Who Are These Special Moms?

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

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

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

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

Those dear Moms:

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

 

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

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

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I Love This Place!

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

Gary and I knew that this was going to happen:

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

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

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

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

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

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

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

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

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

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

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

Normal!  Right?!

Wrong.

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

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

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

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

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

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

Just so exhausting.

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

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

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Until he thought of Christmas lights.

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

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

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

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

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

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

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

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

But this place is where God has put us.

Aaron is God’s gift to us.

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

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

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

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

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

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

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

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

Bright like the lights of this beautiful season!

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Mom, Don’t Be Sad

Blah!  Bleh!  However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron.  The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo.  Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it.  On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought.  I guess it’s another home day for Aaron.  I had a must-do trip down to the air base scheduled, so off I went, minus Aaron.  But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm.  I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties.  I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing.  It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world.  Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm.  He was still happy when he called me later to give me a report on his day.  And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

 

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Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it.  He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always.  I reminded him that an Xbox is too expensive to buy for a weekend treat.  Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions.  Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate.  “Do you sell any CHEAP Xboxes?!”  😊  😊

Once home, Aaron helped me carry bags in the house.  He helped me make spaghetti for supper.  Never mind the broken noodles all over the stove-top.  He was trying his best.  He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

 

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He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday.  And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

 

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On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer:  “Happy Birthday to you!  Happy Birthday to you!  You look like a monkey.  You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park.  We saw beautiful Kansas prairie grasses.

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We saw lots of very old, dramatic trees.

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Aaron even happily posed for a picture.

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But best of all, we got up close and personal with this gorgeous deer.

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What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road.  But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading.  And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair.  That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed.  Like he went from being manic to being angry again, for whatever reason.  He was just upset for no reason that I could see.

He said he was not taking his pills, but he did.  He said he was not taking his CBD oil, but he did.  He said he wasn’t going to bed, but he did.  He said he wasn’t going to brush his teeth, and he didn’t do that.  Of course.  😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness.  He noticed my change every bit as much as I noticed his.  He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said.  “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly.  No talking allowed.  But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor.  “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment.  And so did I.  But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them.  Tears of frustration and sadness.  Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am.  I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean.  The ups and downs of life take a toll.  The good news and the bad news.  The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well.  Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God.  He reminded me as I laid awake for a long time of His love for me and of His unending grace.  Grace upon grace.  Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness.  He never lets me down or leaves me to my own resources.  He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise.  For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

 

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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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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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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.

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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.

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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!!

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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.

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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!

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A Lone Christmas

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

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

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

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

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

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

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

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Lone. 

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

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

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

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

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

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

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

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

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

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

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

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What Mountain?

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

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

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

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

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

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

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

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

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

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

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

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

But…

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

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

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

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

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

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

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

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

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

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

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

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

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

What mountain?

Indeed! 

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God’s Many Colors

We’ve had a couple days of stormy weather here in Kansas; and for any of you who know me, you know what that means.  Sky pictures!!  I just love looking at our beautiful skies here in the flat land, especially from my vantage point in our daughter’s former bedroom, up on our third floor.  I have taken hundreds of pictures over the years from that same spot.  These pictures show many various scenes of the same scene, if that makes sense.  No two views of our sky are ever identical.

I’ve learned a lot over the years by watching our God-given sky.  It’s no surprise that I’ve also written about it in the past.   The Skies From My Window

We get some amazing storms here in Kansas.  The variety of pictures is limitless.  I love our sky here no matter the season or the weather, but I do have to say that the most stunning skies are the ones that present themselves during the storms.  Just look at some of the shots I took during our storm from two nights ago.

From the beginning:

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To the middle:

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To near the end:

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All were gorgeous in their own unique way.

I was thinking about yet another storm that roared through during the night last night.  Bright lightning…ferocious winds…heavy rain – we got a hefty dose of all that.  God pruned our trees during the night, for sure, as we awoke to lots of small branches all over the yard.  And though I couldn’t take pictures in the dark, the vivid lightning is still fresh in my mind.

The storms outside our windows have often reminded me of the storms that also come into our lives.  Whether the storms of life come in with a soft wind that builds over time…or if the storms blow in with a gusto that knocks us off our feet…we all face them, at one time or another, and another, and another.

And just like the majority of my most beautiful sky pictures are taken during the storms, so the majority of my most beautiful experiences with God happen during my storms of life.

In fact, James  – when speaking about our trials of life – uses the word “various” to describe them.  And guess what this word can also mean?

Multi-colored!

Just like my stormy, colorful Kansas sky, so my trials are described by God as being multi-colored.  Here’s what James says:

“Consider it all joy, my brethren, when you encounter VARIOUS trials, knowing that the testing of your faith produces endurance.  And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”  (James 1:2-4)

Storms, and trials, can be intimidating and even dangerous.  But God uses James to tell us that we need to consider – to make a conscious judgment – about our multi-colored trials.  And that conscious decision is to face our storms deciding to be joyful.  This joy isn’t of our own nature, but is a fruit of the Spirit in our lives.  And sometimes it takes awhile to feel that joy, that’s for sure.

And remember that joy isn’t happiness.  Joy is a deep-in-my-heart contentment because I know and trust that the God Who brings the storm is the God Who brings it for a very good reason.  I can look ahead to what He promises will come as a result of the storm, too.

Endurance.  That means “abiding under difficulties.”

And endurance produces perfection, which is maturity.

And maturity makes me complete, which means “full development.”

These traits aren’t just academic notes on a piece of paper.  They are real characteristics of a Christ follower who has endured the many difficulties and trials of this life on earth.

Just like the most vivid skies are stormy skies, my most vivid pictures of God’s character have been taken during the storms and trials of my life.  I have learned the most about God during those rocky times that I have needed Him the most.

Sunny skies are nice, and pleasant, and restful, and needed.

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But stormy skies are teaching skies for me…huge, magnificent photos of God’s mercy…God’s grace…God’s love…God’s protective arms around me.

So when the storms come, as they certainly will, may I not spend the time hiding and worrying and doubting.

May I clearly see the storms, not as an intrusion, but as instruction.

And may I spend the time taking picture after picture of the beauty that God is painting for me, using the palette that only He holds.

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