God’s Care – Page 5 – He Said What?!

A Sweet Touch from God

Aaron saw the commercial for Pumpkins at the Park, and soon after he was telling Gary and me all about it. I had already seen posts about the event on Facebook and had told Gary that we should take Aaron, so with Aaron’s excitement already abounding I knew it was a match made in heaven. Tickets were ordered and plans were made to drive the mere mile and a half up the road to Tanganyika Wildlife Park on the following Saturday night to experience some pumpkin Halloween fun.

Aaron, who must plan multiple details before any occasion that he will attend, began to ask questions and to get his mind organized for our fun night. His list included:

Will I need a coat?
Will I need gloves?
Will I need a hat?
Will there be lots of people there?
Will there be food to eat?
Will the animals be out?
What time will we leave?
What time will we get home?
Do we have tickets?
Where are the tickets?
Mom, why are you sighing?

I answered all but the last question…multiple times. Which is why I was sighing, but Aaron doesn’t know that. It wouldn’t matter if he did. He just knows Mom’s weird that way and by the way, “Will I need a coat?”

Sigh.

But this is Aaron, and we totally expect the repetitive questions and ultra-planning. His comfort level depends on it, and trust me, we want his comfort level to be high…especially since our comfort level is so closely tied to his. Like, totally tied to his. COMPLETELY TIED!!

OK. Moving on.

As Gary and I climbed into bed on Friday night, the monitor beside us on my nightstand turned on to listen for Aaron, I told Gary that I sure hoped Aaron wouldn’t have a seizure during the night. You see, a nighttime seizure nearly always means a daytime seizure or more the following day. I didn’t want Aaron’s much anticipated Pumpkins at the Park to be ruined.

Wouldn’t you know that at 11:58 I heard a seizure. My heart dropped more than it usually does. Why on this night of all nights must he have a seizure? I was so sad for Aaron as I went to help him, and then returned to my own bed when the seizure was over, and Aaron was safe.

Surprisingly, there were no more seizures that night. But in the morning, Aaron’s eyes and actions showed that he was still feeling the effects of just that one seizure. I feared more would certainly come. He couldn’t even stay awake for his coffee, and later slept on the couch for awhile.

Still, no seizure.

When he napped in his bed later that afternoon, I thought for sure he would have one because that is what’s typical. I listened closely as I carried the monitor with me around the house.

And still, no seizure.

All day long, as we worked outside and as Aaron hung out with our little neighbor’s boys next door, no seizures.

And that evening, there we were at Pumpkins at the Park.

Aaron was totally ecstatic, and that’s no exaggeration. He didn’t stop smiling the entire evening.

We went from this:

To this:

Look at his smile!! Isn’t that just awesome?!

He loved every single part of the park that evening. The scary:

The spooky:

And the sweetness:

Speaking of sweet, I especially love this sweet picture of Gary and Aaron walking on the path.

And I love the sweet touch from God we all felt on that day. It was sweet to spend that time together and not have it ruined by seizures.

Sweet to have this special memory tucked away in our hearts.

Thank you, God, for such a sweet touch from You!

Fixing the Broken

Last night I felt like this:

Mangled. Broken. Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group. Mixing all the various special needs can at times be volatile. Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair. I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later. I hoped that maybe, just maybe, they really weren’t beyond repair. The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

WOW!! Talk about a miracle re-do of what I thought was hopeless! She received my profuse thanks with a smile on her face and the comment that she loved a good challenge. I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually. I believe that about covers it. And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty. Talking about being truthful, Aaron is just that…at least in his mind. He has few filters, and totally does not get social norms. He is often unaware of other’s feelings. He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning. His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired. I get angry. I did last night, when Aaron who had been happy decided to be rude just before bed. He and I didn’t have our normal cheerful bedtime routine. He was still out of bed, on his computer, when I went to bed. I didn’t even challenge him. I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron. Somehow, it’s easier to show compassion for ones I seldom or only occasionally see. Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add. I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile. He even received the hug I offered! We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights. I had intended to sit there and pray, but sitting with Aaron was important, I knew. We talked softly about some of this and some of that. Then Aaron decided that he could take his pills, but I reminded him that it was too early. He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm. I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule. Gone was my caring at all at that point about the 12-hour rule! In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh. Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot. But today Aaron let me laugh. This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters. Or the 12-hour rule.

