It's My Choice

“I am NOT going to Paradigm today!!” Aaron yelled at me. 

Here we go, I thought.  This will be one of those mornings.  And it was.  It all happened last Friday.  I’m not even sure what set Aaron on that anger path, but he was on it for sure with no apparent sign that he would exit anytime soon. 

“Go away from me!” he loudly said. 

Yet he kept coming into my room while I got ready, standing there telling me angrily that he wasn’t going to his day group.  But he knew the consequences of that decision without me uttering a word.  No Friday pizza.  He was in quite the dilemma as he stood there asserting himself, knowing that the further he dug his own hole, the further away he would be from his pizza supper.  Plus I wasn’t responding back to him the way he wanted.  He wanted anger from me, which would only feed his anger.  Aaron was ready for a verbal fight, and Mom wasn’t cooperating.  I stayed as calm as possible while still being firm, even though I wanted to yell every bit as loud as he was. 

Finally Aaron stomped away, walking up the hall to his room.  And then I heard it.  Aaron threw something up the hall, where it landed on the floor outside of my bedroom.  I knew what it was without looking.  It was his watch…..his broken wrist watch.  He had broken it at Paradigm almost two weeks earlier, although the details are still unclear. Nevertheless, it was broken and I didn’t replace it immediately.  So on this anger morning, Aaron decided to focus his anger on his broken watch….demanding a new one once again and complaining about how much he needed his watch. 

Aaron could tell that I was getting ready to leave the house, with or without him.  “OK!!  I’ll go, if you’re going to MAKE me!!” he said, dripping with frustration.  I silently went to the van, where he followed me and then stopped.

“Wait!” he said.  “I have to get my watch.”

He went back into the house and retrieved his broken watch, stuffing it in his pocket.  He couldn’t wear it on his arm, but every day he had put it in his pocket and taken it with him anyway.  Today was no different.  We were mostly silent on the way to Paradigm.  It was later than usual.  Aaron was sullen and still steaming.  I was deflated and tired. 

Earlier, as my friend Atha and I texted, I had said to her, “There are times I truly wish for a normal life.”  I always feel guilty after expressing myself that way, for I know that this life is what God has somehow allowed me to have.  I want to be like Esther, who came to realize that God in His sovereignty had put her in the place she was for that particular time.  Yet sometimes the place of us special needs moms seems to just be a place of frustration and dreary sameness.  We do get tired, especially on the angry days such as I was having with Aaron.

He got out of the van, still irate but somewhat calmer.  I just drove away, weary.  But I thought about Aaron with his broken watch in his pocket, carrying it with him all that day.  He also carries something else with him, something that often feels broken.  My heart and spirit.  A mother is a mother, forever changed by the children that carry part of her with them for the rest of their lives.  Aaron isn’t the broken one, but I often am.  I need God’s grace and strength so many times on this road, and He never fails me.  But I still feel the pain in my heart, my heart that Aaron unknowingly carries with him…..tucked away, just like his broken watch.

 

Later, I walked in the house and my eyes were drawn to a very little porcelain figure perched on top of our DVD player.  Aaron and I had set it there a couple weeks earlier.  I thought of the story told by that little figure, the love it represents.

Aaron had been to the zoo on Friday of that week.  He came home, excited to tell me about his favorite animals that he saw.  When I asked him if he had bought anything to eat, he told me that he had not bought any food but had instead bought something for me.  But with regret he told me that he had left it at Paradigm. 

“I can’t tell you what it is, Mom!” he exclaimed.  “It’s a surprise!!”

So when I took him to Paradigm after the weekend, on Monday, he was very excited for me to come inside with him so that he could hopefully locate his surprise for me.  He barreled into Barb’s office with me in tow, and Barb immediately pulled out of her desk a small brown bag from the zoo.  Aaron couldn’t wait for me to open it as he handed it to me.  And there inside the bag, wrapped in bubble wrap, was….well, what was it?  It was so tiny that I couldn’t exactly tell.  Aaron was rubbing his hands together as I gingerly pulled out a little porcelain zebra.  Why a zebra?  I have no idea.  But I loved it.  I loved the fact that Aaron had spent all of his money on Mom…..even though I worried that he went hungry.  What a special, loving gift from my son!

Now it sits on top of our DVD player, where it’s mostly safe from being broken.  You can hardly see it from across the room, it’s so little.  But the joy on Aaron’s face when I opened it was huge, and so was the joy in my heart. 

My heart, like all mom’s, holds at times great joy and then at times great hurt.  As with every situation in my life, then, I have a choice to make.  I can’t ignore the hurt forever and I can’t capture the joy forever.  We all experience both.  But I can choose which to dwell on the most. 

