Strength – He Said What?!

Standing Firm

The other morning as I had my quiet time, I read this verse:

This picture on which I put this verse is one of hundreds that I have taken from the window in the room where I sit at my desk on most mornings and spend time with God. That is where I was sitting when I read those words.

The window in that room looks out on our back yard. There, front and center, is this very large oak tree. So many of the sky pictures or weather pictures that I have taken over the years just naturally include that big oak tree.

When we first moved here 25 years ago, that tree was small. But now look at it!

As I read those words that Paul had written to the Corinthian believers centuries ago, and I looked out my window, I thought of how our oak tree is a beautiful example of standing firm in our faith no matter what is going on around us.

The cold days of winter:

The growth, but also the storms, of spring:

The beauty of a summer sunset:

The golden days of autumn:

The fog that may hide our view of what’s around us:

The scary storms that come:

Each of us can relate to one of these scenarios. Life is so full of beauty but also can wallop us with fear and heartache.

My prayer is that I…that all of us who follow Christ…will stand firm in our faith even when the scenes that surround us are changing.

The only way to do that is to stay in God’s Word, ask for His wisdom and direction, and follow Him faithfully.

Don’t let the winds that are blowing all around us, especially in these days, weaken and uproot us. Stay rooted and grounded in God’s truth!

So may it be said of each of us who are Christ followers, “FOR IN YOUR FAITH YOU ARE STANDING FIRM!”

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.

Salads and Seizures

Aaron walked into the kitchen on Saturday morning a little over two weeks ago – March 2nd, to be precise – and saw that I was boiling some eggs. Ever hopeful that whatever I am cooking will be something he likes and something I am making for him, he stopped and watched for a few seconds.

“Mom, what are you making?” he asked.

I told him that I was making his favorite salad. He stared blankly, as if he was utterly clueless about this favorite salad.

“You know, Aaron,” I continued. “The salad you love so much.”

“The salad with Ranch?” he questioned.

“No,” I told him. “You know, the salad with the eggs on top.”

Still blank.

“And the cheese and the bacon,” I explained.

“Oh yeah!” he finally said.

But he still gave no name to this mystery salad which really is his favorite salad! Aaron has such a hard time with names of people and pets and, amazingly enough, food!

“You call it Egg Salad, Aaron,” I told him. “But the real name is Seven Layer Salad.”

I knew he wouldn’t remember the name, but he knew it for now. It was fun to watch his happy reaction to the thought of this salad for supper…whatever it’s called!

We were looking forward to our day and our weekend. The day before, on Friday, Aaron had two seizures, and so he wasn’t able to go to his day group. He missed movie day, which always makes me sad. Thankfully, though, Aaron loves staying home and showed no regret at all.

On Friday evening, we all went to Wal-Mart to get Aaron’s weekend treats as well as some fun food for the weekend. We were expecting a strong winter storm to hit on Saturday evening and into Sunday, so there was excitement mixed in with our fun. We are snow lovers! I had especially waited until Gary was home from work so he could go with us, just in case Aaron had a seizure in Wal-Mart. We have learned that when Aaron has one or two seizures, he might have a drop seizure. These seizures, drop seizures, are so dangerous and unpredictable. This past year has seen Aaron have some serious injuries from falling. Thankfully, our shopping trip was uneventful and was fun for all of us, Aaron especially.

There were no more seizures during that night. Aaron was happy as could be to think of his free day ahead…the anticipated snow…making chocolate chip cookies with me…steak for supper…AND his special salad!! Whatever it’s called! 😊

Later that morning, before noon, Aaron was downstairs in Gary’s study. Aaron was talking up a storm of his own with Gary, as usual. I was in the kitchen, out of sight of the stairs. Suddenly I heard a terrible crash…and then the noise that I definitely recognized. A seizure!!

Gary was beside Aaron in an instant. As I started down the stairs, Gary told me to get towels. I was panicked and in tears as I ran for towels, hurrying them down to Gary. There was blood all over Gary’s hands. I knew this was serious.

As he started up the stairs, Aaron had fallen backward into a file cabinet, hitting the bottom metal handle with his head and actually bending it. Aaron is usually not conscious for a period of time after a seizure, sleeping soundly, but not on this day. He woke up, maybe because we were holding him and applying pressure to the gash on his head. Or perhaps he awakened because of the pain. He was combative and scared, something we’ve never seen. He was fighting us, trying to get away and go up the stairs as we held him tightly.

Finally, Aaron calmed down. He wanted to know why Gary’s hands were bloody, which of course was scary. We explained what happened and told him we would need to take him to the ER. Soon we were in the van, me sitting in the back with Aaron while Gary drove. Aaron was coherent then. The bleeding had stopped, but not his pain, of course. Yet he was remarkably calm and understanding, a trait he often displays in these frightening times. A gift from God, I’m sure.

