Category: Special Needs Adults

Looking For a Smile

I was standing in the grocery store aisle one day when I noticed someone walking toward me.  I looked up to see an older woman headed my way.  I stepped back out of her way as she came nearer.  I noticed that she seemed to be trudging instead of just walking.  She looked burdened and tired.  Our eyes met and I gave her a smile.  She stopped in her tracks.

“Oh,” she said to me.  “I’ve been looking for a smile all day!  Thank you for giving me a smile!”  

And with that she returned my smile, her happy face beaming.  We talked briefly and left with a God bless you coming from both our joyful faces.  

It cost me nothing to share a smile with this dear lady, yet I felt like a million bucks as I walked away…and I dare say she did as well.

Sometimes smiles come easily.  Solomon talked about that in Proverbs 15:13 when he said, “A glad heart makes a cheerful face.”  

But at other times, I feel more like what Solomon described in the second part of that verse: “…but by sorrow of heart the spirit is crushed.”

Aaron had an epic meltdown last night.  I ended up in joining him on the meltdown wagon.  That’s never a good feeling, for me or him, but especially for me.  My spirit did feel crushed last night with sorrow in my heart.  Guilty, too, and tired.  Gary and I both were spent.

Aaron woke up happy today.  He doesn’t seem to feel the residual effects of these occasions like we do.  Later, he and I went to the store.  There in one of the aisles, I saw two women coming toward us.  In their cart was a little dog.  I knew instantly what Aaron would do.

“Aaron,” I quietly said, “do NOT pet that little dog.  Those ladies may not want you to do that, plus that dog doesn’t know you.”

Aaron, surprisingly, didn’t reach out to pet the dog.  But he craned his neck like Gumby as we walked by, and the ladies couldn’t help but notice.  Then Aaron stopped to stare some more.  

And they smiled.

So, I told them that Aaron loves dogs and asked if he could pet their little guy.

“Of course!” one of them said.

Aaron was very happy, I was relieved and thankful, and the kind ladies smiled and smiled as Aaron gently stroked the dog’s fur.  Turns out his name was Little Bit, which Aaron and I loved.

I thanked them as we parted ways.  Later, as we left the store, we passed one of the ladies and she gave us a sweet, warm smile as she wished us a good day…and I did the same.  

I could tell they liked Aaron and understood that he was special, of course.  This small interaction soothed my sorrowful heart, pushing out most of the sorrow and replacing it with gladness.

This time I was the one in the store with the burden, but two kind ladies took the time to share smiles and Little Bit with a tired mom and a chuckling Aaron.

And I believe God notices more than a little bit those kindnesses that do more than we know to lift a tired heart.

Much To Them

Some time ago I was fixing Rice Krispie Treats.  Aaron stood and watched for a minute, and then asked if he could eat some marshmallows.  Since I have never been a big fan of eating marshmallows that aren’t in Rice Krispie treats or in my holiday fruit salad, I told him that I wasn’t sure if he would like them, either.  He wondered why.

“Well, they’re mostly puffed sugar,” I told him. “There isn’t much to them.”

“There’s much to them to me!” he answered in no uncertain terms.  

Aaron didn’t realize it, but he had perfectly described how he runs his life.  What would probably seem superfluous to us is not viewed that way at all by Aaron.  Let me give some examples of what is important to Aaron in his autistic world.  Not just important, but absolutely necessary.

Aaron set the table one Christmas.  Look at his multiple forks and spoons.  At least he arranged them neatly.  He always requires several forks, spoons, and sometimes knives, no matter what he is eating.  There’s much to them to Aaron!

There is also much to the number of plates and bowls Aaron wants when he eats.  I’m so thankful for my dishwasher!

When Aaron “goes to bed” at night he reads, listens to music, works on his sticker book, and sometimes plays a game.  He starts this routine early.  A big element of his bedtime is to arrange special items on his bed in just the perfect spots and order.  This includes a stack of greeting cards that he has saved over the years, a cat book that he isn’t reading but that he must have on his bed, his back scratcher, and various items.  I just shake my head but there is much to them to Aaron!

Aaron was eating a bag of popcorn the other day.  Look at the bag and you will understand why Aaron kept telling us, “I love ridiculously cheesy popcorn!”  Or “Tomorrow I want to buy more of that ridiculously cheesy popcorn.”  And “I seem to like this ridiculously cheesy popcorn.”  What seemed ridiculous to us meant much to Aaron.  What’s printed on the bag is part of the name, people!  We just smiled.

Yet there are times when the things that mean much to Aaron can cause great frustration and anger when they don’t work out as he expects.  One of the biggest issues for him is when his schedule is disrupted.  Whatever…or whoever…causes the disruption is often the object of Aaron’s deep frustration.  His tongue can be hurtful, and his anger can be deep when things don’t go his way.  We work on that all the time and praise him when he handles change well, like he did at Christmas.