I can linger on the brokenness and carry it with me, like the watch in Aaron’s pocket as he carried it there day after day.  Or I can choose to see the beauty, hard as it may be, that does often surround me in my life with Aaron.  Brokenness or beauty…..it’s my choice.  In every area of life, that choice is mine to consciously make.  As I deal with Aaron, it’s also a decision I must choose. 

Will I see Aaron as a blessing?  Or will I see Aaron as a burden?  Will I allow my grumbles and sighing and my desire sometimes for a “normal” life rule my thoughts?  Or will I pull back, take a breath and pray to my heavenly Father, and then choose to see the blessings?  Even at the end of the day, if all I can say is, “Well, at least Aaron and I are both still alive.”  Hey, I’ll take it!  It’s a blessing!!

On that angry Friday, that tiny zebra reminded me that I do have many blessings and joys in this life with Aaron.  Sometimes they’re harder to see than at other times.  Sometimes my spirit is very frustrated and tired…..but so is everyone.  Really, we all experience plenty of both in our lives. 

 

What will it be? 

Brokenness…..or beauty?

Burden……or blessing?

A text from Atha this morning was perfect:  “Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name.  For the Lord is good and His love endures forever; His faithfulness continues through all generations.”

 

 

Lessons From the Toad

I saw him out of the corner of my eye as I watered one of our back flower beds on a very hot afternoon. I wasn't sure what it was that had drawn my attention and so I leaned down slightly to see what had created the slight movement that I had seen. And there he was, with his head and half of his body sticking out of his little underground home. A small toad! So now I knew what had been living in that mysterious hole that had been dug in the mulch among the pink Coneflowers. I was very relieved that it wasn't a huge spider, for one thing, and I also thought that this wee fellow was pretty cute.

 As I gently sprayed the flowers in the summer heat, my small toad neighbor just stayed where he was. And as he sat there with a little mound of fresh dirt on his head, I observed some toad behavior that I had never seen before. He lifted his head slightly as the water softly fell on him and then shook his head a bit. He blinked his eyes but didn't seem bothered by the water that fell over his face. In fact, I thought that he was enjoying the cool shower that was cascading over his hot, bumpy body. It certainly was a very stifling day and I could imagine that he was pleasantly relieved at this unexpected relief from the dryness and the heat.

 

 

As I watched my toad's reaction to the cool water, I thought of the times in my life that I have felt completely worn out and depleted from the heat of life's unrelenting ups and downs. At times I have felt dried up and burnt from the stresses that this life can bring. It seems that there is no relief as day after day of disappointments or worries beat down upon my unprotected head. Yet in my heart I know where relief can be found. I can say with David in Psalm 63:1 - "O God, You are my God; I shall seek You earnestly; My soul thirsts for You, My flesh yearns for You, in a dry and weary land where there is no water."

Meeting God in His Word and in prayer is where my cool, refreshing relief is to be found. He is there to quench my thirst and His Word is there to revive my dry, parched soul. Then I can say along with the Psalmist, "This is my comfort in my affliction, that Your Word has revived me." (Psalm 119:50) I want to let the refreshment that God offers me wash over my spirit. I want to lift my head, blink my eyes in wonder and praise, and let His Word revive me so that when the heat is on, my soul is calm and my spirit is renewed. Thank you, dear Lord, for the little bumpy toad You sent my way!

Everybody Breaks Things

Have I told you that Aaron doesn’t like for his world to be upset?  Yeah, I knew I had.  And I’ve also told you that when Aaron’s world is upset, Gary and I usually end up in the turmoil as well.  We were reminded of that fact last night, once again.

Yesterday was a fun day for Aaron.  He and I went to see Night at the Museum while Gary took care of some work around the house.  Aaron and I shared popcorn, which of course we couldn’t start eating until the movie had actually started. 

“Now, Aaron?” I asked as we sat down.

“No,” he answered.

“Now?” I asked again as the screen was showing all sorts of things to keep us entertained before the movie started.

“No,” he patiently repeated.

“Now?” I asked when the trailers began.

“No,” he said once more.  “Not until the movie STARTS!”

So when the movie started, he said, “Now!”  And I reached down for our bucket of popcorn, feeling like I was beginning a race.  Which it kind of was as Aaron ate fast and furiously, determined not to let me cheat him out of his fair share of popcorn with extra butter.  I had already confiscated most of his HUGE stash of napkins he managed to grab while I wasn’t looking, but he was NOT going to let me do the same with his popcorn!

