Mom, Don’t Be Sad

Blah!  Bleh!  However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron.  The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo.  Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it.  On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought.  I guess it’s another home day for Aaron.  I had a must-do trip down to the air base scheduled, so off I went, minus Aaron.  But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm.  I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties.  I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing.  It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world.  Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm.  He was still happy when he called me later to give me a report on his day.  And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

 

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Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it.  He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always.  I reminded him that an Xbox is too expensive to buy for a weekend treat.  Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions.  Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate.  “Do you sell any CHEAP Xboxes?!”  😊  😊

Once home, Aaron helped me carry bags in the house.  He helped me make spaghetti for supper.  Never mind the broken noodles all over the stove-top.  He was trying his best.  He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

 

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He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday.  And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

 

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On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer:  “Happy Birthday to you!  Happy Birthday to you!  You look like a monkey.  You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park.  We saw beautiful Kansas prairie grasses.

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We saw lots of very old, dramatic trees.

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Aaron even happily posed for a picture.

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But best of all, we got up close and personal with this gorgeous deer.

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What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road.  But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading.  And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair.  That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed.  Like he went from being manic to being angry again, for whatever reason.  He was just upset for no reason that I could see.

He said he was not taking his pills, but he did.  He said he was not taking his CBD oil, but he did.  He said he wasn’t going to bed, but he did.  He said he wasn’t going to brush his teeth, and he didn’t do that.  Of course.  😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness.  He noticed my change every bit as much as I noticed his.  He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said.  “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly.  No talking allowed.  But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor.  “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment.  And so did I.  But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them.  Tears of frustration and sadness.  Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am.  I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean.  The ups and downs of life take a toll.  The good news and the bad news.  The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well.  Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God.  He reminded me as I laid awake for a long time of His love for me and of His unending grace.  Grace upon grace.  Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness.  He never lets me down or leaves me to my own resources.  He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise.  For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

 

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Smooth Gliding

Aaron had a seizure shortly after 4:00 this morning, so I kept him home from his day group today.  One seizure not only makes him feel bad when he gets up and about, but one seizure can also mean more seizures to come…especially drop seizures that are so dangerous.

As I went sleepily up the hall this morning to be with him, I was mentally trying to remember what my day held that would need to be changed.  Fortunately, today was just errand day for me…nothing critical that had to be rearranged, like a doctor appointment for me or for Aaron.

Still, the point is driven home yet again that I am always on call when it comes to living with Aaron.  Any caregiver knows what I mean.  It’s very difficult if not impossible to commit myself to activities that would demand my presence, like a job or even some volunteer positions.  And that’s OK for me, thankfully.  God has blessed me with the privilege of being able to stay at home with Aaron.

Sometimes that blessing, though, can turn into a struggle for me.  Aaron isn’t always easy to care for.  Oh, I can handle seizures and wet bedding and interrupted schedules and doctor appointments and all the rest that goes along with life…life with Aaron.

It’s his behaviors, at times, that wear me and Gary down.  Aaron’s ups and downs due to his autism can be exhausting and so very frustrating.  Then when I erupt, along comes the guilt and the “I’m so done!” attitude.  My own ups and downs are personally exhausting to me on so many levels.

So today, in an odd kind of sad way, has been a reprieve for both me and Aaron.  He is far happier when he has no place to go…no schedule to keep…no expectations.  And happy Aaron equals happy Mom – though my heart is always sad to see his seizures and the toll they take.

One toll is that Aaron often loses his taste, as he says, after seizures…and today was no different.  Nothing interested him for lunch until I mentioned cream of chicken soup.  He slurped happily while watching a bit of the old Incredible Hulk television series, leaning back occasionally to hold his head.

 

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Later, I sat down beside him and asked this magic question:

“Aaron, would you like to go get a milkshake?”

How Aaron loves milkshakes!

“Yeah!!” he answered as his eyes lit up.  “And can it be a hot fudge?”

I agreed to hot fudge, and Aaron was happy and very ready to go.

When I later told him it was time to leave, he came to my closed bathroom door with his report.

“Mom,” he said.  “I have on my shoes and my glasses and my watch.”

