Can You Be Sure?

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

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

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

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

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

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

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

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

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

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

“Can you hear if I do?” he clarified.

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

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

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

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

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

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

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

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

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

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

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

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

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

But…..REMEMBER!!

Remember the Lord!!

The Lord Who is GREAT and Who is AWESOME!!

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

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

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

The Lord Who is GREAT!

The Lord Who is AWESOME!

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

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

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

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

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

Remember!  The Lord!

Getting Aaron

I ran into Great Clips this morning, taking Aaron for another haircut, shave, and beard trim, and who greeted us but Erin!  Erin has worked there for quite awhile.  Erin loves Aaron, if you follow me.  She’s a mom, and just a very sweet person who genuinely loves seeing our Aaron.  So it’s always nice when Erin cuts Aaron’s hair! 

Erin is one of these people who just gets Aaron.  She was genuinely happy to see Aaron as we walked through the door.  She talks to him while she cuts his hair, asking him questions and interacting so well with him.  I just love having people like that in Aaron’s life.

 

I can tell very quickly if someone gets Aaron or not.  You don’t have to totally understand Aaron to get him.  Is this making sense?  There are just some people who from the first moment they encounter Aaron, are relaxed and accepting of him.  And there are others who look at Aaron like he has an alien head or something…..although Aaron would think that having an alien head is pretty cool. 

For instance, Friday evening Aaron and I went to Little Caesar’s for pizza.  The line at the take-out window was long, so I decided that Aaron and I would go inside to grab our pizzas.  As I parked, I gave Aaron the usual directions…..wait for me, don’t barge in the door, if there’s a line then don’t push ahead, please don’t clap, and please talk SOFTLY!!  Of course, I was trailing behind him as I finished my instructions and he was barging in the door.  Oh well.

Thankfully, there was no line, so Aaron had free rein to walk up to the counter, lean way over and loudly say, “Can I have some breadsticks??!!”  I was tugging Aaron back while reminding him to talk softly and also reminding him that I already told him he could have breadsticks…..when I turned and saw the cashier’s face.  She was staring a hole through Aaron while she wore totally no expression on her face.  There was no emotion at all from her.  She looked at Aaron like he was perhaps an alien, but a very boring alien.  Like she was thinking, “Who are you and why are you in my store?”   

Aaron was very excited and happy, totally oblivious to this girl’s cold stare.  He continued to interrupt as he loudly asked if we could get TWO pizzas as well as breadsticks.  Her eyes went from me back to Aaron, with her impersonal cold stare once again.  At times like that, I’m very thankful that Aaron doesn’t get social cues.  This girl didn’t get Aaron, but Aaron didn’t get that she didn’t get him, so in that respect all was well. 

But all was not well in my spirit.  I wanted to give her nose a little pinch and then deliver a lecture, but of course I didn’t.  And I know that maybe she was having a bad day.  Yet really, deep down, I just know that some people get Aaron and some people don’t.

Tuesday for lunch, Aaron and I met his case manager at Applebee’s for his yearly PCSP meeting.  Barb, from Paradigm, was there as well.  Aaron is as comfortable with Barb as he is with me, so she understood Aaron’s whacks on her arm, his too tight squeeze of her hand, and how he helped himself to some of the chicken on her salad.  It was our server, though, whom I especially noticed.  She made eye contact with Aaron, smiled at him, listened to him, and was genuinely relaxed with him.  I even looked at Barb and whispered, “She gets Aaron.”  And Barb knew just what I meant. 

When someone understands Aaron, it’s as obvious as the nose on their face….like that little girl’s nose that I wanted to pinch.  J  But it’s very obvious to me when a person understands Aaron, and even accepts him just as he is.  Sometimes being in public with Aaron is embarrassing, honestly.  He’s large, and loud, and totally blind to the effect he has on others by being “out there” with some of his behaviors.  He might point at someone because of their hair or whatever.  He might turn around in the restaurant booth to see what the people behind him are eating or saying.  He might stop to stare at their plates as we walk out of the restaurant.  And if he goes to the bathroom by himself during our meal, it’s very interesting to watch people’s faces as he walks by, his head high and arms swinging, often making funny noises with his mouth.

