Category: Thankfulness

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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Weary

I’m sitting here wondering how to start this post, so I’m just going to start this post by telling you that I’m sitting here wondering how to start this post. 

I’m still sitting here, wondering.

So I’ll just launch into it.  Gary and I had a disagreement on Saturday about Aaron. 

There.  I said it. 

It’s not the first and it won’t be the last.  😊

Aaron may be nearing 34 years of age, but Gary and I are still in the thick of parenting, believe me.  Like all parents, we don’t always see eye to eye on every issue.  And just when Gary and I think we have some situation all figured out, Aaron not only changes the rules, he changes the entire game!!

Not to sound like a whiner but parenting a special needs adult – or child – is challenging even on a good day.  Gary and I both get tired, on many levels.  What may not be a big deal can easily turn into a huge deal when we’re tired.  And trust me, Aaron can wear us totally out.

For instance, Aaron has just finished watching all four of the Jaws movies.  It’s taken him some time to watch all four of those movies.  Aaron’s current movie becomes his obsession, so lately we have heard more about sharks than we ever, ever, EVER wanted to hear.  Shark teeth, shark gills, shark size, shark color, shark location, shark diet, shark movies, and will there be a FIFTH Jaws??!!

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Please tell me no on that last one!

It’s like I told Gary on Saturday during our discussion about our disagreement…there are some days, many days, that by the end of the day, I am SO done.  Just really, completely done. 

Not done with having Aaron live here.  Not done with loving Aaron, by any means.  But just done, as in deep down bone tired. 

And so is Gary.

We talked and came to an agreement, and we still love each other.  We even still LIKE each other! 

But being tired…not just physically tired, but soul tired…isn’t resolved as quickly.  I don’t know about you, but when I get like this I tend to magnify everything.  Small issues become much larger than they really are.  I mentally bounce all over the place, making mountains out of mole hills, even when I know better. 

I sat down on the patio with my cup of coffee, enjoying the birds and the breeze, and I talked to the Lord.  I told Him I was tired, as if He didn’t know that.  And I told Him, as I am prone to do, that I sure would love to hear from Him.

As clear as day, this day that was just starting, this verse went through my mind:  “Be not weary in well doing…”

And I felt a real peace.

I got on my phone to look up the verse because I’m terrible at remembering references.  It’s Galatians 6:9 (one of the verses), and so I continued to scroll down on my phone to look at other translations and notes. 

One of the references was Malachi 1:13.  I hope you’re going to love this as much as I did.  Without going into tons of detail, God was talking to Israel about how they were neglecting to truly worship Him.  They were bringing defiled food and sickly animals for their sacrifices. 

God told Israel, “You also say, ‘My, how tiresome it is!’  And you disdainfully sniff at it,” says the Lord of hosts.” 

Israel was tired of doing the right thing.  They were tired of obeying God.  In fact, they sniffed at God’s instruction to them.  That means that they blew through their nose.  Much like I did on Saturday morning.  You know…that sniff through the nose when you’re frustrated with something. 

Don’t tell me you’ve never done it!

Sniff!!

OK, so I live with Aaron and I do get tired.  But when God says to not weary in well doing, He’s not saying I should never get tired and if I do then I’m sinning.  The “weary” in that verse means “to fail in heart.” 

It’s my heart…my heart issues…I need to guard. 

How do I do that?  By being careful not to offer God a sacrifice unworthy of Who He is.  God wants me to offer sacrifices of praise and thanksgiving and trust.  And I can only do this when I stop and realize that He is sovereign over my life…my whole life…even all the Aaron moments.  And anything else that weighs me down and causes me to sniff disdainfully.

To lay at God’s feet my worries, my anger, my sadness, my regrets…whatever else there may be…and then to replace all those things with praise and thankfulness and trust in Him.

Then I am better equipped to consciously continue in well doing…to do right even when I don’t feel like doing right…to not be weary in well doing. 