Bless his heart.  Preparation details for these excursions are very important, even if Sonic is only one mile down the road.

When we got home, Aaron sat on our porch glider with his yummy hot fudge milkshake while I watered the porch plants and swept away some unwanted spider webs.  Then I settled in beside him.

 

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It’s a beautiful day today, and our time on the front porch and out in the yard later was so sweet.  We examined the veins of the flower petals he pulled off my orange geranium.  We talked about the dragonfly that landed near us…about the squawking blue jay we heard…about mosquitoes that drink our blood…about the squirrels that steal all our pecans…about the bag worms that haven’t built any web nests this year…about the bush that needs pruning yet again…and about the molted remains of Cicadas he found.

We examined mushrooms in the back yard…small, medium, and large.

 

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And watched honeybees in the Rose of Sharon blooms, laughing at their legs all fuzzy with pollen as they flew around from bloom to bloom.

We also rocked in our front porch glider.  Well, we attempted to rock.  That’s because rocking with Aaron in the glider is either smooth and fun or is more often a lesson in frustration.

You see, Aaron has a hard time keeping a joint motion going as we try to rock.  I go forward and Aaron is going backward.  Or he keeps his feet locked on the ground, stopping the motion altogether.  When he does master the idea of rocking simultaneously, he goes too fast and furious.

Smooth gliding with Aaron for any length of time is nearly impossible because he doesn’t cooperate.  He’s not trying to be difficult.  He just doesn’t have the motor skills to master the art of joint gliding, so we end up with an awkward mess most of the time.  It takes time and patience on my part to hang in there with him and make it work, at least part of the time.  It’s often best to just stop for a few seconds, and then try again.

In my walk with God, I’m often like Aaron on the glider.  I don’t want to be.  I don’t mean to be.  But oh, sometimes I am so out of sync with God and with who and what I know Him to be.  This is true especially in relation to our life with Aaron.

Over the years, God has worked and worked on me to show me that His ways are best, always.  Not easy, but best.  This path upon which God has set me is of His choosing.

But you know, I get tired.  I find myself saying more and more that I’m done…just done.  Yet that’s when God, if I get still and listen…like when I read His Word to me and I pray it back to Him…says to me that He understands.  He knows tired and He knows being done.

What I need to know is that He is God.  I just need to be still…to quit striving…and to know that He is God (Psalm 46:10).  Sometimes God just needs us to stop the rocking, rest a spell, and then pick it up again.

And I need to let Him do the leading.  It’s a mess when I take over.

I do that by trusting Him, obeying Him, confessing my failures, and looking at Aaron as a gift of God in our lives.

God doesn’t expect perfection from me, but He does expect cooperation if I want to live in peace and joy.  Peace doesn’t come by my surroundings being what I want them to be.  Peace comes to me despite my surroundings so often being an awkward and frustrating mess.

“Just be still now,” God says.  “Quit trying to be the lead as we’re on this glider of life.  I’m right here beside you.  Let Me lead and you follow.”

“Lead me in Your truth and teach me, For You are the God of my salvation; for You I wait all the day.”  (Psalm 25:5)

 

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What Am I Cultivating?

I sat on our patio one recent morning, enjoying coffee while watching birds and dragonflies flitting all around.  The mowed yard, the green trees, the blue sky…it was all so pretty and pleasant.  But then my eyes wandered over to our garden plot.  UGH!!  So much for looking at beauty!

Why?  Because for the second year in a row, Gary and I did not plant a vegetable garden.  Rain…two out-of-town trips…schedules – it all added up to once again, no garden.

Now our  small garden area is a huge mess, full of overgrown weeds and sad neglected old tomato cages.  What a difference to have gone from this:

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To this:

 

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Same ground, but different cultivating.

I read this verse around the time I was thinking about the comparison in our little piece of land from one year to the next.