So when someone gets Aaron, I find myself relaxing some.  It’s as if I don’t feel the need to explain, which I usually don’t do anyway.  I shouldn’t have to explain Aaron.  He is who he is, in all his boldness and uniqueness.  But I’m human and I feel my face getting red when Aaron does something a little crazy that draws attention to us.  It’s nice to see others understand him even if they don’t really understand…..to accept him…..and especially to enjoy him. 

Having Aaron in my life has taught me to try hard to show understanding to other families I see who are probably uncomfortable in public.  I remember when Gary and I ate dinner at a local restaurant with some friends.  Our table was near a mom and dad who were eating dinner with their special needs son.  I noticed their son immediately.  He was stimming in his unique way, and I just knew what they were feeling.  I could see it on their faces, especially the dad.  So I finally made eye contact with the mother, and I smiled at her.  I pointed to myself and shook my head yes.  She was a little confused, so I just stood up and walked over to their table.  I spoke to her and her husband, and told them who I was…..and that I had a son much like their wonderful son.  They both visibly softened and relaxed.  They were so happy that I understood and that I spoke to their adult son, and that I got it.  That’s what meant the most to them….the fact that I got their son. 

So when you’re out and about, and you see an Aaron…..or most likely, when you HEAR an Aaron…..just smile at the parents with genuine love.  Even when their Aaron might pull one of the lower boxes of cereal out of the huge cereal box display….and mom stands there with fallen cereal boxes all over the aisle….smile and maybe even offer to help pick them up.  Yes, that happened to me.  And the help of a sweet teenaged boy was such a blessing that day!

There are special people all around us who need us to get them.  There are families of special ones who will feel a huge weight lifted off their hearts if you are that person in their lives. 

I get it!  You can, too.

One Minute Matters

The last blog I wrote told about Aaron’s difficulty in returning to his routine.  He had a very difficult three days as he adjusted to leaving the house every morning and going back to his day group.  Monday wasn’t too bad, Tuesday was awful, and Wednesday was very “iffy.”  I wrote about Tuesday……the slumped shoulders, sitting in the rocks, actually throwing some rocks, etc.  On Wednesday, I went into the building ahead of Aaron because he said he wasn’t getting out of the van.  I just got out and headed inside, and so he followed me.  He talked to Barb, who knows how to calm him, but he kept saying he wasn’t going to stay.  Barb said she would just drive Aaron in her truck over to where Bryan was working on a house, so Aaron walked outside with her, all the while saying that he was NOT staying at Paradigm.  I just stayed mostly quiet.  Aaron stood at our van, but finally went with Barb and then had a good day.  I drove away just asking God for wisdom, patience, and strength.  We ask God often for those three things when it comes to Aaron.

Later Barb and I texted.  She said Aaron was totally fine the rest of the day.  I told her that I think he is testing me, and she said that they would do everything they could to see that I passed the test.  And the staff at Paradigm truly does just that.  They know Aaron, and they know how to work with him….how to calm him……how to understand what’s behind his actions, when they can understand.  Sometimes no one can figure him out. 

Bryan and Aaron worked together all week on different house projects…..residential settings that Paradigm manages.  Aaron was quite proud of the fact that he helped Bryan put tile down on a floor, but on Thursday he brought a piece of the “tile” home and we saw that it was actually laminate flooring.  It wasn’t long before Aaron had given me a resounding whack on my rear with his little plank, and he got a good lecture from me.  I learned the next day that he had done the same to Barb.  He just never seems to get it…..rarely is able to control those impulses.

 

Anyway, he came home on Thursday all smiles as he couldn’t wait to show me what Bryan had fixed for Aaron to wear around his head as they worked.  It was fun to see Aaron smiling and so happy.  He went from his slumped shoulders on Tuesday:

 

To a face full of smiles on Thursday:

 

Today he said, “Mom, Bryan told me that I’m his number one man.”

“Oh, Aaron,” I replied.  “That is such a nice thing for Bryan to say!”

“I think it’s weird,” Aaron flatly replied……which made me laugh……which Aaron also thought was weird. 

He’s so funny.  Last night he was watching an alien movie in his room, having a blast.  But when he came downstairs and saw a sweet family scene on the movie “McFarland,” he said, “That’s weird!”  So for Bryan to call him his number one man seems weird to Aaron, but deep down I think Aaron loves it.  He just doesn’t know how to convey that sentiment like we do.