But it was good. Very good.

It was our normal.

And it was a gift. A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.” (Psalm 147:3)

Of No Use?

Our neighbors across the street from us had a yard sale a couple weeks ago. Aaron loves yard sales! He REALLY loved the fact that there was a yard sale right across the street! He asked if we could go over and check it out to see if there was something he could buy. I agreed, knowing that he would end up over there anyway talking to Derek and Gina until I came to the rescue and escorted him home.

Before we left, I remembered that in my wallet was an envelope that held Aaron’s remaining Christmas gift money. I was always forgetting it was there! I looked inside and pulled out the cash. Aaron had $5.00 to spend, and he was happy.

It didn’t take Aaron long to spy exactly what he wanted. A lava lamp!! Aaron LOVES lava lamps and has been through several over the years. He has a glitter lava lamp in his room now, but this was a good old normal lava lamp. Aaron knew he had found his yard sale prize!

We looked at the sticker and guess what? It was priced at $5.00! Could it be any more perfect? We crossed the street with the “new to Aaron” lava lamp, carried it up to his room, placed it on his already crowded nightstand, plugged it in, and went about our day.

Aaron was waiting, though, for the level gunk in the lamp to begin bubbling. As he went about the remainder of the day and evening, he kept glancing at his lit lava lamp. There was no motion, however. The gunk was still.

“Mom!” Aaron finally said. “Do you think I bought something that is of no use?!”

I turned my head away so I could smile at his phrasing. He’s just so funny sometimes…so precise.

“No, not at all,” I responded. “The lamp just takes some time to heat up the goo inside.”

Gary got home and Aaron happily showed him his new lava lamp…his still not-moving lava lamp. Supper came and went, as did evening chores and Wheel of Fortune and watching our DVD show just before bed.

As Aaron got into his bed, he sighed with exasperation as he looked at his boring lit but not bubbling lava lamp.

“I think I bought something that is of no use!” he sadly repeated as he pulled his covers up. I was beginning to wonder myself if the lamp would work even as I told Aaron that it just needed more time.

No one was happier than me to walk in Aaron’s room the next morning, his coffee in hand, and see the lava lamp bubbling in all its globby glory!! YAY!!! Yay for Aaron…yay for me…and a special yay for Derek and Gina, whom I was afraid would have certainly heard all about the lava lamp that was of no use!!

Aaron was happy, happy! And every day since then, when he returns from his day group, he plugs in the lava lamp, totally enjoying the goopy bubbles in all their various shapes and sizes!

Last night, Aaron went to bed talking about how he was going out to eat lunch the next day with a group from Paradigm – his day group. There is nothing Aaron loves any more than eating out. So, this morning I wasn’t too surprised to hear him stirring early. How early? Aaron keeps a logbook like this:

IMG_1442(Edited)

This morning’s time was:

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He had so much to look forward to today! He was ready to get this show on the road! He supervised me as I poured his coffee and carried it to his room, then told me he would shower and dress. I went back to my quiet time desk, but it wasn’t quiet for long.

Aaron was soon standing behind my chair, his shower completed and his impatience growing.

“Mom,” he ordered. “Take your shower and put your make-up on so it will become 9:00!”

I soon realized that Aaron’s hurried mood wasn’t going to improve until he saw me making some headway concerning my shower and make-up. But I also realized that Aaron’s eyes were very droopy, and his mood was changing even further from excitement to not feeling so well. He told me his head hurt, his stomach hurt, and that he felt like he was having a dream. We’ve learned that this often means a seizure is coming. Aaron was ready to go back to bed, and sure enough I soon heard on the baby monitor the unmistakable sound of a seizure.

