Grace – He Said What?!

A Shining Light Among The Broken

Aaron followed me into the dining room one day. I wasn’t paying attention to him behind me as I worked on our Christmas village.

“Mom, look!” Aaron said.

I turned to see him staring intently at our little tree that is full of my Grandma Holly’s handmade ornaments, made with love so many years ago. This was a pre-lit tree, but as so often happens, those bulbs had long since burned out. I had replaced them with another strand of lights but left the unlit lights on the tree – hidden, so I thought, by the new lights.

“This light bulb doesn’t work!” Aaron exclaimed. And as his eyes roamed over the tree branches, he pointed out other broken small bulbs.

“Here’s another one!” he said. “And here…and here…and here,” he continued as he pointed to each one.

I see brokenness all around me. I see it as I walk through the stores…as I pick Aaron up from his special need’s day group…as we deliver for Meals on Wheels…in the prayers asked for family and friends…and sitting all around me in church.

And I see brokenness when I look in my mirror.

We all have those hidden struggles and deep pains that keep us awake at night.

Broken lights.

I think Christmas is the time of year where we see most clearly that there is nothing we can do to manufacture true peace in our souls.

We shop, put up beautiful lights and decorations, bake the best treats, send and receive the cards…

But deep deep down our particular broken areas of hurt and worry remain. No amount of self-help can take it away.

Yet a light does shine among our broken lights.

WHO we celebrate, or should, is the answer to our broken.

“There was the true Light which, coming into the world, enlightens every man.” (John 1:9)

“Christmas is a brilliant remembrance of the grace and mercy of God.” (Albert Mohler)

Our answer is in the Light of the world, Jesus.

Our broken areas are still there, but the light of Jesus can shine the brightest in our lives if we just let Him do so.

Our answer is not within us. It’s outside of us, through Jesus.

God sent Jesus, His Son, to live an unbroken life in this broken world so that we could know God through Him.

Jesus came TO us so that we could have hope IN us.

We can still point out the broken lights in our lives, but the true Light can shine the brightest if we believe in and receive Jesus, God’s greatest gift to us.

And His light will never be broken.

Lean On Me, Aaron

Yesterday Aaron and I went to his annual PCSP meeting. How many years have we had these meetings? More than I can nearly remember.

His case manager and I decided several years ago to hold our meeting at one of Aaron’s favorite restaurants, Carlos O’Kelly’s. Aaron really doesn’t like meetings that discuss him unless we’re letting him do all the talking about really important stuff. You know – matters like whether Pluto is a planet or not, what solar flares are, and are black holes really sucking in stars?! But mulling over matters of his likes and dislikes, what he is or is not allowed to do at his day group, what his goals are, and so on and so forth…well, Aaron would rather leave the room and find someone who IS wanting to hear him talk about planets, flares, and black holes. But put a plate of enchiladas, chips and salsa in front of him and he’ll endure our needless talk.

Aaron had gotten out of bed super early the past two mornings. Space videos on YouTube were calling to him, I guess. As we sat in our booth munching on chips and salsa, he started leaning and leaning until finally he was resting against me like a little child.

I eased him over and he sat straight for a couple minutes, but then he began leaning into me again. I knew that he was sleepy from his very early mornings and from his meds, but still I kept propping him up so he could eat and participate in the meeting if needed.

Later, as I drove us home, I looked over at him sleeping soundly in his seat.

He is sometimes showing that age is creeping up on him. He even seems a little feeble at times, like he did as he leaned on me during lunch. I know that seizures are taking a toll. He has memory loss, tremors, drooling sometimes, and other effects of both seizures and medicines.

My heart is stirred with so much love for him. So much concern for his life now, and for what the future will hold for him.

Yet there are those other moments, too…more and more, it seems. Moments when Aaron is frustrated when things are not going his way at his time. He is becoming more impatient with waiting, more set in his routine, and more expressive when those frustrations mount.

Therefore, Gary and I are finding ourselves more stretched on some days. Our own frustrations mount along with Aaron’s. Stress seeps through every crack in our strong armor.

I look at Aaron leaning on me, and I know that he needs me when he is struggling, both physically and emotionally. His reactions are often beyond his control. Sometimes that fact is hard to remember.

So, who do I lean upon?

God.

Yes, Gary and I support each other. I have amazing friends who walk a similar journey to ours. I have great family on both sides.

But it is God Who leans down to me as He did the other night and fills me with deep peace even as the storm swirls around me…Who understands my struggles…Who speaks comfort to me…Who assures me with these words:

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

I can feed on so many things like anger, comparisons to others, resentment…the list goes on.

Or I can obey God and lean into Him. He understands my need. And I must understand my need to trust Him and do good.

To feed on faithfulness even when I just want to walk away.

Faithfulness to God, and faithfulness to our Aaron.

Knowing that this is also true:

“Commit your way to the Lord, trust also in Him and He will do it.” (Psalm 37:5)

Commit. Lay on God’s shoulders the heavy burden.

He is strong enough for all my burdens and He is there for me to lean upon when I am tired and done.

And oh, I cannot express enough about the grace that God gives me to continue putting one foot in front of the other, day after day with Aaron.

It’s not one bit about how strong I am or that God gave Aaron to such an amazing parent.

But it IS all about how God meets me in my most down moments with His sweet peace and His words that speak such joy and comfort to me.

And as I learn to lean on God, I can be there for Aaron when he needs to lean on me.

God holds me up so that I can do the same for Aaron.

That’s even more amazing than all the black holes in the universe!