I thought of other gifts from God as Gary drove. We talked about how thankful we were that the sun was shining and there was no snow yet. I was VERY thankful that it was a Saturday and Gary was home. And we were thankful still that there is a good hospital and emergency room out here in the country not far from our house.

We continued to be grateful that Aaron was seen immediately and that the CAT Scan showed no damage to his head or neck. Aaron was so compliant during the scan, even though it hurt his head and the bleeding began again, worse than ever.

But oh, how my heart hurt for our son! I couldn’t let him know that. Gary and I stayed strong for Aaron and for each other. I really wanted to curl up in a ball and cry, but God gave so much grace to be fully there for Aaron.

And there was Aaron, fully talking up a storm about nuclear bombs, of all things! Talk, talk, talk he did in his typical Aaron fashion. He knows a captive audience when he sees one, let me tell you!!

God gave special strength to Aaron, especially, as he endured 8 staples being put in his head. I knelt by his side, stroking his arm and face and talking to him during the ordeal. With each staple, he would flinch…eyes closed…and mutter a soft “ow.” I felt like my heart was being pierced each time.

I tell you, our children with medical issues…and I know a lot!…are true heroes. They endure more pain IN their lives, and disruption OF their lives, than I can fathom. And yet they just keep on going. One of our sweetest blessings is that Aaron doesn’t feel sorry for himself or complain about his lot. He LOVES to talk about what happens to anyone who will listen, trust me, and even to perfect strangers…but he doesn’t act like he resents this life that he lives.

However, once in a while, he does give us a glimpse into his heart and his thoughts. He did just that on Sunday as we made his cookies, lots of snow outside our windows, and his head still bandaged.

“Mom?” he began. “Saturday, I thought, would have been a good day, but it wasn’t.”

I really wanted to wrap him in a hug…which he would have promptly pulled away from…and empathize with him about what a bad day it certainly was. But I knew that I needed to point him to a principle that God points ME to, over and over.

Thankfulness.

“I know it was a hard day, Aaron, but it ended good,” I reminded him. “What did you have for supper?”

“We had steak!” he answered with enthusiasm.

“And what else?” I prompted him.

He thought a few seconds. I was hopeful that he just MIGHT remember the name of the salad.

“Triple egg salad!!!” he exclaimed.

Triple Egg Salad??!!

How on earth did Seven Layer Salad become Triple Egg Salad?!

Whatever.

So, for that moment, we were both thankful for Triple Egg Salad!

And in my heart, for so many other blessings as well!

My Priceless New Year’s Gift

I was sitting by our Christmas tree this morning, knowing this is the last time I’ll be enjoying its soft beauty this year. And it hit me. Everything I do today will be the last time I do “that” this year, because tomorrow is a whole new year! My brain, fuzzy from another long seizure night with Aaron and waiting for my first cup of coffee to kick in, tried to wrap itself around that fact. 2017 is almost here!

I’m not really as excited as that exclamation point may indicate. I mean, a new year is always pretty cool to think about. But life has a way of pulling us back to reality, especially as we get older, and for me my vision is narrowed to what I have on my plate right now. I know I need goals, but on days like today, today is about all I can handle.

Up four times with Aaron and once with the dog last night made my reality at that moment very narrow. It was the tree and the lights…..my coffee…..and the baby monitor beside me as I listened to Aaron after he returned to bed, my ears jumping into alert mode at each change in his breathing.

And one more thing……a word. The word “grace.” Sometimes that word may be overused, if that’s possible, and for me may lose its full meaning. But this morning that word kept going through my tired mind.

Two meanings of this word popped up on my handy phone dictionary app. They are:

1) The freely given, unmerited favor and love of God.

2) The influence or Spirit of God operating in humans to regenerate or strengthen them.

Perhaps my favorite grace passage in the Bible is 2 Corinthians 12:9-10. I was drawn to that this morning, and though I know it pretty well by heart, I made myself actually walk upstairs to get my Bible. Really, walking up the stairs took some effort this morning. I felt like I should copy Aaron, who earlier went up the stairs monkey fashion on all fours, as he often does.

Anyway, Bible in hand, I sat down and opened to these familiar verses. Paul had been given his “thorn in the flesh,” whatever that was…..and three times he implored God to take it away. Implored…..past tense. It seems that Paul was done with asking God to remove it, and was now able to say in the next verse that God “has said,” meaning that there was an ongoing result of God continuing to say these truths to Paul:

“And He has said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Most gladly, therefore, I will rather boast about my weaknesses so that the power of Christ may dwell in me. Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”

One thing I had written beside these verses in my Bible, my memorial stone, was simply: “Feb. ’92, Aaron.” That was the terrifying day in Germany, 25 years ago, when Aaron had his first big seizure. I’ll never forget that Sunday afternoon in our kitchen in military housing…..the terror of him falling backward into my arms…..blood coming from his mouth as he seized and I screamed for Gary……the frantic phone call……the ambulance……the German children’s hospital…..language barriers with doctors…..so much to absorb and to understand and to fear.

