Grace – He Said What?!

The UNhappy Uncle Aaron

Well, it’s time for another Uncle Aaron update. This is one that I have not wanted to make. You can probably tell why from the title.

Before I begin, let me say once again that the reason I write this blog is not to just tell funny or heartwarming Aaron stories. I began this blog years ago as an effort to educate people about special needs, autism and epilepsy in particular. Especially the autism part that makes Aaron so very amazing and unique.

But there is another side as well…a side of Aaron that has a hugely difficult if not impossible time adapting to change. Add to that issue the reality that Aaron is the center of Aaron’s world. He gauges almost everything in his life on how it will affect him. He has a heart as big as all outdoors in one moment, but in the next he might be having anxiety or a meltdown over something that isn’t going as he wants.

Our little grandson, Ryker, was born on December 21. Now Aaron was Uncle Aaron for REAL! But when we showed Aaron pictures, he backed away as if Ryker might reach out and slap him. Aaron was nervous and acted like he really didn’t care about our new family member. We knew then we needed to tread lightly as Aaron adjusted.

But look at Aaron’s smile when he opened this Christmas gift. We were hopeful.

I flew to meet Ryker a couple weeks after he was born.

Five days later, Gary and Aaron were flying in for a couple days. But the morning they were to leave, Aaron had a full-blown meltdown. The day before had also been rough.

To top it off, the flight was delayed that morning. Making the connection in Denver was doubtful. A very upset Aaron having to wait a long time for an uncertain flight in a strange airport far from home…ummm, I don’t think so.

Gary and I knew we needed to cancel the trip. The relief in Gary’s voice was palpable and I totally understood.

Aaron’s voice over the phone was thick with emotion and tears. After Gary cancelled the flight, Aaron was filled with guilt over what he had caused. He also worried about our reactions, and knew he should apologize. He was pretty pathetic. Here are Gary’s words in a text:

“He is 180 the other way now. Walking him back from his sorrow is almost as difficult as getting him out of his anger. Constant sniffles, watery eyes and suggestions in addition to the ‘I’ll go…I promised Mom and I promised Andrea’ there is ‘Can we get another airplane…can we drive, can we go tomorrow…dad, I’ll go.’ I feel like I just took a long trip!”

Gary continued: “He has said several times, ‘But I promised Andrea,’ and ‘I need to say I’m sorry.’ So I’ve said that we’ll call her and apologize. He walks to the phone and pauses, then says he can’t. It’s too emotional for him, I think.”

Down in Texas, I was full of both anger toward Aaron and sorrow for Gary, whom I knew should be there to meet his first grandchild. This picture should have included Gary.

It was good to talk to Gary, to Andrea and Kyle, and to have wise input from family and friends.

But most of all, the turmoil I felt was relieved by stepping back in the quietness two mornings later and reading scripture as I held precious Ryker. I read Psalm 62: “With You is unfailing love.”

How can I not love Aaron since God loves me in my stubbornness?

How can I not extend to Aaron the grace that God has extended to me? It’s honestly easier to accept God’s grace to me than to give that same grace to Aaron at times like this.

And like Gary also said: “I often wonder what God sees when He looks down at me? When I do not do what He would have me do or I don’t do what I should do, does He look at me like I look at Aaron?”

So, here we are. I wish I could report that Aaron has turned around and has decided to love and accept Ryker. But that hasn’t happened yet.

My second night home, this past Saturday, we had a particularly rough night with Aaron. There he was, sitting up in his bed, crying with brokenness and saying that he was afraid we would only love Ryker and not him. Gary and I assuring Aaron of our forever love for him while fighting our exhaustion and frustration.

Andrea is right when she said the next day that Aaron is just like a little sibling when a new baby comes into the home and the older child expresses jealousy. Aaron has no filters and makes no attempt to hide his feelings.

But here’s the thing and it goes back to autism.

Aaron CAN’T filter or hide what is going on with him right now. He is literally unable to do that.

