Patty hesaidwhatks

My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening. I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures. I would rather have heard a seizure, honestly.

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels. I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook. I love sharing the very unique and humorous ways that Aaron speaks. His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word.

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00. He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set. But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer. When Aaron plays a game like this, he has a very hard time stopping it and saving it. He must reach a certain point in the game, and in his mind, before he will turn it off. For over an hour he kept repeating the same phrase, loudly: “I’m coming!!” Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time. We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out.

“Can we watch Bones, Mom?!! Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that. He was in such a tizzy. And he could tell that I was tired and didn’t want to stay up late. His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility.

Mom was mean. Mom was dumb. Mom didn’t care. On and on.

He turned his DVD on. Turned it off. More yelling. Turned it on. Turned it off. Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry. I wasn’t crying, but he didn’t believe me, so he stared and stared at me. And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much. He looked so funny, really, that in my tiredness I did the forbidden…I laughed. Aaron thought I was laughing AT him personally. He erupted and we traveled even further downhill than we already were.

It was a wild hour after that. He was in and out of his bedroom…in and out of bed…in and out of our bedroom. He was calmer talking to Gary…angry talking to me. Say goodnight, Mom…no, don’t say goodnight, Mom. I don’t want your goodnight kiss…OK, I do want your kiss.

He calmed when Gary came upstairs. He let me hug and kiss him goodnight. And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated.

My calmness during the whole episode only seemed to fuel his flames. The realistic, upset words I did say seemed to appeal to him more than soft kindness. So strange how that works. So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors. Seizures are scary and sad. Behaviors are exhausting and often hurtful. People feel sorry for seizures. But behaviors…what do you do with behaviors?

And behaviors leave me feeling like a very unfit special needs mother. I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me. Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort. But my tension was strong, too, and sleep wouldn’t come. My tossing and turning was keeping Gary awake, too, I knew. I would relax and then thoughts would wash over me. I would relax again and Aaron would stir, seeming to be restless as well.

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately. How could I have handled it differently? What should I have said? What should I have NOT said? Guilt for not liking Aaron when he’s out of control. On and on.

What I do know is that God is always there for me. He heard me last night, there in the dark, praying and confessing and praising. He knows my form. He knows that I am human and that I am weak and that I need Him, totally. He knows that I get frustrated and tired, and that I do love Aaron with all my heart. And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy. Some days…and happenings…make it harder than others.

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace.

That’s the kind of parent I need to be with Aaron. Forgiving him…understanding but not condoning…and opening my heart and my arms with love.

I have no superior wisdom or strength. I mess up…I give up…I look up. And there I find God, always understanding and giving me grace.

God’s a good Father to me, his special needs daughter. I need all He gives to me and does for me, for I have nothing of my own. He certainly didn’t choose me for this parenting role because of anything I have to bring to the table. He chose me because…well, I don’t really know. But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest. Which is often.

God loves me, His special needs daughter.

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care.

Aaron’s Bowl of Normal

Walking through the family room the other day, I noticed something red sitting on the end table beside Aaron’s favorite chair. I knew he had left his bowl of Hot Tamales on the table, but there was something else. I stopped to look, and this is what I saw.

Aaron had set aside these two Hot Tamales. This is nothing new, so I knew exactly what it meant. It meant that Aaron realized these two Hot Tamales were a different shape and size than his normal Hot Tamales. To Aaron, they don’t fit into the bowl of regular candy. They are not the norm. They must be separated from the usual candy, sitting there until all his candy is finished, and then thrown away. He will not eat them. They are unacceptable to him.

Our Christmas holiday is still a warm memory to me. However, not every memory with Aaron is warm and fuzzy. Those unusual Hot Tamales help explain our family dynamic perfectly.

Aaron both loves, and somewhat dreads, our Christmas celebration. He loves the anticipation of opening his gifts. He looks forward to time off from his day group…time to be at home relaxing and filling his days with whatever he wants. He likes seeing what food I am making, hoping that some of his favorites are in the mix.

However, Aaron’s autistic mind is also very aware that his structured schedule is about to change. He knows that he will soon need to share his ordered world with Andrea and Kyle…with their three dogs…and with Andrew. He even must share his bathroom, for crying out loud! In his mind, he is already setting aside some of these daily issues much like he does his unacceptable Hot Tamales. They are not the norm, so they are cast off mentally as being unpleasing…yet in this case, necessary.

Aaron in many ways looks forward to our family being together for Christmas, just as he looks forward to eating his candy that is poured into one of his ever-present bowls. But soon comes along those pesky interruptions into his ordered life…interruptions that are very difficult for him to sort and to deal with properly.

Christmas Eve is most often the time for what Andrew calls “Aaron’s Annual Christmas Meltdown.” We say this with a smile when Aaron doesn’t hear us, but we also say it with some dread for what might come.

Two of our best Christmas traditions occur on Christmas Eve. My favorite is the Christmas Eve service at our church. Each year we ask Aaron to come, and each year he turns down our offer. The large crowds…all the talking with strange people…some of the louder music…and having to sit quietly for such a long time…are all very stressful to Aaron. We understand this, and we don’t push the issue. We know better. But each year I’m sad that our picture in front of one of the beautiful Christmas trees does not include our full family.

