You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights.  Gary was already trying to go to sleep, and I wanted to do the same.  But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much. 

“AARON!!” I hissed.  “Why are you in our room?” 

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied.   “Now go to bed!”

Not long after, it happened again.  Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron.  Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm.  Another bad report this past Monday just took all the wind out of me.  Gary and I feel like nothing is working, but something has to make a difference.  We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying.  Praying a lot.

I was so thankful for the verse that God gave me this week.  The portion that meant so much to me was this phrase: 

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.”  (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us!  One of us gotta have some relief!!” 

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness.  But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room.  Soon he walked up to me and handed me one of his sticky notes.  Here is what he had written:

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Bless his heart.  He really wants to do better, but finding that better is very difficult for him in certain circumstances.  Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday. 

That verse God gave me early in the week was perfect.  We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways.  The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth.  In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened.  I was out with my little elderly friend, Nora, when I got a text.  This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago.  Dona and I rarely text, so I was surprised and a little alarmed to see her name appear.  I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with.  We briefly texted, with her telling me that I had just been on her heart and mind.  God at work, without a doubt.

I could hardly wait to get home and call her.  We talked for quite awhile.  She told me again that she kept thinking about me and so she prayed.  I love it when God does these things!  He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s.  We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt. 

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!!  He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!”  he boomed.  “I want to give you a rose!!  Because I love you!!”

And with that, he gave me the biggest hug!  I thought my heart would explode!

The love note…..the rose……the hug. 

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night.  BAM!!  There he is again, full of talk and excitement, no matter how tired we are. 

“Are you sure you want me gone?” he asks.  No, Aaron, not gone…..but resting.  Go rest, and let us do the same.

His behaviors can be so very tiring.  This past week has been emotionally exhausting for us, as well as physically.  We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone.  We just want him to be happy, and to know how to behave in a way that makes others happy, too.  We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief.  I know He’s listening…..I know He cares……I know He’ll answer.  He’s already impressed others to pray for us.  That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life.  One so often shows me the other. 

I just have to be making an effort to look sometimes. 

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My View

I was in TJ Maxx with my elderly friend, Nora, last Wednesday when I got a call from Paradigm, Aaron’s day group.  I was tempted not to answer it, figuring it was Aaron just wanting to tell me about his day.  That could wait.  But I wasn’t sure, so I did answer and I immediately knew that the news was not good.  Aaron was on the other end, his voice thick and choked with anger and tears.  Here we go, yet again, I thought.  How I wish that Aaron could stay happy!

I picked him up as soon as I got Nora settled back at her apartment.  Aaron was asleep, so I had time to talk to the staff, all of us scratching our heads as to what caused his angry outburst that morning……and what the solution could be.  I found out from Aaron later what happened.  He tried to give his good friend two McDonald’s coupons and she didn’t want them.  She wasn’t being mean to Aaron, just honest, but Aaron felt rejected and very hurt, so he just had a total meltdown. 

Thursday was a better day for Aaron.  Then came Friday…..

I told Aaron that we would go out to eat when I picked him up at the end of his day.  His choice.  So he chose Denny’s, of course.  He does love Denny’s.  On the way to Paradigm, I talked to him about being nice…..being kind with both his words and his hands.  About talking to someone if he was angry or hurt.  He agreed with everything I said……until he walked into Paradigm.

I was waiting in the van after I dropped him off, waiting for him to come and tell me if they were going to a movie.  But instead, out the door came one of his staff.  She told me that Aaron had become verbal instantly with another client when he walked in the door.  Then out came Aaron, yelling at this staff as he stood on the sidewalk.  He eventually got in the van and off we drove.  My anger and disappointment and great frustration spilled out in harsh words as we drove toward home.  I was so mad at Aaron and mad at myself for being mad, and it just all boiled over. 

I pulled into Denny’s, deciding that it might do us both good to be in a neutral place.  Aaron sat on the curb before going in, saying that maybe he just shouldn’t go in to eat.  I told him to come on and he did, but for most of the meal I just sat silent.  I was exhausted and defeated and still battling my anger.  Aaron was scared……scared because of all the people from whom he fears rejection, he fears it the most from me.  He kept telling me that he loved me……kept trying to share his salad with me…..his crackers, French fries, chicken strips……even reached over, took my hand, and kissed the back of my hand.  Yes, he really did that.  I wonder who saw it, and what they thought of my lack of emotion? 