But God was there with us bringing His unmistakable peace and calm, due only to His grace. It had nothing to do with Gary and me being strong, or having a certain personality, or any of that “me” stuff. I was a momma wreck! It was totally God pouring out His strength…..His grace…..onto and into me.

So here I was this morning, 25 years later……TWENTY FIVE!!!!…….and God pulled me back to these memorial verses. Nothing has changed. Aaron had four hard seizures last night. God has not taken away this thorn, this reality, this sadness in Aaron’s life and in ours. But he has, over and over and over again, shown us His grace….His love……His favor…..His strength…..in the middle of our pain and our struggles.

So am I, like Paul, “well content” with this weakness that God has given our Aaron and us? That phrase means “to take pleasure in.” Well, no. I can’t honestly say that I take pleasure in Aaron’s seizures or in his autism. But I must look beyond all that list of things Paul mentions “taking pleasure in,” and look at those words, “for Christ’s sake.”

For my whole life, really, is to point to Christ. That’s what following Him is all about, after all. And if I could handle it all myself, I wouldn’t need Him. But I DO need Him!! And therefore, what Paul said is so true. “When I am weak, then I am strong.”

Strong because God makes me that way, and He makes me that way only because of His grace. Back to that word again…..grace……the outpouring of His favor and strength upon me.

So I just found my resolve for this new year. It’s to come back to the realization that I can’t change a thing, but I don’t need to change a thing. Recognizing my sorrow and my pain isn’t meant to point to me and to make me the focus. It’s to point to Christ and to talk about His grace through it all.

“So that the power of Christ may dwell in me,” Paul said. That word “dwell” means “to pitch a tent.” Christ’s power is here for the long term, for me, as I rely on Him and trust Him in the hard times and thank Him through all of it.

His grace is here for all of us who follow Him. What a priceless gift! So I close with the words of this old song written by Don Moen, perfect for this new year ahead.

He Giveth More Grace

He giveth more grace as our burdens grow greater,

He sendeth more strength as our labors increase;

To added afflictions He addeth His mercy,

To multiplied trials He multiplies peace.

When we have exhausted our store of endurance,

When our strength has failed ere the day is half done,

When we reach the end of our hoarded resources

Our Father’s full giving is only begun.

His love has no limits, His grace has no measure,

His power no boundary known unto men;

For out of His infinite riches in Jesus

He giveth, and giveth, and giveth again.

His grace is such a gift! And so is our Aaron.

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You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights. Gary was already trying to go to sleep, and I wanted to do the same. But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much.

“AARON!!” I hissed. “Why are you in our room?”

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied. “Now go to bed!”

Not long after, it happened again. Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron. Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm. Another bad report this past Monday just took all the wind out of me. Gary and I feel like nothing is working, but something has to make a difference. We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying. Praying a lot.

I was so thankful for the verse that God gave me this week. The portion that meant so much to me was this phrase:

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.” (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us! One of us gotta have some relief!!”

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness. But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room. Soon he walked up to me and handed me one of his sticky notes. Here is what he had written:

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Bless his heart. He really wants to do better, but finding that better is very difficult for him in certain circumstances. Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday.

That verse God gave me early in the week was perfect. We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways. The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth. In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened. I was out with my little elderly friend, Nora, when I got a text. This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago. Dona and I rarely text, so I was surprised and a little alarmed to see her name appear. I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with. We briefly texted, with her telling me that I had just been on her heart and mind. God at work, without a doubt.

I could hardly wait to get home and call her. We talked for quite awhile. She told me again that she kept thinking about me and so she prayed. I love it when God does these things! He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s. We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt.

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!! He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!” he boomed. “I want to give you a rose!! Because I love you!!”

And with that, he gave me the biggest hug! I thought my heart would explode!

The love note…..the rose……the hug.

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night. BAM!! There he is again, full of talk and excitement, no matter how tired we are.

“Are you sure you want me gone?” he asks. No, Aaron, not gone…..but resting. Go rest, and let us do the same.

His behaviors can be so very tiring. This past week has been emotionally exhausting for us, as well as physically. We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone. We just want him to be happy, and to know how to behave in a way that makes others happy, too. We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief. I know He’s listening…..I know He cares……I know He’ll answer. He’s already impressed others to pray for us. That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life. One so often shows me the other.

I just have to be making an effort to look sometimes.

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My View

I was in TJ Maxx with my elderly friend, Nora, last Wednesday when I got a call from Paradigm, Aaron’s day group. I was tempted not to answer it, figuring it was Aaron just wanting to tell me about his day. That could wait. But I wasn’t sure, so I did answer and I immediately knew that the news was not good. Aaron was on the other end, his voice thick and choked with anger and tears. Here we go, yet again, I thought. How I wish that Aaron could stay happy!