Out it all comes and we are left to deal with it.

Sorry this is so long. Trust me, I could say a lot more but I’ll hush now and say thank you to each of you who have read this volume.

And a special thank you to those of you who have been praying for Aaron and for us. Please don’t stop. We need much wisdom and love.

Before I go, I just HAVE to share one more picture of our precious little grandson. It’s what a Gramoo does, right? 😊

The Flip Side

I’m old enough to remember 45 rpm records. On one side there was the recording of a major hit, usually a #1 song. But then there was the flip side. The song on that side wasn’t known well or at all, usually, and wasn’t talked about nearly as much as the other popular song. Everyone wanted to listen to and talk about the fun, well-known song.

I started writing about Aaron and our life with him over 10 years ago. My desire was, and still is, to show the amazing way that Aaron thinks and especially speaks. I wanted others to see the absolutely unique and often hilarious way that Aaron expresses himself in order to gain an appreciation for all those with autism. I love sharing our life with Aaron, especially the laughter and the wonder that he brings to us.

Yet there is a flip side, just like those 45 rpm records. I have written about it many times over the years but don’t want to focus on the negative. Just like the popular #1 song, it’s fun to hear the funny side of our life. But that flip side is just as much a part of Aaron as the other preferred side.

Yesterday morning the song on the flip side was playing loud and clear at our house. I didn’t turn Aaron’s record over. Believe me, I far prefer that first side! But turn over it did!

For some background, most autistic persons have obsessions that they have a hard time…or totally cannot…control. Some obsessions seem to be permanent, and others might come and go.

One cannot tell an autistic OCD person to “just get over it” when he is obsessing over his obsession. I may as well tell one of Aaron’s friends in a wheelchair to just climb up our stairs. It’s not going to happen. And neither will Aaron “just get over” the angst that he experiences when one of his obsessions becomes disrupted.

During the past two years, a staff member at Aaron’s day group has taken him to Quik Trip to buy whatever he wants to eat. It has become THE highlight of Aaron’s day. He is completely fixated on this fun, simple outing. Often some of his friends go as well, which makes it even more fun for Aaron.

So, there is the obsession.

Now for the disruption. A meeting.

Meetings to discuss Aaron’s services, plans, health, etc., are a necessary part of every year.

Aaron hates meetings.

The only meeting he likes is the one with his case manager because we gather at Carlos O’Kelly’s for lunch. Aaron cares not about one word that is said at the meeting. He is too busy eating yummy food and trying to monopolize the conversation.

I had told Aaron that we were having a zoom conference on Wednesday morning at his day group. I told him it wouldn’t last long and that he wouldn’t even need to be present for the entire call.

But on that morning, nothing mattered but Quik Trip. He was super angry before he even got out of bed. Nothing I said helped him. He was sure that QT was out of the question…sure that this dumb meeting was going to keep him from QT…positive that his day was completely ruined with no QT…very angry that he had promised Myra she could go to QT but now it wouldn’t happen…what would Antoine think about not taking Aaron to QT…

On and on and on he went, accelerating into yelling. He broke his closet door. He hated this meeting. He hated me.

Then he cried. If Aaron cries, he is genuinely and deeply upset.

I texted Barb at Paradigm, who can calm Aaron like no other. She facetimed with Aaron, and he started settling.

As I fixed my hair a short time later, Aaron walked in the bathroom, fresh tears in his eyes. In a voice thick with emotion and with total sincerity, he said, “Mom, I’m sorry.”

Then tears filled my own eyes. I was spent but I was so touched at his apology, especially since I had not asked for one.

I gave him a hug, which he allowed to last for maybe three seconds before he squirmed out of it. 😊

So why am I telling you all this?

It’s not because I like talking about Aaron’s flip side. But this is our reality, especially Aaron’s reality.

And the reality for so many other families that I know.

Seizures are hard. Other health issues are hard.

But behaviors…they are in many ways the hardest. What a toll they take on the Aaron’s of the world, and on the families who care for them and love them.