I never like Aaron’s seizures, of course, but I especially detest them when they keep him from doing something that he’s looking forward to so much. No eating lunch out today for Aaron, I thought. Bless his heart!

And my heart? My mama heart takes a beating every time I watch Aaron going through this hard part of his life. He handles all this much better than I do, thankfully. But as I looked down at Aaron when I checked on him later, look what was in the background.

The lava lamp. Aaron’s lava lamp, that he worried was of no use, was performing perfectly there beside Aaron in his bed.

And it hit me. How easy it would be for me to wonder about all the why’s of Aaron’s seizures and autism…to even feel like it was all sadness and of no use. But never, never have I felt such hopeless thoughts. Even in the changed path of Aaron’s life…changed from what we thought our firstborn son’s life would be…there is the sure hope that only God can give.

You see, knowing and following Christ gives to me and to Gary and to Aaron the same hope that God gave to Jeremiah to share with the Jewish nation centuries ago.

“I know the plans I have for you,” declared the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.” (Jeremiah 29:11)

I can claim that promise for us and for Aaron today because we know that God! We know that He has told us in Romans 8:28 that “ALL things work together for good to those that love God, who are the called according to His purpose.”

God doesn’t plan to hurt us! He plans to work for our good in order to conform us to Christ! We have a hope in Him and a future beyond anything we can imagine!

So you see, all the tough times and the sadness and the unanswered questions we may have do NOT mean that this life is of no use. Absolutely not!! This life is working perfectly, just how God intended, and in that knowledge – in God Himself – I can trust, and I can rest.

The Chicken Whisperer

God did the sweetest thing last week and I wanted to share it with all of you. Some of you read my last blog about how Aaron and I went from a very happy almost three days, to having Aaron crash and taking me with him. We went from happy to sad faster than it takes for me to run from a spider…and those of you who know me know that’s FAST!

On Saturday evening, while Aaron and I were happily watching a movie, I got a message from my friend, Summer. She asked if Aaron and I would like to come down to her family’s home in the country to see their chickens. A couple of the hens recently had baby chicks so Summer thought Aaron might like to see them. I eagerly said yes! That sounded like so much fun. The invitation just added to my happy and I was…well…VERY happy!

Our future chicken visit was a bright spot after Aaron’s happy disappeared on Sunday night. I looked forward to it so much…to having something fun to do with Aaron that was out of our norm.

Wednesday, chicken day, finally came. Aaron slept later than anticipated, but at last he and I made it to Summer’s house. How pretty the day was, and how pretty their home was as we pulled into the driveway! I immediately noticed the windmill and thought it was a perfect Kansas scene.

Aaron was a little nervous because he had forgotten meeting Summer, and he had not met her sons, and he wasn’t too sure about meeting the chickens – fun as it sounded. But Summer came right out to meet us, as did Austin and Tyler, and they all put Aaron right at ease. Right away we were standing at their pond, where they tossed out some fish food and up from the water appeared lots of catfish.

Aaron thought that this very cool! And what fun it was when he got to throw some food out in the water as well!

We walked behind the house then, and there were the chickens…and a goose, Paco. As we approached the gate, one of the chickens hopped up right beside Aaron. Aaron petted her, and Summer told Aaron that he was a Chicken Whisperer. 😊

Inside the enclosure, Aaron got to throw some chicken feed on the ground and soon we were surrounded by chickens.

Aaron got to hold a chicken, managing to still hang onto his prized goose feather he had found at the same time.

Then we saw the cute baby chicks under low hanging evergreen trees. Surprisingly, the mama chickens were very tolerant of us being so close to their babies.

Summer was telling us that no one had been able to hold a baby chick yet because of their protective mamas. Just then we turned around and saw this:

“How did you do that, Aaron?” Summer asked.