 

“Trust in the Lord and do good; dwell in the land and cultivate faithfulness.”  (Psalm 37:3)

 

God’s desire for Israel was for them to dwell in the land He had promised to them.  He told them over and over that dwelling in the land successfully and fully would require their total obedience to Him.  In Deuteronomy 30:15-20, God told Israel very clearly what their choice was:

 

“See, I have set before you today life and prosperity, and death and adversity; in that I command you today to love the Lord your God, to walk in His ways and to keep His commandments and His statutes and His judgments, that you may live and multiply, and that the Lord your God may bless you in the land where you are entering to possess it.”  (v. 15-16)

 

God told them that disobedience would bring death and a curse.  He urged them to choose life by loving the Lord, obeying His voice, and holding fast to Him.  And not just life but life AND prosperity.

In other words, to cultivate faithfulness.

This same principle is very true for me today.  I have a choice to make.  God won’t force me to make the right one, but He has told me what the right choice is and how to make that choice.

It’s simple, really.  Choose to love God, choose to obey Him, and hold fast to Him.  Hold fast by hanging onto Him when life is crazy and tiring and disappointing.

I get really tired sometimes.  I know we all do.  Just as I began this blog, Aaron called me from his day group.  I knew he had been having a hard day, and his voice and manner on the phone confirmed it.  I ended up just picking him up early today to avoid any further meltdowns at his day group.  This change in my day was not in my plan.  His attitude today makes me angry and tired.

And guess what I saw before all this happened?  Beautiful beach vacation pictures.  When I hung up from talking to Aaron, I was wanting to just hang up this life with him too, quite honestly.  For a fleeting minute, I wanted to give in to my beach thoughts…have a pity party…and allow myself the “luxury” of wallowing in the wishes for a life I don’t have.

I just HAD to be writing a blog today on faithfulness, right?!

You see, God has put me right here where I am.  This life with Aaron is not what I had planned, but I must see and trust that this life with Aaron is what God planned…for me.

And in this life that He planned for me, I really do want to live it in victory and joy. I want to cultivate this:

 

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And not this:

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It truly is up to me which picture will be the picture of my life.  I choose what to cultivate by choosing whether to love God…obey Him…and hold fast to Him.

I love Him by praising Him even when I don’t like what’s going on around me.

I obey Him by reading His word and finding out what exactly it is He wants me to do each day…and then DO it!

And I hold fast to Him by not allowing my thoughts to digress into selfish wishful thinking and all those “what if’s?” and asking Him to give me grace to love and handle Aaron correctly.

I should know that when God burdens me with a blog, then He’s going to hammer it home to me in a very personal way!  😊

So, wherever you are today…on a public stage or stuck at home…reeling from an unexpected diagnosis…planning a funeral…facing life alone as a single…hurting from unfaithfulness…starting all over in a new life or new church or new friends…losing your job or needing a new one…raising your grandchildren…raising special needs children…

Whatever is your situation, just remember:

CULTIVATE FAITHFULNESS!

And just watch what God will grow in your life!

 

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Lens #1

Last week, I once again took Aaron to his yearly eye exam.  Doctor visits are always an adventure with Aaron.  Waiting for the doctor to come into the exam room is also a test of my patience.   Aaron stretches and wants to lay down.

 

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Or he eyes the tempting equipment and tools that the doctor uses, trying to pick them up and test them out before I tell him to stop.

 

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As I sat with Aaron last week and watched him during the exam, I was reminded of the following post from a couple years ago.  This was such a funny moment for me!   Here is what I wrote:

 

I took Aaron to his yearly eye exam today. God bless Aaron’s eye doctor. Next week I’ll be saying, “God bless Aaron’s dental hygienist,” but today all blessings go his eye doctor and to the staff. Oh, Aaron isn’t mean. He just has a very difficult time understanding what the doctor needs from him…..how to express what he is seeing or not seeing clearly…..opening his eyes wide…..not leaning back from every instrument that comes toward his eyes…..things like that. There was one very funny interchange, though, during the exam. You know how the doctor wants you to tell which lens helps you to see the letters on the wall the clearest.

 

Dr. Nelson: Aaron, is number one better? Or number two?

 

Aaron: Number one.

 

Dr. Nelson: OK. Now which is better? Number three, or number four?

 

Aaron: Number one.

 

Dr. Nelson: Let’s try again. Number three, or number four?

 

Aaron: The first one.

 

Dr. Nelson: You mean number three….here…..or number four…..here.