I picked him up as soon as I got Nora settled back at her apartment. Aaron was asleep, so I had time to talk to the staff, all of us scratching our heads as to what caused his angry outburst that morning……and what the solution could be. I found out from Aaron later what happened. He tried to give his good friend two McDonald’s coupons and she didn’t want them. She wasn’t being mean to Aaron, just honest, but Aaron felt rejected and very hurt, so he just had a total meltdown.

Thursday was a better day for Aaron. Then came Friday…..

I told Aaron that we would go out to eat when I picked him up at the end of his day. His choice. So he chose Denny’s, of course. He does love Denny’s. On the way to Paradigm, I talked to him about being nice…..being kind with both his words and his hands. About talking to someone if he was angry or hurt. He agreed with everything I said……until he walked into Paradigm.

I was waiting in the van after I dropped him off, waiting for him to come and tell me if they were going to a movie. But instead, out the door came one of his staff. She told me that Aaron had become verbal instantly with another client when he walked in the door. Then out came Aaron, yelling at this staff as he stood on the sidewalk. He eventually got in the van and off we drove. My anger and disappointment and great frustration spilled out in harsh words as we drove toward home. I was so mad at Aaron and mad at myself for being mad, and it just all boiled over.

I pulled into Denny’s, deciding that it might do us both good to be in a neutral place. Aaron sat on the curb before going in, saying that maybe he just shouldn’t go in to eat. I told him to come on and he did, but for most of the meal I just sat silent. I was exhausted and defeated and still battling my anger. Aaron was scared……scared because of all the people from whom he fears rejection, he fears it the most from me. He kept telling me that he loved me……kept trying to share his salad with me…..his crackers, French fries, chicken strips……even reached over, took my hand, and kissed the back of my hand. Yes, he really did that. I wonder who saw it, and what they thought of my lack of emotion?

We ran into WalMart after our meal, where I picked up food for Thanksgiving bags for church, and Aaron tried to help. I still felt numb, tired. After I checked out, I looked toward the bench where Aaron was sitting, and this is what I saw.

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Then my heart did stir with sorrow for Aaron as this picture of him was a picture of dejection, and his own tiredness. Oh Aaron, how I wish your life wasn’t so difficult and hard! And how I wish you could understand that you so often make it that way, and yet so often you can’t control the impulses you have that make you make it that way. It’s so complicated!

Aaron went right to bed when we got home. I went to the patio, baby monitor and my Bible in hand. I could listen for seizures while I spent some time unwinding and processing……reading my Bible and praying. I could hear Aaron’s steady breathing on the monitor as I breathed out my prayer to God, asking Him for wisdom to know how to deal with these constant ups and downs from Aaron.

I called my friend, Wendy, who walks this road that I walk. She understands and doesn’t judge. She offers counsel and advice, empathy and understanding. And I know that she prays for us, for Aaron……prays with love and care.

Aaron was awake then, coming outside to test the waters……to see if Mom was still distant and angry. He relaxed some when he could tell that I was better. He smiled when I said that we could take Jackson for a walk around the yard.

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We walked down to the back of our yard, around the huge evergreens that hide the very back loop of our property. It’s an area that is hidden from view as you stand on our patio or look out our windows. You would never know it’s there until you walk behind the thick trees that keep it hidden.

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I stood looking at the eerie sight. Branches of the old trees there hang low, gnarled together as they bend toward the ground. A finger of the neighborhood lake curls around under the limbs, still holding water since we’ve had such a wet summer. It’s a shadowy and dark place, a little creepy even. It’s interesting, but not warm and welcoming……not a place I want to linger for long.

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As we stood there, Aaron talking and Jackson sniffing the bushes and tall grass, it hit me that this is so much like our life with Aaron. Anyone who lives with a person who has autism…..or multiple seizures…..and takes tons of meds to help them…..knows what I mean.

Aaron is funny and smart and often kind. But he is also prone to angry outbursts where he is hurtful and unreasonable. For days we may mostly see the pleasant side of Aaron, but we know that hidden inside him is still the anger and the frustration that he feels, and sometimes releases. It is not a fun place, and it is not a place where we desire to linger. Yet sometimes Aaron makes us linger there as his brain is going through whatever his brain goes through at those times.

I know that mentally and emotionally I must walk away from the shadows that threaten to engulf me when I am overwhelmed by Aaron’s behaviors. He needs me, for one thing. And I need to stay whole and strong, loving and forgiving. It’s not easy, but I must. Friends and family help. A good staff at Paradigm helps. Gary is my biggest help, taking over when I can’t. And definitely, crying out to God helps the most.

Aaron and I turned from that scene, finally, and went back out into the open yard…..to the sunshine and grass……to the full view of our welcoming house. Likewise, given a little time, he and I returned to our normal relationship. I love him dearly. I know he needs me. He needed me when he had three hard seizures during the night on Friday. But he also needed me even more when he was out of control emotionally that day. He needed me to believe in him…..to discipline him……to try to help him even when he pushes me away……to care for him and to love him.

