Things Done Well

I’m sitting here in the few moments I have before I wake Aaron up for the day, listening to my Dino Piano Pandora radio station.  The song?  “For I know, whate’er befall me, Jesus doeth all things well.”  Old language, yes, but beautiful in its reality for all of us who know Jesus.  He DOES do all things well, whether it’s in His beautiful creation all around us…or our new day that stretches before us. 

None of us knows what a day will hold.  But we do know that God holds us and holds this day close to His heart.  He ordains and directs every minute.  It’s up to me to claim this reality, no matter how large or how small are my moments in this day. 

Aaron provides both of those kinds of moments for me…large and small.  I never know when I open his door to wake him up just what our day will entail.  Happy Aaron?  Angry Aaron?  Sad Aaron?  Giving Aaron? 

It’s always a balancing act, based largely on Aaron’s attitude but really, even more so on mine.  It’s sometimes tough, really tough, to be patient and kind when Aaron is anything BUT that!  I often blow it.  But God is faithful and patient with me, and to Aaron, and for that I am very thankful.

Aaron asked on Sunday if he could take flowers to his favorite Paradigm staff and second mom, Barb.  So on Monday he fought off the early morning grouchies as I reminded him of his flower plan.  And later, after I checked the wait time, I threw in a haircut to boot.  Now I had a very happy Aaron!

A haircut and beard trim improved his looks, and then picking out some flowers at Dillon’s improved his Monday attitude.  A cup of coffee from Quik Trip finished it off perfectly!

Of course, he wanted me to go in with him to Paradigm and watch him give Barb the flowers.  When we walked into her office, we found her on the phone so Aaron had to wait – which is something he rarely does well.  But there stood Ashley, his friend…or I should say, his “sometimes” friend.  They sure can go around at times, getting very angry with each other, but look at what they did that morning.

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A HUG!!  So sweet!  And so unexpected that even Barb, though on the phone, reacted as I did.  “Awwww!” we both expressed. 

And then when Barb was off the phone, the happy flower giving took place, with more “Awwwws,” and smiles, and hugs.  I drove away with a peaceful heart.

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I picked him up that afternoon, still happy and with tales of all the French fries he ate for lunch.  At least that’s the story he told me.  I never quite know if his food exploits are all true, because sometimes he loves to give away money as much as he loves to give away flowers.  He knows that giving away money is not allowed, so he’s become adept at telling me what he knows I want to hear instead of telling me what he really did with his money.  In other words, he has become a gifted liar at times, sad to say.

So I balanced my skepticism of his story with relief at seeing him so happy, not wanting to discourage him or accuse him, yet still driving home the point that I do hope he really DID eat French fries.  But he was already off on his next topic, reminded by his food story that the next day was doctor appointment day…and doctor appointment day means eating out day.  Doctor visits take a major back seat to the real purpose…for Aaron…of doctor days.  They are restaurant decision days!!

Aaron had a difficult time getting out of bed the next morning for his doctor appointment.  It didn’t matter that I had well prepared him the night before concerning the time we would need to leave.  He finally was able to push back the covers, take a shower (possibly! I never know for sure!), drink his coffee, and climb in the van.

I could tell that Aaron was very, very tired.  On many days, he seems to be over-drugged.  Sluggish…slurred speech…very heavy eyelids…wobbly in walking.  This doctor day was such a day for Aaron, but I was actually glad.  Now the doctor could hopefully see what I have told him…that I think Aaron’s weight loss is impacting his medicine dosage.   

Again, more of what we must balance with Aaron.  Seizure control balanced with his ability to function as normally as possible.  Medicine’s benefits balanced with sometimes detrimental side effects.

Aaron is on a new seizure drug since his hospital stay in May for his video EEG.  His seizures are much better on this new drug.  We increased the dosage after one month, but then a few weeks ago we had to decrease the dose back again after he became too slow and sleepy.  Yet still, Aaron continues to have many days and moments of still acting like he is too drugged.

