Epilepsy – Page 6 – He Said What?!

Biscuits and Blessings

Aaron was very happy last Thursday when I asked him if he wanted to come with me to Aldi. I needed a few things, which with Aaron involved would turn into more than just a few things. Shopping, even for groceries, is Aaron’s second favorite thing to do. First on the list, most definitely, is eating out.

But shopping ranks a close second. Aaron sees a store as a huge area of nearly limitless possibilities. When we enter, he is instantly on the prowl for his catch. Will it be gum? A canister of peanuts? Pringles? Croissants? Thick grated cheese…not that thin stuff!! Or will he find an unusual item that he holds up for me…and all within earshot…to see? Like an artichoke or an eggplant or a star fruit!

Stores are just awesome!!

When we exited Aldi, Aaron had captured a large container of mixed nuts and THREE cans of biscuits!!

The biscuit discussion ensued. When would we eat them? For which meal? How many would we fix? Would I eat any? Would Dad eat any? And even when the questions were answered, they must be asked again…and again…and again.

Expected with Aaron, but exhausting.

I told Aaron that we would eat some biscuits on the next day, Friday. Then he plotted and planned at which meal we would eat them, and how many cans would we fix.

“Can we have TWO ?” he asked.

But I assured him that the three of us did not need more than 8 biscuits, so he resigned himself to that reality as Thursday ended and the promise of Biscuit Friday lay ahead.

Before he finally decided to stay IN bed and go to sleep, he had to verify it one more time.

“Mom? Did you say that tomorrow you’re only fixing ONE barrel of biscuits?”

How I love his phrasing of common names! Only Aaron can make a can of biscuits take on a whole new meaning.

“Yes, Aaron,” I answered with a smile. “We only need one barrel of biscuits.”

During that night, Aaron had two seizures while he slept. But he really perked up when he got out of the bed later that morning. In fact, he talked and talked and talked as he followed me around the house. I was so saturated with his chatter and endless questions that I was in need of some relief.

I agreed when he asked if we could have some biscuits for lunch instead of waiting for supper. He put three biscuits on his plate when they were ready.

He was SO happy! Look at his face as we settled in to watch a Little House on The Prairie episode, and he had his plate full of biscuits. Pure delight!

Later, I was very thankful for that moment. Aaron had another seizure that evening around the time we would have been eating supper. After awhile, when he was alert, he didn’t feel like eating any more biscuits. His appetite is usually ruined right after seizures. It always makes me sad when his seizures mess up his happy moments. But it was like God gave me that sweet gift of watching the joy of Aaron and his barrel of biscuits earlier in the day, knowing that if we had waited until supper then he would have been sad about missing his biscuits…and so would I.

God’s gifts may seem small sometimes but they’re really not at all. They sure do fill my heart and make me happy. ❤️❤️

And God’s gifts are all around us, every day, if we take the time to look.

Who would have thought that our barrels of biscuits would turn into barrels of blessings?

AARON’S Mother’s Day

The above title is not a mistake. You see, every special day for Aaron has one bottom line. That bottom line, simply put, is food. Aaron knows that special days usually call for special food. To Aaron, special food is what makes the world go round. Forget all that love stuff. It’s FOOD, baby!!

This memory from 10 years ago popped up on my Facebook news feed recently:

Aaron: “So are you getting something special since it’s your Mother’s Day?” I walked over to him, put my arm around him and said, “Well, a hug is special.” Aaron: “I was talking about food!!” Ah, if Mom gets special food then Aaron might get special food. Smart boy!

This past Saturday, while I was planting my porch flowers in various pots, Gary took Aaron out to buy me a Mother’s Day card and flowers. Aaron walked up on the front porch when they got home and awkwardly thrust the flowers out for me to take. He immediately turned to walk away, hoping to avoid the hug that he knew was coming. But before he got very far, he turned and said these priceless words: “Mom, now that I got you flowers, can we get something special to eat?!”

HaHaHaHaHa!!!!

He enjoyed watching me put the flowers in a vase.

He was happy when I finished the porch flowers.

He was VERY happy when he hopped in the truck with me and Gary as we went to Lowe’s. A shopping trip might…just might…mean a stop for special food.

So he was beyond happy when he heard the words “Burger King” come out of our mouths. Yay!! Later, as we sat around our table and ate our simple but special food, Aaron was enjoying every bite.

Mission accomplished!!

