Category: Strength

The Coupon Box

One of Aaron’s Sunday routines is to clip the coupons that are almost always in the Sunday morning newspaper.  I’ve blogged before about his coupon cutting process.  Believe me, it’s just that……a process.  A precise process that he is 100% convinced only he can do.  I, especially, have no business cutting out coupons because I am a dismal failure at that task.  Those are Aaron’s thoughts, not mine.  Aaron cuts as closely on the dotted line as he possibly can.  He then takes any little strips of paper that are left over and he clips them over a certain trash can, snipping each strip into tiny pieces and watching them fall down to join the other tiny pieces that fill the tiny snipped pieces trash can.  It’s an art.  Other odd sized pieces of left over coupon paper fill another trash can.  The finished coupon sheets of paper, full of gaps where once were coupons, are placed neatly in a stack to Aaron’s left side.  And the finished coupons are placed in precise order in the coupon box with the red lid.  It truly is fascinating to watch him cut coupons. 

Sometimes I don’t get the coupon box with the red lid emptied and sorted before the next round of coupons appear the following Sunday.  Such was the case a few weeks ago.  Aaron had completed his coupon cutting set-up in the family room.  His three cups of coffee were waiting for him on the bench beside where he sits on the floor, along with his pillow that he sits on, his scissors, his two trash cans, and the television turned to The Animal Planet.  He came to retrieve the coupon box with the red lid, opened it, and found last week’s coupons still inside.  So without further ado, he promptly dumped the week old coupons onto the table and turned to walk into the family room and complete his coupon cutting mission.

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“Wait,” I said.  “Can’t you still keep the old coupons in the box?”

“No,” he simply answered. 

“Because you can’t mix them up, right?” I asked, knowing full well the answer.

“Yeah,” he again simply answered as he sat on his pillow and started his mission.

Yeah is right.  Aaron can’t stand to mix the old coupons with the new coupons.  He does it on occasion, but not often.  So he clipped that day’s coupons and later I found the coupon box with the red lid on the kitchen table…..every coupon placed in just the right place and in the right order.  Aaron’s way, which to him is the only right way.

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Aaron’s life, and living with Aaron, is so much like his coupon clipping process.  He wants everything in its place…….the details of his life in a certain order.  This goes here…..that goes there…..and if I’m done with it or it’s old or messed up, out of place or frustrating, I just dump it and we start over.  Neat and tidy, with Aaron in control of the set-up and the tools and the timing and the process.  Except life’s not like that, not for Aaron and not for any of us.  You and I can adapt to these changes for the most part pretty easily, but not so Aaron.  Even the simplest change, the most minute little snag in an otherwise orderly process, can easily put Aaron over the edge.

Gary and I just returned from a short trip to Topeka, where we watched Andrew work on his NHRA race team.  Aaron knew that his two caregivers were coming to take care of him.  He was excited for us to leave, as he always is, because our leaving means more eating out and more movies and hopefully less bossiness from those in charge and more of him pulling the wool over unsuspecting eyes…..so he hopes. 

“I can’t wait for you to leave!” he said on Thursday as I was getting ready to go.  “NO parents!!” he added as he rubbed his hands together and laughed loudly.  He is at least very honest.

“What time are you leaving?” he asked, though he had been told how many times before? 

“We’re leaving at 3:00,” I answered.

“Can’t you leave early?” he asked.  “Like 2:59?”

He was completely serious about that.  So I smiled when I hugged him goodbye later, and told him that it was 2:52.  He just nodded his head and went on his way, and I stifled my laughter until Gary and I drove down the road.

Aaron calls repeatedly while Gary and I are away from home.  Every day, several times a day, he calls.  So much for his “NO parents!” comment!   Therefore, it was no surprise on Monday morning when he called, and also no surprise to me that he was most unhappy.  After his busy weekend, and after NO parents, he was ready to settle into his normal……but not ready to go to his day group.  He wanted to stay at home, which is common for him, and he wanted to be there when we arrived.  I always question what to do in that case.  Let him just stay home…..but is that giving in?  Make him go…..and maybe pay the consequences of that decision.  Mainly, his caregiver and day group have to pay the price of Aaron’s grouchiness.

As Aaron and I talked on the phone and he finally agreed, unhappily, to go to Paradigm, he asked me if I would pick him up early at the end of the day.  I said that I would. 

“Mom!” he said.  “I mean to pick me up before 4:00.  I want you to pick me up at 3:59!”

Again, he was entirely serious.  “3:59?” I asked him.

“Yes!” he answered.  “Don’t wait until 4:00!  Will you pick me up at 3:59?” 

So I agreed to pick him up at 3:59 and he went reluctantly to Paradigm.  However, he had a miserable day.  The other clients had a miserable day.  The staff had a miserable day.  Thankfully they are so understanding and forgiving.

It was around 1:30 when my phone rang.  I heard Aaron on the other end, voice thick with tears.  I’ve lived this scene so many times that I didn’t even need to hear what Aaron had to say. 

“Mom,” he started……and I just told him that I was coming to get him. 

“No!” he said strongly.  “I want you to come at 3:59!!”

“But Aaron,” I countered.  “You’re very upset now so let me come and pick you up.”

“No!!” he forcefully repeated.  “I want you to come at 3:59!!”

He handed the phone to Barb, and she said that he was very firm about me coming at 3:59, but then for some reason he changed his mind and said that I could come on to get him. 

A short time later, he and I sat in Freddy’s.  I figured a Freddy’s burger and fries would be the best medicine for him.  He was relaxed and very happy as he ate his burger, but his eyes were still red and bleary from all the tears.  As I asked him why he was so upset that day, he couldn’t tell me why.  I kind of know why, but he really has a very hard time verbalizing outwardly what goes on inwardly in his mind and emotions.

