Category: Peace

Hanging Off – Or On?

Aaron has a way of repeating what we say but changing just one word or even just one letter, and so making us laugh or pause in thought.   He has a uniquely Aaron way of expressing himself.

That is, after all, the reason I started this blog and the reason I named it He Said What?!

For instance, yesterday we had some rough weather move through our neck of these Kansas woods.  Aaron was concerned, asking about the storms and wondering if he should turn off his computer.

I’ve often shown him the radar and pointed out some storms headed in our direction. I sometimes refer to them as a clump of storms coming our way.

So, as he followed me around the house and fretted over his computer being hit by lightning, he said, “Mom! Is that lump of storms going to hit us?!”

Two words, so similar, yet somehow the difference was enough to make me laugh.

Aaron has become a fan of the television show Chicago Fire.  In December the fall finale had the typical…and very unrealistic…cliffhanger.  Aaron has talked and talked and talked and talked about those canisters in that basement, surrounded by fire, and whether they would blow up or not!!!

I told him that this was a cliffhanger.  Aaron, who is very literal, saw no cliff in that fall finale.  He also saw no one hanging from a cliff in that basement.

I therefore…and not for the first time…explained that a cliffhanger is when the show’s producers leave you hanging on after the last show of the season in order to make you come back and watch the first show of the new season.

Hanging ON.

But here is Aaron’s take:

“MOM!!  I can’t wait till January 8th!!

Then he waits for me to ask why he can’t wait till January 8th.

“Because that’s when Chicago Fire comes back on!!”

Then he waits for me to show excitement.  I am a good actress.

“Remember how they left us hanging OFF??!!”

Then I laugh.  He thinks my laughter is an expression of my excitement over Chicago Fire resuming.

But my laughter is really about the way he changed my original phrase.

Are we hanging ON…or hanging OFF?

His change-up of that one little word has had me pondering over the past few days.

Hanging OFF a cliff is a scary situation, to put it mildly.

Hanging ON, to me, conveys hope.

In life, when I am hanging off a cliff of fear or dread or disappointment…or any number of other scenarios…I must remind myself to hang ON.

I hang ON to God and to the hope that He gives me.

How often our life with Aaron changes!  We can so quickly go from enjoying life:

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To the suddenness of seizures:

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The above picture was right after Aaron’s third seizure on Christmas Eve, just as we were getting ready to play Christmas Bingo as we Skyped with Kyle and Andrea from Houston.

It’s a stretch for Aaron to want to play games.  My first heart reaction was to wonder why.  Why must he have a seizure when he was actually willing to sit with us and play a game?

Sometimes his seizures keep him from participating in something that he really wanted to do.  That makes me sad for him.  Disappointed.

He did arouse enough to play Bingo, but I played his card because he was uncoordinated and shaky…and grouchy, which is typical when he plays Bingo.

Every day…every situation…can be a cliffhanger with Aaron.  Will we have seizures to manage?  Behaviors to handle?

I do feel like I’m sometimes hanging off a cliff, holding on for dear life, afraid of what’s next and afraid of falling…of failing.

But then I must remind myself that I’m not alone.  I know and trust God.

And I hold ON to Him.

I don’t understand everything.

I don’t even like everything.

But I love God, and I know He loves me.

So whatever cliff it is, I do know that I’m not just hanging off.

I reach up and I hang ON to God.

He lifts me up and He rescues me…not from the situation, necessarily…but from the danger of despair and hopelessness that can so easily overwhelm me.

After all, look at what God says about Himself in Psalm 91:15:

 

“He will call upon Me, and I will answer him;

 I will be with him in trouble;

 I will rescue him and honor him.”

 

May I remember, every day and in every cliffhanger, that I don’t need to just hang off.

I can hang ON…to the God Who rescues me.

 

 

The Skies From My Window

Many of you know that I love taking pictures of our pretty Kansas sky.  My favorite place to take those pictures is from the window in one of our upstairs bedrooms.  This bedroom will always be, to us, Andrea’s room – even though she moved from home several years ago.  When I see a particularly pretty sky I will run upstairs, open the window and lift the screen, and fire away with my phone camera.   