And on the staff at all the places that also care for our special ones. Imagine having dozens of persons together, many of whom have these OCD issues and meltdowns. I saw one yesterday when I was at Aaron’s day group, and I saw the response of the staff. Being spit on and kicked is not pleasant yet these amazing people stay the course.

Seizures cause brain damage that worsen the situation. Seizure meds compound the problems with side effects that include worsening behaviors.

How complex these things are!

How life-altering for the families!

How we love Aaron!

We hurt when he hurts. We struggle when he struggles. We mess up and need to ask his forgiveness, as well.

We all need grace, God’s and each other’s.

I have to fill out this behavior chart about the whole hard ordeal. Stats and records must be kept.

What can’t be measured in any metric or logged on any chart is the love we have for Aaron and that he has for us when the dust has settled and the tears are gone.

I wish I could check a box that explained his sadness at his own behavior. One that would record his heartfelt apology, the tears in his eyes…in my eyes…and the lasting impact that yet another hard moment has left with us.

I’m thankful that God knows and that He gives His grace for each day.

And thankful for our complex and amazing Aaron…both sides.

Aaron is Still…….

Time slips so quickly away from me. I feel the frustration of having more to do than I have hours in the day. Blogging regularly is one of the things that continually gets pushed onto the back burner of my life.

Speaking of back burners, our kitchen is nearly finished. We’ve been fully using it for several weeks now. I love it! Our second new refrigerator was delivered a week ago. Our first new fridge didn’t work for even one second and it was an ordeal getting the company to approve and deliver a new one. Just another first world problem. Our refrigerator in the garage filled the need. All our furniture is in the family room and other rooms. We slowly are settling in and are very thankful for Luke’s diligence during a difficult process due to supply issues and being short staffed. We have no complaints. I will show pictures when the kitchen is totally done. Did I say we LOVE it?!

So many times, as we live life with Aaron, I find myself saying, “Oh, I want to share this!” Yet this life with Aaron is one reason that I DON’T get to share all that I want. He does keep me very busy. So, let me just give a quick update and maybe more expounding will come later…but don’t hold your breath too long.

Aaron is still an adventure sitting across the table when we eat out.

Or when we go shopping.

He is still trying to get Moe, our neighbor’s cat, out from under Gary’s truck.

He is still talking to our neighbors EVERY chance he gets…and we are still so thankful for very patient and understanding neighbors who are true friends. Gina sent me this picture and said, “I took this the other night when he was telling us all about life!” Derek has the same look on his face that we often do! 😊 😊

He is still popping over to Amanda and Colby’s house, where she put him to work one recent night making Kool-Aid.

He is still melting our hearts with his sweet relationship with Mollie.

He is still sharing things with everybody, like making sure we took this new pack of gum to Andrew a couple weeks ago when we spent time with him at a race.

He shares this life of his with me and Gary every single day.

What Aaron shares is funny and fascinating and sometimes very frustrating.

Gary and I often laugh and always listen to his abundant talking.

But the frustrating parts of Aaron…well, we still know that we need to handle that with the same grace that God extends to us…every single day.

Easier said than done…and the subject of another blog…maybe…when life settles down.

Did I say don’t hold your breath? 😊

Messy Grace

Last Friday when I went into Aaron’s room to wake him up and get him going for the day, I knew that something was off. Sure enough, Aaron’s bed was soaked. He had a seizure the day before, but I hadn’t heard one that previous night, so maybe he just drank too much water before bed. Thoughts of that continuing issue with the amount of water he drinks made me a little irritated.

So did the fact that because of so many other things going on…and now tons of laundry to do…I had to cancel lunch plans with a friend I hadn’t seen in forever. This was our second time to cancel. GRRRR!

But I’ve learned to look at the positives at times like that. I have a washer and dryer, and they work. I have the time and freedom to change my day around. And now Aaron’s bedding would be totally clean and fresh. Every single bit of it…from the mattress pad up! Oh, and I am ALWAYS very thankful for a super heavy duty and trustworthy waterproof mattress pad! Am I ever!