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When we get home from the Christmas Eve service, our other fun Christmas tradition takes place. Christmas Bingo!! Otherwise known as the usual cause for “Aaron’s Annual Christmas Meltdown.” Our Christmas Bingo is fun and loud and unpredictable. Aaron greatly dislikes loud, unpredictable fun…which to him is NOT fun! This is why Aaron shuns parties of any kind. He says that people act weird at parties. Never mind that on any given day one may hear Aaron clapping or saying outlandish things as he watches a show or scratching himself openly in Wal-Mart. Aaron sees his actions as totally fine, but when Gary acts goofy as he announces each Bingo card, Aaron’s frustrations grow and grow. Add to that our laughter and joking, winning or NOT winning each round, prizes that disappoint…well, Aaron’s bowl of normal is quickly being emptied and he is usually simmering as the game progresses.

This year, Aaron joined us after we had played a couple rounds. He hovered near the table, observing us and seeming to need time to gather his courage to sit down at the table. Aaron usually targets one of the guys, especially Kyle since he is new to our family and Aaron still isn’t sure it’s OK that he married Andrea. He targets Andrew because Aaron has always been somewhat jealous of his brother. And he targets Gary because Gary is Dad, and Dad is acting way too silly.

When Aaron sat down with us to play, we all quietly decided to try to make the game as non-silly as possible. We also decided to be as quiet as possible when announcing that we had a Bingo. However, this plan ultimately made us laugh even more…as quietly as possible but still not quiet enough for Aaron.

But something else was also going on with Aaron. Andrea later said it very well. Aaron knew that things were very funny because we were all laughing, but he couldn’t figure out what the funny things were. There were many comical moments, but none made Aaron laugh. He was focused and intense and struggling very hard to keep from being angry. There was nothing worth laughing about in Aaron’s mind. Instead, he was wondering why we were all laughing at the gifts and at each other’s comments, and as we see every year, his tension was mounting and his fun meter was doing way down.

My heart went out to him as I just watched him sitting on the opposite end of the table from me. He had just won a prize and was so very seriously opening the little box.

He loved getting a Bingo, and I found myself wanting him to win every time. But life isn’t like that, and I knew he needed to once again learn to be a part of our world…loud and puzzling and frustrating and disappointing as it is. He can’t remove the parts of life around him that are not his normal. He must adapt as much as possible, and we must also be allowed to enjoy our family life together with him when we can…when he can.

There are small ways that we have learned to let Aaron be…to not ripple the water unnecessarily. Like when he won a bottle of body wash, but it was ladies body wash. With each other, we would have laughed at this…making fun of the girlie name on the bottle and teasing whichever guy had the misfortune of winning it. But not with Aaron. We just kept quiet about it, watching Aaron stash his prize safely on the floor beside him. And later that night, I found the body wash placed in the shower to be used by him the next morning. I never said a word to him about it, and he happily used it…and smelled very nice!

We pick our battles with Aaron when we can, happy that he actually made it through this Bingo game without an eruption of anger. His anger later spilled out toward me after I made a random comment about forgetting to put the ham cheese ball out to eat, saying that maybe we should start our game all over. That did NOT make him happy…and neither did my hand motions that he copied angrily. He was so done with that evening! All of us were picked out of his normal bowl, trust me!

I was happy that his seizure during the night didn’t ruin his Christmas day. I was happy that he was able to open his presents, though he was heavy-eyed and dreary after the seizure. I was happy that his other seizure later that day was during his nap, and that he didn’t fall down.

And I was especially very happy that our neighbor came over and took our family picture in front of our tree.

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For really, our family isn’t complete without Aaron. He may want to kick us at times out of his normal bowl, but then he does turn around and let us back into his life.

And we do the same with Aaron, over and over and over again. We welcome…we include…we modify…we adjust…we sigh…we go to bed tired – but we do love our Aaron and will always want him in OUR bowls as much as possible.

A Lone Christmas

Early yesterday morning, before the rush of the day started…and despite the fact that Aaron was up early and had already interrupted me a few times…my thoughts turned to Mary and Joseph. I tried to brush away the typical nativity scenes that are so much a part of this season. I tried to imagine what the reality was for this very young teenaged couple on the night that their special baby was born.

The word that kept coming to mind was the word “alone.” I do believe that God’s presence was with them…that they truly knew they were a part of God’s miracle in bringing His Son into the world…and that they were fully committed to His plan for their lives. But as far as we know, on that night during the birth of Jesus, they were alone. There may have been a midwife called, but there is no record that any of Mary or Joseph’s family was with them.

A normal birth in their small town of Nazareth would certainly have involved several women who would stand watch with Mary, helping her through the birthing process and calming her fears. The first birthing experience for any woman is often full of questions and an element of fear. Older women, especially her mother, would have been a great comfort to Mary. And a midwife would have assisted in the birth in many ways and would have allayed fears with her expertise about unexpected complications.