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So many diseases or syndromes show up in a person’s bloodwork when it’s tested, but what Aaron is missing doesn’t show up firmly in lab work or on a piece of paper.  The connections in our brains that allow us to process and filter our environment, and our responses to life’s occurrences in our environment, are missing in Aaron’s brain.  He cannot just simply deal with issues like I can.  So he reacts, often in great frustration, and getting to the root of that frustration and his reaction to it is what we continually try to do. 

However, we are often very frustrated ourselves……frustrated by Aaron’s behaviors and his reactions and all that goes along with it……that it’s hard to pause, take a breath, and try to figure it out ourselves before we can even begin to help Aaron figure it out.  Add to that our embarrassment at times……our tiredness…….our feelings of failure or ineptness…..and it’s like my box of coupons.

I just want to dump the whole thing and start over!!

Start over with an empty box……new coupons…..all in precise order!

But life’s not like my coupon box with the red lid.  I can’t just dump days or events out on the table, and arrange the new day the way I want.  And neither can Aaron.

But we can start each day with a clean slate, and try again.  We can build on the old experiences and the lessons they taught us.  Clipping here……cutting there…..arranging our thoughts and our responses in the right way.  We do it through prayer, through seeking God’s wisdom, and through loving each other through not only the good, but also the bad and the ugly.  And we have plenty of those last two, believe me. 

And through always keeping in mind that Aaron’s most impacting special need is the one we can’t see in that amazing brain of his.  We don’t understand how he thinks at times, or how he acts, but we do understand that he really wants to do better and that the frustrations for him are far greater than any that we as his parents and caregivers will ever feel.    

There’s one more thing about starting each day anew.  God has promised that His mercies are new every morning.  They’re not based on yesterday and on yesterday’s failures.  His mercies are new and fresh every morning, as is His longsuffering and forgiveness and kindness.

Can I be any less for Aaron? 

I don’t think so.  And I can put that promise on the very top of my daily coupon box.

The Wonder of Me…..And Aaron…..And Lots of Things

I went to pick Aaron up at his day group on Thursday afternoon. I waited in the van for a couple minutes, then saw Barb coming toward me. I knew before I really knew that this probably wasn’t going to be good news. I was right. She told me that Aaron was inside after having a very rough afternoon and that he was refusing to come outside. I went in and we found Aaron laying on one of the couches, crying and very upset. After some time, and moving to a new couch where he laid down again, he told the story of how he had acted……which often starts with him thinking he’s teasing but turns ugly pretty quickly. One thing led to another and the situation became something it never needed to be.

How we wish that Aaron understood that his idea of teasing is often anything but. How we wish he could control himself when he is being redirected. All the talking and lectures and therapy in the world doesn’t seem to sink in. Maybe a little, but not as much as needed. He just doesn’t connect actions and repercussions like you and I do. Reading about the autistic brain……writing about the autistic brain…….saying that I understand the autistic brain as much as I can…….often doesn’t mean as much as it should when I’m staring at my belligerent son, hearing of his actions and trying to control my own embarrassment and anger.

Aaron is often immensely funny, but Aaron is also sometimes immensely frustrating. Thursday fell into the last category.

Aaron is seeing a family therapist every two weeks. This is a new thing for him. I had high hopes that as much as he loves to talk, he would really take to this and love talking to her. It hasn’t quite worked out that way. If she just let him talk about his things, like aliens and movies and games and eating out, then he would probably look forward to it. But he realizes that she wants to talk about his issues……how he’s doing at Paradigm and at home with relationships and anger and attitudes. To Aaron, this is uncomfortable and a waste of time, so he hasn’t been enjoying their sessions like I had hoped.

This past Tuesday she gave him a paper on which she had drawn a large stoplight. The green light means that he is doing good, so keep going. The yellow light means that he is starting to feel some frustration, so he needs to be cautious. The red light means that he is having a meltdown full of anger. At the end of the day, he is to mark what kind of day he has had…..green, yellow, or red.

Aaron didn’t want to take the paper home from her office. Then he told me several times that he thought the paper was stupid. I left it alone on Tuesday night, but on Wednesday night I told him before bed that it was time to mark his stop light with what kind of day he had. I felt like Wednesday had been a green day, so I thought he would be happy to mark the green light. But when I told him to get his paper and mark it, he crossed his arms and told me that he had hidden the paper.

Oh boy.

After some talking, he finally got down on his hands and knees, and pulled the paper out from under his bed. He rolled his eyes as he put a mark on the green light, the mark I thought would make him happy. Then he picked up the paper and as we stood there talking before saying good night, he crumpled that paper some in his hand. He was simmering, I knew it.

So after his meltdown Thursday at Paradigm, and a rather rough evening at home during Skip-Bo as I tried to talk to him, he went upstairs at my direction and brought down the stop light paper so that he could mark it. I knew that he needed to put a mark on the red light, and he knew that, too.

He came down to the kitchen table with his paper, and this was what he laid on the table.

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Well, so much for that idea. How many times I say that when we try something new with Aaron!

So often it’s back to square one with Aaron. We rarely feel like we pass go and collect our $200.00. I know there are times in his life when he needs to pull back and reboot, so on Friday I let him stay at home. He went grocery shopping with me, helping me at the store and helping me carry in the groceries at home. We went to see Jungle Book, run more errands, and get him a sub for supper. We watched a little TV in the evening. It was a pleasant, fun day for both of us.

Aaron found an Elvis CD that he wanted when we were shopping together at the first of the week. He’s been completely fascinated with the songs and with Elvis all week as we’ve listened to the CD while driving. He’s been hilarious with some of the things that he has said about Elvis, like how his voice is “jiggly” and his dancing is “rowdy.”