It’s a tall order for sure.  But I have a tall God who really will…and does…give me what I need, when I need it. 

There’s a promise at the end of Galatians 6:9:  “…for in due time we will reap if we do not grow weary.” 

Our reaping will take various forms, but a big one is a harvest of peace.  My situation may not change, but God will give peace as I obey Him. 

What’s got you tired today?  Our lists get long, don’t they?  Health…finances…children…jobs…moving…rejection…hurts…church…

But through and in it all, don’t let your heart fail.  Don’t fail to thank God for so many things, and for WHO He is! 

Don’t sniff at your life but sacrifice your life to the One Who loves you so much!

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Seeing BIG!

Last Friday evening, a good old Kansas thunderstorm was trying to blow in from the west.

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By the time we were getting ready for bed, the winds were kicking up and the lightning was really flashing.  Aaron, who loves storms…especially nighttime storms…was very excited at the prospect of a lightning show, seen clearly from his upstairs westward facing windows. 

“Mom, I want to keep my blinds open,” he informed me as we went through his bedtime routine.  I knew he would want to do this.  Every time we have a storm when it’s time for bed…or the prospect of a storm during the night…Aaron wants to keep his blinds open so that he can see the lightning in all its bright glory.

I’m glad that he’s not scared.  In fact, I join Aaron in his love of watching lightning.  That’s why, after I told him goodnight, I went straight to the bedroom on the other end of the hall.  We still call this room “Andrea’s room,” even though she hasn’t lived here for years. 

I stood at the windows there, in the dark, enjoying the gorgeous light show at this perfect vantage point.  I was actually having a little worship service right there.  Seeing God’s power displayed like this in nature makes me feel so small as I’m reminded of how big God is.

I was also reminded of a time several years ago when Gary and I were going through some deep waters.  God drew me to Isaiah 40 one morning.  Reading of God’s might in creation really soothed my heart.  Isaiah said that the nations are like a drop in a bucket…we are like grasshoppers…that God stretches the heavens like a curtain…and that He created the stars and calls them by name.

A God with that much power and that much care over creation and over our affairs is surely a God big enough to handle my little problems that seemed huge to me!

These truths were going through my mind as I watched the lightning at Andrea’s windows and as I thanked God for His love and His power.  But soon my private viewing of this storm was interrupted.  I heard Aaron’s bedroom door open. 

“Mom?” he asked as I heard his bare feet padding up the hall.

“I’m in here, Aaron,” I answered.  “I’m watching the lightning.”

“Mom!!” he exclaimed as he joined me at the windows.  “I saw it BIG!!”

So there we stood, side by side, watching each streak and each flash of lightning.  Some were muted, but still beautiful.  Then would come a huge burst of light, sometimes with jagged bolts, so bright it actually made us squint our eyes. 

“There’s a BIG one!!”  Aaron would say loudly as he rubbed his hands together and laughed.

Soon he was back in his bed for the rest of the storm, his blinds pushed up so that he could fully see and enjoy each bright burst of lightning.

I’ve thought a lot since that night about what Aaron saw and what he said.  The lightning, so bright and stunning, was indeed impressive.  No wonder Aaron couldn’t just lie in his bed, looking through his windows.  No wonder he wanted to keep his blinds open so that he could fully see each flash.  No wonder he just HAD to find me and to share his excitement.

“I saw it BIG!!”

I want to see God like that in my life.  I want to see Him BIG, but not to just expect His bigness to be demonstrated in BIG events.

It’s like the lightning.  God didn’t only create the huge flashes of light.  He also created the softer, smaller bursts of light…even though they weren’t as impressive as the big and bold displays.  All of God was in all the varying degrees of lightning that night. 

I admit that I love the times when God is big and evident in my life.  And don’t the huge answers to prayer…the “just perfect” verse for the hard times…the miraculous displays of His power…knock our socks off and give amazing testimony to His provision in our lives?