But God had brought Mary and Joseph far from their hometown of Nazareth during this most important time. And there they were, in a cave, far from family and familiarity, giving birth to a tiny baby…God’s Son. Alone.

Then I remembered something. I remembered our little snowmen perched on the ledge between our kitchen and family room, where they sit every Christmas. Each snowman holds a letter, and when put together they spell the word “Noel.” But a couple weeks ago, Aaron rushed to find me. He bent over, laughing while he rubbed his hands together…a sure sign of great delight.

“MOM!!!” he burst out. “Come look at what I did!!”

So, I followed him to that little ledge, where he pointed out with huge excitement the fact that he had rearranged the little snowmen. Here is what they now spelled:

Lone.

I haven’t even changed the snowmen back to “Noel.” I honestly keep forgetting to do that, or to have Aaron fix them. But now I’m glad I didn’t change them. I’m glad for this reminder of where God often takes us when He puts us on the paths He has chosen for us.

We don’t always consider the price that Mary and Joseph probably paid for their obedience to God. Imagine the hushed whispers when word got out that Mary was pregnant. Unmarried Mary. Imagine the looks she and Joseph got…the insinuations…the assumptions. The suspicion surrounding them, and their story, probably lasted their entire lives.

I wonder how their situation…their obedience to God…affected their relationships to both their parents and siblings? Then Jesus was born, while they were alone and far from home, and history shows that Mary and Joseph must have stayed in Bethlehem. Several years later God sent them to Egypt for protection from Herod. Did it look to some like they were running from their secret?

When they returned to Nazareth some years later, did they fit in to their families again? Were relationships strained? Did the rumors continue?

We don’t know for sure, but we can imagine…in that culture…that life wasn’t easy for Mary and Joseph.

When the angel first told Mary that she would become pregnant with God’s Son, I wonder if these thoughts crowded into her mind? The cost to her reputation and her dignity would be huge. But Mary’s response was: “Behold, the bond slave of the Lord; may it be done to me according to your word.”

I look at this story, and the nativity scene, in a very different way when I really stop to ponder these things…ponder to some degree as Mary did in her heart.

Each of us who follow Christ are on the path of His choosing for us. Often the way that He leads us is unpleasant and troubling, full of fears. But those very circumstances are what grow us and cause us to fall on God in faith.

The reality of our various situations isn’t all sunshine and roses. It’s the daily pain and sadness and worry, though, that draw us to God like nothing else does. In the hard times may we be like Mary and Joseph.

“May it be done to me according to Your word.”

Then just watch God’s peace fill your heart and His grace give you all you need to face the particular plan God has for you.

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What Mountain?

I heard it through the baby monitor a week ago yesterday…the awful sound of Aaron going into a seizure. It was early, early in the morning – the time that we still call night. I never do get used to that sound. My heart still jumps as I am awakened and then hurry into his room. As seizures go, it was not a long one. Hard, but not long. The scene was repeated a few hours later, which is nothing unusual. Only two seizures, though, which is a blessing, and which is rather unusual. Most often his clusters of seizures involve three or more. Yet we have learned over the years that having only one or two seizures means he might have one or two more during the day.

Gary and I both stayed home from church that Sunday due not only to Aaron’s seizures but also because of a strong snowstorm with howling winds that was blowing outside. This storm also explained the seizures, as I have definitely linked many of Aaron’s seizures to low fronts moving through our Kansas atmosphere.

Aaron was fine all day. He stayed busy, and he also napped some, but there was no more seizure activity. That night, he and I watched a television program. Afterwards, we were in the kitchen putting snacks away and getting ready to go upstairs where Aaron’s nighttime routine would continue. I had my back to Aaron as I readied the coffeepot for the morning.

“I feel like I might have a seizure,” I heard Aaron say. But he says this fairly often, and rarely does he have a seizure at that time. I was getting ready to reply when I heard a noise. I whirled around to see Aaron’s arms in the air and his face distorting in the familiar way it does when a seizure begins. It was sudden and so unexpected! Before I could take a couple steps and reach him, he fell backwards onto the tile floor…just like a stiff, falling tree.

The sound of his head hitting the floor was sickening. I screamed for Gary, who came running from downstairs. I was terrified…more terrified than I remember being since his very first awful seizure when he was seven years old. Our 34 year-old son was my baby at that moment, and I was distraught. Aaron doesn’t like crying at all, especially my crying, so he would have been very unhappy if he had seen me at that point.

Aaron will often rally rather quickly from these seizures, so we waited to see if that would happen. Sure enough, before long, his eyes opened. Soon he was responding to our comments as he became more focused, and not long after that he was talking some and able to sit up. We watched and waited, thankful to see him return to normal with no apparent damage done other than a knot on the back of his head.

I had a hard time going to sleep that night. I kept seeing him fall and then hearing the sound of his head hitting the floor. Finally, I slept…but fitfully…playing the awful scene over and over all night long. Aaron slept well and for that I was thankful.

