink it……typical Aaron.
 
Earlier, while he slept and with me being unable to leave this area of the house for fear of another seizure, I stood at the kitchen sink.  I was washing the produce that I had gathered in the garden yesterday evening before dark.  Some tomatoes…..okra…..a red pepper……one pear that I was able to reach from our pear tree……and a few stray cucumbers.  On one of the cucumbers I saw the unmistakable signs of worms.  The brown, crusty spots on the outside of the cucumber were my clue, so I grabbed a paring knife and cut into the peel.  Yep, there it was…..a yucky worm……and then another nearby.  It was tempting to just throw the whole cucumber away, but I’m pretty thrifty about my garden produce that we’ve worked hard to raise.  There was still plenty of good left in that cucumber, so I washed the remainder and put it with the other healthy produce.  Aaron loves cucumbers, so he can eat it later.
 
This might sound strange, but Aaron’s a lot like that wormy cucumber.  He has his issues…..his “worms”……..that disrupt his life.  The autism….the Epilepsy……they have completely changed his life from what we thought it would be.  When placed beside his sister and brother, we can see a stark contrast.  Andrea, a scientist and geneticist in a major lab……and Andrew, working on a professional NHRA pit crew.  Their lives are dreams come true for both of them.  We love hearing about their work, even when we don’t understand half of it.  It’s exciting and fulfilling for them.
Aaron is like that cucumber, yes.  He has some chunks removed……some expectations that we had for him that had to be removed.  But he has amazing value if we but stop and look.  God does NOT create mistakes.  Aaron has tremendous worth.  He draws us to God in ways we probably never would have been drawn otherwise.  He keeps us humble.  Oh, does he ever!!  He keeps us at times bowed down with worry or frustration or embarrassment.  But listen to the verse God gave me this morning:
“But You, O Lord, are a shield about me; my glory, and the lifter of my head.”  (Psalm 3:3)
I love how God gives me what I need, when I need it, from His Word.  He lifts my head to look not only up to Him, but to look at Aaron with new eyes……eyes of faith and trust in the God Who loves Aaron and loves us.  God has a plan for Aaron that is every bit as important and amazing as the plan He has for Andrea and Andrew.  We just don’t always measure Aaron’s value that way, but God does.  And He reminds me on these days that I need to as well.
Aaron……my wormy cucumber……just in this little area of my house, God has once again spoken to my heart.  
Friend who is suffering today, never doubt God’s plan and His love for you.  Let Him be the lifter of your tired head.  He does care…..He does have a plan……for all of us.
Including my wormy Aaron.  My perfect Aaron, with lots of good in him that God is using. 

Caterpillars and Butterflies


This morning I read another small section of Elisabeth Elliott’s book Keep a Quiet Heart.  In the chapter entitled There Are No Accidents, Elisabeth talks about interviewing Judy Squier.  Judy was born with no legs, so Elisabeth asked Judy to write a letter to the parents of a little boy born without arms or legs.  I quote from part of the letter that Judy wrote to these parents:
“’What the caterpillar calls the end of the world, the Creator calls a butterfly.’  As humanity we see only the imperfect, underside of God’s tapestry of our lives.  What we judge to be ‘tragic – the most dreaded thing that could happen,’ I expect we’ll one day see as the awesome reason for the beauty and uniqueness of our life and our family.”
She goes on…….the whole section is excellent and struck a deep chord in my heart.  But my mind has been on that caterpillar and butterfly all day.  You see, last November I wrote a blog about how Aaron found a butterfly and how he wanted me to hold it.  It was a special moment for me that taught me such a sweet lesson.  Today I’m thinking of other aspects of that butterfly……who was first a caterpillar.
 