So on Thursday, meltdown day, Aaron turned on the Elvis CD in the van. The second song that played just left me pretty stunned and with a huge lump in my throat. “The Wonder of You.” Look at the lyrics for the first part of this song:

When no one else can understand me.

              When everything I do is wrong.

              You give me hope and consolation,

              You give me strength to carry on.

 

              And you’re always there to lend a hand

              In everything I do.

              That’s the wonder, the wonder of you.

 

Aaron has decided that he loves this song. It’s uncanny. This song that speaks volumes to me about what kind of mother I need to be with Aaron has become a very special song to him as well. It’s not for the reasons that it’s meaningful to me, either, because I’ve had him tell me why he likes it so much. But he’s played it over and over since Thursday. We even listened to it with Gary at supper last night.

I really do want to be this kind of mother in Aaron’s life. Sometimes he’s certainly hard to understand and he does a lot wrong, but I pray that I will give him hope and consolation, strength and a helping hand.

Honestly, many times, I don’t feel like I’m a wonder. I feel more like I’m left wondering…..wondering what to do, wondering what’s going on, wondering how I can stay calm…..

I could go on for a long time about some of the ways that I wonder.

But Aaron needs me to be there for him despite the wondering and the frustrations, the tiredness and the seeming dead ends that we end up taking. He’s taking a nap right now and just had a seizure. He needs me physically, too.

But he needs me the most when, like the first part of the song says, no one else understands him and everything he does is wrong. I know he’s frustrated by those times more than we are.

All moms can relate to what I am saying, and especially moms of special needs kids and adults understand it all too well.

Aaron will probably never look at me and say, “Wow, Mom! You’ve meant so much to me. You’re a wonder!”

Just reading that makes me laugh. I’d faint if he said that and probably get hurt, so it’s just as well that he doesn’t say it, right?

But I will keep striving to BE that in Aaron’s life…..pick him up, understand as best I can, hold his hand (figuratively speaking, because he doesn’t hold hands much ), and give him strength and consolation.

But trust me, I know me, and I know that at the end of some of our days I’ll still be saying, “Yes, I’m a wonder! I’m a-wondering how on earth we both made it to the end of this day alive and in one piece!!”

And tomorrow’s a new day!

             

Set Sail!

 

It’s a good thing that I looked in the cabinet this morning, checking on a key ingredient that I needed for my chicken dish that we’ll eat for tonight’s supper.  I thought I had plenty but I didn’t, so I quickly added it to my short grocery list and was able to stop at the store later to pick it up.  Being prepared is important!

 

This small episode fit perfectly with what I read this morning during my quiet time.  I actually learned a new word…..a Greek word.  Well, most Greek words are new to me, but this particular word made a huge impression on me.  I hope it will do the same for you.  The word?

 

Pleroma.

 

Impressed yet?  Hang on.

 

Pleroma was part of the ancient world’s shipping vocabulary.  It has to do with being complete or being full.  Here is what Raymond Brown says about pleroma in his book The Message of Nehemiah:

 

            Pleroma….described the ship’s complement.  Before leaving port the vessel was carefully checked to ensure that there was an adequate crew and that the cargo included sufficient food, drink, medical supplies, spare cloth to replace torn sails, ropes, in fact everything necessary for its journey.  That was the ship’s complement or completeness. 

 

A departing ship today, and especially in ancient times, definitely had to be careful to have all necessary supplies before sailing.  No ship would leave for a journey until it was filled with supplies….filled with all it needed for the time on the open sea.
OK, so why was this word such a blessing to me today?  And why do I pray that it’s a huge blessing to each of you reading this as well?

 

Because pleroma is the word that John uses in John 1:16.  “For of His fullness (pleroma) we have all received, and grace upon grace.”  Again, Raymond Brown says:

 

            John’s Gospel began by assuring its Christian readers that, however great the pressures of life, all their needs would be met out of the abundant completeness and inexhaustible sufficiency of Christ.

 

You see, God doesn’t push His children out on life’s voyage without preparation.  Just like a ship being loaded up in the dock before setting sail, so God loads us up with all that we need for the ride that is ahead of us.  We don’t even know that He’s doing all that work on us most of the time.  All the equipping and the completing comes as we live day by day, getting to know Him better through His Word and through the growth that comes with each new trusting time in our lives.

 

Then the waves come crashing in and the journey is long.  The ocean is big and scary.  Don’t think that when you’re slammed in the face with an unexpected trial, God didn’t know beforehand that it would come.  He knew.  He in His sovereignty ordained and allowed it.  But not before He prepared you for it.  God completed you, and is still completing you, with all that you need for the rough waters all around you.

 

Pleroma!!

 

Grace upon grace.  Unmerited favor from God, over and over again.

 

Blessing upon blessing as we sail through the waters and as we experience God’s complete provision for all we need, before we even knew we needed it.

 

God prepared you, and me, for every single event in our lives before we needed it.  And He then stacks grace upon grace as we live through the tough times…..blessing upon blessing…..growth upon growth.

 

God loves His children.  He’s a good God.  He would never leave us incomplete, lacking what we need.

 

He alone is really all we need.

 

So even when we don’t understand our situations….or don’t like them….or are hurting….afraid….turned upside down….

 

Pleroma!

 

You are complete.  You are filled.  You are ready to sail!

 

Trust your Captain.  He’s got your course all charted, and He’s got you more equipped than you realize.

 

Of His fullness we have all received.

 

Can You Be Sure?

Aaron had a seizure at 4:30 this morning.  It was around two minutes long, shorter than some but always too long.  No seizures at all is definitely preferred, but that doesn’t seem to be what God has planned for Aaron in his life.  His nocturnal seizures are why Gary and I still sleep with a baby monitor on our nightstand.  Aaron knows that I go into his room when I hear a seizure and that I’m there to help him as needed. 