After the movie, we ate a very unhealthy supper at Burger King…..but Aaron loved every bite, and I tried to eat mine without too much guilt.  We came home and watched Wheel of Fortune.  It was a nice day, full of Aaron’s favorites.  He went to bed happy, and ready to read a little in his Handy Answer Gardening Book.  He could care less about gardening and plants but it’s the next book in his order of books and so he MUST read it…..and he is…..Every. Single. Word.

We said our goodnights and Aaron finally settled in to read, after following me a couple times to my room.  Finally I was alone and able to start my bedtime routine.  Gary was still downstairs.  After some time, my door burst open and in stormed Aaron.  I was beginning my routine lecture about knocking before he enters when I looked up and saw his face.

His face looked flushed, and his eyes were wild.  He was breathless as he said, “Mom!  You have to come here!  I need you to see something!!”

I could tell that whatever the something was, I had better go see it now.  It didn’t matter about being tired and wanting to go to bed.  Aaron was desperate, and I could not imagine what was wrong.

He hurried up the hall to his room, with me following….full of dread.  We walked in his room and there it was.  Aaron had done something to his desk drawer.  His explanation wasn’t quite clear, but whatever he had done, the large center drawer to his new desk had broken.  All the items that were in the drawer were on the floor, as well as the drawer bottom and the front of the drawer with the handle. 

He was very, very upset…..a combination of wondering if he was in trouble to just being sick that his new desk was now broken.  He kept saying he was sorry, and saying he was scared, and trying to decide what to do, and if the desk could be fixed….and I’m sorry, I’m sorry, I’m sorry.  I felt very sorry for HIM, after the shock of what had happened quickly passed.  Gary came upstairs then, and we both assured Aaron that it was fine and that we would look at it tomorrow. 

Finally we were all in bed.  We hoped that Aaron would sleep.  He was so upset and agitated by what had happened.  Gary and I lay there, trying to go to sleep, when through the baby monitor we heard Aaron softly say, “I’m scared.”  I wanted to run in his room and assure him that it was OK, but I knew I needed to stay put and try to let him calm down.

After a few minutes, he spoke softly again.  “I should listen,” he said.  Oh dear!  I felt so bad.  How many times have I told him that he should listen when we tell him something?  Now he was saying those words as he lay there all alone, his mangled desk drawer a reminder of how he doesn’t listen.  Gary could read me even in the dark.  He told me that Aaron was all right.  I wanted to believe that.

Later, before Aaron went to sleep, he said something about a nightmare.  And I just prayed that Aaron would soon go to sleep, which he did, and finally Gary and I did, too. 

I heard Aaron stirring early this morning.  Once again, he spoke, saying something again about a nightmare.  When I got up soon after, I saw Aaron’s light on and so I went in his room.  He was sitting there at his computer, headphones on, with his feet trying to rest on the floor without touching any of the mess that was there from the broken drawer.  I patted his shoulder, and smiled at him as he looked at me.

He and I then picked up the items on the floor and put them in a plastic crate that was in his closet.  I placed the crate on his bed, and went on downstairs.  Soon Aaron followed, and in his arms he had the crate full of his stuff.  He set it on the kitchen table.  And I noticed how awful he looked.  His eyes were so tired.  He looked as if he had hardly slept.  All of this stress over a broken desk drawer!

 

As the morning wore on, he seemed a little better.  He clipped the few coupons that were in the paper, drank his coffee, and showered.  I carried his box of desk items back up to his room.  After his shower, he came back downstairs.  In his arms was the crate full of his desk stuff again, which he put back on the kitchen table. 

 

“You don’t want that in your room, do you?” I asked him.  He solemnly said no, so I left the crate there, knowing it wasn’t worth upsetting him further.  Gary told him that he thought he could fix the desk drawer, and I could see Aaron relax some.  Then I remembered something!

“Aaron, come look at something,” I told him.  He followed me into the guest room, where I showed him something that was laying on the bed.  It was the very nice frame from the beautiful framed piece that Megan, Andrew’s girlfriend, had given us for Christmas.  The frame I had broken one day, by accident…..but broken none the less.  I felt so horrible the day I broke that frame, but now I was almost thankful for it because I could use it to show Aaron that he wasn’t alone in how he felt.  He wasn’t alone in HIS brokenness.  So that’s what I told him.  I told him how I broke the frame and of how awful I felt about it.

“So everybody breaks things,” he quietly stated.

“Yes, we do,” I assured him.  “We all break things.”

And with that, Aaron was ok.  He went back to bed and slept for a couple hours, waking up fresh and happy once again, and with no talk of broken desk drawers or mess on the floor. 