I’m thinking of the day that we first heard Aaron’s diagnosis of Epilepsy.  I remember how shattered I felt as I sat at my desk that night in Germany.  Our little blond headed blue eyed son had what?  Epilepsy?  What does it mean?  What WOULD it mean?  And I cried, deep sobs of pain and acceptance.  Nine years later……another doctor, another place, yet another diagnosis.  Autism?  Asperger’s Syndrome?  What does it mean?  What WOULD it mean?  And again, when the children were asleep, I cried deep sobs of more pain and more acceptance.
Pain and acceptance have been our familiar companions all along this journey with Aaron.  I know that many other parents feels this pain, some more acutely and more severely than we ever will.  The pain of medical tests….the pain of medicines for this and more medicines for that….the pain of hospitals…….the pain of IEP’s in school…..the pain of moving and having to introduce our child all over again in our new world…..the pain of his questions…..the pain of peer rejection……the pain of trying to understand what makes him tick and what just ticks him off, and why……the pain of my guilt when I blow it and I erupt along with Aaron…..the pain of questioning God……
Pain comes naturally.  Acceptance is a decision that I make.  Acceptance is usually slower.  It certainly has been for me.  Maybe he’ll get all better with time.  Maybe the seizures will go away after puberty.  Maybe this new drug will do the trick.  Maybe he can have surgery.  Maybe the VNS will kick in.  Maybe it’s not really as serious as all that.  Maybe the autism will improve with this diet.  Maybe those guys will be Aaron’s friend.  Maybe Aaron won’t move so much and talk so much during church today.  Maybe he won’t be grouchy when his bus comes to pick him up today.  Maybe he’ll just love his day group.  Maybe he can hold a job one day and be like everyone else.  Most of the maybes don’t happen…….and acceptance slowly sinks in.  Reality of life with Aaron has been slow going……very slow going.
But it’s not the end of the world.  It may the end of the world as we know it as far as our hopes for Aaron in certain areas……….but just like that caterpillar, there is beauty in this life that God has given us.  “What the caterpillar calls the end of the world, the Creator calls a butterfly.”  I held a butterfly that day last fall as I stood outside with Aaron, and I hold a butterfly in my life as I look at Aaron.  That’s because God is sovereign, and He has a plan for Aaron and a plan for our life with Aaron.  It’s a plan of beauty, even when I can’t see it as such.  
 
I have to hold on to that truth on the bad days, the sad days, the worried days, the heart-rending days of this life.  Oh, we have laughter and delight with Aaron but underneath it all are the concerns and the frustrations and the weight of always thinking about our special son.  And I deeply feel the weight of so many other moms……friends that I love and friends that I hurt for as well as they fight this fight and live this life for their special children.  
I want to tell them that God is weaving a beautiful tapestry of their lives.  They don’t feel it or see it any more than I do on many days, but God truly is a God of purpose and beauty.  So we lift each other up, we cry together, we pray for each other, we try to encourage one another……and we trust our sovereign Heavenly Father even when He doesn’t seem to answer our prayers in the way we want.
Acceptance…..of Who God is…..and how much He loves me and He loves Gary, and Andrea and Andrew…..and especially our special Aaron.  I want to hug my other moms of special children…..Wendy, Goldie, Shikara, Cheryl, Trish, Louise, and so many others.  I want to say that I may not have great words of wisdom, but I do have the truth….as do you…..that God is in charge of making caterpillars into butterflies.  
And He can…..He will………bring beauty into and out of our lives with our special children. 