The next day, Aaron ran into the bathroom as I finished drying my hair. He told me to hurry because he had something for me. I didn’t hurry fast enough, however, and Aaron couldn’t contain his excitement.

“Mom!! I got you a card!! Hurry!!”

No matter how many times I tell him not to divulge the secret, Aaron cannot keep secrets very well when it comes to the gifts he gives.

With unfixed hair, we ran downstairs to where Gary sat. Aaron grabbed the card from Gary’s hand and happily handed it to me.

I opened it, and my laughter delighted Aaron no end!

Later that evening, we feasted on great food – grilled ribs and yummy sides.

And I was once again reminded that, despite the issues we sometimes face with Aaron, he provides us with many special moments.

Happy Mother’s Day to me, from Aaron!

Every day, if I take the time to look.

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms. While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided. A big reason I think this is because I know me. I know me better than anyone else knows me, except God. I know that I’m no more special than any other mom out there. This isn’t fake humility, either. It’s just the truth.

All moms need God’s grace for each day. We who are His children need His grace for our own children in so many different ways. How amazing is God’s grace, too! He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning. He has all that I need. He has all that any mom needs. I asked God many times to give me grace for the challenges that I faced as a mom of all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs. My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

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So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
Who dread with a passion those IEP meetings.
Who dread having to once again explain your child in every new setting.
Who dread high school graduation because……then what?
Who try to ignore the stares from others in public places instead of basking in admiring glances.
Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
Who are searching for the best wheelchair rather than the best bicycle.
Who watch their child being marked for radiation rather than getting a cool tattoo.
Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
Who hurt because their child doesn’t have many, or any, friends.
Who are signing guardianship papers instead of college admittance papers.
Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
Who know more drug names and side effects than they ever wanted to know.
Who spend far more time finding caregivers than finding cool vacation spots.
Who are adept at rearranging schedules due to unexpected medical issues.
Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
Who read your adult child the same book every single night of his life.
Who keep waterproof mattress pads on your child’s bed – your adult child.
Who have a hard time finishing a conversation with your husband without being interrupted over and over.
And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

So to all of you amazing mothers of special needs children, I give you a huge high five!! I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

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See…And Be…The Blessing

While my husband was mowing our yard on Saturday evening, I decided to run down to the store for some good old fried chicken. Working behind the counter was a familiar face…a sweet woman who often waits on me. I always ask her how she’s doing and ask about her elderly mother who lives with her. She missed seeing Aaron with me and was asking about him. Everyone knows Aaron…trust me on that! 😊

I ordered my chicken, and then asked for a few more pieces to be added a la carte. As she filled the container for me, she told me that she would just put in those extra legs and thighs at no charge. I said no, that I would pay for them, but she insisted on her plan. The reason?

“You are always so kind to me,” she said. “I want to do this for you.”

I was so touched…a little embarrassed…and walked away very blessed.

The next morning our pastor shared a meaning of that very familiar word…the word, “blessed.”

He said that to bless means, “To kneel in order to serve.”

He talked about how Jesus knelt down and washed the disciples’ feet. Jesus was kneeling in order to serve.

We often talk about how we want to be a blessing, to God and to others. We also talk about God blessing us.

But how can I possibly bless God?

I bless God by kneeling and serving. I kneel before God, certainly. But I am also to be like Jesus and kneel in service before the people in my life.

As Gary and I listened to the sermon, it hit me. God had given me a sweet object lesson of this “blessing” principle just the evening before.

I had blessed this deli worker by showing her that I cared about her and her life. She turned around and blessed me by giving me some free chicken. I wasn’t showing her kindness for the purpose of getting something free, but my kindness gave her the desire to bless me in return.

As I serve God, I am blessing Him…and He, in return, will bless me.

I don’t mean that God will give me free stuff. I mean that God will kneel down in His kindness and will bless me with joy…peace…love…grace…and other such sweet blessings that are promised to me all through scripture.

Sometimes, though, we think of serving God in big, obvious, public ways. Our human nature and our culture tend to value the well-known over the little-known.

Over the years, more and more, God has taken away most of the public ways I had of serving Him. Instead, God has brought home to me that, well, my home is to be my primary place of blessing God and blessing others. This is my personal experience and doesn’t mean that it will be yours as well. But wherever God has put you is where you ARE, by His plan, and that is the place where you can still bless Him and others.