We ran into WalMart after our meal, where I picked up food for Thanksgiving bags for church, and Aaron tried to help.  I still felt numb, tired.  After I checked out, I looked toward the bench where Aaron was sitting, and this is what I saw.

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Then my heart did stir with sorrow for Aaron as this picture of him was a picture of dejection, and his own tiredness.  Oh Aaron, how I wish your life wasn’t so difficult and hard!  And how I wish you could understand that you so often make it that way, and yet so often you can’t control the impulses you have that make you make it that way.  It’s so complicated!

Aaron went right to bed when we got home.  I went to the patio, baby monitor and my Bible in hand.  I could listen for seizures while I spent some time unwinding and processing……reading my Bible and praying.  I could hear Aaron’s steady breathing on the monitor as I breathed out my prayer to God, asking Him for wisdom to know how to deal with these constant ups and downs from Aaron. 

I called my friend, Wendy, who walks this road that I walk.  She understands and doesn’t judge.  She offers counsel and advice, empathy and understanding.  And I know that she prays for us, for Aaron……prays with love and care.

Aaron was awake then, coming outside to test the waters……to see if Mom was still distant and angry.  He relaxed some when he could tell that I was better.  He smiled when I said that we could take Jackson for a walk around the yard.

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We walked down to the back of our yard, around the huge evergreens that hide the very back loop of our property.  It’s an area that is hidden from view as you stand on our patio or look out our windows.  You would never know it’s there until you walk behind the thick trees that keep it hidden.

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I stood looking at the eerie sight.  Branches of the old trees there hang low, gnarled together as they bend toward the ground.  A finger of the neighborhood lake curls around under the limbs, still holding water since we’ve had such a wet summer.  It’s a shadowy and dark place, a little creepy even.  It’s interesting, but not warm and welcoming……not a place I want to linger for long. 

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As we stood there, Aaron talking and Jackson sniffing the bushes and tall grass, it hit me that this is so much like our life with Aaron.  Anyone who lives with a person who has autism…..or multiple seizures…..and takes tons of meds to help them…..knows what I mean. 

Aaron is funny and smart and often kind.  But he is also prone to angry outbursts where he is hurtful and unreasonable.  For days we may mostly see the pleasant side of Aaron, but we know that hidden inside him is still the anger and the frustration that he feels, and sometimes releases.  It is not a fun place, and it is not a place where we desire to linger.  Yet sometimes Aaron makes us linger there as his brain is going through whatever his brain goes through at those times. 

I know that mentally and emotionally I must walk away from the shadows that threaten to engulf me when I am overwhelmed by Aaron’s behaviors.  He needs me, for one thing.  And I need to stay whole and strong, loving and forgiving.  It’s not easy, but I must.  Friends and family help.  A good staff at Paradigm helps.  Gary is my biggest help, taking over when I can’t.  And definitely, crying out to God helps the most. 

Aaron and I turned from that scene, finally, and went back out into the open yard…..to the sunshine and grass……to the full view of our welcoming house.  Likewise, given a little time, he and I returned to our normal relationship.  I love him dearly.  I know he needs me.  He needed me when he had three hard seizures during the night on Friday.  But he also needed me even more when he was out of control emotionally that day.  He needed me to believe in him…..to discipline him……to try to help him even when he pushes me away……to care for him and to love him.

Behaviors are perhaps the hardest part of Aaron’s disability.  They are frustrating, embarrassing, and exhausting at times.  Families who deal with this need extra love and prayer.  Staff who deal with this need the same, as well as frequent thank-you’s for what they endure. 

Aaron’s behaviors hold him back in many ways…..and could easily hold us hostage in many ways, as well.  But Gary and I know that we can’t let the dark times be our focus.  Like the staff at Paradigm says, today is a new day and we start all over.

We don’t always get to choose our view on any given day, but we don’t have to stay forever where the view is scary and dark.

“Today is the day that the Lord has made!  Let us rejoice and be glad in it!”  (Psalm 118:24)

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Walking the Tightrope

He Said What?!

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! …

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