Too Loud For Quietness


My thoughts lately often turn to the subject of quietness.  I’m not talking about the external quietness that we so often desire.  I get more of that sort of quietness than many people do, especially you moms with young children or those of you that work outside the home.  No, I’m talking about the inner quietness of my heart…….the quietness of contentment and peace, no matter what distractions I have around me. 
This type of quietness is hard to achieve outside of having a deep faith and trust in God.  Yet even though I may give myself daily to the Lord, beginning each morning with a new resolve to stay totally in tune with God and trust Him completely, I often find my heart……my insides……..my thoughts……..churning and stewing over this and that until I drown out the still, small voice of God that calls me to quietness.  
Life happens.  The world keeps turning and the news doesn’t get any easier to hear on most days.  Friends are hurting, neighbors need us, obligations demand us, chores press in on us……….life.  Even the dog needs to be fed!
And for me, there’s Aaron.  Last Monday he was in a terrible mood, but with God’s help I was able to be calm and to defuse him.  A stop for cheddar pasta salad worked miracles, believe me!  I was full of thankfulness, and was thinking over and over about how much God speaks to me through these lessons with my son…………lessons about God’s great love to me when I am most unlovely.  Boy, was that ever driven home the next day when I exhibited my unloveliness!  I totally lost my temper with Aaron, and then was full of guilt and remorse.  That day, I was the one who needed extra love.  And my heart was anything but quiet.
We never know what a day will hold.  There was Wednesday, after the upheaval of Monday and Tuesday, when Aaron had a doctor appointment.  We went to lunch at Chili’s after his doctor visit and just had a delightful time together.  Who would have thought that two hours after this picture was taken, Aaron would be laying in his bed having a huge seizure during his nap?  As usual, there was no warning……..nothing to prepare me or him for that.  And there again was another disruption to my quiet heart.  
 
On Saturday, we had a funnier disruption.  I was sitting on the patio, taking a break after doing some yard work.  Aaron joined me as Gary continued weed eating nearby.  As usual, Aaron was talking up a storm……and the more he talked, the more he rocked in the patio chair.  I looked down for a second and suddenly heard a grunt.   Looking up, I saw that Aaron’s chair had fallen backwards and he was laying in the grass…….laughing, thankfully.  One minute he was rocking and talking……the next he was flat on his back, feet up in the air, and thankfully unhurt.   Funny, but unexpected.
 
I remember when our children were young that there were many times I thought, “Oh, if only I had a day to myself.”  Now the kids are grown and gone, except for Aaron……but he’s gone to his day group every weekday……..during a good week.  Anyway, now I find myself thinking, “Oh, if only I had a day with Andrew and Andrea.  Too bad they live so far away.”   Then there are those evenings now when I think, “Oh, if only Aaron wouldn’t keep talking to me or asking me to do something with him.  If only I had an evening with no expectations or interruptions.”  And many times when I think, “Oh, if only Aaron wasn’t so grouchy……or so loud……or so demanding……..or so whatever.”  In other words, I tend to be pretty demanding myself of what I think will make my life just as it should be.  And out the window goes any hope of a quiet heart as I try to manufacture the perfect life that will create the quiet heart I crave.
I just started reading the book Keep a Quiet Heart by Elisabeth Elliott.  She said, talking about developing a quiet heart in this loud world, that “The secret is Christ in me, not me in a different set of circumstances.”  Wow!
So often I want the different set of circumstances……when in reality, the circumstances I am in are the ones that God wants to use in order to develop in me a quiet heart……..a heart of trust despite what’s going on around me.  A heart of acceptance for what He has allowed and even ordained to be in my life.  
Elisabeth also said, “Every assignment is measured and controlled for my eternal good.  My assignment entails my willing acceptance of my portion.”  It’s how I respond to my circumstances that will dictate my level of quietness and peace………not the circumstances themselves.  Like Paul said, “I have learned in whatever state I am in, therewith to be content.”
I’ve walked with the Lord for a long time, and still I have so much to learn.  I sure am glad that God is patient, even when I’m not.  I still want to tell Him that He’s using the wrong measure for me.  “Lighten up, Lord!” I sometimes say.  Instead I should be accepting and even thankful for what He measures out in my life.  That’s when I know I will experience a truly quiet heart.  
For quietness really is surrender, even while life spirals around us.  It’s Who we surrender TO that makes the difference……not what we’re kept FROM. 
Be quiet…..and know that I am God.

What’s So Best


I haven’t been doing much writing lately.  Part of it is that I’ve been very busy.  Gary and I traveled to Ft. Worth for Andrea’s graduation, and then to Topeka to watch Andrew in an NHRA race.  But I’ll admit that another reason I haven’t been saying a lot is that Aaron has taken a lot out of me, and of Gary, as well.  He’s been extra grouchy for a few weeks, and so I haven’t had the energy or the desire to sit down and write. 
He came in the room where I do my quiet time early one morning.  “Are you ready for a good day today, Aaron?” I brightly asked. 
 