Home can be a hard place to feel like I am a blessing. The sameness and the drudgery of home life, honestly, can squelch the feeling that I often associate with being a blessing.

Cleaning around the toilet can be a blessing? Really?!

But I’m brought back to Jesus, humbling himself by doing the disgusting work of a servant.

Washing the disciples feet can be a blessing? Really?!

Really.

I kneel. And I serve. In the place where God has put me.

I don’t choose the place. I don’t choose the service.

Validation isn’t the important thing.

Serving is the important thing.

For me, I serve God as I serve Aaron. He was given to us by God.

On a seizure day:

While we walk:

Or he TALKS:

When he wins and grins:

Or asks for that homemade milkshake:

The times are precious:

And so are the children and the homes that we are given!

“Bless the Lord, O my soul, and all that is within me, bless His holy name. Bless the Lord, O my soul, and forget none of His benefits.” (Psalm 103:1-2)

Remember When?

Last summer, Aaron had a dentist appointment…and in his usual fashion, he plotted and planned where we could hopefully eat afterwards.

“Mom?” he asked. “Tomorrow after my dentist appointment, can we eat at Jimmy’s Eggs?”

Yes, he calls Jimmy’s Egg – Jimmy’s Eggs. I mean, who just eats one egg, right?!

The next day found us sitting at Jimmy’s Eggs enjoying a delicious lunch/breakfast. And yes, Aaron did happily eat every bite of all this food!

There was, though, another big reason why Aaron loved Jimmy’s Eggs. Well, it was actually a very little reason that was quite big to Aaron.

Can you see it?

An ant!

Aaron wasn’t alarmed at all by having an ant join us for lunch. In fact, Aaron put a little piece of carrot from his salad on the table so the ant wouldn’t feel left out about not being allowed to order lunch. Next, he added a piece of bacon.

The server was embarrassed by the ant, but I told her not to worry. Aaron loved having the ant company, and it made me happy to watch him trying to care for the little guy.

We haven’t been back to Jimmy’s Egg(s) since then. It just hasn’t been on our dining list, but not because of the ant.

One day not long ago, when the closure of restaurants during this virus was hitting home with Aaron, he thought about Jimmy’s Egg(s).

“Mom?” he asked, “remember Jimmy’s Eggs and how we used to eat there before the virus?”

He said it so wistfully that it made me sad. Like now he measures time as Before Virus (BV) and After Virus (AV).

All of us, though, are having similar thoughts.

Remember when?

Remember when I had a job…was planning that trip I had to cancel…was going to march in graduation…could be with my mother in her nursing home or hospital…was having a huge Easter celebration…could go to church…didn’t fear for my family’s life?

I certainly don’t understand everything that’s going on around us and why certain decisions are being made, but here we are.

What I CAN do is pray, a lot, for God’s wisdom and protection for all involved in this mess. That’s basically the whole world, and for our nation in particular.

When I zoom down to my own life, or the lives of so many that I love, I do find myself at times remembering when…and if I’m not careful, fear and sadness can rule my thoughts.

That’s why yesterday morning, when I read these verses, I was so tremendously encouraged.

“But as for me, I trust in You, Oh Lord. I say, ‘You are my God.’ My times are in Your hand.” (Psalm 31:14-15a)

The word “times” here doesn’t just mean that my lifespan is in God’s hands. David also meant “…all the kaleidoscope of circumstances that meet him left and right. Calvin rightly draws attention to the plural form – ‘times’, and says that David uses it to ‘mark the variety of casualties by which the life of man is usually harassed.’ (Dale Ralph Davis, In the Presence of My Enemies)

Beside verses in my Bible, I often write a date and sometimes a note to remind me of when and how God especially spoke to me through that verse. I call them my memorial stones.

Beside those two verses above, I had written “Nov., 1994.” I was going through a stressful time concerning a possible health issue and the death of my Grandma. We lived in Leavenworth, Gary was deployed for training in the military, I had three little ones, Aaron’s special needs were getting more difficult, and I was far from home and family. But God reached down in that chaos and stress, and He told me very sweetly and clearly that those times…MY times…were in His loving hand.

Now here I was yesterday, with COVID-19 and all its issues swirling around us and those we love, and I was remembering when…

Remembering when God spoke to me all those years ago in another stress.

Remembering when God filled me with peace.

Remembering when God proved His promise to be my God, then, and is doing the same now.