Just like he doesn’t know how to handle his frustrations over returning to real life after a month away.  Instead of sitting and having a conversation about it, he has to yell and threaten and cry and throw rocks.  Then our frustrations mount, and we have to be so careful how we handle it.  I’ll admit that it gets old.  Gary and I were talking about it last night.  We really don’t know what a “normal” life is at our age.  Other parents of children, young or adult, with behavior issues know exactly what I mean.  Yet there aren’t many great alternatives, and we do love Aaron.  God gave him to us, so we just take one day at a time.  And we are ever thankful for people, like the staff at Paradigm, who work so well with Aaron and help us on this journey.

We see progress with Aaron, but his core issues will probably always be the same.  I’ve always tried to see the humor in so many things that he says and does.  Sometimes I don’t have to look hard, for he truly is so funny so often.  On Friday, our electricity went off a couple times, so Aaron’s clock by his bed was messed up.  As I was helping him get everything ready for bed, he asked me if I would set his clock.  I told him to look at his satellite clock beside his desk and tell me the exact time so that I could get it right on his night stand clock.

“OK, Mom.  It’s 10:05,” he said.

So I punched the buttons for the hour.  Then I did the same for the minutes. 

“It’s 10:06 now, Mom!” he told me.

And wouldn’t you know, I punched just one too many and the clock said 10:07.

“Oh well,” I said.  “One minute won’t matter, Aaron.”

Who was I kidding?!  And I knew it.

He just stood there staring at his clock.  And I knew that one minute did matter.  It mattered very much to Aaron.  He can halfway brush his teeth.  He can wear the same pair of socks for days in a row, seriously, if I don’t catch him.  But one minute too fast on his clock is not tolerable.  Not at all.

“No,” he replied.  “I want it at 10:06.”

So I hurried and re-punched the buttons, but by then it was nearly 10:07.

“Wait,” Aaron said. 

And he began counting the seconds.

“48…49….50….51…” he continued.

And when he said “60!” and the time was now officially 10:07, I punched the little button very carefully, ONE time, and then all was well.  It was 10:07 on his nightstand clock and on his satellite clock.  They were synced correctly, and now Aaron could go to bed.

If only he would sync his life to ours as easily!  If we could just punch a button here and a button there, and make us all line up together in harmony…..wouldn’t that be awesome?

But I know if we did that, then we would also miss a lot along the way.  Like I told Gary last night, even in the midst of our tiredness and sometimes deep frustrations, we really can look at many amazing facets of Aaron.  We just need to remind ourselves of that on some days when no matter how many buttons we push, things just don’t line up the way we want. 

Honestly, on many days we end up syncing ourselves to Aaron.  We can pretty well predict how he’ll react to different situations, and what he’ll say.  He doesn’t sync himself to us nearly as well, but when he does it’s cause for celebration.  Like how he made it through this week and the expectations that were made of him.  It was a huge accomplishment for Aaron!

But tomorrow morning may be another story.  I need to remember that ONE minute.

48….49….50…..51…..

Some Special Heroes

Hero:  One endowed with great strength or ability; one that shows great courage. 

Don’t quit reading.  I promise I’m not going to launch off into my opinion of Hollywood’s latest hero worship fiasco.  Besides, those of you who know me know what I think about it….and I certainly don’t need to add my voice to the many voices who have so adequately expressed my views. 

I was going to write this blog anyway, someday, but now I have many reasons to do so.  And yes, a big reason is the messed up qualities that our culture is trying to cram down our throats…..not only the person this week but the people every day and every week that they try to convince us are worthy to be called heroes. 

Another reason I want to write about some heroes I know is because of a conversation I had this morning with Barb, a manager at Paradigm and one of the kindest people I have ever known.  She told me of a business owner across the street from Paradigm, Aaron’s day group.  This man is not a nice neighbor to Paradigm.  One day, as special needs clients were outside on Paradigm property, he told the Paradigm staff that they could “take their circus somewhere else.” 

Someone hold me back!  A circus?!  Excuse me?? 