Aaron got out of bed around 7:00.  I would need to look in his log book that he keeps to see the exact time. 

OK, I just snuck in his room and took a peek.  He wrote down his getting out of bed time as 7:02.  Isn’t he funny and amazing?

He drank his three cups of coffee, as always…..and he bugged me about a fourth cup, as always.  He said his head hurt, too, as always it does after a seizure.  I can only imagine.

And as always after a seizure, he decided to go back to bed.  He told me his plan, but he wasn’t forgetting about that fourth cup of coffee.

“Can I have a fourth cup when I get out of bed?” he hopefully asked.  And I gave him some hope that he could.  He has no idea what all I would gladly do for him on these seizure days.  I try not to show my hurting heart generosity too much, either, because good old Aaron will jump on that like a tick on a dog.  Forget the fourth cup of coffee!  Let’s go for five or six!

After Aaron had the assurance that a fourth cup of coffee was a real possibility, he started to walk away.  But he came back to the top of the stairs, one more request on his mind.

“Can you make sure I don’t have another seizure in bed?” he asked me.

Oh, if only I could!  I might have to think about granting a fourth cup of coffee, but if I could grant that my son have no more seizures then I would do it in a flash. 

I knew what Aaron meant.  I try to get him to express himself more clearly, so I asked him how I was supposed to do that.

“Can you hear if I do?” he clarified.

“Yes, I’ll hear if you do,” I answered.  I assured him that I had the baby monitor on right beside me and that I would be listening.  He was satisfied with my answer and with the knowledge that Mom was keeping her ear open, so off he went to bed. 

It’s sad to see that Aaron shows this fear of having a seizure.  I don’t blame him one single bit.  He doesn’t remember the seizures, but he’s seen friends at his day group have them and so now he knows what they look like.  And he certainly knows what they feel like when he wakes up with a bad headache, sometimes a bitten tongue, losing his sense of taste, and other complications.  It’s a very hard thing to see your child endure this.  Harder still to see your usually unexpressive adult child begin to verbalize his fears. 

Victory in the verbalization…..sadness in the expressed reality.

I am Aaron’s strength right now.  I am his comfort and his hope.  Me….and the baby monitor.  Aaron is depending on us to be there for him and to help him if he has another scary seizure.

This morning I had planned to write about Nehemiah and the guarantee that he gave the children of Israel as they built the wall of Jerusalem.  I didn’t know I would have this illustration from Aaron.  I would rather not have it.  I would rather use another example from some other scenario in my own life that doesn’t involve him.  But this is where God has us.  This is His sovereign plan, one that I trust even when it hurts.

The Jewish people were rebuilding the wall of Jerusalem, but there were enemies who didn’t want them to succeed.  These enemies used words of discouragement and ridicule, but when they saw that the Israelites were serious about rebuilding the wall they changed their tactic.  The enemies became intimidating, threatening to kill not only the workers but their families as well. 

The Jews became scared.  The enemies’ threats were working.  In Nehemiah 4:10, it was said that the worker’s strength was failing.  That word, “failing,” meant to stumble or totter.  The workers were literally tottering under not only the physical work they were doing, but especially they were stumbling emotionally and spiritually under the continued threats they were facing from their enemies. 

They were scared.  And in verse 14, Nehemiah said that when he saw their fear he spoke to them….to the nobles, the officials, and to all the people who were so afraid.  Here’s what he said:

“Do not be afraid of them!  Remember the Lord Who is great and awesome, and fight…..”

This verse has been on my mind for a couple weeks now.  I’ve had some fears and concerns in my life.  Health issues for Aaron, for Andrea, for Gary.  Aaron’s behaviors that impact him and us so much.  Andrew adjusting to a difficult new job.  So many other things that jump around in my brain during the dark night hours when I’m unable to sleep…..

I could name fears that I know so many of our friends are experiencing.  Life has changed in a moment for some.  Then there’s the continuing impact of those changes.  Strokes….dementia…..upcoming surgeries…..serious infections…..the diagnosis of a child with a potentially life changing syndrome…..ongoing multiple children with special needs….exhaustion…..job uncertainties…..

Our life stresses are like the enemies of the Jews in Nehemiah.  They surround us, threatening us with their potential or certain life changes.  We sometimes stumble under the burden of it all.  Fear is very debilitating.  Our mind goes places it shouldn’t but it’s so hard to keep from doing that.

This is why Nehemiah’s words have meant so much to me lately.  I need to refocus my focus.  I need to choose what I allow my mind to dwell upon.  The answer is simple, but difficult, because the enemy wants me to stay glued to my fears and my worries…..both the known and the unknown.

But…..REMEMBER!!

Remember the Lord!!

The Lord Who is GREAT and Who is AWESOME!!

God’s got this….all of this.  Whatever the enemy is throwing at us, whatever we see around us, whatever we hear in our head in the dark of the night….is NOT what we are to remember or to dwell upon.

Our God is great and He is awesome.  The battle is His, not mine! 

And so I fight, but I’m not the one fighting.  I am allowing God to fight for me as I pray and give Him my battles and my fear and my worries.  When I feel that familiar fear being thrown at me from the enemy outside the walls of trust, I remember and I remind myself that God is the One Who will fight for me.

The Lord Who is GREAT!

The Lord Who is AWESOME!

I’ll hear you and I’ll be there if you have another seizure, Aaron.

“Can you be sure?” he asked.  “Yes.  I’ll be sure,” I answer.

I’ll hear you and I’ll be there in your fears, God says to me.  

“Can you be sure?” I ask.  “Yes.  I’ll be sure,” He answers.