Not only was this seizure itself of great concern, but what it might signal was also very disturbing to us. Aaron had a series of falling seizures back in the spring and early summer, sustaining some injuries. Are those falling seizures returning now? And if they are, then why? Oh, the brain is so complex! If only we could map its intricacies and understand its workings! But no doctor or researcher has ever been able to uncover all the secrets of what God has created in these most complicated brains of ours.

Gary and I had relaxed a lot since Aaron’s last falling seizure a few months ago. But now that familiar fear was filling my heart again. If left unchecked, I knew fear’s icy fingers would replace the warmth of God’s promises and plans on which He wanted me to focus.

The next morning, I sat as usual at my quiet time desk, asking God as I always do to speak to me the words He wanted me to hear on this day. I looked down at my current book in the Bible that I was reading, and still am reading. Zechariah. Yeah, I know. What does God have for me in an obscure minor prophet’s writings? I mean, Philippians or James I could understand, and would look forward to multiple encouragements. But Zechariah?

Yet one thing I have learned over the years is that God is alive all through His word. He meets me in my need in every single part of scripture…not just in the more recognizable, pertaining verses but even in the less known. In this case, the MUCH less known. But this aspect of discovery in the Bible is so uplifting to me! It’s like finding a hidden Christmas present under the tree and opening it to discover the most amazing gift ever!

So, on that morning I began reading where I had left off the day before. The people of Israel were very discouraged as they faced the monumental task of rebuilding the temple in their ravaged homeland. Obstacles were all around them and they could see no human means to finishing the job. Dangers threatened their lives. Nothing was as they hoped it would be.

But…

God spoke. “Not by might, nor by power, but by my Spirit…”

The people didn’t have the might. The people didn’t have the power. All that God wanted to accomplish would come by Him…by His Spirit.

And then this verse, this phrase, is what jumped out at me on that morning.

“What are you, O great mountain? Before Zerubbabel you will become a plain…” (Zechariah 4:7)

Have you ever felt like your worries and your fears and your problems are a mountain…a mountain that you can’t cross? The concern over Aaron’s dangerous seizures was my large mountain that morning. Scary. Foreboding. Impassable.

But God leaned down to me there at my desk and had me read exactly what He wanted me to read. It was no accident that these were the verses I was on in my Bible study book. God’s amazing grace washed over me. Not by my might…not by my power…but by His Spirit.

And that’s why I can stand squarely in the shadow of my mountain and say, “What mountain?!”

God told Jeremiah, “Behold, I am the Lord, the God of all flesh; is anything too difficult for Me?”

Does it mean that Aaron won’t have another falling seizure? No. In fact, the next night he did have another one. I was close enough to break his fall this time, but it was still very scary. But all that evening I kept thinking, “What mountain?”

God wants me to see, even in the hard times, that He will give me all the might and strength I need. He will also take care of Aaron in the way He knows is best. I have to trust Him for that.

I want this mountain to be what I allow God to use to strengthen my faith…deepen my walk with Him…and confirm my trust in His sovereign plan for me, for Gary, and for our Aaron.

Instead of seeing a mountain, I want to see God over and above it all. To know that He’s in control. To be still and know that He is God.

Oh, I’ll still be upset with the seizures if they keep coming. But instead of being out of control, I want to remember the One Who is IN control.

What mountain?

Indeed!

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A Thankful Moment

May we each show our thankfulness today in all the ways that we can. HAPPY THANKSGIVING!

He Said What?!

I was winding down a long day of cooking on Tuesday night when Aaron came bounding into the kitchen. “Mom!” he said. “Will you print off some cheat codes for me on your computer?”

Now the last thing I wanted to do at that point was go down to my computer and start looking up cheat codes with Aaron. So I pretty well told him that. But Aaron doesn’t take no for an answer very easily when he’s so set on something as important as cheat codes for his Star Wars Legos game. I know that about Aaron, and therefore I was soon in my computer chair with Aaron hovering over my shoulder. He instructed me on what to type in order to arrive at the correct site. We printed a page but it wasn’t right, so we printed again and thought it was right…..but soon I could see that…

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God In the Ugly

It’s a cold, cloudy, and blustery day here in Kansas. I was doing Gary duty with our Great Dane this morning. Gary is out of town right now, so I was the one shivering out on the back walk while our elderly Jackson took his jolly time doing his morning business. Why must he sniff every single leaf??!!

I looked over at our Rose of Sharon bushes, standing there in an ugly brown row. I could hear their crunchy dead pods brushing together in the cold wind. There was nothing inviting there, that’s for sure!

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But something did catch my eye as I routinely scanned the dead scene. I walked over to further examine a cluster of branches at the end of the row. It was what I thought it might be. A bird’s nest, all tucked in securely among the brown stalks.

As I looked closer, I saw that this bird had repurposed some plastic to help line her nest. There were little dead leaves inside the nest that had blown there in our Kansas winds. I have no idea how old this nest is, or what kind of bird built it, but there it lay nestled safely in the branches.

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I immediately was drawn to how God has told us that He cares for the birds of the air. He created them, He feeds them, and He knows when even one has fallen.