That poor man.  He has no idea that he has heroes across the street from him every weekday.  I looked around inside Paradigm today and I saw amazing young adults.  Shauna gave me a huge smile from her wheelchair.  Jessica waved at me and gave me a beautiful smile.  Paul gave me a hug. 

For years I have been surrounded by heroes…..by individuals who have extreme challenges, but display extreme strength as well.  How often do we “normal” people stop to think about what these special people face every day of their lives?

Each of them has a diagnosis, but their diagnosis does not define who they really are.  There is Epilepsy, Doose Syndrome, Autism, Prader Willi Syndrome, Spina Bifida, Muscular Dystropy, blood disorders, Downs Syndrome, Developmentally Delayed…..

But my friends are real people with real lives.  They were named by their parents, who love them so deeply. 

Jennifer

 

Darien



Johannes

 

 

 

 

Elijah

Christoph

 

 

 

 

 

 

 

 

Alyssa

Aaron

 

Nicholas

Bethany

 

 

 

 

 

Rosa

Kaleb

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

They each face, or have faced, more physical challenges than I have ever seen in my own life.  Could I ever deal with even a fraction of what they handle, sometimes every day?

Seizures.

Taking medicines every day.

Facing the side effects of all the meds they take, which include being sleepy, dizzy, gaining weight, mood swings, organ damage, bone loss, etc.

Surgeries, some extreme.

 

Multiple doctor appointments.

Test, tests, and more tests.

 

 

 

 

 

 

 

 

 

 

 

 

Fear of infection.

This is just a very partial list of what they routinely encounter.  They pick themselves up, every day, and they live.  They live their lives to the fullest.  Would I be able to function after having one seizure, or would I just go to bed for the rest of the day?  How do some of them do it after having multiple seizures, sometimes daily multiple seizures? 

But there is much more than just the physical part of their struggles.  What would it be like to face the social aspects of living life every day with a disability or a diagnosis that hindered you from living like your peers?

Having to go to special classes at school.

Having an IEP.

Not going to college.

Wanting to drive but not being able to get your license.

Having seizures in public.

Looking different, possibly.

Being bullied or teased.

Not having filters, so you say things that others don’t like or understand.

Not having close friends, or any friends at all. 

Not being invited to go out with your peers.

But our kids keep on going.  Somehow they manage to not only live, but to laugh and to grow and to thrive the best they can.  They jump over the challenges and push ahead, every single day.

I’ve watched Aaron on a seizure day as he still tries to smile, to get out of bed or off the couch, and to continue his day as best he can.  I’ve seen him go back to hard situations, like after he’s had a meltdown, and face his staff and friends again.  I’ve heard him say that he wished he could drive as he watched Andrew pull his truck into the driveway.  It’s sad to understand that he can’t even go out on his own to get a hamburger without depending on someone to take him.  I’ve been deeply touched as he watched his brother and sister grow and move on with life.  It broke my heart when he came home from his special needs school one day and said, “Mom, I noticed that all those kids there have problems.  What are my problems?”

And I want to say, “Aaron, you don’t have problems.  You have challenges, yes, but you have overcome them every day of your life in ways I’m not sure I could.  You are strong, and you are tough, and you are brave!”

You’re a HERO!! 

And so are each of these wonderful young people that I’ve mentioned today.  They are each full of courage and strength to live their days as fully as they can.  They wouldn’t think of themselves as heroes, but I do! 

 

And they don’t belong to a circus!!

They belong to a unique group of Super Heroes!  They should be on magazine covers and cereal boxes and talked about on the news!!

But they probably won’t be.  So look around you every day and find the true heroes among you.  Smile at them, love them, encourage their families, reach out to them when you can, and pray for them. 

 

I am very thankful to know so many heroes….TRUE heroes that fit that definition perfectly. 

 

 

 

 

 

 

 

 

 

 

 

 

 

And someday I’ll see two other heroes that have already gone to heaven.

Ben.

 

 

 
 
And Katy. 

They live on in our hearts, and especially in the hearts of those who knew them best. 

Don’t listen to silly Hollywood stories and look at ridiculous magazine covers to find a hero. 

I guarantee there are many special heroes around you every day who could be your example of strength and courage. 

I’m so blessed to live with one!  And to know many others!