Aaron was still droopy and tired when we arrived at the doctor’s office.  Even seeing some of the staff dressed for Halloween didn’t inspire much of a response. 

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This look at Aaron shows how he really felt that morning.

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The weight loss combined with the tiredness did concern the doctor.  He is used to listening to Aaron talk about Independence Day movies or Captain James T. Kirk or Darth Nihilus, but there was none of that on this visit.  We will be slowly decreasing one of Aaron’s main seizure drugs to see if that will help.  Another decision to make…another issue to balance.

And Aaron had most definitely made his restaurant decision!  No amount of sluggishness could dampen his usual eating-out enthusiasm.  His choice?  Denny’s!! 

He was at first cold from the weather and slow in his reactions…

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But that soon changed as he drank some coffee, ate his favorite side salad with no croutons, finished off his French fries after methodically dunking each one into his honey mustard sauce, and then successfully tackled his stack of chicken strips.  If we ate out like that every day he just might gain back some of that lost weight!

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Watching Aaron for just those two days reminded me again that we have many sides to our complicated son.  In less than 48 hours we saw highs and we saw lows.  We saw progress and we saw some steps backward.  We smiled and we frowned.  We felt relief and we felt our hearts grow a little heavier with nagging worries. 

I remember once when Aaron wasn’t feeling well.  He asked me if he had a seizure during the night, so I told him that he had a small one. 

“That’s probably what’s with me today,” he replied.

Aaron’s epilepsy and autism are certainly with him every day.  And in extension, these issues are with Gary and I every day.  But remember the song I was listening to earlier?  “For I know, whate’er befall me, Jesus doeth all things well.” 

Sometimes the things He “doeth” aren’t what I would do, but I’m not in charge.  God is!  I know He loves Aaron, and loves Gary, and loves me.  All that God does, He does well.  I may not see it as well now, or feel it, or like it, but in my heart and my head I do know that all…ALL…He does and allows, is well and good. 

And THAT truth is really what I want to stay with me today, and every day!

 

 

 

 

The Raging Waves

I remember so clearly the first time I saw the ocean.  There I was, a little West Virginia mountain girl, on our family’s first beach vacation trip.  We had driven from southern West Virginia down to South Carolina’s Myrtle Beach, where we stayed for one week.  I don’t recall how old I was.  I do know that I ran down to the sandy beach and was just awestruck by what I saw and heard.  The ocean went on forever!  And the noise of the waves was both intimidating and amazing.

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I felt small in front of such unending power!  And I definitely felt small when later, either on that trip or another family vacation to the beach, an undertow pulled me out into the water.  I was terrified and helpless!  And ever so thankful when my brother-in-law swam out to me and pulled me to shore!

I’ve never forgotten the power of that ocean.  That experience gave me a healthy respect for deep water and the danger that it can carry.

I recently wrote about Israel’s deliverance by God from Egypt, and how God brought them to the brink of the Dead Sea.  How terrified and angry they were as they stood there, helplessly, in front of this impossible situation!  And God had LED them to it!  Of course, we know that God also led them THROUGH it.

This morning I read in Joshua 3 about the children of Israel finally reaching the promised land of Israel.  And sure enough, there in front of them lay another watery obstacle…..the Jordan River.  And the Jordan wasn’t just any old small, crossable river at this time of year.  Instead, God brought them to the Jordan during it’s annual flood stage.  The river was a huge, raging torrent – very wide and full of masses of swirling vegetation underneath the impossible current.

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We, once again, know the story.  God gave instructions to Joshua and to the people about crossing the scary waters of the Jordan River.  “By this you shall know that the living God is among you,” Joshua told the frightened people.  “God WILL deliver the enemies from before you!”

So God instructed the Ark of the Covenant to go first, and for the people to follow.  God going first.  As soon as the priest’s feet hit the Jordan’s torrent, the waters parted and all the people crossed over on dry ground.