He also tells us that if He cares for the little birds, how much more does He care for His children?

I pondered all this as I hurried inside with Jackson, who was finally done with his doings. I thought about why I was able to see this nest. I could see it because the once pretty, green Rose of Sharon bushes were now bare of their beauty.

I could see a picture of God’s amazing care because all the beauty, for this particular season, has been stripped away.

How like our lives at times!

This is the scene that I far prefer.

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I love the lush green growth, and all the beautiful blooms. And in my life, I love it when things are going well. I like it when life is pleasant; when I feel like prayers are being answered the way I want them to be; when I’m at peace.

But we all know that life isn’t that way…not all the time. Yet when times are tough…when my life feels like my winter Rose of Sharon, all dead and dreary…is when something amazing happens.

It’s in the empty times, when all the goodness seems gone, that I can more clearly see the goodness of God. I can plainly see His care without the distractions of all the fun and pretty things around me.

Sometimes I must step nearer and look closer, but there I will see God and His loving care in my life. God isn’t hidden by all the luster that I sometimes have, and honestly desire to have.

“As for me,” the Psalmist said, “I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer…” (Psalm 40:17)

If things are pretty all the time, I won’t always give as much thought to the Lord’s thought for me. But when life is rough and even feels empty, I can better see His thoughts for me. I see the form that those thoughts take…the loving care He has for me…the help He brings to me…how he strongly delivers me.

Sometimes seeing God happens best when I’m rid of the most.

I’m loving the view of this little nest today, unhindered by eye-catching distractions.

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And I’m loving that I have a Heavenly Father who is thinking of me today and using such simple means to show me how truly awesome He really is!

All I Need to Know

God promises to relieve my burden, even if the situation remains.

He Said What?!

He threw the glass across the kitchen this morning. At least it was a plastic glass……and at least it was empty. So began our morning. Aaron got up just in time to go out to Gary’s truck in the driveway and hug him goodbye. He was happy and I was hopeful. Yesterday was up and down with Aaron. He didn’t like me for awhile but then settled down and we had a nice evening. We watched Wheel of Fortune, and played Skip-Bo later while eating strawberries.

Simple pleasures, but not always such a simple life with Aaron.

This morning as we walked back into the house after his goodbye hug for dad, he decided that Mom was the bad guy again. He told me he wasn’t going to go to Paradigm today, and on and on.

Oh, the complexities of his mind! The challenges of autism! Physical issues I can…

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Remember When?

Aaron loves looking at a particular picture of me and Gary, taken back in the day. WAYYYY back in the day, to be clear. This picture was taken at Gary’s Army Flight School Banquet upon his graduation.

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Aaron has always said that he thought this photo was of our wedding, so I am often correcting him about that as I repeat over and over that this was taken four years after we were married. Aaron doesn’t sweat the details, though, and he continues to tell us…and others…that here are Mom and Dad at their wedding.

But there is another detail that Aaron loves to share the MOST as he either talks about this picture or gets to show it to people who come to see us in our home.

“In her wedding picture,” Aaron begins (and I know exactly what is coming!), “Mom used to be skinny!!”

Emphasis on “USED to be skinny.”

As in I was…in the past…not the present…in the FAR distant past…skinny.

Aaron will randomly tell this bit of news to anyone who has ears, including people who barely know me. He will share it within the context of any conversation, out of the blue, ignoring people’s curious looks and my rolling eyes in my red face.

Yes, Aaron, I USED to be skinny. Those WERE the good old days.

I’m able to laugh as I tell this story, even as I constantly try to keep Aaron FROM telling it in order to hopefully teach him some manners or some tact. Yet Aaron’s focus on the past…on MY past…has also taught me an important truth.

The prophet, Haggai, helped with this as well. I’ll explain.

Haggai was the first prophet that was heard in Israel after the Babylonian exile. The Israelites had returned to Jerusalem and Haggai encouraged them to finish building the temple. Fifteen years had passed since any work had been done on the temple. God promised to be with them as the people agreed to once again build God’s house.

Yet later, as they stood at the site of the temple, God knew that the people were very discouraged. He also knew why they were so down in their spirits. So, God spoke to the leaders and to the people through Haggai.

Haggai 2:3 – “Who of you is left who saw this house in its former glory? How does it look to you now? Does it not seem to you like nothing?”

God, through His prophet, just cut to the chase. He hit the nail on the head as He revealed openly what He knew they were thinking. And what they were thinking was that compared to years ago, this beginning of a new temple looked dismal and ugly. In fact, the Israelites…especially the older ones who remembered the former glory of the old temple…knew that the new temple they would build would in no way compare to the beauty of the past temple.

Who could help but be discouraged as they stood there remembering the glory that used to be, but would not fully be again?

But God didn’t just leave it there. He continued to speak, telling the leaders to be strong, and ended by saying:

Haggai 2:4-5 – “Be strong, all you people of the land – declares the Lord – and work, for I am with you, declares the Lord almighty. This is what I covenanted with you when you came out of Egypt, and my Spirit remains among you. Do not fear!”