 

Aaron: Number one.

 

Dr. Nelson: Let’s try these. Number five, or number six.

 

Aaron: The first one.

 

Dr. Nelson: Let’s try number seven…..

 

Aaron: Number one.

 

Dr. Nelson: OK, let’s not do numbers anymore. Is this one better, or this one better?

 

Aaron: Number one.

 

HaHaHaHa!!!!!! How I wanted to belly laugh!! I do believe that number one was the winner, don’t you??!! 😎😵🤣

 

However accurate Lens #1 was, Aaron was sure that this was the lens he liked the best.  He didn’t waver one bit from that determination.

I’ve been thinking about this as I look at my own life, and the lives of many that I know and love.

Through what lens am I looking at my life?

I just ran upstairs to be with Aaron as he had another seizure today.  I’m thankful he was lying down, so there was no falling and no injuries.  But his seizures, especially after all these years, are serious and scary.  As we get older, and as Aaron gets older, Gary and I do wonder about our future and his future.

In the past days, I have communicated with family and friends who are enduring all kinds of trials.  Two with aggressive and serious forms of cancer, out of the blue.  Tragic family issues.  Separation.  Divorce.  Friends who just bought a house and now he lost his job, literally overnight with no warning.  Lots of chronic health issues with no end in sight.

So much suffering! And the way that I view suffering depends upon which lens I choose to look through.

I know the lens I NEED to be using.  I need to focus on the God that I know and on His word that He has given me.  I may be rattled and shaken, but my focus will be sharp if I’m looking to God.  My faith is in and on Him when I look to Him…not disrupted by all the suffering around me that I or others are enduring.

It’s like Aaron’s eye exam.  I need to realize that lens #2 or lens #3 are not right for me.

Fear is not a lens God wants me to use when viewing my circumstances, or the circumstances of those I love.  Neither is anger…or worry…or a host of other responses that are all too common for me.

I know that when I have my eyes off God, life becomes blurry.  I lose focus.  I lose peace.  I lose hope.

I need to go back to lens #1, for sure!!!

The best way for me to keep my focus is to go to my Bible…to read God’s promises and let His words soak into my mind and my heart.

My parent’s favorite Bible passage is perfect for me to use in keeping my focus:

 

God is our refuge and strength, a very present help in trouble.  Therefore

we will not fear, though the earth should change and though the mountains

slip into the heart of the sea; though its waters roar and foam, though the

mountains quake at its swelling pride.  (Psalm 46:1-3)

 

God told us we would have suffering and trouble on this earth. But He also has promised to be our very present help, our strength and our refuge, no matter what carnage is around us.  He is a loving Father who takes care of His children.

This is the focus I need.  God is the focus I need.

God is my lens #1.

I love the old hymn, The Solid Rock.  Look at verses 2 and 3:

 

When darkness veils His lovely face,

         I rest on His unchanging grace;

         In every high and stormy gale,

         My anchor holds within the veil.

 

         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.

 

         On Christ the solid rock I stand;

         All other ground is sinking sand,

         All other ground is sinking sand.

 

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The Hard Parts

Tuesday was my birthday, and an early gift for me that morning was that Aaron got out of bed much earlier than the day before.  Why is that a gift?  It’s a gift because having to wake Aaron up to get his day going often brings anger from him, but if he gets out of bed on his own it usually comes with a far improved mood…from BOTH of us!

Aaron’s bedtime logbook that he faithfully fills out every day shows that he got out of bed at 7:16.  Not 7:15.  7:16.  I just wanted to be sure that I was clear on that point, since Aaron is forever and always very clear and precise about his times.

My memory logbook in this brain of mine has recorded that on Monday, Aaron did not get out of bed at 7:16.  He was sleeping soundly on that morning, so I had to wake him up, which can be very tricky.  Being awakened by Mom is not on Aaron’s list of Happy Ways to Start My Morning.  It’s not on my happy list, either.  That’s because there is almost no way for me to get Aaron to wake up that suits him.  Monday was a rather angry morning for Aaron, but he did go to his day group and I was thankful for the reprieve.