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We sometimes wonder why God leads us the way He does.  Why not just lead Israel around to the promised land on the “dry way?”  Why does God seem to want to do things the hard way?

Well, if we never experienced the terrifying power of the waves in our lives, we would also never experience the redeeming power of our God.  We all at times feel like the Psalmist in Psalm 93:

“The floods have risen up, O Lord.  The floods have roared like thunder; the floods have lifted their pounding waves.  BUT mightier than the violent raging of the seas, mightier than the breakers on the shore – the Lord above is mightier than these!”

As a child of God, you can know that God has a purpose for everything in your life…even the awful junk that seems so unfair and hurtful and wrong.  Sometimes He allows some things to happen that we don’t understand…things that even make us question where He is, or why He let it happen.

We must cling to the fact that God is sovereign, even when we’re hurting and angry and doubting.

Look at Psalm 92:1-2:

“It is good to give thanks to the Lord, to sing praises to the Most High.  It is good to proclaim your unfailing love in the morning, your faithfulness in the evening.”

So we wake up in the morning, thanking God for loving us.  And at the end of the day, no matter what rivers and oceans we encounter, we can say that God is faithful.  He is faithful to lead us, to keep us, and to eventually deliver us.  He is faithful when we don’t feel it, see it, or understand it.  We KNOW He is, and we at times have to cling to what we know even if it’s not what we feel.

Remember that God went first into the water and told Israel to follow.  And likewise, God goes first before us into the turmoil that we face, leading our way and wanting us to trust and follow Him.

God is mightier than any raging waves of life that threaten to pull us under.  Never doubt that for a minute!

Never doubt HIM for a minute!

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These Words

Last night I was helping Aaron turn down his covers as he got ready for bed.  Sometimes there is a moment that is especially poignant with Aaron.  A moment that hits me in a profound way…..in a way that causes me to remember where we were and what we were doing when the moment occurred.  The night before, Aaron….for whatever reason…..was very groggy and dizzy, with slurred speech and unsteady legs.  He was still trying to talk, but with great effort.

Last night, though, Aaron was his usual chipper self.   We were going through his bedtime routine as he talked and talked and talked.  He brushed his teeth, swished his mouthwash, helped me set up our diffuser – which means he poured in the water, checked the name of the oil, and took a little tentative sniff – watched as I turned on the baby monitor we use to listen for seizures, made sure I picked out his clothes for the next day and that they were on the back of his desk chair, put his back scratcher and hand towel on the seat of his chair, blinds lowered, desk clock turned around so the light doesn’t bother him, glasses put just where they belong, wrist watch put right beside his glasses, shoes in front of the closet, stuffed animals precisely in place in his bed, covers pulled up, and animal print blanket put on top of the bed exactly right and with no wrinkles.  It’s a process…..done precisely….or we must re-do the process until precision is reached.

It was when we were standing beside his bed, me on one side and Aaron on the other….pulling up his covers…..that Aaron said this:

“Mom, guess what Shauna is getting?”

Shauna is one of his friends at his day group, Paradigm.

“I don’t know,” I replied.  “What is Shauna getting?”

“She’s getting a NEW wheelchair!” Aaron answered.

Aaron had no idea of the impact of his simple answer to my question, and of the many thoughts that cascaded through my mind in a split second.  He just kept talking.

“I told her she should get a PINK one!!” he exclaimed, and then laughed at the thought of a pink wheelchair.

We smoothed his animal print blanket then.  He was finished with pink wheelchairs and had moved on to his bedtime log book…..his notebook in which he writes down the exact time he gets in bed and the exact time the next morning that he gets out of bed.

10:22.

That’s the time he wrote.

So was it 10:22 when Aaron spoke of Shauna’s wheelchair?  Or 10:21?  That fact would be important to Aaron.

But all I knew, after our goodnight hug and after I had turned out his light, is that my 33 year old son was happy about his friend’s new wheelchair.  That was nice of him.  But…..