“Our God will fight for us!”  (Nehemiah 4:20)

Remember!  The Lord!

From God’s Heart to My Lips

Was it just last weekend that I flew home from a wonderful vacation week in Alabama?  It seems much longer than a week.  There are reasons for that.  But first, I did enjoy a great time of relaxing with my dear friend Glenda in her beautiful home.  Bruce and Glenda are friends of ours from way back.  Gary and I met them at Gary’s first assignment following his graduation from flight school in 1983.  We did lots of life together in Colorado Springs while stationed at Fort Carson, and then later as we both lived in Germany.  It had been 23 years since we last saw each other.  Bruce and Glenda very kindly flew me to Alabama for several days of rest and relaxation.  We took up right where we left off, too, not missing a beat.  Glenda and I talked a blue streak last week, and I think we pretty well caught up on everything.  It was really a refreshing time for me.

In the airports and on the planes, I finally finished reading Ann Voskamp’s book, One Thousand Gifts.  What a challenging book this has been for me!  Challenging me to be thankful….grateful…..in all situations.  Our friends, Kurt and Jill Grier, gave me this book while Aaron was in the hospital last June.  What a perfect setting for this insightful book to be given! 

So flying home last Saturday, I finally finished this book.  At the very end, Ann wrote this:  “Every breath’s a battle between grudgery and gratitude and we must keep thanks on the lips so we can sip from the holy grail of joy.”  There is a reason that God let me read that line on that day…..the day I was flying home…..to life at our house.

I heard him before I saw him.  I was near the escalator in our beautiful new Eisenhower Airport here in Wichita.  Home at last.  I was focused on that down escalator when I heard, “MOM!!!” 

I looked over to my left, and there was Aaron.  He had just bounded off of the comfy chair where he was sitting near Gary as they waited for me to round the corner.  How appropriate that the very first word I heard when I reached home was that word that Aaron says the most.  Mom!

His smile was huge as he came toward me, rubbing his hands together in great delight.  Delight to see me?  Yes, in his own way.  But more delight, I believe, in the fact that he could finally tell me in person what he was anxiously waiting to say.  “MOM!!!  I finished watching…..”  And he was off, words tumbling over each other as he told me about the latest movie he had just completed.  Aliens and battles and robots and laser vision…..all of it, coming out in a loud rush. 

He had no interest in my trip home.  He only cared that I WAS home.  He did give me a hug as I reached out to him, but he didn’t stop talking.  Gary and I hugged and kissed to our typical background music of Aaron’s constant talking.  We’ve learned to jump in quickly between his words in order to say our own to each other. 

There is no slow re-entry into life with Aaron.  He blows in with no interruptions allowed, words and hands flying, expecting us to show great interest.  And we opened the door at our house to our large dog, to Aaron following and talking, to trick-or-treaters, to the time change, and to me coming down with a stomach bug that evening.  Interesting.  What was that quote I had just read?

It gets better.  And let me again quote dear Alice Zwemke:  “I’m not complaining.  I’m just reporting.”  This week….

On Monday I took Aaron to the dentist for a cleaning.  A small cavity was found.  On Tuesday, I took him back to the dentist for a filling.  He was a little sullen and quiet (thankful for the quiet part!) on Monday, but on Tuesday he was full of smiles and talk.  He even carried in his Happy Spider from Hawaii that Glenda had sent him, and kept Happy Spider on his lap while he got his tooth repaired. 

 
By that evening, Aaron still had a crooked smile from his tooth procedure.  The dentist said not to worry, and sure enough by that night he had returned to normal.  So on Wednesday he was able to finally return to Paradigm, his day group, even though he complained of not feeling well.  That afternoon he had a big seizure there, so I went to pick him up, carrying clean clothes since he was incontinent during this seizure.  He had another seizure shortly after going to bed that night. 

On Thursday, he woke up with my stomach virus that I was kind enough to share.  Between bathroom visits, he slept nearly all day.  No Paradigm.

Yesterday, Friday, he still wasn’t feeling great so he stayed home again.  No Paradigm.  By the evening he was more himself, so I foolishly let him enjoy his pizza night.  I felt sorry for him because we had planned to have a pizza party at one of Paradigm’s residential homes with several of his friends on Friday, and we had to cancel it.  It was an early birthday celebration for him.  So pizza it was, at home……which he later threw up as he sat in his chair in the family room.  Poor Aaron.

And I now have a chest cold.

So here we are.  Life at its best, right?  That quote again….we must keep thanks on the lips.  I’ve been practicing that attitude this week as best I can, failing at times but also so aware of the power of gratitude that is so dear to God’s heart.  From God’s heart to my lips.

I’m thankful for our washing machine and our dryer; for bleach; for hot water; for Aaron’s excellent waterproof mattress pad; for Gary’s hard work in providing for us so that I don’t have to work; for our gorgeous fall colors to enjoy as I look out the windows or drive around town; for our large kitchen trash can last night during the throwing up episode; for not being in the hospital like some I know and love; for all of this happening while I am home and not out of town; for God’s forgiveness when I fail; for the love of friends and family…..and for so much more.

For Aaron, who just rolls with the flow….which is a pretty yucky saying right now, actually.  Sorry.  Anyway, he handles things better than most.  He’s more concerned with his routine than with his disappointments.  I’m carrying the disappointments.  He carries the changes to his routine.

“Mom, I’m going to bed now,” he said on Wednesday night.  “I’m not going to bed at 10:00.”  It was 8:23 when he laid down and I turned off his light.  But soon I saw the light from under his bedroom door.  I asked if he was ok.  He told me that he was fine…..that he was just writing down what time he went to bed in his log book.  Well, of course.