Remain With God

I’m sitting here tonight at my desk, feeling the weight of hurt that someone I love is enduring. Yet knowing, too, that God is at work answering prayers that have been prayed for years.

Sometimes God’s answers come with pain.

Praying with that knowledge is an act of sacrifice.

I don’t like pain and hurt, and I especially don’t like to see those I love in that condition.

A few weeks ago, I drove to see a sweet friend for the day. I shot this quick picture while I headed down the road.

That cloud was both beautiful and intimidating. Would it just stay a gorgeous cloud, or would it turn into a storm? On I went on the road I needed to take. Turns out there was a little thunder later but mostly I enjoyed a very pretty sky that God gave.

About this same time, I read I Corinthians 7. Paul was encouraging people of various situations in life…wives, Jews, Gentiles, slaves. He ended the section with these words:

“Brethren, each one is to remain with God in that condition in which he was called.” (I Cor. 7:24)

Three words jumped out at me.

Remain with God.

Whatever the condition to which we are called, we are to remain with God.

Sometimes…very often, actually…life’s situations to which God calls us are just plain hard.

Cancer. Oh, the dear friends I have who are battling cancer.

Dementia. Loss of a loved one. Or caring for a loved one with a serious illness.

Parenting special needs of any age.

And this world. This sad, scary, upended world.

But through it all, we are to remain with God.

Like that road I was driving, straight with a curve up ahead and a big uncertain cloud, but on which I knew I must remain until I reached my destination.

Remain with God through the tears, the fears, the pain, the pressures.

Don’t give up on God. Listen to what else Paul said about his own thorn in the flesh that God allowed him to have.

“And He has said to me, My grace is sufficient for you; for My power is made perfect in weakness.” (II Cor. 12:9)

If I don’t remain with God, then I will not be able to partake of His amazing and sufficient grace, or to experience His awesome power in my life.

Being under the hand of my loving Father is where I need to remain, regardless of the circumstances in which I find myself…or in which I find those that I love.

Remain with God.

There is no better place to be.

The Reluctant Uncle Aaron

You can probably tell from the title that not a lot has changed in Aaron’s attitude about being Uncle Aaron.

Sigh.

Aaron will still talk it to death, this idea of Uncle Aaron. Like the day we were chatting with someone.

“My sister had a nephew!!” he suddenly exclaimed.

“Ummmm…your sister had YOUR nephew, Aaron,” I corrected.

Can’t have that unclear fact just hanging in the air, right?

The reasons for Aaron not being thrilled about his little nephew continue to mount. To many people, the idea of not wanting to meet this sweet little guy just doesn’t make sense.

But when you understand all the layers that make up Aaron, then it does compute.

Aaron does not like to travel. Leaving his normal behind at home is a huge stretch for him. He had adjusted pretty well to being at his sister’s house when we would travel there before all this Uncle Aaron business. Andrea and Kyle had an extra bedroom that Aaron used, where he could escape to read or play a game or listen to his music during the day. That room is now Ryker’s nursery.

We were planning a trip with him in April, but we knew we needed to tell him about this not-so-small detail. That, and the fact that we planned to fly, was a deal breaker for Aaron, Uncle or not.

Ryker had taken over Aaron’s room, usurping Aaron’s place in their home.

Then there is all this baby-talk silliness that Aaron hears when we facetime with his nephew. I was having a Gramoo moment with little Ryker one day, speaking with that special baby voice that we all know. Aaron was standing behind me.

Softly under his breath I heard him say, “You’re weird.”

It hit me that we have another element of just how huge this is for Aaron. He does not like any talking that he considers unusual or, as he often says, is weird.

Baby talk from Gramoo is most very definitely…weird.

So Ryker, in Aaron’s mind, is responsible for this weirdness.

We often find ourselves, or others, saying, “If Aaron just…”.

If Aaron just this or if Aaron just that.

But Aaron doesn’t JUST do anything outside of his norm very easily. Autism rules his world. He can’t tell you a thing about what autism is, but his life shows you many things that autism does…how it affects every facet of his life.

We think little Ryker would get a big kick out of Aaron, especially the way Aaron runs his fingers together over and over when he talks. We have told Aaron over and over how much his nephew would love Uncle Aaron, but Aaron is still unmoved.

Aaron does often smile when he sees pictures and videos of Ryker. When Aaron plays a Nintendo game he has about taking care of babies, he names his baby Ryker. All these signs are encouraging.

But the hardest part for Aaron, and the saddest for all of us, is that Aaron wonders about his place now in our family. This little interloper has come in and is, to Aaron, a competitor for our love.

We have had many conversations with Aaron about how nothing has changed as to how much we love him, and always will.

We have explained how hearts grow as a family grows…how we have room in our hearts for both Aaron and Ryker.

“You mean I’m not being pushed out of the love?” Aaron asked after one such conversation.

And my growing heart hurt for Aaron, for his inability to process all this change and for his fear of being replaced by his little nephew.

It’s also been a lot for Gary and me to process and understand, to accept and to not be angry or bitter.

We have our moments, our ups and downs with all of it, wishing that we could just be a normal family.

Yet we also see God’s hand of grace in our lives and have learned to continue to trust His plan in giving us Aaron.

I keep going back to the verse that God gave me the morning after Andrea and Kyle shared with us their wonderful news about a coming grandbaby.

“…we have fixed our hope on the living God…” (I Timothy 4:10)

I knew then that we would have some struggles, but I never knew just how many there would be.

But God knew.

And I DO know that His knowing hand is all I need to know.

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!

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