Aaron wasn’t talking about his friend’s new car.  Or new job.  Or new house.

He was talking with pleasure about her new wheelchair……because his friends have special needs, like he does…..and a new wheelchair is indeed a big deal.

But as Aaron’s mother, this comment from him somehow yanked open that little door in my heart that I try to keep closed.  I try to keep it closed because I don’t want to hurt for him or for his friends.  I want to see his life as a wonderful thing, and it truly is!

But the reality of his life…..and the lives of his day group friends…..is far different from your typical 33 year old young man. Most young men Aaron’s age would be talking about new cars.  Aaron was talking about new wheelchairs.

I’m so happy that he was happy for Shauna.  But my momma heart got a deeper little crack in it last night.

I haven’t been writing lately.  I’ve just been very burdened about lots of issues.  Life goes in cycles like that, you know.  As a Christ follower, I know to be careful during those down seasons.  It’s very easy to be consumed with the here and now, and with all my own worries…..not to mention the serious concerns for some in my family and some of my friends…..and even our great country.

So I’ve asked God to do what I have often in the past asked Him to do, and that is to give me some extra special assurance from His Word.  And God did just that a few days ago.  He gave me a sweet message from His Word, ABOUT His Word.

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It’s from Isaiah 8.  Israel was facing dark times, and so God told them lots of truths about how they were to behave, how they were to act, Whom they were to obey and to fear, and even warned them about seeking answers from mediums and fortune tellers.

And then in verse 20, God said to Israel:  “To the teaching!  And to the testimony!”

That’s it?

Yes, that’s it!

That’s EVERYTHING!

Where do I need to go when I’m overwhelmed with burdens…..with darkness…..with struggles…..?

Where do I go when the reality of Aaron’s life makes my heart sad?

To a book?  To a person?  To an activity?  To food?  To entertainment?

NO!

To the teaching!  To the testimony!

In other words, to God’s Word.  Staying in my Bible.  Reading it with purpose, asking God to open His Word to me and give me direction….this is where I need to go.

Dale Ralph Davis, in his book Stump Kingdom, says it so well:

“Only the light of the written word will carry us through the darkness of our times.  This holds true whether the ‘times’ are dark historical times, dark personal times, or even the end of our present time.”

Davis then told about Robert Bruce, an old minister in the Kirk of Edinburgh, who on the day he died asked his daughter to set his finger on the last two verses of Romans 8:  “I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”

“These words – that is always the Christian’s slogan.  Only in the teaching and the testimony is there light and help and anchorage.  The Christian is the man or woman who wades through the affairs of life always saying: ‘Set my finger on these words.’”

Wades through the affairs of life……the unexplainable, the sad, the hard, the heavy.

I must wade through it all with my finger on God’s Word.  No other substitute will give me the peace and the comfort that I will find as I read what God says to me in His Word.

I can’t tell you why Aaron has special needs.  I won’t say it doesn’t hurt, sometimes more than others.

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But let me tell you about God.  Let me tell you about His love.  Let me tell you that He is sovereign.  Let me tell you what He has written.

“To the teaching!  And to the testimony!”

 

 

 

 

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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Fast Forward

Sometimes one thing leads to another, and that one leads to another, and then another leads to another, and it can just be amazing to go back and look at the picture created.  This is what I’m seeing today.  I hope I can connect all the “things and anothers” as I try to show you the beautiful picture created by God.

It started yesterday evening when Aaron went with me to Dillon’s.  When we left the store and were getting into the van, the handle of my crossbody purse somehow knocked off my earring as I moved it over my head.  I found the back of the earring as it poked my skin.  Yep, it had gone down my shirt somehow.  But nowhere in sight was my earring.  I hurriedly searched for it, and so did Aaron, but we couldn’t find it.  I told him not to worry, because things like this can worry him, and off we drove to pick up some pizza for supper.

Still no earring appeared as we got out of the van at home, and I searched around some more for it.  “Oh well,” I told Aaron.  “It’ll show up when we least expect it…..or when I clean the van, sometime in the far off future.” 