The rest of our day went as planned. I picked Aaron up from his day group, we went to Wal-Mart, got subs for supper, watched a qualifying run of NHRA racing, and had a nice time with all of it.

Later, not long before I was going to get Aaron from his room so we could watch a Walton’s episode, I heard a thump. I was sure it was from his room. I heard him walking so I knew it wasn’t him. Soon he was in the family room, looking at me with some hesitation on his face.

“Mom?” he asked in a measured tone. “Can you come to my room? I need to show you something.”

I was comfortable on the couch. It was nearing 8:30. I was winding down physically and mentally. I was in no mood to go to his room and probably look at something on his computer that he just HAD to show me.

“Aaron, I don’t want to go up to your room right now. Let’s just watch The Waltons,” I countered.

“No, Mom!” he insisted, “I need you to come up to my room now!”

Then I remembered the thump.

“Aaron,” I began with more calm than I felt. “Did you break something?”

“Yes!!” he answered. “It was my lava lamp!”

Now, you must understand that this was not just any lava lamp. This was a GLITTER lava lamp.

I was such a good mom at that moment.

“OH AARON!!! YOU DIDN’T!!!!” I not-so-calmly replied.

I did not want to walk up those stairs.

I did not want to walk in his room.

I did not want to see what I soon saw.

There, on the floor beside his bed and under his bed was thick blue oozing goo.

And not just any goo.

It was thick blue oozing GLITTERY goo!!

Let me tell you, I groaned and I huffed and I puffed and I complained the whole entire time I was cleaning up that awful mess.

Poor Aaron wanted to help but there wasn’t much he could do. I knew that there wasn’t room for both me and Gary to be in there working so I didn’t even tell him what was going on. I just continued to bluster and blow as I sopped up the thick mess with a couple of old beach towels. I even told Aaron to just throw them away. I didn’t want eternal glitter in my washing machine!!

My washing machine, which had been running a good part of the day already as I cleaned up Aaron’s OTHER big mess!!

Oh, how my mind was working! Poor me!! My life is all about overseeing and cleaning up one thing after another! Boo-hoo-hoo!!

But I looked up from where I was kneeling on the floor trying to shine a flashlight under the bed so I could see sparkly goopy glitter hiding out…and there was Aaron sitting cross legged on the bed, telling me over and over that he was sorry.

Wanting more than anything to DO anything to help me.

My heart kinda broke for him and I felt such empathy for him.

That’s grace…not the kind that I can create, but the kind that God puts in my heart for this special son who can surely push my buttons but pull my heart strings at the same time.

Later, after all the clean up and after the Walton’s was watched…as we got Aaron’s bedtime routine completed…a storm rolled in. If there is one thing that Aaron absolutely loves, it’s a storm.

“Mom!! Do you think I should keep my blinds open?”

I told him yes and to enjoy the lightning. I was going to bed, finally, and that is all I wanted to do.

But that’s not all that Aaron wanted me to do.

“MOM! Come look at the lightning! It’s BRIGHT!!”

Soooo, I stifled my huge sigh and walked once more into the room that twice already that day held so much frustration for me.

I stood at Aaron’s windows for a minute and soon there it was…FLASH!! Bright lightning, followed by Aaron exclaiming, “Did you see that, Mom??!!”

I sat on the end of Aaron’s bed and immediately he threw back his covers. In another flash, he was right beside me, and there we sat watching the impressive light show, brought to us by God.

And I was ever so thankful for God’s grace in that moment. Grace from Him to me and Aaron in the form of such bright beauty out that window.

Grace to have my tired mind and body refreshed as I sat there enjoying all the sights and sounds of a good Kansas thunderstorm.

Grace to forget the messy day and to focus on happy Aaron.

Messy grace.

God extends that kind of grace to me every single day.

How can I not also extend it to Aaron in the midst of dirty bedding and glittery lava lamp mess?