“How often the truth of this text has proven a bastion and bulwark for God’s servants. Ulrich Zwingli, a reformer in Zurich, was visiting his people, trying to console sick and dying. The plague had some to Zurich in August 1519. By autumn Zwingli himself had succumbed to the disease. Confined to bed and staring death in the face, Zwingli prayed: ‘Do as you will, for I lack nothing. I am your vessel to be restored or destroyed.’ Different words, to be sure, but actually just a paraphrase of ‘My times are in your hand.’ One can rest there even in the plague.” (Dale Ralph Davis)

We can rest in God’s hands and in His times for us individually…for our families…for our friends…for our nation…for our world.

Now, beside these verses, I have added a new memorial note: “ COVID-19, April, 2020.”

May God’s promises and His faithfulness be what I remember when I’m “remembering when!”

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Stay-At-Home With Aaron

This Friday will mark one month that I have kept Aaron home due to COVID-19. To borrow Aaron’s words while I was still able to take him shopping: “You’re getting that because of the Coronavirus, aren’t you?” Said with frustration, I might add, as he has seen this virus as a great deal of unnecessary drama in his life. I think many are feeling that way right now!

The other night he got to video message with two of his friends from his day group. It made him realize how much he misses them and his other friends. I was glad to hear him say that, for getting Aaron to re-enter his former routine may take some doing.

He does love being at home, although some days he is at loose ends. When this first started, I thought of something to do every day that would keep him occupied and happy. Watching some shows during the day, for instance, was a treat for him since it’s something we never do. So many activities we would normally do – eating out, movies, the zoo, shopping – are off limits now, so giving happy moments every day was…and is…vital to Aaron and to ME.

However, Aaron has now become a professional Event Coordinator. 😊 He finds it quite fun to plan our days! But today, after going through the car wash and grabbing a to-go pizza for lunch, I had to say no to driving to a nearby lake. My days are still full of necessary home life, so when added to these fun activities with Aaron, I’m finding myself getting behind. I’m realizing that these are the days I used to wish I had…days at home when I could get so much done…but the “getting so much done” just isn’t happening!

One thing I really wanted to do today…and have wanted to do for many days…is to give a quick update on my stay-at-home life with Aaron. What have we been doing to occupy our time? Let’s see:

Playing Go Fish:

Taking drives and seeing fun wildlife like these turkeys:

Cutting coupons:

Watching favorite programs:

Dairy Queen Blizzards at Lake Afton:

Donuts at Lake Afton (this pattern must stop!):

Walks at Swanson Park:

Practicing with selfies:

Cooking:

Getting a new PC game:

Eating by lantern when the electricity went out:

Pulling Weeds:

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And relaxing as only Aaron does, crunching mulch:

We’ve had some moments, for sure, but I can honestly say that Aaron has mostly handled our stay-at-home much better than we thought he would. I know that’s because of prayer, and I am so thankful for God’s mercies and strength and wisdom.

We are truly blessed to have so many options of places to go and activities to do that keep us safely distanced from others, yet able to leave the house and get some fresh air and sunshine, hear the birds, and enjoy this new pause in our lives.

How are each of you and your families doing? I pray that God is strengthening you and that you are being encouraged in unexpected ways during these days.

Let’s keep praying for one another, and for our great country. May God keep us safe and wise, and may we continue loving Him and each other in these unprecedented times.

Talking Points #3

Aaron’s been having what may be Myoclonic (jerk) seizures on occasion. While I in no way take these seizures lightly, what he said about it yesterday was pretty funny. He said, “ALL my arms and ALL my legs were shaking!!” Excuse me now – I need to go count his arms and legs to see just how many he has!

Aaron likes to call us Master, sometimes adding a not-so-flattering word with it, like Master of Darkness. It comes from some of his games and movies. Yesterday at Aldi, I told him to carry our bag of groceries to the van while I put the cart up. “Yes, Master,” Aaron replied. The young mother also putting up her cart heard him, and just smiled. I wonder what she thought? Either that I’m a very stern mom, or that we’re way too hooked on I Dream of Jeanie.

Aaron: Did we get any mail today?

Me: Yes, we got three things.

Aaron: Was any of it bad? (Junk mail)

Aaron (Before I could answer): Did Dad tear any of it in that paper breaking thing? (shredder)

Aaron: Mom, you know what I noticed the Olympics is all about?

Pause for me to answer.

Me: What did you notice the Olympics is all about?