Behaviors are perhaps the hardest part of Aaron’s disability. They are frustrating, embarrassing, and exhausting at times. Families who deal with this need extra love and prayer. Staff who deal with this need the same, as well as frequent thank-you’s for what they endure.

Aaron’s behaviors hold him back in many ways…..and could easily hold us hostage in many ways, as well. But Gary and I know that we can’t let the dark times be our focus. Like the staff at Paradigm says, today is a new day and we start all over.

We don’t always get to choose our view on any given day, but we don’t have to stay forever where the view is scary and dark.

“Today is the day that the Lord has made! Let us rejoice and be glad in it!” (Psalm 118:24)

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Wilted

I have some container plants on our front porch. They need routine watering, of course, but definitely need plenty of water during our very hot Kansas summer. A few weeks ago, I was guilty of neglecting those plants for longer than I should have. You know how it is. I just got busy with many other things. I would remember the plants and tell myself I needed to check on them, but then once again I would forget to do so in the midst of running here and there.

I had noticed my pretty Impatiens in the corner drooping a little one day, so I gave myself a mental note to water the plants that evening. But I yet again got distracted and didn’t water them like I promised myself I would do.

When I finally went to check on the plants some time later, I was sad to see that my Impatiens was completely wilted. “Beyond wilted,” I thought. “This poor plant is dead……gone.”

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I very nearly just tossed the pitiful thing in the trash can, but something made me stop. I decided to go ahead and water it. What could it possibly hurt? So I filled my watering can, gave all my plants a much needed drink, and waited to see the result.

The first time I looked at the dead Impatiens after being watered, it didn’t look any different. This just confirmed to me that it was beyond hope. But still I waited.

And wouldn’t you know, by the next day I was amazed at what I saw!!

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My once dried up plant was now thriving once again! It had sprung to new life because of simply being watered. It soaked up what it needed once that life giving need was provided.

I have gone through times in my life where the bad news and the burdens are overwhelming. Sometimes it’s been hard to handle the stress, and so I have bowed low under the pressure.

It’s during these heated times in my life that I must not let myself neglect the one important element of what sustains me…..God. He knows my situation and has even planned my path for a purpose. But it sure is easy to become distracted from Him as I feel the weight of my fears and burdens. Someone else felt this way, too, and wrote about it beautifully in Psalm 42:

“Why are you in despair, O my soul? And why have you become disturbed within me? Hope in God, for I shall again praise Him for the help of His presence.”

When we know God, it doesn’t mean we won’t suffer. It doesn’t mean we won’t feel despair. But knowing God does mean that we have hope. Hope in God is hope well placed. It’s a hope that brings us to praise…….praise for His help and His presence.

“The Lord will command His lovingkindness in the daytime; And His song will be with me in the night, a prayer to the God of my life.”

God loves us throughout each day and even gives us a song during the awful dark hours of the long nights. That song is our prayer as we lay in the stillness of night, when everything seems darker and bigger and more awful than in the light of day. Our prayer to God…..our deep groanings……our praise…..turn into a song, even when we don’t really hear a beautiful tune at that moment. But God hears and He is pleased, and He is the One Who turns our prayers into a song.

Just in the past few days I have a dear friend who found out that she has breast cancer. She will soon begin chemo and then face surgery. My brother-in-law went in for a heart cath and was told that he will need bypass surgery. A friend said goodbye to her wayward son as he moves very far away, and she feels she may not ever see him again. Another friend is watching her son’s seizures dangerously increase as she awaits a visit with their specialist in Memphis. I could keep going. It just seems like there is so much suffering and personal attack right now.

This past Monday I sat in a friend’s back yard, at her picnic table, and we along with another friend were sharing some of the ongoing situations that one friend especially is dealing with. This wonderful mother and wife, my sweet friend, suggested that we pray. She bowed her head and started speaking very comfortably with God. We all prayed, just as if God was sitting right there with us and we were including Him in our conversation……which is really the case. It was so sweet, and each of us was so encouraged in just the way that we needed.

Just like my wilted plant. We all felt like this at first –

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But after praying, we were encouraged and refreshed…..just like my plant that finally received water.

“Why are you in despair, O my soul? And why have you become disturbed within me? Hope in God, for I shall yet praise Him, the help of my countenance and my God.”

The more I wilt, the more I can count on God to give me just what I need as I hope in Him, praise Him, and rest in His arms. He will refresh me and He will revive me, even in the heat of the trials that I may be encountering.

He’s a good God and an amazing caregiver for us.

And He never forgets us when we need watering!