Aaron showers at 8:00 or a little later every night. He showered in the late afternoon on Thursday.  “Mom?” he asked.  “Because I just showered, does that mean I have to shower by 8:00 tonight?” 

Wheel of Fortune is still being turned on at 6:28, not 6:27, though….so that’s a good thing.  And Mom must be reminded to wait on the coffee maker to perk more coffee in order to fill that third cup before carrying them up to Aaron’s room.  One doesn’t take TWO cups of coffee to Aaron’s room.  It must be THREE cups, for crying out loud. 

Sometimes Aaron weighs us down on many levels.  But I’m thankful for the blessings that are many, the smiles that are frequent, and the laughter that comes unexpectedly. 

“Mom!!” he said the other morning as he stared down into his empty coffee cup.  “Why is there coffee bean powder in my cup?”

See what I mean?

 

 

Aaron’s Hospital Stay

Aaron came home from his day group on Thursday, June 11, in his usual way, bounding in the hall door from the garage with talk of what he had done that day at Paradigm.  It was later, as I stood in the kitchen fixing supper and he sat in his family room chair, that I noticed him coughing.  It was just a dry cough, nothing major, but it was persistent.  So I leaned around the corner and asked him if he was all right, and he answered in his usual droll way that he was just fine.  But as we ate supper awhile later, Gary and I noticed that he was very slow.  A couple days earlier, on Tuesday, Aaron had four seizures.  That wasn’t unusual for him, but on Wednesday he was himself again.  To be more lethargic on Thursday was concerning to us. 

During Wheel of Fortune he wasn’t animated or excited at all.  I felt his forehead and noticed how warm he was.  Sure enough, when I took his temperature it was 102.4.  The next morning I called McConnell Air Force Base to make a same day appointment.  Aaron kept sleeping until I finally went in his room and roused him enough to take his temperature again.  It was still 102.4.  He had a very hard time waking up enough to take his morning pills, and then went right back to bed.  As I continued to check on him I became very concerned at how he couldn’t wake up, so I finally made the decision to take him to the ER.  McConnell agreed with me, so I worked to get Aaron awake enough to dress.  I then had him sit on the floor of the hallway upstairs and scoot down the stairs on his bottom.  He would scoot down one stair and fall asleep until I jostled him……then scoot down another stair and fall asleep…..all the way down the stairs. 

We slowly made it to the van, and later at the ER a male nurse helped Aaron out of the van and into a wheel chair.  Still he slept.  We got him on the exam table and he slept again.  Somehow he stood up for a chest X-ray, but he slept through the doctor’s exam, the blood draw, insertion of the IV, and even the catheter.  The doctor found an ear infection, so I thought that Aaron’s body was just fighting hard and the sleeping was his reaction to that.  I felt like we would soon leave with an antibiotic prescription, go home, and get Aaron well. 
 

 
Yet the concern on the doctor’s face as he kept coming in the exam room was raising my own concern as well.  Finally he told me that the blood work had shown Aaron’s sodium to be dangerously low.  It should be at 135-136, but Aaron’s was 121.  Then he said that Aaron would need to be admitted to the hospital to address the sodium issue, and to find out what else was going on with him.  My mind was whirling as I called Gary and as we tried to decide if Aaron would stay at St. Teresa Hospital or go elsewhere, although that decision was made for us by insurance.  We would stay at St. Teresa.  It wasn’t long before we were on an elevator headed up to the small ICU unit, my mind still trying to adjust to all this.  I looked down at my very sick son and wondered about the “what else” that the ER doctor had mentioned.  What else was going on inside his body? 

 
There Aaron lay, all hooked up to monitors and tubes, his body struggling against that unknown something that was making him so sick.  He tried hard to wake up enough to answer nurse’s and doctor’s questions.  He sometimes showed his definite personality, like when the nurse asked him a question about his bowel habits.  He gave her a rather disgusted look and just answered with a “Hhmmpf!”  When Gary was there, and I left later that evening to run home, Aaron asked me to bring him his watch and his glasses.  He didn’t wear his glasses a lot during those first few days, but he put his watch on his arm right away, pushed way up the way he likes it.  It was a piece of normalcy in this crazy place in which he found himself. 

 
Over the weekend, when friends came to visit, Aaron would cry.  He showed emotion that was rare for him.  He told me later that he was sad.  I told him that we understood, but I didn’t tell him about my own sadness.  Or about those icy fingers of fear that were trying to grab at me.  It was not only sadness but fear I was feeling as I watched the blood draws…..the strong antibiotics flowing through the IV into Aaron’s body…..the fevers that sometimes rose to 104.5……the CAT scan…..the X-rays…..the spinal tap……the kidney specialist and the infectious disease doctor…..the testing for West Nile and tick borne disease…..the low sodium issue. 

 
Early on Saturday morning, as I have done many times in the past during stressful times, I asked God to give me a special verse.  I asked Him to speak to me in the way that I needed at this time.  There in that hospital room, with Aaron sleeping nearby, God gave me Ecclesiastes 11:5:  “As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything.”  That was it!  I didn’t know what was going on here with Aaron.  I didn’t know the work of God but I do know God.  I know that He loves us and I know that He has a work that He is accomplishing.  I know that I can TRUST Him, regardless of what else I don’t know. 

It was very hard to watch Aaron suffer.  Hard to see the pain in his face when he coughed….the struggle to deeply breathe and to talk……the pain of needles and tests.  It was easy for me to let fear take over as I helplessly watched our Aaron and wondered still about the “what else” that was so elusive to find in his body.  Soon another principle from scripture came to my heart.  “In everything, give thanks.”  I went home one evening while Gary sat with Aaron, and I knelt by Aaron’s empty bed in his bedroom.  His stuffed snake and skunk were still in the bed where he had left them.  I stretched my arms over his animal print blanket and I asked God to please heal our son.  I told God that I didn’t know about this work that He was doing, but I did trust Him.  And I thanked Him for this time.  That kind of thankfulness takes great trust in the One whom I was thanking, for sure, because I hurt for Aaron so deeply.  But I also know God and I know that He can be trusted.