But so do the smaller events…the still, quiet voice…like the little storm cloud that Elijah saw on the horizon, the one that turned into a huge storm.  Or later, how God spoke to Elijah – but not in the strong wind, not in the earthquake, not in the fire.  God chose that day to speak to Elijah in a gentle blowing, a soft whisper.  But  God’s power was just the same in the softness and smallness as it was at other louder and bigger times.  The same God Who sent fire from heaven to consume Elijah’s sacrifice was the God Who also spoke to his servant in a whisper.

On my birthday last month, I found myself sad instead of happy.  It wasn’t anyone’s fault.  Nothing bad had happened.  I just missed Andrea and Kyle, and Andrew, and extended family.  I don’t particularly enjoy holidays and special days for that reason.  But instead of feeling God’s presence, I was allowing my birthday party to be a pity party instead. 

I walked into Bath and Body Works to pick up some soaps.  I always shop with a coupon.  My mantra is “It was on sale and I had a coupon!”  Just ask my kids.  Anyway, I had no coupon because I had used mine a couple weeks earlier.  I sighed, bit the bullet, and went inside to shop.  My “no coupon” situation further amplified my sad day.  Silly, I know, but that was where I was on that morning.

All of a sudden, a stranger walked up to me.  She held out a coupon and asked me if I could use it.  She said she had no need for it.  I was so amazed!  Such a simple act, but one that clearly touched my sad heart.  I thanked her profusely, and then I told her that this day was my birthday.  She was so delighted to hear that!  She wished me a very happy birthday as she handed me the coupon and walked away.  And my heart was lighter.  I thanked the Lord as I drove home for that very sweet show of love for me in that moment…both the love shown by a stranger…and the love shown to me by my Heavenly Father.  For I knew, in that very common and small gesture, that God was reminding me of His love and care for me.

I saw Him BIG in that little act!

Sometimes God shows Himself big here at home, in common events that I often see.  Yet what I don’t always see is the bright touch of God.  The commonplace can all too often hide God’s touch…not because God isn’t showing Himself to be there…but because I too often keep the blinds of my heart closed.  I just don’t pay attention to what He is wanting me to see.

Aaron had a seizure at the supper table one recent night.  Gary and I had worked all day on projects around the house.  We were both dirty and tired, especially Gary.  When Aaron suddenly started seizing, Gary immediately went to his side and held him so that he wouldn’t fall out of the chair.  Thankfully, Aaron was safe.  As he came out of the seizure and was more aware of his surroundings, Gary knelt down by Aaron’s chair and just talked to him.  The look in Aaron’s eyes as he looked into Gary’s eyes was just precious.  I snapped this picture.

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As I have looked at it, I realize that right there was God’s big love shining out of Gary to his son.  I am so thankful for this husband who walks beside me in life, and who also kneels down to care for our Aaron. 

And also grateful that I looked through the open windows of my heart, blinds up, and saw what I know God wanted me to see.  His power and love was shining through Gary to Aaron, and also to me.  What a gift, all too often taken for granted!  Just like the Kansas storms that we get accustomed to seeing and hearing, so I can get accustomed to the care of this good man that God has given me. 

Oh God, may I “see it BIG,” every day.  May I see YOU…BIG…in the joys and the sorrows; in the small and the large; in the friend and the stranger; in the familiar and the new; in the mundane and the unique; and in our home, all around me, every day.   

 

The Sprinkler Rainbow

“MOM!!”  Aaron yelled one evening not long ago as he rushed into the house.  “Come look at what Dad and I saw in the sprinkler!!”

It was just after supper and I was busy cleaning the kitchen as my mind was skipping to the next thing I needed to do.  That next thing was NOT to drop what I was doing and go outside to look in the sprinkler. 

Aaron commonly does this to us…insisting that we come here or go there or look at that in order to see or hear something that to him is just amazing…and to us is often not. 