As I look back on these pictures, I find that no two are the same.  Absolutely every shot of our sky, on every day that I took those shots, is entirely different……if there are clouds involved, that is.  I don’t usually take pictures of a totally blue sky, though blue skies are nice.  But after a while, completely blue skies would be a little boring. 

Sometimes the pictures are simply beautiful, like the one I snapped last night.  Isn’t this just breathtaking?

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Some inspire awe, like this one.

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Sometimes I see life.

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Other times the seasons show themselves.

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This one view, from the same windows…..the same vantage point……is anything from being the same, day by day. 

It’s a lot like my circumstances in life……like yours, too, I’m sure.  Our circumstances change, sometimes often and other times less frequently.  At times the changes are dramatic.  Other times the changes come subtly, but they come regardless.

Our circumstances may be pleasant, and some of the changes we go through can be happy and pleasant as well.

But other circumstances are painful or shocking, involving deep hurt……fear……dread. 

Last week I found out about two friends who were just diagnosed with cancer.  And I took another friend for some testing after an X-Ray showed something suspicious.  We are still awaiting her results.  Some have already received disturbing news…..others are still waiting, with dread, on what may be.

My circumstances……my surroundings……can on one day fill me with peace and on the next day fill me with worry.  It’s like my view of our sky from the upstairs windows.  Sometimes peaceful…..

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Sometimes stormy……

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I’ve been reading through the book of Exodus.  Moses certainly experienced a variety of circumstances in his life……plenty of high’s and low’s.  From a basket in the bulrushes to the palace.  From the palace to the desert.  From shepherding sheep to leading a nation.  From the parting of the Red Sea to the grumbling of that unhappy nation.  From speaking to God on the mountain to confronting idol worship at the foot of the mountain.  From obedience to anger. 

After the Israelites had given up on Moses and turned to worshipping the golden calf, Moses and God both were pretty angry.  Moses went back to God after things settled down a bit and he prayed.  He said, “God, let me know your ways that I may know you….” 

God’s answer? “And He said, My presence shall go with you, and I will give you rest.” 

God’s presence is all that His people needed……and it’s all that you and I need.  He’s promised to be with us, and He’s promised to give His children rest. 

Two things I’ve learned in the years that I have lived.  First, don’t look to my surroundings for rest…..even in the good times.  When life is going well, with sunny skies and soothing views ahead, those things should not be the source of my rest and peace.  I’m thankful when life is pleasant, but pleasantness is not the source of rest.  Only God is to be my strength and my peace.  Knowing Him and depending on Him, following Him and trusting Him, is still the number one thing I need to do when the skies are sunny and beautiful.

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Second, I’ve learned to also not let my surroundings…..my circumstances……pull me down and rob me of rest.  This happens so easily when skies are stormy and life is stressful.  Bad news…..stressful relationships……more bills than we have money……wayward children……    We all know what it’s like.  Life is full of the hard times, unfortunately, and they often happen suddenly.  At other times we live under the stresses day after day as they gradually take their toll.  But still, the rough times are to be a time of rest……..and they can be if we know the same God that Moses knew. 

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For God’s promise to Moses is our promise as well:  “My presence shall go with you and I will give you rest.”  (Exodus 33:14)

Remember I said that pictures of blue skies would get boring?  I love blue skies, but honestly the best pictures occur when clouds are present. 

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So it is with us.  I believe the best lessons are learned when we have some clouds in our lives.  Deeper trust and greater joy have been my experience during the stormier times of life. 

Those clouds also bring a more intimate walk with God, full of so much beauty.  Hopefully I can reflect Him more as I walk closer beside Him. 

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And I can rest.  I don’t know today how God will give me rest, but He has said He will and I believe Him. 

Rest, and enjoy the view, because with God life is stunning.

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What Am I Cultivating?

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

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

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

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To this:

 

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Same ground, but different cultivating.

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

 

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

 

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

 

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

 

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

In other words, to cultivate faithfulness.

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

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

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

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

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

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

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

 

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And not this:

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

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

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

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

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

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

Whatever is your situation, just remember:

CULTIVATE FAITHFULNESS!

And just watch what God will grow in your life!

 

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Lens #1

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

 

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

 

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

 

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

 

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

 

Aaron: Number one.