It was a turning point for me.  My mother heart still hurt deeply all through that week in the hospital.  One night, with eyes closed, Aaron said, “This is not fun.”  There went my tears.  And later, eyes still closed, he said, “I love you, Mom.”  I leaned over his bed and he got as big a hug as I could give him.  But I purposely stood there and voiced thankfulness to God, hard as it was, for this work that He was doing and that I didn’t understand. 

 
Aaron’s chest X-ray finally showed pneumonia in his right lung.  It was determined that he had Aspiration Pneumonia.  Apparently, he aspirated some saliva during his seizures that previous week.  He responded to a new antibiotic, was moved out of ICU to a private room, began walking with the help of physical therapy, and was soon clamoring to come home.  I don’t know who had the bigger smile, Aaron or his doctor, when he was finally told that he could go home.  On Friday, a week after being admitted to the hospital, he was wheeled out to our van and we took off for home…..after picking up his choice of McDonalds for lunch on the way.  He is recovering his strength and his spirit, and some grouchiness, too. 

There is more to write about this experience.  About how Aaron’s autism affected his hospital stay, and about his tender return home to his world and his routine.

We’re so thankful for this outcome, but if it had been different, I pray that we would still be thankful.  Thankful for the work of God who makes everything, even when don’t know or understand His work.  When it’s all said and done, there is no better place to be than in His will as we watch His work and trust in Him. 

 

Lessons From the Rooted Redbud

We have three Redbud trees out in our back yard, standing alone in a little row.  Every spring they bloom beautifully and give us a lot of joy as we look at them from the house.  However, we began to notice over the past couple years that they were struggling.  They just weren’t as vibrant and full, especially the tree in the middle.  Finally, last year, we had to cut down that middle tree.   We felt it was just too far gone to have any hope of survival.

Weeks went by, and one day as I stood at our kitchen window, I noticed something between the two remaining Redbuds.  It looked like a clump of some sort.  Was it a pile of dead grass left from Gary’s mowing?  I soon forgot about it, but once again several days later I noticed it in the distance.   This time my curiosity got the best of me, so I walked down to the two trees to investigate.  I was a little surprised to see some small twigs poking out of the ground, complete with little leaves on them.  Could it be the Redbud still growing? 

Of course, I shouldn’t have been so surprised.  The following few weeks proved my guess to be true.  The chopped down Redbud was indeed growing again, and why shouldn’t it?  The Redbud roots were still in the ground, undamaged and alive.  Those roots were doing what Redbud roots do.  They were growing a new little tree, or at least the beginnings of a new tree.  So there between the two tall Redbuds stood this living, growing small tree.  It wasn’t showy…..it wasn’t big…..it was hardly noticeable…..but it was growing faithfully.

A couple weeks ago I was reading Daniel 6, the story of Daniel in the lion’s den.  Yet what captured my attention this time, more than the den of lions, was what brought Daniel to this point in his life.  Daniel had shown maturity and faithfulness over the years as he was held captive in Babylon.  There he was, along with his friends……young Jewish men in the middle of their enemies.  They continually obeyed God while living in very difficult circumstances, all the while being mature and respectful.  God blessed them for their faithfulness.  He gave them protection and He gave them responsible jobs within the Babylonian government.

Darius decided to appoint 120 assistants that would be in charge of his kingdom.  He appointed three commissioners to be in charge of the 120 assistants.  Daniel was one of those three commissioners.  As time went on, Daniel distinguished himself so much among the other commissioners and the assistants that Darius planned to appoint him over the entire kingdom.  This made the other commissioners and the assistants very angry.  They were jealous of Daniel, and so they decided to plot against Daniel……to find some corruption in him concerning his government job, and then to use that as grounds for expulsion.  However, they could find no grounds of accusation, so they went to Plan B.

Plan B was to devise a plot of some sort concerning Daniel’s religion that would at last give them grounds to be rid of Daniel.   They approached Darius with praise as they stroked his ego, telling him how almighty he was.  In fact, they managed to talk Darius into believing that he was so majestic that he should build an image of himself, and then enforce a law that everyone must bow to his image and pray to him for thirty days.  If anyone prayed to any other god during this thirty day period, then they would be cast into the den of lions.  Darius, full of himself, signed this law…..a law of the Medes and Persians that could not be revoked. 

Now Daniel knew about this law, of course.  After all, he was one of the three highest ranking rulers in the land.  So what did Daniel do?  We’re not told that he went into a rage, that he insisted on seeing the king, or that he stormed into the next commissioner meeting and demanded to know why he wasn’t involved in the planning of a new law.  Nope.  Instead, when Daniel knew that the document was signed, he just quietly went home.  Daniel 6:10 tells us what happened:  “…..he entered his house (now in his roof chamber he had windows open toward Jerusalem); and he continued kneeling on his knees three times a day, praying and giving thanks before his God, as he had been doing previously.”

In other words, Daniel just kept being faithful.  He continued to obey God.  He continued to grow.  He knelt as he always did, in front of his open window for all to see, including the hateful plotters.  And his conniving fellow workers came by agreement, we’re told – and just as they planned, they found Daniel praying before his God.  I’m sure they were beside themselves with satisfaction as they presented their evidence to Darius……evidence that Darius’ favorite was a law-breaker……along with the reminder of the new law, the one that couldn’t be revoked.  Darius was in a pickle, and soon Daniel was in the lion’s den. 