Yet we have also learned, over our years of life with Aaron, two important lessons.  One is that taking the time to see what Aaron sees is sometimes a source of great joy and wonder and fun.  We might miss something fantastic if we don’t stop to look when Aaron says to stop and look.

And number two is that if we don’t just go ahead and listen and look, we will not have peace until we have heard and seen whatever in the world it is that Aaron is hearing and observing.  The price of peace is certainly worth a look and a listen.

So outside I went, following Aaron as he led the way through the garage and out to the front yard. 

“LOOK!!!” he exclaimed as he pointed toward the spraying water.  “A RAINBOW!!!”

I obediently looked, and sure enough…there through the mist…was a rainbow.

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Now I’ve seen rainbows in the water’s spray before as the sun shines on the droplets just right.  I’ve seen sprinkler rainbows lots of times.  But seeing the colorful prism through Aaron’s excited vision made that rainbow a very special sight indeed!

The moment was so sweet and brought a huge smile to my tired face.  Plus knowing that Gary had shared the discovery of that rainbow with Aaron, full of the facts surrounding the reasons why there even was a rainbow, brought me extra joy.  It was very well worth the extra minutes out of my day.

This past week I had what my good friend, Atha, would have called the “mulligrubs.”  That’s a real word, by the way.  It’s an old word for being down…on the sad side…having the gloomies.  Atha always understood me and I understood her, and we both understood those old down moments…or days.  Atha doesn’t have the mulligrubs anymore because she’s in heaven, but I’m still here on this earth where I sometimes battle the mulligrubs.

There are several reasons why I was gloomy last week, none of which are particularly important.  What’s important is that I was letting my emotions, my worries, and my stresses get the best of me.  Even my prayers seemed to bounce off the ceiling, not going very far, and this definitely left me feeling even worse.

God talked to me in my gloom, though, and reminded me of what Paul said to Timothy about contentment.  He said that godliness…WITH contentment…is great gain.  But how to be content?  Especially how to be content when the tendency of my heart in those moments…or days…is quite the opposite.  That’s because my focus was on ME…not on God…and not on what God was trying to get me to see.

But God, ever patient, reminded me of another truth.  It’s found in Psalm 50:23 and says, “He who offers a sacrifice of thanksgiving honors Me.”  This concept is nothing new, to me or to you, but I am ever amazed at how being thankful can quickly become buried under all my “me stuff.” 

It’s like me in the kitchen the evening that Aaron saw the sprinkler rainbow.  I was focused on the task at hand, and then the next task, and the next, and the next…becoming overwhelmed with all I had to DO.  But stopping to listen to Aaron, to follow him outside, and to observe the pretty rainbow added a splash of joy that I needed that day, even though I didn’t think I did.  I had to stop…to take the time…to really SEE what needed to be seen.

A sacrifice. 

A sacrifice is not only something that I give, but a sacrifice should cost me something.  Otherwise, it’s not really a sacrifice in the true sense of the word.

So what does a sacrifice of thanksgiving cost…to me?

A sacrifice of thanksgiving costs me…me.

It means I lay “me” aside and I dwell on other things for awhile…or other people…or other situations. 

It means I sacrifice myself in order that I may focus on God’s good gifts that are all around me.  When the going gets tough, and the burdens are heavy, and the heart is lonely, and the concerns are just too much…then is when I need to follow God outside of all that, and to look through His eyes at what is around me.

Through the mist that might obscure my vision, if I just stop and look, I’ll see a rainbow.  Splashes of God’s blessings and color all around me.

I have a loving heavenly Father…a house…food…eyes to see…ears to hear…clothes to wear…a car to drive…flowers that bloom (at least some of them!)…a faithful and hard working husband…hands and legs and hair on my head (even on my all-too-often bad hair days!)…our sweet new friend, Jess, at Subway – who remembers Aaron and just gave him some money for Chubby, his stuffed piggy bank…and Aaron!