He knows that Dad will try to fix the drawer…..and if anyone can fix the drawer, Dad can! 

And he knows that Mom recently broke something very special, and though Mom felt terrible about it, she was all right…..and he would be all right, too.

But most of all, Aaron knew that he was not alone and that he was forgiven.  And in that companionship and forgiveness, the world was right once more. 

Not just for Aaron, either.  It worked both ways, for Gary and me as well.  We share Aaron’s turmoil, yes, but we share the joy, too. 

Have I told you it works that way?  I’m sure I have. 

 

 

The Darkness

On Thursday evening, Gary and I noticed that Aaron didn’t seem quite like himself.  He became lethargic as the evening wore on, even falling asleep sitting up in his favorite family room chair.  Then he wanted to go to bed early…..and for Aaron to agree to a bedtime before at least 10:00 is very unusual.  It’s like his lunch at 12:00 mindset.  Bedtime should not occur before 10:00 in Aaron’s world, so his desire to head on up to bed at 9:30 combined with his tiredness made Gary and I wonder what was going on with him.  

Therefore, we weren’t too surprised to hear him having a seizure a couple hours later.  It was a very hard seizure, lasting about four minutes.  Three other long, hard seizures followed that one during the night.  He wet the bed after the second one, bit his tongue during the third one, and I walked in his room at his fourth seizure to find him on the floor.  We have no idea how that happened, because he was in a sitting position with his back against his night stand.  Blood was coming from his mouth as he bit his tongue again.  Gary and I eventually got him back in bed, and then later before Gary went to work he was able to get Aaron a little cleaned up before helping him downstairs to the couch.   

 

Aaron slept all day, with only a few short waking moments when I was able to give him his pills or something to drink.  At 3:30 he woke up and told me that he didn’t feel like going to Paradigm.  He was so shocked when I told him that it was 3:30 in the afternoon……that he had totally missed Paradigm that day and didn’t have to worry about it.  He had no memory and no idea of what had happened. 

I don’t tell all this to garner sympathy or to any way embarrass Aaron.  I tell these things in an effort to share with others the faithfulness of God in the midst of pain…..the pain of a mother for her son, in our case……the shared pain of parents bearing this burden together……...and the pain of fear that often tries to settle its icy grip in our hearts.

This seizure episode for Aaron has been a bad one.  In fact, he had another small seizure early this morning.  He got up later but wanted to go right back to bed.  His tongue is extremely sore and damaged, and he also has a sore throat now.  Worry and sadness could easily be my companion this morning.

Sadness was definitely near me yesterday morning as I sat at the kitchen table while Aaron slept nearby.  At times like this, I desire to hear from God.  I know that the comfort He gives is like no other.  I don’t doubt Him.  I don’t question why he allows this to happen.  I’ve gotten to know Him over the years and I know that He is always loving, and good, and that His sovereignty is beyond my understanding.  I trust Him.  What I desire is His comfort during the moments when my heart is a little fractured, and my emotions are raw.

I would like to remain free of emotion when it comes to Aaron and his special needs.  Emotion hurts.  Emotion means that I’m thinking of Aaron and what he is enduring…..and what he’s missing in life……and what the future might hold.  But how can a mother keep her son at arm’s length and not at times deeply hurt over his pain?

Such was my morning yesterday.  I was hit with the reality of Aaron’s suffering.  I cried.  I just let myself feel the pain for a few moments and I cried in my hands.  And God saw His daughter crying and He comforted me.  I love, love, love how He speaks to me through His Word when I need it the most.  I’ve started reading Daniel, and there it was.  My eyes fell on Daniel 2:22:  “…..He knows what is in the darkness, and the light dwells with Him.”

Most of Aaron’s seizures are during the night as he sleeps.  I detest that sound coming out of the baby monitor on my nightstand…..the sound of Aaron’s seizure beginning.  It jolts me out of sleep and it always fills me with dread.  I never get used to that awful sound.  And the darkness.  Our room is dark, the hall is dimly lit, and Aaron’s room is very dark.  I turn on his light, not knowing what I will see, and I stay with him until the seizure is over and I know he is safe.

Then usually I will hear that gasping sound later again coming from the monitor as another seizure begins.  The scene is repeated…..the darkness…..the dread…..the fear.

So this verse from Daniel was very special to me.  Once again, God reached down to me in my particular situation and spoke especially to me as the loving Father that He is.  He knows!  He knows what is in that darkness that I face, whether it’s the physical darkness of nighttime seizures or the darkness that fills my soul with fear for Aaron.