We laughed, and I wondered if maybe there WAS something to this Chicken Whisperer after all.

Aaron sat in a chair and Summer gently talked to him about how to carefully handle the wee one.

Then one more up close and personal with one of the grown-ups:

And the opportunity to gather some eggs with Austin before it was time to go.

We left there later with a plate of cookies that Summer had made, and with the eggs that Aaron gathered, and with such happy memories just made.

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When we got home later, after eating too much at the Pizza Hut buffet, a thought hit me. I couldn’t remember when exactly Summer had messaged me about coming to see the chickens, so I looked at my messages and there it was. Summer had messaged me, as I said earlier, on Saturday night.

Saturday night…when Aaron and I were still in happy mode. Saturday night…before the sadness of Sunday night. Saturday night…before I knew just HOW much her invitation would mean to us.

I know in my heart that Summer was nudged by God to message me that night. I was excited to receive her offer, but I had no idea what the next night held. I had no idea that I would be wiping away tears of disappointment on Sunday night when on Saturday everything was going so well.

But God knew. God cared about me enough to prompt Summer to invite us down. God knew before I knew…and He knew what Summer didn’t know…and that was this: that He wanted to bless me and give me a hug when I really needed it through the action of one of His children who was listening to Him.

This thought and this seemingly simple action is simply profound to me. God indeed does go before me in ways I sometimes never see, but when I do see it I can only say, “WOW!!”

And to thank God for His sweet care for me, and for Aaron, by using one of His very sweet families.

No action is too small or insignificant to be used by God in a huge way in someone else’s life.

Thank you to Summer, Tyler, and Austin!

And a special thank you to God!

Mom, Don’t Be Sad

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

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

Aaron’s mess often makes me a mess.

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

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

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

What a relief to me to see him happy!

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

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

Aaron came to the van looking like this:

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

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

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

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

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

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

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

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

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

We saw lots of very old, dramatic trees.

Aaron even happily posed for a picture.

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

What a very fun, relaxing afternoon!

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

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

I just wish I knew why.

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

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

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

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

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

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

“Mom!” he said. “Don’t be sad!”

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

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

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

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

“Mom, don’t be sad.”

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

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

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

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

Gary was right beside me last night, as always.

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

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

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

“Mom, don’t be sad.”

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

Smooth Gliding

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

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

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

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

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

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

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

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

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

How Aaron loves milkshakes!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rising to the Occasion

Written three years ago, but not blogged…until today. 🙂

I had thumb surgery last week. It’s certainly not major surgery and I’m getting along very well. However, I’m wearing a bulky splint and I’m under strict instructions from the doctor about what I can and cannot do. I’m realizing how much I use my thumb in ways that I never even thought about. I can’t pick up small items very well with that hand; I can’t shuffle our Skip-Bo cards; can’t easily hold a Ziploc bag in order to open it with my good hand; can’t tie shoes; can’t keep from hitting the spacebar with that bulky thumb all wrapped up 🙂 – just to name a few.

Gary, as he has been so often in the past, is a wonderful help to me. For instance, just this morning he made sure to get ready for work a little early so that he had time to tape a plastic bag to my arm so that I could shower and still keep the splint dry. Gary rose to the occasion, as he always does for me.

Today I picked up some dog food for our big Jackson. The bag of food weighs over 27 pounds, far over the coffee cup weight limit I’m allowed to carry with that hand. Stacey, our vet’s wife and a dear friend, carried the bag of dog food to my van. Stacey rose to the occasion for me.

This morning I was reading Exodus 15, the deliverance song the Israelites sang after crossing the Red Sea on dry ground. The song begins with these words:

“I will sing to the Lord, for He is highly exalted. The horse and its rider He has hurled into the sea.”

The words “highly exalted” carry this meaning – that God rose to the occasion. I love that!!