It’s easy to get very frustrated with Aaron when he won’t budge out of his routine…won’t quit talking about the same topic of interest over and over and over…runs out to our neighbors when they’re taking a walk so he can talk to THEM about said topic…won’t wait patiently for hardly anything…and so many other issues.

Autism is so complex, and everyone is different.  Yet every single autistic person has those tightly held focuses that are “much to them,” and they are not going to let go of those things.  

It’s best to try to understand that fact and then work with them with as much love and understanding as you can muster.  

I know from many years of experience with Aaron that it isn’t always easy, but it’s always best to attempt to approach issues from his viewpoint to better understand why on earth he’s reacting the way he is.  

And always, eventually…when the dust settles…to show him by my words and actions that he matters.

To show him that his unique ways are worth my time…that “there’s much to them to me.”

And therefore, Aaron, “there’s much to YOU to me!”

My Adornment

It was Christmas Eve morning, and I was preparing for a day full of cooking and family fun.  The day before, I had pulled off my plan for an “Aaron day” without a hitch.  I wanted him to have time doing what he loves before all the commotion of Christmas wreaked havoc with his routine and therefore with his behaviors.  Our son and his girlfriend, just in for the holiday, joined us at All Star Sports for some Aaron-style fun.  Afterwards, we ate at Old Chicago, a favorite of Aaron’s.  It was a great time!

But early the next morning I heard Aaron having a big seizure.  This was a bed wetting one.  So mixed in with my cooking and all the other Christmas prep, I found myself hauling loads of bedding to the laundry room.  My main emotion was sadness for Aaron that day as he had two more big seizures over the next several hours.  

Yet these moments also drive home to me the fact that caregiving is my life.  It’s a life I never envisioned for myself when I contemplated marriage and motherhood as a young starry-eyed woman.

Every mother lives a life of self-sacrifice in many ways but having a child with special needs of whatever kind increases that role in ways she never knew.  Any caregiving role is the same.

That is why I was so impacted by some verses I read one morning.  Paul was talking to Titus about practical ways that we as believers are to live out the gospel.  In chapter two of Titus, Paul gave instructions to older men and women as well as to the younger men.  

He ended that section by urging slaves to conduct their lives in a way that they would “…adorn the doctrine of God.”

In that culture, slaves were nothing.  They were the lowest of the low.  Yet Paul told Titus to encourage them to adorn the doctrine of God, the gospel.

This is a high calling for such a lowly people!

The word “adorn” carries the meaning of arranging jewels in a setting that displays their beauty.  

I love what John Stott said about these verses:  “…the gospel is a jewel, while a consistent Christian life is like the setting in which the gospel-jewel is displayed; it can add lustre to it.”  

Our human tendency is to equate importance with the “big things.”  Red carpets, book signings, conference speakers, a record contract.  

Not with wet bedding, doctor visits, behavior issues.  

Not with dementia, hospice, hospitals, infusions, cancer…

But the gospel shines brightest in the darkest places.  This is where God is especially honored and given great glory.

How?  By our faith being seen in our service to the ones we are caring for.  By yielding to God’s plan for our lives with trust and peace, even through tears or anger or resentment that inevitably comes at those vulnerable moments.  

It’s a matter of my heart, not my surroundings.  

“Slaves, in all things obey those who are your masters on earth, not with external service, as those who merely please men, but with sincerity of heart, fearing the Lord. WHATEVER YOU DO, DO YOUR WORK HEARTILY, AS FOR THE LORD RATHER THAN MEN.”   (Colossians 3:22-23)

Where do you find yourself today?  

Remember that the seemingly lowest place is the place of high calling in your life as a believer.  

Even if we feel like no one notices our service, God still urges us to shine with the beauty of the gospel.  God notices and that is all that really matters. 

 

Am I Ready?

It was November 7, 1984.  Gary and I lived in Colorado Springs.  I was one week into my 9th month of pregnancy with our first child.  Gary had just returned home from flying his Army Cobra helicopter.  I headed up our stairs when a pain hit me.  Gary saw me from our bedroom as he was changing out of his flight suit.

“Now?” he asked with surprise.  

I soon knew that, yes, the time was now.  We hurried to Fort Carson and just a few short hours later we welcomed Aaron into the world…into our world.  

I had been busy making all his nursery items.  The yellow and white gingham curtains, bumper pad, and changing table cover were waiting on Aaron.  But there were still things to do, like putting the crib together and finalizing all the other details of his cute yellow duck nursery.  We just weren’t all the way ready for Aaron to join us three weeks early!

In so many other ways over the 40 years of our life with Aaron, I have found myself still not ready.  Not ready for this journey of Epilepsy, Autism, and having our adult son still living with us.  Not ready for the hundreds of ways that our life is not at all what we thought it would be as we held our little 6 lb. 4 oz. squirming bundle in that old military hospital on Fort Carson.