 

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

 

Aaron: Number one.

 

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

 

Aaron: The first one.

 

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

 

Aaron: Number one.

 

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

 

Aaron: The first one.

 

Dr. Nelson: Let’s try number seven…..

 

Aaron: Number one.

 

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

 

Aaron: Number one.

 

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

 

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

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

Through what lens am I looking at my life?

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

 

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

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

God is my lens #1.

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

 

When darkness veils His lovely face,

         I rest on His unchanging grace;

         In every high and stormy gale,

         My anchor holds within the veil.

 

         His oath, His covenant, His blood,

         Support me in the whelming flood;

         When all around my soul gives way,

         He then is all my hope and stay.

 

         On Christ the solid rock I stand;

         All other ground is sinking sand,

         All other ground is sinking sand.

 

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The Hard Parts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hard parts.  All around me were hard parts.

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

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

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

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

Is Aaron cured of his Epilepsy?  No.

Is Aaron cured of his autism?  No.

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

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

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

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

Like Jeremiah said:

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

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

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

 

 

 

 

Work, Work,Work!

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

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

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

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

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

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

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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.  😊

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

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

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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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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You Are With Me

One of our worst fears was realized on Saturday, March 2.  I mean, far worse things could have happened, I know that.  Yet it was a very scary day for us.

Aaron started up our stairs from Gary’s study, but had only taken a couple stairs – best we could tell – when he was hit by a drop seizure and fell backward.  The crash was startling!  Gary was nearby and I was in the kitchen at the top of the stairs.  We both immediately knew what had happened as we heard Aaron seizing.

It was a blur of blood, and panic (from me!), and fear and realization that Aaron was hurt.  He had hit a file cabinet, actually bending the bottom metal handle…with his head!  We got him to our nearby ER as soon as he could walk, which happened fairly quickly.  Aaron was coherent and I had finally calmed down, and Gary was his always strong presence – thank God!!

I’ll write more about that day later, but after our pastor’s Sunday morning message yesterday, my mind was drawn back to one of the scenes from that day in the ER with Aaron.  Poor Aaron had a huge gash in the back of his head.  We knew he would need staples.  Thankfully, the CAT scan showed no other head or neck damage.  Finally, it was time for the staples to go in.

Aaron had never had staples up to this point.  Aaron is one tough young man.  He’s endured so much over the years with his seizures.  But these staples scared him, for reasons I’m sure all of us can totally understand.

He rolled over on his side, face away from me.  So, I went around his bed and I knelt beside him, my face close to his.  I held his hand, and I rubbed his arm and face.  The first staple penetrated his scalp.  Aaron flinched and closed his eyes.

He kept his eyes closed for the rest of the procedure, grimacing with each staple.  I so much wished that I could trade places with him!

“What more must he go through?” I thought.

“Ow,” he softly said a few times.  But Aaron was calm, strong, and so brave…despite the pain that I’m sure radiated through his head, not only from the staples but from the hard hit.

Later, as Aaron talked to various people and at various times about his experience, I noticed that he talked about me being beside him.  Even though his eyes were closed, and he couldn’t see me, he knew that I was there as I talked to him and patted him and assured him that everything would be fine.  It meant more to Aaron than I realized.

Pastor Bob’s message yesterday at church was on Psalm 23.  We all know this Psalm, including verse 4:

“Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me…”

As we walk with God, through whatever valley He leads us, He is with us.

As I walk with God, through whatever valley He leads ME, He is with ME.

God is with me.

He is kneeling beside me…He is holding my hand…He is leading me…He is walking beside me.

Whatever my valley.  My sadness.  My fear.  My uncertainty.  My questions.  My anger.

You.  Are. With. Me.

Four simple yet profound words.

I can imagine God stroking my face as my eyes are clinched tight, trying to block out the pain of my situation.

I can see Him holding my hand as He leads me on an unwelcome path.

I can feel His arm around my shoulder as He leans into my world, urging me to lean into Him and His strength.

Even though I can’t physically see Him…even though I can’t actually feel the touch of His hand on mine…and even though I don’t understand at all what He is allowing in my life…this I do know.

You are with me.

And I am not alone.

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