I can point to so many times that God has risen to the occasion for me as I’ve faced some hard times, frustrating times (even today!), fearful times, and uncertain times. I know that many of you, my family and friends, are right now staring at very difficult and sometimes seemingly impossible situations. I’m praying for many of you!

So, I just wanted to share this little nugget of blessing with you today. God really will rise to the occasions in your life. He parted the sea for Israel. That mighty God of Israel is the same God we know today. His power hasn’t changed a bit. His desire for us is that we trust His timing to know just how to rise to the occasions that we face. Whether He dramatically hurls our problems into the sea, makes a way through them, or allows us to endure them as He gives us His peace and grace – we don’t know.

But we can know that He will rise to the occasion in the way that’s best for each of us. Then we can also sing with Israel: “This is my God, and I will praise Him!”

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Lens #1

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

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

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

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

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

Aaron: Number one.

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

Aaron: Number one.

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

Aaron: The first one.

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

Aaron: Number one.

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

Aaron: The first one.

Dr. Nelson: Let’s try number seven…..

Aaron: Number one.

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

Aaron: Number one.

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

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

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

Through what lens am I looking at my life?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God is my lens #1.

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

When darkness veils His lovely face,

I rest on His unchanging grace;

In every high and stormy gale,

My anchor holds within the veil.

His oath, His covenant, His blood,

Support me in the whelming flood;

When all around my soul gives way,

He then is all my hope and stay.

On Christ the solid rock I stand;

All other ground is sinking sand,

All other ground is sinking sand.

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A Girlfriend

Tears stung my eyes one night last week as I listened to Aaron suddenly tell me about how much he loved his friend, N. Oh, he’s talked about N for a long time. Sometimes she’s his good friend…sometimes she’s his antagonist. She is a fellow client at Paradigm, Aaron’s day program, and they have known each other for years.

Aaron’s developmental delays due to his autism and seizures have prohibited him from having some of the normal joys of life that our other two children have enjoyed. He’s not able to drive. Holding down a job would be very difficult for him. Responsibilities that they have assumed as they have become independent have not been possible for Aaron.

Aaron has always had a pretty simple view of life. He’s never seemed to really mind not moving on in life as Andrea and Andrew have. It’s actually a blessing that he doesn’t have those desires. He’s very happy to live as he does.

Yet when Andrea and Kyle started dating, we saw another side of Aaron beginning to show. It was a combination of jealousy over Kyle’s relationship with Andrea, whom he dearly loves, and resentment. But was there resentment over Kyle taking Andrea away? Or resentment over Andrea and Kyle having something that he did not have?

Two years ago, Aaron went with Gary and me to see Andrea in Houston. This trip had the different dynamic of Kyle now being in the family picture. He and Andrea were not engaged yet, but we all knew that they would be someday.

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On one hot Texas afternoon, Kyle was showing us around Galveston. We walked in the historic district, going into quaint shops and enjoying the sights before heading to dinner and the beach.

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Aaron, however, was in a very foul mood. And when Aaron is in a foul mood, no one is in a good mood.

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Aaron didn’t want ice cream. Aaron didn’t want candy.

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Aaron didn’t want to look at old architecture.

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Aaron didn’t want to have his picture taken.

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It was miserable. WE were miserable! He kept saying, “I just want to go out to eat and go to that lake!” A really big lake, by the way.

In the parking garage, as we walked to our car, Aaron finally had enough. With pent-up anger, as I tried to walk with him and cheer him up, he blurted out: “Well, Andrea and Kyle are going to get married!! Why can’t I get married??!!”

There it was…a glimpse into Aaron’s feelings and into his heart. And there I was, with no words to console him. What could I even have said to make him feel better?

In the following months, Aaron brought up the girlfriend and marriage subject more and more often. He was putting two and two together, and there were some uncomfortable moments.

“Mom,” he said one day, “I want a girlfriend.”

“Oh, Aaron,” I answered. “I understand that, but you don’t really need a girlfriend. Just be happy to be friends.”