Aaron: SNOW!! It’s all about snow!

We’ve explained Winter Olympics and Summer Olympics, but I’m not sure it stuck. ☺️🏂⛷️

On our way home from his day group:

Aaron: I’m STUFFED!! The bacon and eggs you fixed for breakfast, and then I had burritos!

Me: You had burritos for lunch?

Aaron: Yes! Barb and Brandy took me and Yolanda to get burritos.

Me: Were they good?

Aaron: Yeah! The people asked if we wanted beef or chicken for the insides! 🙂 I got chicken!

I never thought of burritos as having “insides.” Not sure I WANT to think of burritos as having “insides!”

I sent some food with Aaron to Paradigm today – peanut butter crackers, cucumbers, a granola bar – so he just told me that they stopped at Quik Trip and he bought two sausage biscuits and a slushie. He added, “Later I ate the food you sent so it would settle my stomach.” Tomorrow I’m just sending Pepto Bismol.

Aaron’s ear was bleeding, so I asked him what happened.

“I was scratching an itch off my ear!” 😄😄

I asked Aaron what movie they went to see today.

Aaron: We saw Samson! He was Noah’s brother, right?

And later: God gave Samson his strength. Then he could beat up people!!

I think we need to revisit that Bible story. 😁

Aaron walked up behind me at 6:44 this morning. He had just gotten out of bed, not even stopping at the bathroom first.

Aaron: Mom, guess what I saw?

Aaron then waited on me to guess.

Me: What did you see?

He reached into his right pocket. Nothing. He reached into his left pocket. Nothing.

Aaron (finally!): Spiders!

Me: WHAT??!! WHERE??!!

Aaron (very calmly): On my floor.

Me (not very calmly): OH DEAR!!!

I grabbed my glasses as I tried to gather my nerve and wondered if our exterminator could make an emergency call today…or if another emergency call would be made and I would soon be in an ambulance.

Aaron was in no hurry as he walked up the hall to his room. TORTURE!!! Once in his room, he turned and gave me a smile. And I knew.

Me: Aaron! Did you just dream about spiders?

Aaron (flatly, but with that smile): Yes.

He is quite happy that he pulled one over on Mom. He should be happy that he is still standing and breathing!

I am, too. Still standing and breathing, that is. And happy. Happy Aaron’s little story was so clever…and NOT true!!

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Aaron went to the mall today and was telling me that he got an M&M ice cream thing at Dairy Queen. I had told him not to get the triple death by chocolate upon chocolate thing that he usually gets, so he was quite proud of himself for just getting the M&M creation. Then he told me that his friend, Shauna, saw him eating it.

Aaron: Shauna told me that was her favorite.

Me: Did she?

Aaron: Yeah. So is it OK that when it was half high, I let her have the rest?

Aaron not only has a sweet tooth, he also has a sweet side. He loves giving things away to his friends.

And I LOVE how he described giving it to her when he had eaten some of it while Shauna watched. He didn’t give it away until it was “half high.”

He’s not half bad, is he?

And of course I told him it was a very wonderful thing to do.

Me: Aaron, go ahead and take your pills. It’s 9:30.

Aaron, pushing up his sleeve to see his watch: It is not 9:30.

Me: What time is it?

Aaron: 9:26.

Me, in my head: AAAHHHHH!!!!!!!!!!

There. I feel better.

Tired of This

Recently, Aaron had his Epilepsy doctor visit. After his appointment we had to walk over to the building next door for Aaron to have some blood drawn. His liver function needs to be checked routinely due to one of his newer seizure drugs. Aaron wasn’t thrilled about that because he really wanted to hurry up at the doctor and then go to Pizza Hut like we had planned. Eating lunch out, after all, is the real reason Aaron was with me that day. At least that’s the real reason according to Aaron. Going to the lab was just another annoying delay in reaching his true objective. The Pizza Hut Buffet…oh, and Wal-Mart after that. We mustn’t forget the all-important Wal-Mart visit!

The next morning found us going down to the air base for yet another lab visit for Aaron. This time we were preparing for Aaron’s 2-year physical, so labs had to be done ahead of time for that. No matter that we were getting some sleet and snow – we needed to get this done. Aaron had resigned himself to no lunch out that day but instead I would take him to his day group on my way home. However, our van engine light came on, so I had to go back over to our side of town…run to our shop to ask about the light…and by then, I just decided to keep Aaron at home. Happy Aaron! A tiny bit frustrated Mom. And an even happier Aaron when he heard the words “Taco Bell” come out of my mouth.