Thank you for Your grace in all my messy places, God.

And thank You for giving me the grace to show Your grace to Aaron.

However, I do not believe I will be buying another glitter lava lamp. 😁😁

Who Are These Special Moms?

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

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

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

Aaron-mothers day 12May1985

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

Those dear Moms:

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

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

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

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I Love This Place!

For the past few weeks I’ve felt like I live in a snow globe. I’m a figure that’s not fastened down, so when the globe is shaken I just fly all around with the snow. Crazy, to say the least!

Gary and I knew that this was going to happen:

Thankfully his foot surgery was planned and on our calendars many weeks ago. We had time to prepare, even throwing in some minor things like having two bedrooms remodeled. You know how that is. Emptying the rooms of everything; deciding on what supplies to purchase; purchasing supplies; going through drawers and shelves and making multiple donation trips to Goodwill; the remodel itself (great job, Distinctive Designs!!); cleaning; putting everything back in the rooms; and heavy furniture up the stairs or down the stairs (thank you to our son, Andrew, home for Thanksgiving!).

Then there was decorating and preparing for Christmas with all the shopping and wrapping and mailing and cards and cooking yet to do.

Oh, and let’s throw in cleaning our big storage room two days before surgery! Why not??!!

In the midst of it all, there is Aaron. Aaron…trying so hard to maintain his normal.

Aaron’s normal is very vital to him. His normal is as vital to him as breathing or eating. Normal gives him stability and predictability, which he needs to maintain his balance.

Gary and I can roll with the flow, stressful as that flow may sometimes be. Aaron…not so much. When his normal flow of life is redirected…shaken like the snow globe…Aaron most often will react instead of handling the change. Then whatever is causing his life change, as he sees it, becomes the enemy.

The enemy may be an event. That’s why holidays, parties, trips, or other out-of-the-norm happenings can rock his world. Aaron’s world is what he makes it. His world is set and settled in his brain, everything in its place. His days flow with an established pattern. Can we all spell “ROUTINE?!”

The enemy may also be a person. Any person who disrupts his pattern of life or his way of doing life becomes a huge problem to him. Just ask his siblings about our Christmas family time every year. We all know to expect at least one “Christmas Meltdown” every year. The meltdown often involves some aspect of our family Christmas Eve Bingo game, which combines a party atmosphere with a lot of crazy thrown in from the annoying people who are on his turf and messing up his routine.

Autism at it’s finest, let me tell you!

When Gary and I arrived home the day of his surgery, Aaron was so very happy to see us. I saw him scan over Gary’s huge wrapping with his ever-observant eyes, but Aaron never asked how the surgery went or how Gary was feeling.

Instead, Aaron talked up a storm as we got Gary settled in bed. He ran up to his bedroom, returning with a soft blanket of his that he wanted Gary to use. He ran outside in the dark and brought in our trashcans that were at the end of the driveway. He kept looking for ways to help and was just SO happy to have us home. I’m not sure how much of that happiness rested on the fact that his dad was all right or on the fact that we were home, at last, and now life could be back to normal.

Normal! Right?!

Wrong.

Dad was in the guest bedroom. Mom had to make trips down to Dillon’s for meds and food that sounded good to Dad and drinks to settle his stomach. Dad wasn’t talking much and Mom was distracted. People were calling. Or coming to the house.

The morning after surgery, Aaron was getting edgy. We knew it. And Gary, bless his heart…in the shape he was in…managed to ask Aaron about his game he was playing. Aaron was off and running then! Talk, talk, talk!! Talk about what he loved and what he understood and what mattered to him.

Honestly, Dad’s foot and leg all propped up on the living room couch didn’t matter to Aaron at that point. How Dad slept didn’t matter. Dad’s possible pain didn’t matter.

It seems heartless to us, but we know Aaron. We know how autism is often defined by a narcissistic way of viewing the world.

We had some storms that first week. It got rough. My reactions weren’t always kind and loving toward Aaron.