Just before Darius tossed Daniel to the lions, he said a most amazing thing.  Darius said to Daniel, “Your God whom you constantly serve will Himself deliver you.”  And we know the rest of the story, how God did just that.  He stopped the mouths of the lions, and Daniel was not the main course that night.  But what I noticed the most on my recent reading of this ageless story was the fact that Daniel was just quietly faithful.  He CONTINUED kneeling three times a day to pray, as he had always done.  Even Darius noticed as he said, “Your God whom you CONSTANTLY serve.”

You and I live in some pretty stressful times…..times that are particularly stressful for followers of Christ.  Our culture and our politics are full of craziness right now.  I’ve never talked to so many who are feeling burdened and even very worried about the future.  God’s Word is being rewritten by those who want it to say whatever would support their lifestyle.  Legislation is being enacted in order to legally defend their beliefs.  Christians are mocked, hated, ridiculed, and even arrested.  And though these times were prophesied and we have known that someday they would come, many of us find ourselves awake at night, wondering how bad it’s going to get. 

So I think of our little Redbud and I see a lesson.  I see faithfulness to grow….to grow from the roots that are deeply planted.  Just to grow, surrounded by trees much larger than it is.  To grow like Daniel, faithfully serving God in the midst of extremely difficult circumstances.  Daniel knew what he faced.  Lions…..very hungry lions!  Yet he just quietly and constantly obeyed God by praying as he always prayed, and trusting God to take care of him. 

So I want to say to all of us who are walking the narrow way, following God in this world where to be narrow is considered an insult, to just be faithful in the ways that you have always been faithful.  Be like Daniel.  CONTINUE to obey God, and CONSTANTLY serve Him, even if there might be some lions in our future.  Don’t bow to the pressure of this culture and to the pressure of large issues that we face.  Instead, let’s bow our knees to the one and only God in Whom we need to be deeply rooted.

The same God Daniel served is here for you and for me today.  And we do know the end of the story, don’t we? 

 

 

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.

 

 

 

 

 

Lessons From the Lone Tiger Lily


In our back flower beds we have two patches of Tiger Lilies.  They were there when we bought this house 15 years ago.  Every spring they faithfully poke their shoots out of the ground and quickly grow.  Sometime in early to middle July they burst into bloom, with their bright orange color taking center stage for several weeks.
 
This year was no exception, but somehow I thought they didn’t appear to be as strong and as vibrant as in other years.  They bloomed later this year, too.  They just didn’t seem to be the same old Tiger Lilies that we had enjoyed in previous years.
A couple weeks ago we had a thunderstorm during the night.  Between having the windows closed, the air conditioner running, and the dulling effect of sleep, it was hard to tell just how strong the wind blew or how hard the rain fell.  I got up that morning, and as soon as daylight hit I opened the kitchen blinds.  Instantly I saw it……the patch of Tiger Lilies, stripped bare of their pretty petals and standing there with nothing but their fading leaves.  The storm had blown off all the petals.  They looked stark and ugly in the morning light.
Every single Tiger Lily stalk was stripped bare of its beauty……except for one.  There in the midst of all the sad stalks was one lone Tiger Lily that still carried its orange petals.  It was actually only one part of a stalk, but there it was, alone with its blooms…….standing tall in the midst of all the damage surrounding it.
 
That lonely Tiger Lily stood there for days, even through several other storms, with its petals intact.  And every time I looked at it I thought of a verse and I pondered the lessons that this little Tiger Lily was teaching me.  The verse:  “Be strong in the Lord and in the power of His might.”  And the lessons are many.
I’ve never seen a time when so many are so burdened.  I see it in the world……ISIS, Syria, Gaza and Israel, Ferguson…..I don’t need to keep that list going.  Even the death of Robin Williams hit many people deeply.  It’s exhausting to watch the news.
And then closer to home, in our own families and lives, so many are facing issues of deep concern.  Death, illness, financial hardship, marital stress, worries about children, pressures of all sorts, hurts and disappointments……
I don’t mean to sound depressing, but this is just how life is right now for so many.  And even for those of us who walk by faith, who trust in the Lord, who try to lean on Him for our needs…..we can find ourselves overwhelmed and ready to just give up.  We feel as battered as my bare Tiger Lilies……like our beautiful petals are just about to turn loose and leave us stark and alone.  Why read our Bibles?  The words seem empty.  Why pray?  I don’t feel like God is listening and my mind wanders.  Why obey?  Where has it gotten me?
These are lies of Satan.  These are his ways of stripping us of our beauty that Christ has given us, just like my ugly Tiger Lilies that I saw that morning.  I find it very interesting that Paul, when he was encouraging the Philippians to keep maturing in their faith, told them to press forward……to forget what’s behind and to reach toward what lies ahead.

Listen to this contrast in Isaiah 1, where Isaiah was describing sinful Israel.  He said that they had abandoned the Lord and turned away from Him.  Guess what that phrase “turned away” means?  It means to estrange themselves backward.  Going backward…….pulling away from the Lord and going backward instead of forward.

 

There’s my single Tiger Lily again……standing up and standing strong no matter what was going on around it.  Even when all the other Tiger Lilies let go and gave up, this one stood strong…….like he was pressing forward instead of going backward.  And that’s what we need to do.  Don’t give up when things get tough!  Stay true to God…….keep reading His word…….keep praying…….keep obeying…..keep walking in His ways…….keep trusting.  We may not feel like it.  We may be tired and discouraged.  We may even doubt God.  But don’t go backward…..keep going forward.
It reminds me of a verse from the old hymn, The Solid Rock:
          His oath, His covenant, His blood
          Support me in the whelming flood;
          When all around my soul gives way,
          He then is all my hope and stay.
Stand tall.  Stand strong.  Look forward.  And keep your petals on!