On the following afternoon, the air base called to tell me that they had messed up on one of Aaron’s tests. We would need to come back and have more blood drawn. UGH!!! Fasting blood work, which would mean getting there in the morning. But the next morning I had to take Gary to his foot surgeon appointment. Gary, who still wasn’t driving due to his surgery.

I’m just scratching the surface of my life right now. And honestly, I’m not complaining. I’m just reporting. (Thank you, Alice Zwemke, for giving us that wonderful statement so many years ago!!). 😊

There we were on that cold Friday morning, back at the air base lab. Aaron was dreary and slow, tired in several ways. He pulled up his shirt sleeve without being told because he knows the routine so well, looked at his new watch perched halfway to his elbow the way he must always wear it, and slowly stretched as he waited for the tourniquet and needle.

“I’m tired of this,” he muttered in his resigned monotone voice.

There went my heart. I wanted to scoop him up in a motherly hug, but it wasn’t the time or place for that. Besides, motherly hugs rarely have a time and place in Aaron’s autistic world.

But I had another reaction as well. The depleted side of my spirit nearly kicked in. My thought was this:

“YOU’RE tired??! I’M the one who’s tired!!”

Yep. Those truly are the words that swarmed around in my head.

Tiredness has been closely following on my heels lately. Not just physical tiredness, although that is certainly present, but a soul weariness that has crept into my spirit.

All of us reach that point at some point.

“I’m so tired of ________.”

Then all of us can fill in that blank…or several blanks, right?

With Aaron, being his mother AND his caregiver, I am pulled this way and that.

Seizures. Autism. Medicines. Side effects of medicines. Weight loss. Low sodium. Needs to eat more. Needs to drink less. New medicines. New side effects. Blood work. Behaviors. Routines. Disrupted routines. Needing caregivers.

Sometimes I’m just so tied up in all of it.

And tied down to all of it.

Discouragement can sneak in unexpectedly. A comment. A picture. A thought. I can let it get to me in ways I know I shouldn’t.

Discouragement can roar in like a Kansas tornado. A seizure. A behavior. A disappointment.

What I do at that point with my discouragement is key to my frame of mind from that point forward.

I can nurture a heavy spirit, or I can let the Holy Spirit do His sweet work in my heart. I can’t change my situation, really, but I sure can work to change my attitude.

I do this through thinking more about my blessings than my burdens. No matter what, I do have so many blessings and it does my tired heart good to think about those instead of wishing for what isn’t.

Another thing that helps me is to go to my Bible, especially the Psalms. For instance, just read and hear the wonderful instruction and hope in these verses.

When I thought, “My foot slips,” Your steadfast love, O Lord, held me up. When the cares of my heart are many, Your consolations cheer my soul.

(Psalm 94:18-19)

It’s not a shallow pep talk. It’s listening to God Himself and trusting that He knows where I am and what I face…and He cares!

Then sometimes there are extra nuggets of love from Aaron himself – rare as nuggets of gold – that warm my soul and remind me of the value of this life that God has given me.

Not long ago, after some seizures and while we watched a show, Aaron looked over at me and surprisingly said:

“Mom, I’m glad you’re caring for me.”

He rubbed his hands together happily as he saw the smile on my face.

“I’m glad I’m caring for you, too, Aaron,” I replied.

And very, very glad that God is taking care of us both!

The Good-Smelling Difference

Aaron was awake and out of bed very early Monday morning, especially considering the fact that he took a long time getting to sleep the night before. We were late to bed on Super Bowl Sunday, and not just because of the game. He and I watched a Dr. Quinn after the Super Bowl…a SUPER Super Bowl for us, by the way. Aaron would tell you that the team we voted for WON!! YAY!!

Aaron enjoyed watching the game with us. He didn’t have many new insights, except for thinking that he heard something upstairs on fire. What?? He was sure of it.

“I hear a snappeling sound!” he insisted.

Gary and I assured him that there was no fire upstairs, but finally he had to prove it to himself, so up the stairs he stomped – he does sound like a bull elephant! – and came back with the report that there was no fire upstairs.

“There’s the snappeling sound again!” he soon insisted once more.

Still no fire.

We eventually realized that the “snappeling” sound he heard was the sound of the player’s shoulder pads hitting together. Who notices that sound?