Then after the snow would settle in our upside-down snow globe world, Aaron would look at us and immediately launch into talk of aliens and outer space and his latest movie and anything…ANYTHING…but real life and feelings and concern for us. Then his anger would erupt if he sensed our lack of interest in what he was saying.

Just so exhausting.

One night after going around and around, Aaron regrouped quickly and stood by Gary in the living room talking about what show he was watching or game he was playing. This was Aaron’s happy place with his captive audience.

This past week, our second week post-surgery, Aaron came down with the crud bug. Fever, cough, sore throat, aching all over. A doctor visit, some meds, and he is better. But again, a sick Aaron was a touchy Aaron.

Until he thought of Christmas lights.

“Mom?” he asked on evening. “Can we go look at the lights on the big white house?”

It wasn’t necessarily what I had time or interest in at that moment, but I saw the hope on his face and so off we went. We saw the lights and then drove on to look at some other lights close by in several neighborhoods.

A couple nights later, after our neighbor mentioned a near neighborhood that was all decked out in lights, Aaron and I went out again. House after house was glowing and flashing and bright and fun. Aaron was mesmerized, leaning forward in his seat and very still, with a smile on his face.

“I LOVE this place!!” he finally exclaimed.

It warmed my heart so much for him to express such joy.

It warmed my heart to be the one who showed him this place he loved.

I’ll admit that sometimes I don’t love this place where God has us. Life with Aaron can be very tiring. He requires or demands things from us that we at times have no energy or interest in giving.

This place isn’t always bright and pretty and rewarding and fun. Sometimes we wonder why we’re here and what we’re doing.

But this place is where God has put us.

Aaron is God’s gift to us.

Sometimes we don’t feel that sentiment. Gary and I get weary…lonely…at the end of ourselves.

I’m sure the man Jesus…God’s Son…felt all that and more, thousands of times over, as He walked this sad earth.

And because Jesus walked with us, He also understands our weaknesses and our human thoughts. He is here with us to give us His grace and enable us to do the same with Aaron.

Aaron may not always love this place, either. When his life is askew and he is miserable, loving this place is the last thing on his mind.

But may he know, when the snow is settled and the storm is over, that HE is loved.

Loved by God, as are we…and loved by his parents.

May this place, where we are at the moment, be a place of love when all is said and done.

And may your place, dear one…hard as it may be…be a place filled with God’s love for you and through you.

Bright like the lights of this beautiful season!

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.

What Am I Cultivating?

I sat on our patio one recent morning, enjoying coffee while watching birds and dragonflies flitting all around. The mowed yard, the green trees, the blue sky…it was all so pretty and pleasant. But then my eyes wandered over to our garden plot. UGH!! So much for looking at beauty!

Why? Because for the second year in a row, Gary and I did not plant a vegetable garden. Rain…two out-of-town trips…schedules – it all added up to once again, no garden.

Now our small garden area is a huge mess, full of overgrown weeds and sad neglected old tomato cages. What a difference to have gone from this:

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To this:

Same ground, but different cultivating.

I read this verse around the time I was thinking about the comparison in our little piece of land from one year to the next.

“Trust in the Lord and do good; dwell in the land and cultivate faithfulness.” (Psalm 37:3)

God’s desire for Israel was for them to dwell in the land He had promised to them. He told them over and over that dwelling in the land successfully and fully would require their total obedience to Him. In Deuteronomy 30:15-20, God told Israel very clearly what their choice was:

“See, I have set before you today life and prosperity, and death and adversity; in that I command you today to love the Lord your God, to walk in His ways and to keep His commandments and His statutes and His judgments, that you may live and multiply, and that the Lord your God may bless you in the land where you are entering to possess it.” (v. 15-16)

God told them that disobedience would bring death and a curse. He urged them to choose life by loving the Lord, obeying His voice, and holding fast to Him. And not just life but life AND prosperity.

In other words, to cultivate faithfulness.