I’ll tell you that there are times and there are ways in which I am much like these Israelite Jews as they looked at their current circumstances and compared them to what used to be. And for me it goes WAY beyond remembering my skinny days!

Ten years ago, God set Gary and I on a path of great hurt and loss. The details are not what matter. What matters is that God was surely with us each step of the way. He did indeed tell us to keep working for Him in very difficult circumstances, just as He did to Israel. He told us to be strong even when we were tired on every level.

What kept us going? The two promises that God gave to Israel were ours as well. God said, “I am with you…and my Spirit remains among you.” I can promise you that God kept His promises to us. His strength, His peace, His Spirit, was always present and enabling in our lives. His Word was powerful!

I love what John Mackay says about God being with us: “This is what distinguishes the advice of the world, ‘Be strong. I know you’ve got it in you,’ from the counsel of Scripture which recognizes that we have NOT got it in us, but that God’s presence with us will make all the difference.”

Circumstances can get very ugly sometimes, but I am not to focus on what’s around me. I am to focus on God and on the fact that He is with me. He will not fail me. He will not desert me to my enemies or to my runaway thoughts.

God also gave Israel a simple three-word command.

“Do not fear,” God said.

Again, John Mackay: “The Lord’s faithfulness in the past and the present is the basis for future encouragement. It is not the appearance of the building, but the presence of his enabling Spirit that will make the crucial difference.”

Not the appearance of the building. Not my surroundings, but rather the God Who surrounds me with His protection in every way I need.

So, what’s your “Remember When?”

Remember when: You were loved. You weren’t alone. You were important to that group. You were included.

Remember when: You had a job you loved. You had the money you needed. You made a difference.

Remember when: You had your health. You had your spouse. You had your children close.

Remember when: You sang. You taught. You were a part. You mattered.

Remember when: You had your parents. You had a family. You laughed. You talked.

The list is endless, isn’t it? Life changes. Sometimes suddenly…other times, slowly. But change is inevitable for all of us.

What doesn’t ever change is God. His presence is with His children, steady and stable, always constant. He’s the same yesterday, today, and forever.

When the past tries to capture my attention, I know I must look to today…to what God has for me today…to Who He is today…and to His promises that are true…TODAY!

And I can declare from experience that out of our deepest pain of yesterday will come our most beautiful usefulness TODAY!

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Aaron and The Wedding

Two weeks ago we had…a WEDDING!!! Our first wedding!!!

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Our daughter, Andrea, was wed to Kyle Kester in a perfectly beautiful outdoor ceremony at the Texas home of Kyle’s grandparents. It had rained a lot there, even the morning of the wedding; but God told all the weather forecasters that He was sorry to spoil their forecast…that He had lots of people praying for no rain, so no rain it was.

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It was a small wedding, the way Andrea and Kyle wanted it, and was full of close friends and family who helped with everything and shared in our joy. Even my brother, John, married them…and his wife, Jeanie, was the coordinator.

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Family. When all is said and done, is there anything or anyone more precious to us than family? And especially at an event as special as a wedding, family is there. The pictures are taken, the hugs shared, the laughter abounding. Family love is everywhere during a wedding.

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Yet when all the wedding photographs are finally ours to see and enjoy, we will look at our family wedding picture and have one missing member.

Aaron.

Aaron could have been there…and yet he couldn’t. Let me go back in time and explain.

Kyle, from the first time he walked into our house nearly three years ago, was a natural with Aaron. We love that about Kyle. He is patient…treats Aaron as an equal…knows how to talk to Aaron…and knows when to redirect Aaron more than most people do at this stage in their relationship.

Aaron has a very close relationship with Andrea. Aaron is the older by 18 months, but he still sees Andrea in somewhat of a mother role in his life. He loves to talk to her on the phone, almost always about himself, but still he wants to tell her everything about his current movie or game or activity.

But two things happened when Kyle came into this perfect picture. The first thing is that, to Aaron, Kyle was taking Andrea away from him.

“I still want Andrea to be my sister!” Aaron exclaimed when he realized that Kyle just might be here to stay. We explained and explained, over and over, that nothing would change…that Andrea would still be his sister, forever…and that she would still come to visit, and we could go visit her. And that if they got married, he would gain a wonderful brother!

The second thing that happened to Aaron was the process of figuring out just who Kyle would be in our family, and particularly who Kyle would be to him…to Aaron. Aaron struggles with just who is who in family relationships. He may meet a couple and later say that the man is the woman’s dad, not her husband. Uncles, aunts, and cousins are completely impossible for him to understand. And brother-in-law? Forget it!!

Aaron wants to forget in more ways than one!

“I don’t NEED a grand-brother!!!” he blurted out one day as he expressed disapproval over the upcoming marriage.

We didn’t even tell him that a “grand-brother” isn’t a thing.

Many of Aaron’s thoughts about all this marriage business, and the dynamic driving his thoughts, will hopefully be the stuff of another blog one day. Back to our decision now about Aaron and him coming to the wedding…

Andrea called late one Saturday night last December with the very happy news that this had happened:

Kyle and Andrea’s engagement was not unexpected at all, but the reality of it was cause for so much joy. We were happy, happy, happy!!