Aaron does. And isn’t that word just the perfect word for a crackling fire?

He didn’t eat much of the food I fixed. He did try to convince me when I told him that he could have two Rice Krispie Treats that this was, indeed, only TWO! 😊

On this Monday after Super Bowl, Aaron had an autism doctor appointment. Aaron would tell you that we were eating lunch at Old Chicago as the main event, with the doctor visit as an annoying side trip.

He was chipper and happy, eating some breakfast I fixed him, but by the time we left the house later he had greatly changed. I think he had a small seizure that I didn’t totally catch, only seeing the end of it. Therefore, on the way to the doctor he was very tired, keeping his eyes closed most of the way.

The doctor does a good job with Aaron, trying to get him to communicate with her, but he was still draggy and tired…and his answers often very inaccurate. She and I end up, as we did yesterday, talking about my Aaron concerns.

And my concerns seem to grow. Weight loss…behaviors…seizures…a hard time on many nights going to sleep.

Adding a medicine…the concerns with that…

Just on and on. And so many issues are unknown, even to doctors, when it comes to the brain and to the impact of long-term seizures and meds.

Now I was feeling dreary and burdened as we drove away, Aaron’s eyes closed again. Even inside Old Chicago, as Aaron managed to eat two pieces of pizza, his mood wasn’t his usual over-excited self.

But on the drive home, Aaron and I had fun watching the temperature drop number by number as a cold front blew through. He thought it was great fun! It was also great fun to anticipate getting a haircut, which he loves. I had signed in on-line and he was happy – but still very tired.

We ran home for a quick stop and to grab our jackets. Then I told Aaron that I was sure a few Reese’s Cups would perk him up.

“Yeah!!” he agreed.

He carefully took three small ones, put them in his coat pocket, and off we went.

I never know when we go to Great Clips just how the visit will be. As we walked in the door, I was just happy that Aaron didn’t barge in and loudly say,
“I’M HERE FOR A HAIR-CUT!!!” – as he so often has in the past.

However, yesterday I realized that we didn’t know any of the stylists. I could feel discomfort invading my happiness. I just never know if someone will understand Aaron or stare at him in that all-too-familiar way that makes me half angry and half sad. I was hoping for someone who knew Aaron and was good with him. Instead, we were given the perfunctory greeting as we entered, mixed with inquisitive stares.

UGH!!!

Aaron and I sat in our chairs, him totally unaware of my concern. He wanted to know what Bed Head meant as he examined the products on the shelf, his voice still a little slurred. Finally, he sat down and carefully pulled his Reese’s Cups out of his pocket.

Two were placed neatly on the chair beside him, and the third he slowly unwrapped. He ate it, and then repeated the action two more times.

By then, the stylist walked our way and called his name…and I, with huge relief, saw that Aaron was in very good hands.

I knew he was in good hands because of the stylist’s big smile and her comfortable conversation with Aaron. There was none of the awkward staring or obvious discomfort that we sometimes encounter when we are out.

Aaron sat in the wrong chair, one he has often used, but she handled it so easily. Soon Aaron was sitting in the correct chair as the stylist asked him if he watched the Super Bowl. Perfect question!

“Yeah!!” Aaron answered. “Who did you vote for?!”

“I wanted the Chiefs to win,” she answered. “Did you?”

“Yes!!” replied Aaron, rubbing his hands together in delight.

They talked about Super Bowl snacks as she cut Aaron’s hair and trimmed his facial hair, and soon she was done.

“Aaron, would you like some good smelling stuff in your hair?” she asked.

“I need to ask Mom,” he said as he looked my direction.

“MOM??” he yelled. “Can she put some good smelling stuff in my hair?”

I laughed and said yes, of course, knowing how very happy Aaron would be with this turn of events. He doesn’t have enough hair for good smelling stuff, but that’s not at all important.

Smiling, good smelling Aaron left there a very different person than when we walked in. I did as well, I assure you.

And once again it hit me just how big a difference one person can make in another person’s day….specifically, in Aaron’s day…and thus, in mine.

Later that evening, Aaron was waiting on me to finish some things in my bedroom. He was hovering, as he so often does.

“Mom!!” he suddenly exclaimed. “Do you want to smell my hair?!”

Normally, that would be a no. A big no. But not today, thanks to our difference-making hair stylist.