We sat down to eat and Aaron asked the blessing.  His before-meal prayers, 99% of the time, contain two statements.  What he says varies depending on the day and the current events of our life, but very rarely does he say more than two things.  This prayer was no exception. 

“Dear Lord,” Aaron began.  “Thank you for the pizza.  And please help us find Mom’s earring.” 

I told Aaron it was wonderful to pray about the lost earring, and assured him that God loves to hear those requests.  And don’t you know that a short time later Gary went out to the van to conduct his own search, and he found my earring!  You should have seen Aaron’s face when I showed him that I was now wearing TWO earrings!  And then when I told him that God had answered his prayer!  Aaron’s face lit up like the sun.  It was priceless!

So the lost earring led to Aaron praying, which led to God answering in a sweet way, which led to……I trust……Aaron seeing how wonderful it is to pray about everything.

It was a good thing for Gary and I to see, as well. 

Then came today, which in comparison to what some others are enduring was really nothing.  But in the moment it was, for Aaron and for me, pretty awful.

I want to preserve Aaron’s dignity in this.  I needed to take him down to the air base to have a urine test repeated this morning.  I told him to use the bathroom when he got out of bed, and then by the time he drank his coffee and we got to the lab, he would need to go again.  I rehearsed the procedure with him as we drove to the base.  All was well.

That was short lived.  As Aaron got out of the van at the clinic, I saw that he was doing what I call “The Potty Walk.”  I was concerned, but he assured me that he could wait until he was in the lab bathroom, cup in hand. 

We walked up to the lab window, where the lone lab worker was a little harried.  I heard a door close and looked around to see that Aaron had already entered the bathroom…..NO cup in hand.  I told the harried lab worker to hold on as I scurried to the bathroom and opened the door…..to find Aaron preparing to go. 

“NO, Aaron,” I tried to whisper as I closed the door.  “Please, can you just wait until I get the cup??!!”

I rushed outside, went up to the window again, where the lone lab woman was realizing my dilemma and was trying her best to get Aaron’s info sticker onto his cup…..the cup he still wasn’t holding!  She slapped it on, and I quickly zoomed into the bathroom……to the most awful sight.

Let’s just say it appeared that the plumbing had sprung a huge leak, but the toilet and sink plumbing were fine.  Aaron’s, however, was not fine.

We got the sample somehow, but it’s probably not the best.  I wasn’t the best, either.  Such a mess!  I didn’t know what to do but to try to clean it up, mostly in an effort not to embarrass Aaron by having to tell the poor harried lab woman, in front of others, what had happened.  I had Aaron standing in the corner of the bathroom and kept telling him not to talk, because he talks so loudly that I knew everyone outside would hear.  Like they didn’t already guess what was going on in that bathroom!  “How many paper towels do they need in there?” everybody must have been wondering as they heard the automatic dispenser churn out towel after towel.

And poor Aaron.  His shorts were very obviously wet, and we had to walk out past people in the lab waiting room and in other areas as we left the clinic.  I waited for a few minutes after leaving the bathroom to see if the lab worker needed anything else from us, while Aaron hid behind the bathroom door.  Finally, we just left.  I felt like it was a walk of shame for dear Aaron.  And I was a mess of emotions…..very sorry for Aaron, and embarrassed, and just weak from all of it. 

The plan had been to take Aaron to Paradigm for his day, but instead we just drove home.  I really wanted to cry.  I stole glances at Aaron.  He was very serious, and very sorry, and very quiet.  That made me want to cry even more.

He turned on his music, of course.  It was the Zac Brown Band.  As we drove along the highway, song #4 and song #5 came on, Aaron checking the back of the CD box to confirm the title of each song as he always does.  Then came song #6, which is more of a rock song, and one I don’t like.  I was in NO mood for that today, so I used the button on the steering wheel to quickly go to song #7.  Aaron didn’t seem to notice, which was good.