So, Tuesday was wonderful!  Aaron was happy, not at all because it was my birthday but because I did not have to talk to him in my weird voice…or shake his leg…or look at him with squinty eyes…or any of the other very irritating manners that he thinks I demonstrate when I’m working to get him out of bed.

I offered to fix Aaron some French toast since we had time and since he loves French toast.  He readily agreed, so while he showered…in whatever form that process took that morning because we’re never quite sure…I began the French toast.  Later, as Aaron sat down to eat, I saw him immediately place something from his plate onto the table beside him.  Can you see the little dark spot there on the table near his plate?

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I knew what it was.  The small glob was a piece of the toast that had cooked harder than he likes.  Aaron always places hard parts of food off his plate because he will not eat them, and he doesn’t want them near his food that he IS eating.

Later, when we were both done with our breakfast, I saw that on his plate was one more bite of French toast.  I told him he had one more bite to go as he got up from the table, but he told me that he didn’t want it.

“It has those hard parts, Mom,” he explained.  I didn’t push the issue or make a big deal about it.  After all, why ruin our good morning over one bite left on his plate?

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But as I looked at his plate, I thought of how much like life those hard parts are.  Hard parts are most definitely a real part of all our lives.  I wish I could just have all the plump, juicy pieces that are easy to swallow.  But no, it doesn’t work that way.  Life, all too often, seems to have way too many of those hard parts.

I remembered those set-aside pieces the next day as I took Aaron to his Epilepsy doctor appointment.  It was time for more blood work for Aaron, so after his doctor visit, we walked over to the building next door and went up to the lab. We’ve been very blessed that Aaron, from the beginning of his seizures at a young age, has always liked watching the needle go in his arm.  Even when it hurts, Aaron wants to watch each time.

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I looked at him sitting there, taking it all in, and I suddenly wanted to cry.  I wanted to cry because he looked so vulnerable.  We get used to all these doctor visits and needles and medicines and tests, but today it was like I was seeing it all fresh and new.  He was my little boy again, with his life ahead of him…all of us unaware of all the hard parts that were ahead.

Soon we were waiting on the elevator, Aaron more than ready for lunch at Applebee’s.  The door of the elevator opened.  I hesitated to get on because there was a woman in a wheelchair inside, plus the nurse who was pushing her, plus another woman, plus a man.  That’s a lot of pluses!  The woman in the wheelchair saw our hesitation.

“Come on in!” she cheerily said.  “I won’t bite!”

I laughed, told Aaron to follow me, and we stepped inside.  I stood in front of the woman in the chair, facing her.  I saw then that she was on oxygen.  She was wearing a hat to cover her bald head, and her skin had the unmistakable chalky look of advanced cancer.  I thanked her for letting us crowd in, and then I asked her how she was doing.

“Oh,” she said now with weariness, “I’ve been better.”

“I’m so sorry,” I told her.  I wanted again to cry, and I hoped she knew that I cared.

As the elevator stopped and we all went out into the hall, I saw that the man from the elevator was walking with a badly deformed leg, or maybe a prosthesis under his pants.  His walk looked so painful.  And there outside the front door was a van from a hospice group, waiting to take the sweet cancer patient to her destination.

Hard parts.  All around me were hard parts.

Still fresh in my heart was the message from a friend about her impending divorce, received that very morning.  Other concerns for family and friends weighed on my mind…death, loneliness, health issues, fears, financial problems, job concerns.

Do I sound depressing and dreary?  I don’t want to leave it there, because for those who know God and follow Him, these hard parts are also precious parts of growing closer to our Savior.  Jesus suffered, and so shall we suffer.  But we have hope because we know that God is in control of every part of our lives…the easy and the hard.

This hope isn’t like saying, “Oh, I hope that works out.”

NO!  This hope is a certain expectation that all WILL work out according to God’s will, for our good and for His glory.  The outcome may not work out exactly as I want, but my wants are not nearly as important as God’s will.

Is Aaron cured of his Epilepsy?  No.

Is Aaron cured of his autism?  No.

So, how do I handle those “no” answers?  I handle them by fully embracing that a “no” answer is still God’s answer to me.  I trust Him to know best.

And I don’t try to push those hard parts out of my life and out of my heart.  I accept their reality with God’s grace.