Yet with Aaron, we were slow to tell him the great news. We knew that he would not be happy, happy, happy. The next day, on Sunday afternoon, we told him what he suspected to be true…that Andrea and Kyle were engaged to be married.

Not long after, I looked out the window and this is what I saw.

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Aaron was crunching up mulch. This is his long-standing way of relaxing…of unwinding…of thinking…of dealing with stress.

My heart just went out to him as I looked at him sitting there, alone with his mulch and his thoughts. How difficult it was, and would continue to be, for him to adjust to this huge change looming in his relationship with Andrea.

I opened that door of my heart and I cried. I cried off and on that whole afternoon…some happy tears for the engagement…some sad tears for the reality that is always Aaron.

My thoughts had already, for months, turned to how we would fit Aaron into a wedding. Initially, I tried to figure out ways that we could make it work, having a wedding down in Texas where we wouldn’t have someone who could help us with Aaron. I knew that Kyle’s sweet family would do whatever they could to help us. But still…

A couple weeks after the engagement, everyone was home for Christmas. We have such a fun time all together, laughing and eating and telling stories as we catch up. But Aaron doesn’t have such a fun time. He does for awhile, but then reality hits him. He is not the center of our time and attention. He must vie for his place, take his turn talking, and eventually come to the dawning conclusion that our interest in aliens and nanomites and volcanoes and outer space is waning after several hours…and most definitely after several days.

Then there is all the hilarity as we laugh and tease and hug. The cherry on top is our annual Christmas Eve Bingo game, with gifts to be won or to be stolen…loud and long…and miserable for Aaron. He does not like parties…he does not like emotion, including too much laughter…he does not like Dad being goofy as he directs the game…and he does NOT like having his gifts stolen.

It inevitably leads to what Andrew calls, “Aaron’s Annual Christmas Meltdown.”

And it is not a tradition that we treasure.

But this is who Aaron is, down to his core. He can’t help it and he can’t change it…and certainly neither can we.

So when we were all here this past Christmas, while Aaron was occupied in his room and with Andrea’s beautiful diamond sparkling on her finger, we had a family wedding talk. Specifically we had a “how do we fit Aaron into a family wedding” talk. And the consensus was unanimous: Aaron would not fit into a family wedding.

It sounds harsh, maybe. Unbending on our part. Heartless.

But you see, Aaron doesn’t see things like we do. He has no emotional interest in family events like we do. What matters to Aaron…is Aaron. I say this a lot, but it’s because it’s totally true. Aaron wouldn’t care about a wedding, on many levels, just as he never cared about family funerals or celebrations or anything else that was full of other’s emotions.

Emotions drive Aaron nuts. So does having his routine disrupted…sharing attention with others…sleeping in strange places…and having to be around lots of noisy people who are not aliens. He would love it if they were aliens, but they are not. Just another bummer!

And what if Aaron was having a bad seizure day on the wedding day? That would have been just awful.

So our only reason for having Aaron with us would be FOR us. For us to say that Aaron was there. For us to have the whole family together. For us to have the photos taken (which Aaron would HATE, by the way).

Andrea and Kyle’s wedding day was a day for them, and for both our families. A day to relish each other and to enjoy every sweet moment to the fullest. Aaron, honestly, would have made it impossible to do so.

Therefore, Aaron stayed back in Kansas. Abigail “watched over” him, as Aaron says. She and her fiancé Corey, and Abigail’s parents, David and Melissa, had tons of fun with Aaron. At least I like to think it was tons of fun for them. Ha! It certainly was fun for Aaron.

And let’s not forget Gracie and Cosmo, who became Aaron’s furry friends. He loved every minute of doggie licks and snuggles!

We all live life wanting no regrets. But when you have a child with special needs, especially behavioral issues, you sometimes must shift around your definition of “regrets.” We do regret that Aaron couldn’t be at the wedding, but we don’t regret our wise decision to not make him attend an event that he would truly detest.

Our special Aaron definitely makes our life unique and forces us to sometimes make very difficult decisions. Often the best decision for Aaron, though, is the hardest decision for us to make, but Aaron’s needs and his happiness is what must come first.

And trust me, we’ve all learned that lesson the hard way over the years…more times than I can say.

Now the holidays are right around the corner, and we’re about to see how Aaron handles his new…

GRAND-BROTHER!!!

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The Rat

It all started one recent night when our almost-broken DVD player became the totally-broken DVD player. Aaron and I were watching the next Blue Bloods show that was in Aaron’s rigid schedule for the evening. Aaron kindly paused the program while I went into the kitchen. Something about that pause became the something that pushed our ailing DVD player into its grave. Even Gary, our go-to he-can-fix-everything guy, came but could not fix. And as I watched Aaron’s frustrated reaction, I rightly guessed that he would also be very difficult to fix that night.

I was very correct on that one.

There are times when Aaron handles life’s interruptions of his routine with amazing calm and grace. That night was not one of those times.