Oh, but never underestimate Aaron.  It wasn’t long before he realized that song #5 had played, and now song #7 was playing.  What happened to song #6?

“Mom, did you go past song #6?” he asked.  I confessed.  He asked why, and I told him, and he was fine with that. 

As we kept heading toward home, I thought of how nice it would be if we could fast forward through parts of our life.  I would certainly have fast forwarded through this bad morning!

When we got home, Aaron showered and changed clothes.  Then he went with me to Aldi and to Dillon’s, even though I kind of wanted some time alone.  But once there, Aaron and I enjoyed the shopping, especially looking for what we needed for the lasagna he wanted for supper.  He helped bag the groceries and carry them.  He carried the heavy bag of dog food I got when we stopped at the vet, and he talked to Misha about Spiderman and about Star Trek, which always cheers Aaron up.  None of that would have happened if I hadn’t taken Aaron with me. 

Then at Dillon’s, Aaron saw one of the workers that we know as we checked out.  She stopped to talk to us before we left.  Her life is hard, always full of trouble, it seems……and today was certainly no exception as she shared some things with me.  As she talked, Aaron just stood there listening quietly to every word.  As we left, I told her that I would pray for her.

“Does she have a heartache?” Aaron asked me as we walked out the door. 

I was so surprised at his question, but more at his insight and the empathy he showed as we talked together about her. 

And then later, the best part.  We sat down to a lunch of leftover pizza, and again Aaron prayed as we held hands.

“Dear Lord, thank you for the pizza.  And help B have a good heart.”

Wow.  Just wow.

Aaron usually prays for Aaron, and on a good day he might pray about my earring.  But to pray for this friend that we really don’t deeply know……now that was touching and dear and so impacting.

That would never have happened if Aaron had not been with me…..and he would not have been with me if not for the awful lab experience earlier. 

If I had been allowed to fast forward through our terrible morning in order to preserve us from that bad time, then we would not have had this amazing and very good time.  This sweet time of Aaron genuinely listening to another person share her pain, and then genuinely caring enough to genuinely ask God to help her have a good heart.

So you see, one thing does lead to another which leads to another which leads to yet another.  Did Aaron’s answered prayer last night encourage him to pray for our friend today?  I think it did.  Then his bathroom accident allowed him to be with me to offer help today, and especially to be with me to listen to a hurting friend who needs his prayers. 

We all have those times in life when we want to skip song #6 and go right on to song #7……when we want to fast forward through the pain we’re facing and be done with it, moving on to other better things. 

But with God, His one thing that leads to another thing that leads to the other thing is what’s best for us.  It’s a good thing that He doesn’t allow us to fast forward, as hard and as terrible as some of the things are that we face.  He works all of it out for good if we let Him. 

Help all of us have a good heart, Lord. 

And help us not push the fast forward button.

 

 

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. 

 

God’s Backing

Last Wednesday night, Aaron and I were watching a DVD.  I heard a sound coming from him as he sat in his favorite chair.  I looked over to see his head arched back in that all too familiar way, his arms raised above his head, and his face starting to contort into a seizure.  Surprise seizures like that are always a shock, no matter how many times we see them.

I jumped up and removed his glasses, grabbed some paper towels, and noted the time for our log book.  Gary was upstairs by then, so we just stood beside Aaron to be sure that he was all right.  A two minute seizure is typical for him, but sometimes it seems to take forever as we wait for it to be over.

Aaron’s seizures are most often at night, though more and more are occurring at other times.  Night seizures are actually more dangerous, other than the risk of falls during day seizures.  And nocturnal seizures prevent us from seeing the postictal stage, which is the time after a seizure when Aaron is recovering from the effects of it.  During the night Aaron just sleeps, but during a seizure when he is awake we are there to see him coming back, so to speak……becoming aware of his surroundings and of us again.