Aaron…who consumes my time and concerns my heart and confuses my plans and convicts me that God is very real and very present in our lives. 

Aaron…who showed me the rainbow in the sprinkler, and once again helped me to also see God. 

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Quit Chasing the Carrot

I was ready to take Aaron to his day group this morning, waiting on him to also be ready, and so I decided to go ahead and take our recycle items out to the recycling trash can outside.  I hurriedly passed by our Rose of Sharon bush that sits right outside the garage door, at the corner of our house.  This bush is a prolific grower, so as I passed around it on my way to the recycle can I was thinking that its branches were starting to once again crowd the walkway. 

“I need to remember to trim it soon,” I thought as I walked around it.  “It seems like I just did that.” And my mind made a note on my mental “to-do” list of yet another job that needed doing. 

But as I was dodging long branches, and buzzing bees, I was struck with the beauty of the blooms……the blooms that I so often take for granted because I’m too busy with other things “to-do”………and too focused on the work that was being presented instead of the beautiful workmanship right there in front of me.

I took Aaron then to Great Clips for a haircut before dropping him off at Paradigm.  When I got home, I took a few minutes to look at our Rose of Sharon bushes……really look. 

There is so much beauty there in each bloom.

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So much stunning color.

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Such intricate handiwork done by God.

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Why don’t I take the time to notice and appreciate this gift?  Because I’ve grown so used to it that it doesn’t seem important to me on a daily basis.  I see them every day.  They’re common, routine, old hat. 

Much like the morning I just had with Aaron.  A morning full of his routine……coffee, shower, always talking, computer, get him out the door…..nothing fantastic or amazing.

What if I decided I was tired of this routine?  And oh, I have!  But what if I decided not to participate in it anymore?  Things would really fall apart if I reneged on my responsibility.

But what if I realized that this is not just a responsibility?  My life with Aaron is a privilege……an opportunity.

How is that? 

Yesterday, over lunch, my friend Joyce told me again how she had read a book out loud to her two special needs sons.  She told me this again……because she reads that same book, or sometimes on a good day another book……every single night to her sons.  Again, and again, and again, and again……

It really hit me how wearying that sameness is to her.  In fact, she and I laugh about the sameness of our lives with our special sons.  I’ve written about Aaron and Skip-Bo…..Aaron and his bedtime routine…..morning routine……insistence on sameness. 

And sometimes I wonder, is this all there is for me?  I am limited in what I can do because of being tied down with Aaron.  There, I said it.

I mean, I’m limited in what I can do with my life OTHER than Aaron.  I can’t even commit to jury duty or volunteering because he might be having a seizure day or a meltdown day, and I would be a no-show. 

But as Joyce talked, and we laughed about the book reading, I told her that there is another side to this life.  She is giving glory to God in taking care of her sons, day after day, again and again and again. 

You see, God has given her…..and me…..and you…..the life we have.  Sometimes we think that there must be more out there for us.  If only I could do this, or do that……go here or go there……accomplish this or that like others do…..then my life would have wonderful, beautiful purpose.

When really, right in front of me, IS my purpose.  I often see only drudgery if I’m not careful.  Or at least boring sameness.

But God put me where I am, of that I am certain.  So why do I keep chasing the carrot, thinking that grabbing that “always out of reach” something will be where my joy and accomplishment will lie?

God wants obedience more than anything in my life.  He wants me to live this life that He planned for me, faithfully, here and now, with my eyes on Him and on the responsibilities that come with this life with Aaron……not with my eyes on the “what could be but won’t be.”  And then as a result, living in defeat and frustration and anger because I can’t catch that carrot.

So every day with Aaron is a day to point to God by being obedient in the sameness.  I point to God and give Him the glory He deserves when I am faithful where He has put me, not when I am unhappy and miserable.  Misery disappears, too, when I am thankful for this life.

Thankfulness and misery can’t be in the same room together.  The choice is mine.