“But you were a girlfriend to Dad, right?” he asked.

Oh dear! Busted!!

“Well, yes, I was,” I uncomfortably answered.

“What was it like?” he continued.

“Ummmm,” I struggled, “it was special.”

“I want to be special,” he said.

My heart!! What does a parent do with this side of their special-needs child?! No doctor or medicine or therapy can fill the normal void of my son wanting to be loved in the way that I had just described as being special!

As Andrea and Kyle became engaged and we planned their wedding, Aaron was resentful. He didn’t even try to hide it. And on the day that we told him about their engagement, he went outside and did his thing in the mulch, alone, as he crumbled mulch and I watched him out the window…my heart crumbling, as well.

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Gary and I have tried to be honest with him as he’s asked more than once about why he can’t get married. I mean, could he marry one day? But then we’re reminded of the very answers we give to Aaron when he brings up the subject.

We tell him he needs a job…that he would need to live somewhere else with his wife…be able to pay his bills…that there would be her medical issues and his medical issues…

And we feel mean to tell him these things.

Yet that IS the reality of Aaron’s life. Reality can’t be sugar coated in an effort to make Aaron feel better.

Or in an effort to make us feel better, as well. Letting Aaron marry would bring to our doorstep a host of issues that we do not even want to think about.

On that night last week, after Aaron and I had watched a rather emotional episode of the series we’re watching, instead of hurrying out of his chair he instead started talking.

“Mom,” he began. “I love N, and she says she loves me. When I come in Paradigm, she says hi to me. She wants me to sit beside her, and she holds my hand. That makes me happy. It makes me feel good.”

The sincerity in his voice and his sudden cascade of words stopped me from moving off the couch. His rushing words and his emotion also stopped me from brushing off what he was saying. Instead, I sat there and looked at him as he talked. He continued.

“Ever since first grade,” he said, “I wanted a girlfriend. No one ever wanted to be my girlfriend until N.”

It was hard not to smile, and also hard not to cry. In fact, my eyes did fill with tears, which Aaron really dislikes.

“Are you crying?!” he asked. But when I told him I was, a little, he didn’t even get upset. He just kept talking about N…about how he wanted her to be his girlfriend…and how no one else wanted to be her friend.

His relationship with N is complicated. She is complicated and Aaron is complicated, and there are many issues. N uses Aaron, trying to take his money and his food and all his time. She gets angry, and sometimes makes Aaron cry. Yet Aaron defends her most of the time, particularly when she talks him into giving her his money.

Aaron reminded me of the day that I had recently called Barb about N taking some of his money. Aaron gets very angry when I do that. He said the most amazing thing that night.

“Mom, when you called Barb about N taking my money, you messed up the boyfriend/girlfriend option!”

Where on earth did he come up with that?! And how on earth did I not break down laughing?!

A few weeks ago, as I drove Aaron to Paradigm, this is what he said:

“Mom, N asked me to marry her. On accident, I put it too far and I said yes!”

Again, I was laughing inside but knew that on the outside Aaron needed my understanding. Thankfully, his “putting it too far” did not end up in a commitment of any kind. But sometimes, in his heart, I know he wants to have this taste of a normal life even though he has no idea at all about what it would mean.

But Gary and I know what it would mean, and we know it can’t happen. It makes me a little sadder for Aaron when he does talk about it. Yet I think of the reality of what would happen if we said yes to this grand idea, and I’m jerked back to THAT reality and know that it can’t be a part of Aaron’s life.

God continues to give us grace and to soothe my heart when I hurt for Aaron. And I’m very thankful that He gives us the strength to not “put it too far,” and say yes!!

I’m thankful, too, that God isn’t too far from us in any of this. He knows and understands, and His promise to be near the brokenhearted is always true!

Work, Work,Work!

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

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

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

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

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

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

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

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

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

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

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

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

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

Servant work! Indeed!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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