This same principle is very true for me today. I have a choice to make. God won’t force me to make the right one, but He has told me what the right choice is and how to make that choice.

It’s simple, really. Choose to love God, choose to obey Him, and hold fast to Him. Hold fast by hanging onto Him when life is crazy and tiring and disappointing.

I get really tired sometimes. I know we all do. Just as I began this blog, Aaron called me from his day group. I knew he had been having a hard day, and his voice and manner on the phone confirmed it. I ended up just picking him up early today to avoid any further meltdowns at his day group. This change in my day was not in my plan. His attitude today makes me angry and tired.

And guess what I saw before all this happened? Beautiful beach vacation pictures. When I hung up from talking to Aaron, I was wanting to just hang up this life with him too, quite honestly. For a fleeting minute, I wanted to give in to my beach thoughts…have a pity party…and allow myself the “luxury” of wallowing in the wishes for a life I don’t have.

I just HAD to be writing a blog today on faithfulness, right?!

You see, God has put me right here where I am. This life with Aaron is not what I had planned, but I must see and trust that this life with Aaron is what God planned…for me.

And in this life that He planned for me, I really do want to live it in victory and joy. I want to cultivate this:

IMAG00644

And not this:

It truly is up to me which picture will be the picture of my life. I choose what to cultivate by choosing whether to love God…obey Him…and hold fast to Him.

I love Him by praising Him even when I don’t like what’s going on around me.

I obey Him by reading His word and finding out what exactly it is He wants me to do each day…and then DO it!

And I hold fast to Him by not allowing my thoughts to digress into selfish wishful thinking and all those “what if’s?” and asking Him to give me grace to love and handle Aaron correctly.

I should know that when God burdens me with a blog, then He’s going to hammer it home to me in a very personal way! 😊

So, wherever you are today…on a public stage or stuck at home…reeling from an unexpected diagnosis…planning a funeral…facing life alone as a single…hurting from unfaithfulness…starting all over in a new life or new church or new friends…losing your job or needing a new one…raising your grandchildren…raising special needs children…

Whatever is your situation, just remember:

CULTIVATE FAITHFULNESS!

And just watch what God will grow in your life!

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The Hard Parts

Tuesday was my birthday, and an early gift for me that morning was that Aaron got out of bed much earlier than the day before. Why is that a gift? It’s a gift because having to wake Aaron up to get his day going often brings anger from him, but if he gets out of bed on his own it usually comes with a far improved mood…from BOTH of us!

Aaron’s bedtime logbook that he faithfully fills out every day shows that he got out of bed at 7:16. Not 7:15. 7:16. I just wanted to be sure that I was clear on that point, since Aaron is forever and always very clear and precise about his times.

My memory logbook in this brain of mine has recorded that on Monday, Aaron did not get out of bed at 7:16. He was sleeping soundly on that morning, so I had to wake him up, which can be very tricky. Being awakened by Mom is not on Aaron’s list of Happy Ways to Start My Morning. It’s not on my happy list, either. That’s because there is almost no way for me to get Aaron to wake up that suits him. Monday was a rather angry morning for Aaron, but he did go to his day group and I was thankful for the reprieve.

So, Tuesday was wonderful! Aaron was happy, not at all because it was my birthday but because I did not have to talk to him in my weird voice…or shake his leg…or look at him with squinty eyes…or any of the other very irritating manners that he thinks I demonstrate when I’m working to get him out of bed.

I offered to fix Aaron some French toast since we had time and since he loves French toast. He readily agreed, so while he showered…in whatever form that process took that morning because we’re never quite sure…I began the French toast. Later, as Aaron sat down to eat, I saw him immediately place something from his plate onto the table beside him. Can you see the little dark spot there on the table near his plate?

I knew what it was. The small glob was a piece of the toast that had cooked harder than he likes. Aaron always places hard parts of food off his plate because he will not eat them, and he doesn’t want them near his food that he IS eating.