And guess what else?  Listen to Psalm 139:11-12:  “If I say, surely the darkness will overwhelm me and the light around me will be night….even the darkness is not darkness to You, and the night is as bright as the day.  Darkness and light are alike to You.”

Those words are so sweet to me.  I felt overwhelmed yesterday with hurt and fear for Aaron.  It’s a darkness as real as the darkness I face when I am awakened with the sound of his night seizures.  But God is there in the dark.  He’s the light!  There is no darkness to Him.  He knows my dark fears and He knows my pain, yet He was there yesterday to remind me that He is light in my darkness.  He knows what is in my darkness as I hear Aaron seizing, and as my own heart is seized with sadness and with dread.

I can trust Him with my pain, and I can trust Him with my son.  He said that darkness and light are the same with Him…..and that the night is as bright as the day.  His promises and His peace are my light in the darkest dark.

So I took our beautiful bright sunrise this morning as God’s personal gift to me.  I relished it as His reminder that no matter how often I feel that the light around me will be night, God says, “No way!  The light dwells with me….and so do you, little daughter.  Now enjoy My light, even when it seems dark.”

We have a good God.

 

 

 

 

 

My Chains

I had a huge reality check this morning as I read a chapter of the book The Message of Philippians by J.A. Motyer.  The apostle Paul was imprisoned when he wrote the book of Philippians.  He was suffering unjustly and painfully, simply for believing in Jesus and proclaiming the gospel.  He had suffered so much over the years in every area……physically, mentally, spiritually.  So here Paul sat in prison and what does he say?

“…so that it has become known throughout the whole praetorian guard and to all the rest that my imprisonment is for Christ; and most of the brethren have been made confident in the Lord because of my imprisonment, and are much more bold to speak the word of God without fear.”  (Philippians 1:13-14)

Motyer gave the visual then of Paul holding up his chained wrist, but instead of pointing at his chafed wrist he makes us look at what effect those chains are having in his own life and especially on the work of Christ in others.  The guards are hearing the gospel…….others are hearing the gospel……..the brethren are gaining confidence……….believers are becoming bold.  

And I thought about myself, and the puny little trials that I have gone through.  What do I often do when I hold my chained wrist up?  I know me, and I’ll tell you what I find it so easy to say and do.  I point to my bleeding wrist and I talk about my pain.  I wonder about why this or that happened, even when I know God is in charge.  I concentrate on the pain that my chains are inflicting on me.  I focus on the injustice and the ones who are responsible.  In other words, I so often do everything but what God wants me to do.

God wants me to look through the links of that chain into His eyes, and to trust Him totally.  He wants me to see Him instead of the chain.  And more importantly, He wants me to point others to what I see as I look at Him.  I see His love and I trust His character, and He wants me to talk about that instead of pointing to the chains.  

It’s not about me, as much as I want it to be.  It’s not about proclaiming my pain or the wrongs I may have suffered or the hurt I am enduring.  It’s so easy to do that, though…..to focus on me and on the suffering.  There is actually a strange kind of comfort in that attitude, but it’s so wrong.  

Speaking of Paul, Motyer said, “He did not see his suffering as an act of divine forgetfulness (‘Why did God let this happen to me?’), nor as a dismissal from service (‘I was looking forward to years of usefulness, and look at me!’), nor as the work of Satan (‘I am afraid the devil has had his way this time’), but as the place of duty, the setting for service, the task appointed.”

Even when God directly answers prayer I sometimes cringe, pull back in pain, and then act surprised by the route God has chosen for me.  Whatever the issue is in my life, I need to realize that God wants to be honored in it……..not questioned.  It takes time and practice and great trust to accomplish that attitude, which unfortunately sometimes means more time in the trial.  More time with those chains around my wrist.

So I hold up my wrist to others, and what do they see?  They see what I focus on……what I talk about……..what I point toward.  Will I be Paul and magnify Christ with my chains? 

“How that word ‘now’ needs to eat its way into our minds and hearts and wills!  It is now that we must show how great Christ is.  Never again will we have the chance to live for Him through this moment, to please Him in this circumstance, to gladden Him by trusting in this ordeal.”

It’s not easy.  It takes resolve to change my focus.  Every single day, many times a day, I know I must refocus my eyes.  My hurting wrist……the rusty chains…..the ongoing pain.  Whether it’s Aaron issues or hurt from others or sadness from those I love who are suffering or worry about our loved ones………it doesn’t matter.  God is there.  He has a plan and a purpose.  

Now…today…this moment – holding up my hands to God and not even noticing the chains.  That’s my desire.