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The Shriveling Sunflowers

Aaron had been wanting us to plant some sunflowers for quite some time. This year I finally bought some sunflower seeds…..giant sunflowers, no less…..and while I was off to Houston to see Andrea in June, Gary and Aaron planted the sunflower seeds. They rim our garden on two sides and have grown, and grown, and grown some more. It’s been fun to watch them as they have progressed from little seedlings to what they are now. They are indeed giant sunflowers, living up to their name as we hoped they would.

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One day, though, Gary announced that he would need to move two of the sunflowers. That’s because those two thriving plants were in the way of the sprinkler head that Gary had installed in that front part of the garden. I was tempted to say that we should just throw them away. We had enough sunflowers and wouldn’t even miss those two, I thought. But something stopped me from making that suggestion. I also admire Gary’s care of our plants and animals, sunflowers included; so I just watched one day as he carefully dug two new holes, gently took those two intruding sunflowers, and placed them in their new locations.

It didn’t take long, though, to see that this move had taken a severe toll on both the sunflower plants. They were no longer standing straight and tall, but instead had drooped dramatically. “They won’t make it,” I thought one day as I went to the garden to pick some produce. “The change and the move was too much for them. We really should have just thrown them out.” You can see how pathetic they looked.

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I could have pulled them up right then and tossed them in one of our trash cans outside. But again, something stopped me……and I’m so glad it did.

I’m glad because in only six days from when I took those pictures of our very sad sunflowers, I again went out to the garden and was amazed at what I saw! Look at this!

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Both sunflowers had grown! They had not only grown, but they were each producing the beginnings of a sunflower BLOOM!!

Sure, they still looked a little worse for wear. They still carried some scars from being transplanted. Some of their large leaves were still wilted, and many of the damaged leaves had died, shriveling and brown. But if I looked up above the evidences of their past stress, I could see life……new leaves, new growth, and definitely a sunflower bloom.

A couple days later the bloom on the sunflower at the end of the front row, the one that had looked the most hopeless to me, had opened even more. Other sunflowers in that front row were now blooming as well, but this one had beat them to it and was holding its own among the taller, less damaged plants. My miracle sunflower!

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Have you ever felt like life was going along just fine? You enjoyed where you were…..what you were doing…..who was surrounding you? But one day things changed. Maybe it was over a matter of time, long or short, or maybe it was sudden. But you found yourself transplanted, in a sense, from what you loved…..from what was comfortable…..even perhaps from people that you enjoyed being around.

When life changes like that and we are put into the unfamiliar or the unwelcome or the uncomfortable places, then it’s natural to shrivel up as we react to the shock of such changes. We don’t have the strength on most days, we think, to continue on like others around us seem to do so easily. Don’t they see our pain? Don’t they feel our sorrow? And even if they do, they really don’t……totally.

But the real issue is our own adjustment to our new normal, trusting the One Who transplanted us in the first place. Why did God think it was OK to yank us out of our growing place and put us somewhere else……somewhere that we never asked to be? Yes, we said we trust the Lord and we trust His plan and all that, but we never dreamed that His plan would be so difficult.

Those sagging sunflowers had two things that I had not counted on nearly enough. Roots under the soil, and sunshine up above. The roots took hold, and the sunshine gave strength and growth, despite the trauma of being uprooted and replanted. Those sunflowers had elements fighting for them that enabled them to eventually perk up and once again grow like they were meant to grow!

Moses looked at the children of Israel in the desert after they had just crossed the Red Sea. They didn’t like being slaves, but this freedom business wasn’t all it was cracked up to be, either. They had just seen God open the waters of the sea so they could cross over. Moses then reminded them of a valuable, life changing truth.

“The Lord will fight for you, while you keep silent.” (Exodus 14:14)

Oh, how many times I have doubted God and His plan in my life! Or if I haven’t exactly doubted, I have deep down wondered about why I am where I am. I liked where I was before. I liked how things were going. But this business of having God yank me out of my place I loved……even the place He had at one time PUT me……is not all it’s cracked up to be in all the sweet devotional books I have read. It’s just hard sometimes…..and exhausting.

I have felt like my two sunflower plants sometimes. Shocked……tired…..unhappy…..positively wilted.

But what God told Israel……what He tells me……what He tells you……is still true, every single day.

He will fight for me. There’s something to be said for being rooted in Him, and for feeling the warmth of His Word in my heart even while I’m trying to adjust to this new place.

And God doesn’t need me to do anything while He’s fighting. Just keep silent. “Be still and know that I am God,” David said in Psalm 46.

My keeping silent is sometimes the hardest part of all. I want to complain…..to question…..and most assuredly to suggest to Him a better plan. A better place in the garden. A better will for my life.

But He just wants me to zip my lips and watch Him take care of every issue and every concern and every worry and every frustrating moment and every sadness. I think that about covers it.

And God will cover it, too. He will fight for me while I am silent, watching and waiting for Him to take care of the battle.

Then one day I’ll notice something. A bloom. And some new leaves. I still might feel some scars and see some not-so-pretty leaves, but I will see that I AM growing. I AM still alive after all the stress. Not because I am so strong, but because God is so able.