Later, when we were both done with our breakfast, I saw that on his plate was one more bite of French toast. I told him he had one more bite to go as he got up from the table, but he told me that he didn’t want it.

“It has those hard parts, Mom,” he explained. I didn’t push the issue or make a big deal about it. After all, why ruin our good morning over one bite left on his plate?

But as I looked at his plate, I thought of how much like life those hard parts are. Hard parts are most definitely a real part of all our lives. I wish I could just have all the plump, juicy pieces that are easy to swallow. But no, it doesn’t work that way. Life, all too often, seems to have way too many of those hard parts.

I remembered those set-aside pieces the next day as I took Aaron to his Epilepsy doctor appointment. It was time for more blood work for Aaron, so after his doctor visit, we walked over to the building next door and went up to the lab. We’ve been very blessed that Aaron, from the beginning of his seizures at a young age, has always liked watching the needle go in his arm. Even when it hurts, Aaron wants to watch each time.

I looked at him sitting there, taking it all in, and I suddenly wanted to cry. I wanted to cry because he looked so vulnerable. We get used to all these doctor visits and needles and medicines and tests, but today it was like I was seeing it all fresh and new. He was my little boy again, with his life ahead of him…all of us unaware of all the hard parts that were ahead.

Soon we were waiting on the elevator, Aaron more than ready for lunch at Applebee’s. The door of the elevator opened. I hesitated to get on because there was a woman in a wheelchair inside, plus the nurse who was pushing her, plus another woman, plus a man. That’s a lot of pluses! The woman in the wheelchair saw our hesitation.

“Come on in!” she cheerily said. “I won’t bite!”

I laughed, told Aaron to follow me, and we stepped inside. I stood in front of the woman in the chair, facing her. I saw then that she was on oxygen. She was wearing a hat to cover her bald head, and her skin had the unmistakable chalky look of advanced cancer. I thanked her for letting us crowd in, and then I asked her how she was doing.

“Oh,” she said now with weariness, “I’ve been better.”

“I’m so sorry,” I told her. I wanted again to cry, and I hoped she knew that I cared.

As the elevator stopped and we all went out into the hall, I saw that the man from the elevator was walking with a badly deformed leg, or maybe a prosthesis under his pants. His walk looked so painful. And there outside the front door was a van from a hospice group, waiting to take the sweet cancer patient to her destination.

Hard parts. All around me were hard parts.

Still fresh in my heart was the message from a friend about her impending divorce, received that very morning. Other concerns for family and friends weighed on my mind…death, loneliness, health issues, fears, financial problems, job concerns.

Do I sound depressing and dreary? I don’t want to leave it there, because for those who know God and follow Him, these hard parts are also precious parts of growing closer to our Savior. Jesus suffered, and so shall we suffer. But we have hope because we know that God is in control of every part of our lives…the easy and the hard.

This hope isn’t like saying, “Oh, I hope that works out.”

NO! This hope is a certain expectation that all WILL work out according to God’s will, for our good and for His glory. The outcome may not work out exactly as I want, but my wants are not nearly as important as God’s will.

Is Aaron cured of his Epilepsy? No.

Is Aaron cured of his autism? No.

So, how do I handle those “no” answers? I handle them by fully embracing that a “no” answer is still God’s answer to me. I trust Him to know best.

And I don’t try to push those hard parts out of my life and out of my heart. I accept their reality with God’s grace.

Of all the Aaron issues that we deal with, his behaviors are by far the hardest to handle with love and wisdom. Gary and I get tired…frustrated…overwhelmed…angry. But Aaron is the whole package, the easy and the hard. The sad and the hilarious.

We wrap our arms around Aaron and love the whole person, seizures and autism mixed in with all the rest.

Like Jeremiah said:

“Blessed is the man who trusts in the Lord, and whose trust IS the Lord!”

“You are my refuge in the day of disaster.”

And so must each of us see every part of our lives as just the right mixture that God intended, and not try to remove the parts that are hard as being too hard to handle. Go in God’s strength and trust Him.

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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