“No,” he flatly answered as he turned and walked away.  And that is just how it’s been lately.   It seems that he’s just decided not to have good days. 
Why has he been grouchy?  If only we knew the answer……   Is it medicine related?   One of his new seizure drugs can have irritability as a side effect.  Aaron wrote the book on being irritable, trust me, so I was alarmed when I heard about that possible result of taking this drug. 
Is it seizure related?  He had a seizure episode this past week and since then has been markedly better.  Did the seizures rearrange things in that brain of his and calm him down?  Who knows?
Or is his grouchiness game related?  Since we let him have an old Star Wars game to play again, several weeks ago, his anger episodes have increased.  We can’t help but think it’s partly related to that, but how to get the game back has been an issue.   Then the most amazing thing happened.  When we got back from Topeka, Aaron told Gary that his game wasn’t working right.  Gary sat down to have a look and found that the only thing wrong is that the hologram image in one part of the game was messed up.  The image appears and the game works right, but the image has changed some and most of all…….Aaron can’t see the eyes of the hologram.  To Aaron, this is beyond unacceptable.  If he can’t see the eyes, he refuses to play the game.  He handed the game to Gary when he saw that Gary couldn’t fix it, and that was that.  No more game.  What a tremendous blessing!!
While Aaron was in his prolonged grouchiness he broke some things.  Aaron usually breaks things that are important to him.  In addition to a few items in his room that got banged up, he also broke his watch and his glasses.  The glasses, of course, were the worst.  He’s been wearing an old pair for several weeks as we hope to teach him a lesson.  And he’s not had a watch on his wrist for awhile now.   Will this teach him a lesson?  That’s hard to tell, but we keep trying.  Even with something like autism, we think it’s important to keep trying to reinforce positive behaviors.  And there are some days that I wonder who needs that reinforcement more……Aaron or me.
He was showing improvement last week, slowly, but still had a morning when he was not wanting to go to his day group.  As we pulled up beside his ride in the Quik Trip parking lot, he got out of the van and voiced his anger at me for making him come.  Then he took off for the store instead of getting in the other van.  He walked all the way across the parking lot very slowly, head down and looking as if the weight of the world was on his shoulders.  It was a little funny and a little sad and a lot frustrating.  I have no idea what people all around there thought.  It’s probably good that I don’t know.
Yet that afternoon Aaron bounded in the door after his day group, very excited to tell me about the barbecue in the park that he had gone to that afternoon.  “Mom!  Guess what?  At that grill thing I ate a LOT of hamburgers!!”  I asked him how many he ate and he breathlessly replied, “FIVE!!”  
“Man!!” he continued.  “You can guess I’m stuffed!!”  
And that night, or early morning, he had his seizures and was out of commission for most of that day.  But the next day, Friday, he was happy and was like our old Aaron.  He was bright and funny and wanted to talk a lot.  Even when I went out to the garden for an hour, I looked up to see Aaron coming outside.  The grass was damp, so he just walked to the end of the brick walkway and sat down, where he could still talk and talk to me.  This did my heart as much good as I think it did to Aaron’s.
 
He had a nice weekend, too, alternating between another game he’s playing and videos he’s watching and going outside and watching taped shows and Wheel of Fortune and even a little racing.  Gary and I also took him to Wal-Mart, where he couldn’t pass up the music display with the buttons that said, “Push”……….because if the button says push, then Aaron will push it, and love every single push.  He also got to pick out a new watch, paid for with his own Christmas money, and is happily wearing it pushed up his arm the way he likes it.  
 
Aaron’s been watching a movie that I don’t like.  He came into the kitchen on Sunday and found me watching a race clip on my notebook.  He immediately started asking me to watch a clip of his movie, so I suggested that he watch some racing videos….knowing that he wouldn’t want to do that and so I could make my point.  
“You don’t enjoy racing and I don’t enjoy your movie,” I reminded him.
“If I enjoy that,” he asked, “then will you watch my movie?”  
   