“Sure I do,” I answered.

Aaron chuckled in joy as I took a sniff. He was rubbing his hands together, a sign of his total happiness.

Who would imagine that such a simple thing as good smelling hair stuff would bring such happiness to Aaron and to me?

His hair still smelled good, but more importantly, his heart was light and happy. The residual nice scent was like the residual warmth in our hearts, both of us.

Never underestimate the difference you can make in someone’s life, especially in the lives of our special ones. It isn’t necessary to spend money or to take tons of time.

A smile…a word…the warmth of understanding…are all such sweet gifts to each of us, parents and children alike.

That good smell lingers for such a long time!

Longer than the good smelling stuff in Aaron’s hair, trust me! 😊

Hanging Off – Or On?

Aaron has a way of repeating what we say but changing just one word or even just one letter, and so making us laugh or pause in thought. He has a uniquely Aaron way of expressing himself.

That is, after all, the reason I started this blog and the reason I named it He Said What?!

For instance, yesterday we had some rough weather move through our neck of these Kansas woods. Aaron was concerned, asking about the storms and wondering if he should turn off his computer.

I’ve often shown him the radar and pointed out some storms headed in our direction. I sometimes refer to them as a clump of storms coming our way.

So, as he followed me around the house and fretted over his computer being hit by lightning, he said, “Mom! Is that lump of storms going to hit us?!”

Two words, so similar, yet somehow the difference was enough to make me laugh.

Aaron has become a fan of the television show Chicago Fire. In December the fall finale had the typical…and very unrealistic…cliffhanger. Aaron has talked and talked and talked and talked about those canisters in that basement, surrounded by fire, and whether they would blow up or not!!!

I told him that this was a cliffhanger. Aaron, who is very literal, saw no cliff in that fall finale. He also saw no one hanging from a cliff in that basement.

I therefore…and not for the first time…explained that a cliffhanger is when the show’s producers leave you hanging on after the last show of the season in order to make you come back and watch the first show of the new season.

Hanging ON.

But here is Aaron’s take:

“MOM!! I can’t wait till January 8^th!!

Then he waits for me to ask why he can’t wait till January 8^th.

“Because that’s when Chicago Fire comes back on!!”

Then he waits for me to show excitement. I am a good actress.

“Remember how they left us hanging OFF??!!”

Then I laugh. He thinks my laughter is an expression of my excitement over Chicago Fire resuming.

But my laughter is really about the way he changed my original phrase.

Are we hanging ON…or hanging OFF?

His change-up of that one little word has had me pondering over the past few days.

Hanging OFF a cliff is a scary situation, to put it mildly.

Hanging ON, to me, conveys hope.

In life, when I am hanging off a cliff of fear or dread or disappointment…or any number of other scenarios…I must remind myself to hang ON.

I hang ON to God and to the hope that He gives me.

How often our life with Aaron changes! We can so quickly go from enjoying life:

To the suddenness of seizures:

The above picture was right after Aaron’s third seizure on Christmas Eve, just as we were getting ready to play Christmas Bingo as we Skyped with Kyle and Andrea from Houston.

It’s a stretch for Aaron to want to play games. My first heart reaction was to wonder why. Why must he have a seizure when he was actually willing to sit with us and play a game?

Sometimes his seizures keep him from participating in something that he really wanted to do. That makes me sad for him. Disappointed.

He did arouse enough to play Bingo, but I played his card because he was uncoordinated and shaky…and grouchy, which is typical when he plays Bingo.

Every day…every situation…can be a cliffhanger with Aaron. Will we have seizures to manage? Behaviors to handle?

I do feel like I’m sometimes hanging off a cliff, holding on for dear life, afraid of what’s next and afraid of falling…of failing.

But then I must remind myself that I’m not alone. I know and trust God.

And I hold ON to Him.

I don’t understand everything.

I don’t even like everything.

But I love God, and I know He loves me.

So whatever cliff it is, I do know that I’m not just hanging off.

I reach up and I hang ON to God.

He lifts me up and He rescues me…not from the situation, necessarily…but from the danger of despair and hopelessness that can so easily overwhelm me.

After all, look at what God says about Himself in Psalm 91:15:

“He will call upon Me, and I will answer him;

I will be with him in trouble;

I will rescue him and honor him.”

May I remember, every day and in every cliffhanger, that I don’t need to just hang off.

I can hang ON…to the God Who rescues me.

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