It was between 10 and 15 minutes after this seizure that Aaron’s eyes opened and he lifted his head from the back of the chair.  It takes some time then for Aaron to register anything.  He still can’t talk for awhile after his eyes open, and he doesn’t respond to things we might tell him to do.  He’s just really out of it for some time.

On Wednesday night I sat on the ottoman where Aaron’s legs and feet were resting.  I rubbed his legs and talked to him.  His eyes were huge as he just stared at me.  He kept those big eyes glued on my eyes, and I just looked back at him as I softly talked to him.  He didn’t respond……only stared with that blank gaze.

I decided to move my head from side to side.  I moved to the right, and Aaron’s eyes moved to the right.  I moved to the left, and again his eyes followed me.  I repeated the moves, and so did Aaron.  I smiled, but he just continued staring.

I sat there looking back at Aaron, assuring him that he was fine.  But I was thinking of how I would hold little baby Aaron in my arms as he fed, or as I rocked him and sang to him, or we just snuggled.  I remembered how he would follow my eyes and my face with his precious little baby eyes, fully trusting me as his mama.

My fully grown man of a child…..still my Aaron……was following my eyes in much the same way that he would follow my eyes as a little baby in my arms.  Just as he trusted me as an infant, he was still looking to me and trusting me in those moments following his seizure.

I tried to blink my tears away before Aaron became alert enough to notice them.  I didn’t want to scare him……plus Aaron has no appreciation for tears.  He would call me a cry baby when he could finally talk, of that I was certain.

But I couldn’t blink away the memories of Aaron as a baby as we continued to sit there in a kind of stare down.  I was like any excited mother after the birth of her firstborn.  I felt that no woman ever, past or present, had ever felt as blessed as I felt when I held and examined my perfect baby son.  I was so thankful and so full of joy at this precious gift Gary and I had been given!

Never ever even once did I dream that I would be sitting on an ottoman staring still into the eyes of my son, but this time my adult son who had just had one of many hundreds of seizures he has had over the years.  Why would I have ever looked down at my baby boy and thought, “I wonder if someday Aaron will have Epilepsy or autism?”

We all wonder if our children are going to be healthy, but a healthy baby like I had lends itself to a confidence that health will continue.  So when Aaron was older and we started noticing some differences in him……and definitely after his first seizure……our reality changed, big time!

But what didn’t change was our trust in the God we know.  Gary and I knew the character of God.  We had walked with Him long enough to know Him well.  And that knowing led to instant trust……trust that our Father knew what He was doing, even if we didn’t.  It doesn’t mean we didn’t cry, especially me.  It doesn’t mean that over the years we haven’t been very tired, very discouraged, very worried, very sad.

But God always, always, always reaches out to us with a personal touch from Scripture…..a still, soft voice in our hearts……a comfort that can only come from the Holy Spirit…..a peace that truly passes understanding……a promise that we have read a zillion times but suddenly is just for us at that moment.

Just the day before that latest seizure, listen to what I read in Psalm 138:2.  I love the New Living Translation of this verse:

“I praise Your name for Your unfailing love and faithfulness; for Your promises are backed by all the honor of Your name.”

God doesn’t make groundless promises.  His promises are backed by ALL the honor of His name.  And that’s all we need.  We don’t need explanations or answers or reasons or guarantees.  The honor of His name is enough, totally enough.  He is sovereign, in charge, and full of love for Aaron and for me and for Gary.

So I thought of all this while Aaron was staring at me and I stared back.  I had a little prayer meeting there, with some praise for His unfailing love and faithfulness…..and for His dependable promises.

God and His promises are there for all of His children, just when we need Him.  I’m so thankful for Him and for His certain plan in my life and in Aaron’s.  He has proven Himself more than enough for us more times than I can count.

I got up from the ottoman finally, and began to get things ready for us to head up to bed.  Aaron still stared at me.  Finally I could tell that he was coming around…..was more alert.

And of course, many of you would be able to guess the first word out of his mouth when he could talk again.

“Mom?” he said.

Why was I NOT surprised at that?!