He did the fighting for me while I just did the lip zipping and the trusting. I may never understand the reasons for all the upheaval, but I don’t need to understand.

I just need to obey, and then to enjoy the new life that God gives me. New blooms…..new chances to thrive again……new experiences.

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An opportunity every day to look past the stress and into the face of the One Who is fighting for me with everything He has……and that’s more than enough.

Do You Wanna?

I hear it all day long. I’m not exaggerating. Honest. At least all the part of the days that Aaron is home I hear it over and over.

He walks into the kitchen or wherever I am in the morning. Most days he begins his first of many words during the day with these words. Or if they are not the first words out of his mouth, they will be close to first.

“Mom, do you wanna…….?”

And then he often stops. He just stands there, thinking of how to fill in the blank after “wanna.” I used to ask what it was that he wanted, but I’ve learned to just wait. And many times, really, he doesn’t even complete the sentence. Sometimes it’s because this question is just a habit with Aaron. Sometimes he just asks it in order to get my attention. He asks without even a plan in mind as to how to finish the sentence. Other times, he does have a motive.

“Mom, do you wanna play Skip-Bo tonight?”

“Mom, do you wanna watch The Incredible Hulk tonight?”

“Mom, do you wanna take Jackson on a walk?”

“Mom, do you wanna take me to Dillon’s?”

“Mom, do you wanna give me extra money?”

I could continue for a long time filling in the blanks to “Mom, do you wanna……?” Just like Aaron does.

But really, a majority of the time Aaron never finishes his question. It’s like the unfinished conversation cloud hanging over his head in a comic strip, waiting to be completed but never is.

All parents know that repetitive questions from young children can be tiring. So it is with me and the “Mom, do you wanna……?” But it’s not just that it’s tiring to hear it all the time.

I’ll admit that I sometimes get weary of being the usual object of his question. I know however he fills in the blank….the long pause….it will somehow involve me. I can no more than pull my chair up to my computer after a tiring day and I soon hear Aaron’s loud thumping down the stairs from his room. Thump, thump, thump down the first flight of stairs. Is he going to stop in the kitchen for a snack and go back to his room?

Nope! Thump, thump, thump down the second flight of stairs……where he then stands behind me and stares at my computer screen, maybe loudly chewing gum. And I wait, usually not very long.

“Mom, do you wanna…….?”

So honestly, at that point, I feel a little put upon. No, Aaron, I do not wanna…….

I might be tired physically at the end of the day. But there are many times that I’m tired in spirit. Like I said, tired of being the one that Aaron comes to as he fills in the blank after “do you wanna……”

It’s a normal parent emotion, that conflict between loving your child totally yet needing some space. But when your child is a grown man and he has special needs, the emotions of spirit tiredness can cause great guilt. I have nice breaks from the responsibility of Aaron while he’s at his day group. I’m very thankful for that. Yet there are times at home that Gary and I both feel the weight of being caregiver and companion to our Aaron.

My friend, Wendy, recently wrote about this on her Care Page that she has for their son, Elijah. Elijah, who prefers to be known as Mr. Speedy, has significant special needs. We’ve been friends with their family for a long time. Dan, Wendy, Jeremiah, and Elijah even came to the NHRA race at Topeka to see us and Andrew.

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So read what Wendy said:

As I read my text back to myself, ” E and Me…” I think how I often I write those words. I smirk to myself with a light heart; yet heavy sigh and realize this is my life, my calling, my journey. As the rest of the kids move on and become more independent, E and me are the constant. You can be sure you never have to wonder where E is for where you find (mom) me, you find E.

How could I ever feel lonely? I have Jesus and my super hero, Speedy, making every day a story to reread. Something about the days with my Super Speedy give me a reason to giggle and reflect on how wonderful life is with my special E. His world is heavenly; childlike and simple; the way the Lord wants mine to be.

Wendy’s sweet, powerful words did me good. Really good. Often, seeing life through another’s similar eyes is just what I need in order to see my life more clearly. As Wendy said, sometimes our lives are very childlike and simple, kept that way by the lives of our boys. I may at times sigh and wish it wasn’t so, but it is. And there is joy in that simplicity, even on the hard days.

Maybe I need to fill in the blanks to Aaron’s constant question more often. “Mom, do you wanna…….?”

Aaron, I wanna see you healthy and safe.

Aaron, I wanna see you enjoy life.

Aaron, I wanna see you as happy as you are when you find your favorite “croysants,” as you call them.

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Or as happy as you are when you always, always stand in the back corner of the elevator at the doctor’s office……so you can feel the movement better.

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Aaron, I wanna capture your ability to experience life’s simple joys with great delight, just as much as if you were looking at the Eifel Tower or the Taj Mahal. A lady bug, a dandelion, a frog, a song……they still tickle you to pieces. That’s a gift!