 It’s good to step back sometimes and look at the big picture……to see how all the blooms grow together into a thing of beauty……not a thing that needs be dealt with, but to be genuinely enjoyed.   

I may not even see the beauty this side of heaven, but God does.  And someday He’ll share it with me, and I’ll be amazed at how the routine and the sameness and the seeming insignificance were actually huge and wonderful and just what He designed for me and for Him.

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The Yo-Yo Life

Aaron had some seizures last night.  We think he only had two.  At least that’s all we heard.  But boy, is he ever out of it today!  It’s amazing how sometimes he bounces back quickly after seizures, and at other times he’s totally wiped out for a day or two.  I can only imagine what they do to his brain……physically, mentally, emotionally.

Throw in a dash of autism, stir the pot, and BOOM!!

Poor Aaron! 

It’s amazing, too, when you look at it in pictures.  Here is Aaron on Friday when I picked him up from his day group.   

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He had seen Spiderman, but even more important to him at that moment were the Sycamore seed pods he had found and couldn’t wait to show me……and later to show Gary.  Leave it to Aaron to find what to him is most unusual, but to us is very usual, and then to make sure that we see that object through his eyes.  He’s pretty cool that way.  Just look at the delight on his face!

He makes us stop and see things his way.  Sometimes it’s great fun…..and other times, it’s greatly frustrating. 

Anyway, compare Friday to today.  He got up late this morning, dreary and slow from the seizures.  He seems to have pulled a muscle in his right arm, which was hurting him.  But he saw the Sunday morning coupons and so readied his usual coupon area for the job he always does, seizures or not.

Except this morning his body just wouldn’t cooperate.  This is how he ended up, coupons and coffee untouched.

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A couple hours later we heard him getting off the couch.  He decided to cut the coupons and drink his coffee.  I checked on him shortly and here is what I found.

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It wasn’t another seizure.  He’s just very tired today from the ones last night.

He woke up again awhile later, ready once more to try clipping coupons.  I heated his very cold coffee, which he drank while he read the Sunday comics.  Then he asked for his fuzzy blanket and his fuzzy pillow, and wondered if he could lay on the big couch.  He was only down for a few minutes before realizing that he just wasn’t sleepy anymore, so he got up and began the coupons that had been waiting all this time. 

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I tell you all of this so you can catch a glimpse into how seizures affect both Aaron and us.  Our day revolves around Aaron’s needs when things are normal, but when he is having a rough day physically then we must stop what we have planned and be here for him.  Gary and I can tag team on a weekend like this, but when it happens during the week then I must often change my plans in order to be with Aaron.  And sometimes Aaron has missed fun days, like movie days at Paradigm or other events, because of his seizures.

These days and these pictures are also an example of how Aaron’s life is full of ups and of downs, as all of us have, but which he cannot control, be it from seizures or from behaviors.  We saw it very clearly while on vacation last week, which I hope to write more about later. 

Happy moments…..angry moments……sad moments……fun moments, are all wrapped up in Aaron.  This is why I think of myself, and so many others with similar issues, as Yo-Yo Parents.  We get jerked around a lot, that’s for sure, but must always remember that God is the one in control even when we feel like things are out of control.  He orders our steps, including the ups and even the downs. 

And God comforts our hearts when we see the child we love having so many issues to overcome. 

I have so many reasons for which to be thankful, but none more than the fact that the God I know and love also knows and loves me, and Gary, and most definitely our Aaron. 

 

In the Hospital!

 

Aaron was in the hospital last week.  Thankfully, this was a scheduled visit and not an emergency like we had two years ago when Aaron got suddenly sick with aspiration pneumonia.  This recent stay was so that Aaron could have a Video EEG.  This testing is an important tool in determining where in the brain his seizures occur, thereby hopefully having some new treatment options offered to him. 