Of all the Aaron issues that we deal with, his behaviors are by far the hardest to handle with love and wisdom.  Gary and I get tired…frustrated…overwhelmed…angry.  But Aaron is the whole package, the easy and the hard.  The sad and the hilarious.

We wrap our arms around Aaron and love the whole person, seizures and autism mixed in with all the rest.

Like Jeremiah said:

“Blessed is the man who trusts in the Lord, and whose trust IS the Lord!”

              “You are my refuge in the day of disaster.”

And so must each of us see every part of our lives as just the right mixture that God intended, and not try to remove the parts that are hard as being too hard to handle.  Go in God’s strength and trust Him.

 

 

 

 

Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again.  Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!”  he exclaimed.  “All I do is WORK!!”

No one understands the humor of his statement like we do.  That’s because we all knew…and know…Aaron.  He worked the least but complained the most.  Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron.  Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston.  We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.

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This year we were taking lots of Andrea’s “stuff.”  That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle.  Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show.  He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work.  He was willing to do so, thankfully, and really was a huge help.  He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us.  Eventually, though, as we were nearing the end, Aaron’s impatience started to surface.  He knew that I still had other things to do before we could watch a show.  Bedtime was looming.  His routine was already a mess, and his nerves were showing.  He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings.  Goodness, no!  He doesn’t even understand what’s going on in his head and heart.  But he does SHOW his feelings by usually hurting ours.  Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame.  He blamed his anger on us for making him work.  He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said.  “You made me do servant work!!  I don’t like SERVANT work!!”

It was so hard not to laugh!  But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work!  Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us.  He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again.  😊

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He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.

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This past Saturday, he asked if he could help me with some pruning.

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He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants.  But when his version of normal is anything but, then helping becomes “servant work.”  Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him.  I’ll be honest.  Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times.  Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium.  Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.

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His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his.  Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary.  Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this.  God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength.  Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated.  My goal then isn’t about ME.  It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated.  When I do this, all too often, then I’m doing “servant work” in the way Aaron meant.  Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands.  Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended.  After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.”  (Philippians 2:5-7)

Servant work is God’s work, really.  And He’ll give us what we need to do it the right way, every day.

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Salads and Seizures

Aaron walked into the kitchen on Saturday morning a little over two weeks ago –  March 2nd, to be precise – and saw that I was boiling some eggs.  Ever hopeful that whatever I am cooking will be something he likes and something I am making for him, he stopped and watched for a few seconds.

“Mom, what are you making?” he asked.

I told him that I was making his favorite salad.  He stared blankly, as if he was utterly clueless about this favorite salad.

“You know, Aaron,” I continued.  “The salad you love so much.”

“The salad with Ranch?” he questioned.

“No,” I told him.  “You know, the salad with the eggs on top.”

Still blank.

“And the cheese and the bacon,” I explained.

“Oh yeah!” he finally said.

But he still gave no name to this mystery salad which really is his favorite salad!  Aaron has such a hard time with names of people and pets and, amazingly enough, food!

“You call it Egg Salad, Aaron,” I told him.  “But the real name is Seven Layer Salad.”

I knew he wouldn’t remember the name, but he knew it for now.  It was fun to watch his happy reaction to the thought of this salad for supper…whatever it’s called!

We were looking forward to our day and our weekend.  The day before, on Friday, Aaron had two seizures, and so he wasn’t able to go to his day group.  He missed movie day, which always makes me sad.  Thankfully, though, Aaron loves staying home and showed no regret at all.

On Friday evening, we all went to Wal-Mart to get Aaron’s weekend treats as well as some fun food for the weekend.  We were expecting a strong winter storm to hit on Saturday evening and into Sunday, so there was excitement mixed in with our fun.  We are snow lovers!  I had especially waited until Gary was home from work so he could go with us, just in case Aaron had a seizure in Wal-Mart.  We have learned that when Aaron has one or two seizures, he might have a drop seizure.  These seizures, drop seizures, are so dangerous and unpredictable.  This past year has seen Aaron have some serious injuries from falling.  Thankfully, our shopping trip was uneventful and was fun for all of us, Aaron especially.