I laughed and he continued.  “Can I bargain you?” he excitedly asked. 
There’s Aaron, expressing himself in that unique way of his.  Like when he saw another Eggland’s commercial.  “Mom, Eggland’s say they have the best eggs.  What’s so best about them?”  And I laughed and nearly forgot to answer his question, put in that awesome way he has.
When I took him to his group on Friday, after working in the garden and having Aaron sit there like a Buddha talking to me across the yard, I was so relieved to see him still in a great mood.  I didn’t even mind that he picked out his Elvis tape to listen to in the van.  It’s not my favorite, but Aaron has been so unhappy lately that he hasn’t even wanted to listen to music.  Very unusual!  So when he wanted music, I would not have said no to Elvis………but I did change CD’s when he left the van.  
After I dropped him off, I drove to the eye doctor’s office.  I had decided to go ahead and order him those new glasses.  It was time.  I know that things may change again, and that I may be doing this same thing several months from now.  Picking up the pieces, repairing the damage if we can, and moving forward.  
It’s what all parents do.  It’s what we do often with Aaron.  We can’t always fix him or fix his situations.  Sometimes it works out for the best, like with the unfixable computer game.  Other times we try to teach a lesson in the brokenness, making him wait and hopefully learn, not knowing if he will learn or not.  But we must try. 
And so I come to my day today.  I was in Wal-Mart when my phone rang and seeing the number, I knew that it was Aaron calling from Barb’s phone at Paradigm.  “Mom!” he said.  “You told me to have a good day and so I am!  Except for that girl’s arm that has a red mark.”  
The girl’s arm with a red mark?
And Aaron told me that he got excited and was just playing……….and I know just what that means.  Aaron’s way of playing when he gets too excited is to whack someone with those big beefy hands of his.  He did that, and the poor girl had a red mark to prove it…….and Aaron had to stop having so much fun. 
Then later he got home and was downstairs talking to me when the doorbell rang.  There stood Miss Rosa, who brings him home, and who had a question for Aaron.  She had just gotten a text asking if Aaron had some keys of Barb’s, so there at our door Aaron pulled Barb’s keys out of his pocket……….keys he was just trying to guard from Victor, he said. 
That’s why Aaron and I just drove to Quik Trip to meet Barb and return her keys.  He also showed us the mandarin orange that was in his pocket.  I really do need to frisk him when he comes home.  
And that’s why Aaron and I were listening once again to Elvis.  “Hey Judy?!” Aaron asked as Elvis belted out Hey Jude.  We got to see the baby bulls in the field, and I had the rare pleasure of Aaron putting his arm around my shoulder.  Things I would have missed if Aaron had just had a perfect day and not tried to guard Barb’s keys.  
Well, that’s the way it is.  I can’t fix Aaron much of the time, though there are areas in which I do try. 
I’m just thankful for the days that I can enjoy Aaron……..for seeing the silver lining on the cloudy days.
That’s what’s so best!

God’s Gift…..Baffled But Blessed

 I was reading 2 Kings 4 yesterday – the story of the Shunamite woman.  It’s a story you may know, but what I read in my commentary/devotional book by Dale Ralph Davis gave me a new insight that totally blessed me……..so I hope it will do the same for you as well.  You probably know the story.

Elisha often passed through Shunem on his travels through Galilee.  A Shunamite woman of wealth and standing began opening her home to Elisha, extending her hospitality by offering him food and rest.  This woman urged her husband to add a room on to their house, a guest room of sorts where Elisha could spend the night.  During one of those stays, Elisha decided that he wanted to reward the woman for her kindness.  He asked her if he could put in a good word for her to the king or to the captain of the army.

The Shunamite woman said no to Elisha, explaining that she had all that she needed or desired right there in her own community.  But Elisha still wanted to do something to thank this woman, and so Gehazi, Elisha’s servant, reminded him that the Shunamite had no son……….and her husband was very old.  Elisha called the woman back and then proceeded to tell her that by this time next year, she would have a son.  At first she didn’t believe it, but sure enough, to this woman and her old husband a son was indeed born. 