Aaron, I wanna continue to be your favorite Skip-Bo partner……even when you cheat, and you laugh when I say, “Cheater, cheater – Pumpkin eater!!”

Aaron, I wanna count my blessings with you instead of numbering some things as burdens.

And when I feel burdened, I wanna take it to my Heavenly Father before I unload on you.

I wanna count it all joy, and know that when I don’t, God understands and He has new mercies every morning…..new yet unchanging.

Just like something else that’s unchanging.

“Mom, do you wanna…….?

All I Need to Know

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

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

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

Oh, the complexities of his mind! The challenges of autism! Physical issues I can handle so much easier because the flesh and blood of those special needs is right there to see and somehow grasp. But the workings of the autistic mind are sometimes anyone’s guess, and this morning I was in no guessing mood.

So I launched back after his verbal barrage got to a certain point. I pointed my finger at Aaron and I very firmly put him in his place. But Aaron rarely stays in the place I put him. I may feel better for a few seconds, but then he opens his mouth and his resolve is more set than ever……his resolve to win the war, even if he loses a few battles in the process. I know this about Aaron, but I sometimes act despite what I know. I act on my feelings, and I often regret it.

The rest of the morning was filled with Aaron telling me he wasn’t going to talk to me anymore, all the while talking to me to tell me that he wasn’t going to talk to me. Over and over and over. He also didn’t want me to talk, so I mostly remained silent, which actually drives him crazy. There was no winning for either of us at that point.

Aaron went to Paradigm, wanting me to come in with him so I could tell Barb to be sure he was nice……and Barb told him the same thing I had said earlier, that he was the only one who could be sure he was nice. I don’t know for sure how his day has been. I don’t know for sure that I want to know.

We’ve had lots of storms in Kansas lately. On our way back from Topeka recently, Gary and I drove through the beautiful Flint Hills. There on the horizon were storm clouds, and we were headed straight into them. There was no avoiding the storm. No matter what road we took, the drive home led into the storm.

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And again yesterday, driving Aaron to his day group, we were facing storm clouds. There they were, dark and threatening.

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Driving into a storm reminds me of living with Aaron. It also reminds me of Moses. I’m reading the book of Exodus, and in chapter 3 God spoke to Moses in the burning bush. He told Moses of the job He wanted him to do…..to lead the children of Israel out of Egypt. And Moses said, “Who am I, that I should go to Pharaoh and bring the children of Israel out of Egypt?”

The first part of God’s answer was simply this: “But I will be with you…..”

God didn’t say, “Oh come on Moses, you’re the man! You’re so great! I know you can do it!”

Moses’ sufficiency rested only in those six words that God first spoke: “But I will be with you…..”

Moses’ sufficiency rested only in God. Not in himself…..not in his family…..not in his royal connections from years past. No. The strength and wisdom and courage that Moses needed rested only in God.

I’m not proud of the times I blow it with Aaron. I’m not proud of Aaron’s behaviors on the bad days. I often feel like Moses.

“Who am I, that I can parent Aaron? Who am I, that I can have patience enough on the bad days to tolerate the behaviors?”

And God’s answer for me is just the answer He gave to Moses: “But I will be with you…..”

It’s no mistake that I am Aaron’s mother. God put me on this road because of His sovereign plan for me and also for Aaron. I may feel on some days that I can’t do this correctly, or do it at all, but this is where God has put me. God doesn’t make mistakes.

So here I am, driving on this life road and headed into yet another storm. I know I’m not alone in this. I know of others who are feeling the pressure of the dark clouds on their horizons, and are soon overcome with rain and lightning and thunder. But if you’re God’s child, He is with you. He promises you strength, wisdom for the asking, peace in your inner being, and joy deep down. Whatever your situation…..your worry……your pain…..your secret turmoil……your fear…..your failures, God’s word to Moses is God’s word for you…..for me…. “But I will be with you….”

I don’t always feel this fact. But I know this fact to be true, this fact of God being with me, and so I can rest in that knowledge even when I don’t feel it.

After I dropped Aaron off and drove home yesterday, this was my view. All the time I was driving into the storm, just behind me was the lifting of the clouds.

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It’s true of my life, too. God will relieve the burden, even if the situation remains. He relieves my burden by reminding me of Who He is, like He did to Moses. And reminding me that He is with me, always.

Even when I say, “Are you sure, God? Did I take a wrong turn somewhere? And look how I’ve messed up!!” And He answers once again, “But I will be with you…..”

Dark clouds, or bright sky. Angry Aaron, or happy Aaron. God is with me.

On some days, that’s all I know. But on every day, that’s all I need to know.

	Patty hesaidwhatks on Mom’s Ways
	pastorpete51 on Mom’s Ways
	Nancy Ruegg on The Fringes
	Cindy Dawson on The Fringes
	Patty hesaidwhatks on The Fringes