I didn’t help, either. When Aaron became more belligerent, I became more frustrated. I don’t do end-of-the-day meltdowns very well, especially as I get older. I finally told Aaron not to be a bully. But I didn’t end there. I also told him not to be a bully brat. I thought it had a nice ring to it, you know.

Aaron did not think it had a nice anything.

Now we not only had to go to bed without finishing our Blue Bloods show, and knowing that the DVD player was dead, but we also had to walk up our stairs for our goodnight routine harboring anger. I could have made amends and gone right to bed with no problem.

Aaron could not.

And so began an age-old bedtime dance that we hadn’t done together in a long time. It basically consisted of Aaron refusing to do what is normally done and insisting on doing what is unacceptable.

His angry comments included:

“I am NOT helping put the oil in the diffuser!”

“I am NOT taking my medicine oil!”

“I am NOT saying goodnight to you!”

“I am NOT going to bed!”

“I am NOT letting you kiss me goodnight!”

“I am NOT a bully brat!”

I stayed as calm and flat as I could be in my reactions as I went about my own bedtime routine. Aaron continued his fuming by going into his room and closing his door, only to open it seconds later. He would stomp up the hall and come into my room, hurling another angry comment at me. One time he closed his door normally, but immediately reopened it so that he could slam it shut the second time. I had to smile at that one.

But I wasn’t smiling at any of the rest, for sure. I was sorry it had come to this…I was very tired…and I was totally aware that Aaron’s outrage could continue for some time. Therefore, I just went to bed, pulling my covers up and acting as if everything was normal. Gary had not come upstairs yet, so I left my door open.

Sure enough, Aaron clomped up the hall again and came into my bedroom. He didn’t even seem to blink as he saw me in bed and so changed his direction, standing on Gary’s side of the bed. He glared down at me under the covers and continued his verbal barrage. Then he was off, slamming his bedroom door before soon reopening it, and repeating the same action again and again. In my bedroom, hovering over the bed as he angrily talked, and off again. I don’t even know how many times this occurred.

Then all of a sudden, the next time Aaron hurried to my room to glower at me, he didn’t. He didn’t hover and glower, but instead he sat on the bed beside me. He started rubbing his hands together and then he said, “Mom, do you know what Nanomites are?”

Really. Nanomites.

And just as seriously as I possibly could, with no hint of surprise or laughter or tiredness, I told him that I did not know what Nanomites are. There we were, in the dim light, talking ever so diligently about Nanomites. We didn’t talk about our anger…our hurt…our frustration with each other…our disappointment in the dead DVD player…or our needed apologies. We talked about Nanomites.

And all was well.

Aaron went back to his bedroom. I stayed in bed, waiting. Soon he was headed back up the hall, but this time he came around to my side of the bed.

“Here Mom,” he said. “I want you to have this.”

A couple days earlier, I had taken Aaron to Dollar Tree. You would have thought I had let him enter heaven for a few minutes. He bounced from aisle to aisle, SO excited by his many finds, but definitely the MOST excited by this big, plastic, long-tailed, red-eyed rat!

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I rolled over in bed that night, and there on my night stand was that long-tailed, red-eyed rat. I knew as sure as ever, then, that things were right with me and Aaron. He had given me what at that moment was most precious to him…his black, plastic rat.

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He laughed and bent over as he rubbed his hands together…a sign of his pure joy. And I thanked him. I thanked him as sincerely as if he had placed a huge vase of roses on my night stand.

Aaron wanted me to come and say goodnight in the way we always do, so I did. Then as I was in my bathroom right after that, I heard Aaron once again walk up the hall. He knocked on the bathroom door, and when I answered he said, “Mom, I’m sorry.”

“I’m sorry, too, Aaron,” I replied. “I love you.”

“I love you,” he mumbled as he hurried off and back to bed.

I kept that ugly plastic rat on my night stand for a couple days. It reminded me of so much. It was an unusual picture of my relationship not only with Aaron, but also with God.

How many times have I been angry with God over a problem or a situation in my life? Maybe not even full-blown anger but frustrated and not trusting Him totally. How many times have I held onto hurt, or worry, or fear, or whatever else it may be that I want to harbor close to me. Things or people or events that I don’t want to relinquish to God?

All the going back and forth with God doesn’t accomplish a single thing. It’s only when I yield to Him and to His control in my life, tell Him I’m sorry if I need to do so, and then give Him my thing that to me is precious…that I want to keep and coddle…only then will I have true peace. Also, only then will I have open communication and sweet fellowship with God again. Only then will I see what’s on the new path upon which He has set my feet.

Who knew what that silly red-eyed black plastic rat would teach me?

Leave it to Aaron…and to God…to take the bad times and make them full of good.

	Patty hesaidwhatks on Being Aaron’s Mother
	Patty hesaidwhatks on Being Aaron’s Mother
	Patty hesaidwhatks on Being Aaron’s Mother
	Sharon Howell on Being Aaron’s Mother
	DONNA G MADDOX on Being Aaron’s Mother