We had determined to make the thought of a hospital visit sound as exciting as possible while also being truthful about the purpose of the testing.  We talked about how we would have time there to watch DVDs; play Skip-Bo; play his Nintendo DS; and ORDER FOOD!!  This all sounded like fun to Aaron, although he would have much preferred to have these same options while staying at home.  I told him that the business of ordering food was not going to happen at home, so off to the hospital we went. 

I gave Aaron his bag to carry as soon as we parked in the parking garage at St. Francis.  I grabbed the rest and we walked to the elevator.  Aaron happily punched the button, and soon the doors opened…….to reveal a rather large man sitting in a wheelchair.  This man was a double amputee, having no legs, and I must say that it was a bit startling to see this.  Aaron just stood there in front of me, and in front of this dear man, staring and not moving.  I gave Aaron a little nudge as the kind man gave a big smile, and told us to come on in. 

“Please, please, please, Aaron,” I thought to myself.  “Don’t say anything you shouldn’t say!!”  Thankfully, Aaron kept quiet as the man and I chatted.  He was so personable and nice.  I’m sure he was used to many stares, and in that respect I could relate to him.  Maybe he knew that.  The elevator door opened and he told us to go on ahead, which we did. 

We walked away a few steps, and Aaron just couldn’t hold it in any longer.  “Mom,” he said.  “That man didn’t have legs!!”  As if I didn’t notice.  I hushed Aaron, knowing that the man was behind us, and so Aaron repeated it again, but quieter next time.  Hopefully the man didn’t hear us.  Later I was able to use that as a teaching moment for Aaron about being kind and polite.  I have no idea if it stuck, because Aaron was immediately off on something else……namely, the bell that he saw and really, really wanted to ring.

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Aaron had to wear button down shirts because of the wires which would be on his head.  He looked so nice, I thought, not at all like he was getting ready to stay in the hospital and have seizures.

Hospital visits for Aaron, I have learned, are very interesting and also challenging.  There are many people who work with Aaron who quickly see that Aaron is unique.  My job, other than caring for Aaron, is to care for those who come under Aaron’s blunt responses……or his silence…..or his attempts at being funny……or his frustrations……and I could go on and on. 

The nurses, the technicians, the doctors……just everybody who saw Aaron…..were wonderful and kind and very understanding.  I’m sure many didn’t totally understand everything about Aaron, but still they were sweet to him and to me. 

The resident who came in every day certainly got an earful soon after we got in Aaron’s room.  Aaron was being hooked up to the EEG while the resident came in to do his assessment, and to ask me questions.  He had lots of questions about Aaron, of course, but Aaron finally interrupted loudly.

“My Mom’s a blabbermouth!!!” he said with a measure of anger. 

I knew exactly what Aaron was saying.  He didn’t like being talked ABOUT while he was sitting right there listening.  However, it just has to be that way sometimes, which I explained as the resident was stifling a laugh.  This resident stifled lots of laughs, and some he didn’t hide at all, during the four days that he saw Aaron. 

Aaron also doesn’t like to be made to feel dumb.  No one there in the hospital did that at all to Aaron, but it was easy to interpret it that way.  Like when he had his first seizure on the second night, and the nurse came in later to check on him.  She asked him to say, “One, two, three, four, five.”  He repeated it, but with frustration, and so she quietly asked me about it.  But it made Aaron feel dumb, he told me later, so I had to explain the situation to both Aaron and to the nurse. 

I was a liaison, I guess.  That could look good on a resume, actually.

So, Aaron was all hooked up shortly after getting to his room.  He also had heart monitors on his chest, so he had both the EEG pack and the heart monitor pack to put around his neck when he got up to sit in a chair or go to the bathroom.  He handled it so well, only getting irritated a few times and REALLY irritated on the morning of dismissal…….which never happens fast enough for anyone, but especially for Aaron.

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He loved watching the EEG lines on the monitor until it was turned off in our room, doctor’s orders for everyone.  It didn’t take him long, as our friend Terri was visiting, to see that when he rubbed his hands together the lines on the monitor became huge and black.  He was really hilarious as he rubbed his hands together quickly and watched the monitor screen darken.  He would laugh loudly before repeating it again.  It was a good thing that the monitor was finally turned off.