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There were no more seizures during that night.  Aaron was happy as could be to think of his free day ahead…the anticipated snow…making chocolate chip cookies with me…steak for supper…AND his special salad!!  Whatever it’s called!  😊

Later that morning, before noon, Aaron was downstairs in Gary’s study.  Aaron was talking up a storm of his own with Gary, as usual.  I was in the kitchen, out of sight of the stairs.  Suddenly I heard a terrible crash…and then the noise that I definitely recognized.  A seizure!!

Gary was beside Aaron in an instant.  As I started down the stairs, Gary told me to get towels.  I was panicked and in tears as I ran for towels, hurrying them down to Gary.  There was blood all over Gary’s hands.  I knew this was serious.

As he started up the stairs, Aaron had fallen backward into a file cabinet, hitting the bottom metal handle with his head and actually bending it.  Aaron is usually not conscious for a period of time after a seizure, sleeping soundly, but not on this day.  He woke up, maybe because we were holding him and applying pressure to the gash on his head.  Or perhaps he awakened because of the pain.  He was combative and scared, something we’ve never seen.  He was fighting us, trying to get away and go up the stairs as we held him tightly.

Finally, Aaron calmed down.  He wanted to know why Gary’s hands were bloody, which of course was scary.  We explained what happened and told him we would need to take him to the ER.  Soon we were in the van, me sitting in the back with Aaron while Gary drove.   Aaron was coherent then.  The bleeding had stopped, but not his pain, of course.  Yet he was remarkably calm and understanding, a trait he often displays in these frightening times.  A gift from God, I’m sure.

I thought of other gifts from God as Gary drove.  We talked about how thankful we were that the sun was shining and there was no snow yet.  I was VERY thankful that it was a Saturday and Gary was home.  And we were thankful still that there is a good hospital and emergency room out here in the country not far from our house.

We continued to be grateful that Aaron was seen immediately and that the CAT Scan showed no damage to his head or neck.  Aaron was so compliant during the scan, even though it hurt his head and the bleeding began again, worse than ever.

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But oh, how my heart hurt for our son!  I couldn’t let him know that.  Gary and I stayed strong for Aaron and for each other.  I really wanted to curl up in a ball and cry, but God gave so much grace to be fully there for Aaron.

And there was Aaron, fully talking up a storm about nuclear bombs, of all things!  Talk, talk, talk he did in his typical Aaron fashion.  He knows a captive audience when he sees one, let me tell you!!

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God gave special strength to Aaron, especially, as he endured 8 staples being put in his head.  I knelt by his side, stroking his arm and face and talking to him during the ordeal.  With each staple, he would flinch…eyes closed…and mutter a soft “ow.”  I felt like my heart was being pierced each time.

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I tell you, our children with medical issues…and I know a lot!…are true heroes.  They endure more pain IN their lives, and disruption OF their lives, than I can fathom.  And yet they just keep on going.  One of our sweetest blessings is that Aaron doesn’t feel sorry for himself or complain about his lot.  He LOVES to talk about what happens to anyone who will listen, trust me, and even to perfect strangers…but he doesn’t act like he resents this life that he lives.

However, once in a while, he does give us a glimpse into his heart and his thoughts.  He did just that on Sunday as we made his cookies, lots of snow outside our windows, and his head still bandaged.

“Mom?” he began.  “Saturday, I thought, would have been a good day, but it wasn’t.”

I really wanted to wrap him in a hug…which he would have promptly pulled away from…and empathize with him about what a bad day it certainly was.  But I knew that I needed to point him to a principle that God points ME to, over and over.

Thankfulness.

“I know it was a hard day, Aaron, but it ended good,” I reminded him.  “What did you have for supper?”

“We had steak!” he answered with enthusiasm.

“And what else?” I prompted him.

He thought a few seconds.  I was hopeful that he just MIGHT remember the name of the salad.

“Triple egg salad!!!” he exclaimed.

Triple Egg Salad??!!

How on earth did Seven Layer Salad become Triple Egg Salad?!

Whatever.

So, for that moment, we were both thankful for Triple Egg Salad!

And in my heart, for so many other blessings as well!

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