When the son was grown, he went out to the field one day to help his father.  He complained of his head hurting and was carried back to his mother, where he soon died.  He was placed on the guest bed in Elisha’s room, and then the Shunamite rode a donkey to Mt. Carmel, where she found Elisha.  She grabbed his feet and in great distress she reminded him of God’s promise of a son for her.  A promise that now ended because her son was dead.  Elisha returned to her house, and through God’s intervention the son was restored to life.

What so impressed me as I read Davis’ commentary was this:  The Shunamite woman, when asked by Elisha if he could put in a good word for her, said no…..that she had all she needed.  She had no need of a favor or a good word or anything, really.  She had position and money, a husband and a home, and a strong community.  No needs.

Yet at the end of this story, she is very needy as she pleads for Elisha’s help.  What had made her needy?  God’s gift had made her needy.  God had given her a son, a beautiful gift of a son, but through that gift she had now become very needy.  God gave her a gift, but then He took it away.  Does this mean……that God is mean?  Does He enjoy giving good gifts only to enjoy taking them away?  Does He “make glad, only to increase the pain?  Does He lift us up only to drop us all the harder?” (Davis) 

The Shunamite clutched Elisha’s feet and sobbed in bitter distress as she pleaded for his help.  And in her sobs and her distressful pleading, she was exercising faith in God.  The God Whom had so blessed her was now perplexing her and crushing her.  And as Davis said, “What can you do when God’s mercy has turned to malice?  Take the bitter distress and in it keep clutching at the God you don’t understand.  We have a word for that: faith. (Which tells us, by the way, that faith is not serenity.)”

My mind turns to our Aaron when I read these words.  He was such a wonderful gift from God to Gary and me.  We had been married for over five years when he was born.  He was a precious little 6 lb. 4 oz. bundle of blessing to us. Our firstborn!  I knew that no other woman on the earth had ever felt as much joy as I was feeling as I looked at him in my arms.  I was so proud and thankful.  A son!  Boys were rare in our family and there I was, with a son.  A SON!

The days turned into months and the months into years.  Then came the seizures, along with behaviors that only increased with age instead of improving.  School issues, finding doctors, trying all sorts of medicines, friends or lack thereof, sibling problems, the autism diagnosis, endless meetings with professionals, embarrassments, and constant awareness that our life was often rotating around Aaron.  It was overwhelming, and totally not what I thought life would be like for us and our Aaron……our son.

It was often hard to capture that joy and pride I had experienced when he was born.  I loved Aaron……I love him now……but it’s often been through a haze of sadness because of his condition, and frustration because of his behaviors.  As I read what Dale Davis wrote, though, it hit me square in my heart.  God’s gift of Aaron to me has made me needy…..and being needy has made me learn to rely on God in a way I might not have done otherwise. 

 
Like Davis said, I have often found myself clutching at the God that I don’t always understand….and that is called faith.  “Faith is not serenity,” Davis said.  That’s certainly true in my life.  Not only is life with Aaron rarely serene, but the raging questions and disappointments in my heart are anything but serene. 

Is Aaron our thorn in the flesh like Paul had?  Maybe.  I do know that beside certain verses in my Bible I have written Aaron’s name and a date, my signpost of ways that God reached down and spoke to me concerning Aaron issues.  God has certainly used this gift of Aaron to draw me to Himself in a way that perhaps I would not have ever experienced without Aaron in my life. 

I want to remember that phrase……..God’s gift has made me needy.  Needy for God and needy for faith………a faith exercised in sometimes very trying circumstances and a faith exercised without always having answers to my questions. 

Davis said, “……the story is here to reveal your God – the God Who delights to amaze His ‘ordinary’ people with good gifts; Who sometimes baffles us with the mysterious sorrow He brings…..”

God baffles, but He also blesses. 

Much like Aaron does in my life………from baffling to blessing, over and over.