When Gary came that first evening, Aaron did get to show him the lines.  “Dad!!  When you were in the hospital, did you have lines?!”  And……

“Dad!!  Get in my bed and see what it’s like!  It HIGHERS!!” 

A bed that goes up and down is such great fun……for at least a day.

His first dinner ordered was:  Mashed potatoes, a roll with butter, and pizza.  He was truly in food heaven!

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He wanted to keep his schedule as much as possible.  We played Skip-Bo the first night, but he got so sleepy that he finally took a nap. 

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He got up at 9:00 to finish our game, but was still very tired.  I suggested bed.  And those of you who know Aaron will guess what he said.

“It’s not 10:00 yet.” 

Silly mom.  Going to be before 10:00!

So I suggested that he brush his teeth.

“Not till 10:00,” he informed me.

Silly, silly mom!

I forgot to bring his deodorant.  Knowing that Gary gets home at 5:30, Aaron said, “When it becomes 5:30, can you call Dad to bring my deodorant?”  He was happy to see it in the bag later that evening.

“Can you put the deodorant on right now?  My chest stinks!”

He loved having Joyce come, and really loved seeing the subs she brought us and the goody bag full of treasures.  His favorite was the sock monkey and the battery operated back massager. 

He talked to Wendy on the phone…….Wendy, whose son has terrible seizures and who totally understands all this video EEG business. 

Aaron told her, “I’m kinda all wired up.  The lines are detecting my brain.”

We laughed, Wendy and I.  But then Aaron said, “They’re trying to discover things about seizures in my brain.”

Bingo!

And that was the difficult part.  To discover things about seizures in the brain, you must have seizures.  So, as Aaron’s seizure drugs were decreased, his chances of seizures were increased……which was the whole reason for being there.  Still, it was hard on Aaron and hard on my mama heart. 

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He did have a seizure, finally, on our second night there and again that next afternoon.  The doctor got the results needed in order to talk about future treatments.  But Aaron’s seizures continue to be what we knew they were from years ago.  I listened to Dr. Lee as he told me the results.

Generalized seizures…….no focal point…..hard to treat……limited options.

But God isn’t limited at all, this I know.  He has a plan for Aaron and for us. 

But Aaron’s plan at that moment was to ask the doctor the all important question:  “CAN I GO HOME???!!!”  Even getting to order food was not so charming anymore.

Aaron was happy, happy, happy to hear that he could go home the next morning.  And on that next morning, he gave the resident a whack on his posterior, much to my great embarrassment……the resident’s great surprise……and Aaron’s great delight.  He squeezed the nurse’s fingers way too hard during her last assessment, and told her that he was tired of her listening to his breath.  He rolled his eyes at the hospitalist when she came in one last time.  He tried to remove his wires on his own, and some had to be reattached, much to his great dismay. 

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But at last, the wires were all removed!!

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The bags were all packed!!

Shoes and socks were on!!

Discharge papers were all delivered!!

The wheelchair arrived!!

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And it was home again, home again……with a stop to get Dad and deliver him to pick up his truck that had died out on the road earlier in the week and was in the shop.  Yes, it was that kind of week for him and for us.  And then a better stop at Taco Bell, and home with nachos and tacos and all our hospital stuff!

Another piece of the puzzle of Aaron’s life and health is now in place.  It’s not the best of news and it’s not the worst of news. 

But no matter the news, we have lots for which to be thankful. 

“Let your requests be made known unto God, with thanksgiving,” the Bible tells us. 

Some days that’s hard to do, but God has a gentle way of reminding us.  Like I’ve said to Aaron since we saw the man on the elevator:  “Yes, you have seizures.  But you can walk!”

And may I add:  Aaron can talk! 

To be continued, I’m sure.

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