In so many ways, Gary and I are set apart from our peers even at this stage of our lives.  We are not free to come and go as we might wish.  Aaron is entwined in every decision we make.  And when I meet someone new and we are getting acquainted, the usual response when I tell them that we still have our adult special needs son living with us is, “Oh.”  Most people don’t know what to do with that scenario and so they quickly move on to other topics. 

Aaron can be so funny.  He is just who he is, too, especially in public.  But even that can be a bit embarrassing to us as he does his Aaron things, oblivious to what others are thinking.  Like sitting in the grocery aisle to examine his latest food find.

Or sitting on the floor in every waiting room now so that he can work on his sticker book, even rearranging a chair or table if needed.

I have thought a lot about Mary especially now as we retell the Christmas story at this time of year.  When Gabriel told her that she would become pregnant and give birth to Jesus, God’s Son, she humbly said, “Behold, I am the servant of the Lord; let it be to me according to your word.”  

She must have experienced so much embarrassment as her condition became known.  Did anyone other than Joseph really believe her story?  The gossip, the looks, the questions…how she must have been set apart from everyone in that small town.  

Mary gave birth far from home, surrounded by animals in a dirty stable.  Not even her mother was there to help her.  I doubt that the scene was like the ideal pictures we see on our Christmas cards. 

Then the move to Egypt to escape Herod and coming back to their hometown of Nazareth a few years later where everyone knew Mary’s story of her past.  

Was Mary ready to be the mother of Jesus?  Ready for the turmoil that surrounded Jesus? Ready for the fear as she watched Him being hated and persecuted?  Ready for the extreme heartbreak as she watched him tortured and put to death?  

I doubt that she was.  But she had already made the most impactful decision of her life when she yielded to God’s will for her life.  

That same yielding to God is what brings me the deepest peace as well, even in the fear of Aaron’s seizures.

Peace, eventually, during the frustrations of his behaviors.

I know, and so can you, that “…the God of peace…even Jesus our Lord, will equip you in every good thing to do His will, working in us that which is pleasing in His sight, through Jesus Christ, to whom be the glory forever and ever.  Amen.”   (Hebrews 13:20-21)

We don’t know what it is that will please God in our lives.  

But we can be ready if we know and follow Him, trusting our loving God as we, like Mary, say, “May it be to me according to Your word.”

The best gift we can give Jesus is our heart and our will.

May each of you have a very blessed Christmas season as we celebrate the birth of such a Savior!  

Big News and A Fun Fall

Time for another update!  First, the big news…news that some of you know and some don’t, so I get the joy of sharing it again.

Our daughter, Andrea, came over one day with a gift bag for us.  I was puzzled as I took out this framed picture.

Puzzlement turned to pure joy as we realized what it meant.  As Aaron says, “We’re going to have another baby!!”  We’re so happy and so thankful for God’s great blessing.  

Then several weeks later, another surprise.  We were given a pumpkin and inside…well, see for yourself.

Now Aaron tells everyone, “We’re having another baby.  My sister is having a GIRL!!  I’m scared to have a GIRL!!”  🙂 

We’ve been having a beautiful fall.  We got to introduce Ryker to the fun of jumping in leaves. 

Then Aaron wanted to lead us on a walk around our neighborhood pond.  It was really a precious time of Ryker happily following Aaron, and Aaron turning around to keep an eye on Ryker. 

 Ryker now says Aaron’s name fully and clearly.  He absolutely loves his fun Uncle Aaron.  And Aaron is responding with more interactions and smiles.  We do not take this for granted.  All of us are so very happy and thankful for the loving progress that has been made.  

Another very fun event was taking Ryker trick-or-treating in our neighborhood.  We didn’t know if he would wear his outfit, but he did, and he loved every minute of it.  Of course, this Gramoo was smiling from ear to ear at our adorable little cow!

But another precious part of the evening was that Aaron really wanted to go along.  He wore his Pharaoh costume from two years ago and was as eager as a young child.  

I wondered if anyone would question it when they saw a bearded, balding man at their door.  Thankfully, everyone was kind as could be and Aaron had so much fun. He and Ryker going trick-or-treating together was just another very sweet time.  

Aaron turned 40 this month!  He doesn’t see the significance of that at all.  It’s neat that age doesn’t mean a thing to him.  He doesn’t focus on the fact that he’s the oldest in our family and he doesn’t compare himself to his siblings in the sense of life events or accomplishments.  That’s a real blessing indeed.

I have mentioned thankfulness in this blog several times.  We truly are thankful for every blessing, for every step of progress with Aaron, and even for the steps backward that are an inevitable part of Aaron’s life.  

We are forever grateful for the love of family and for the joy of time together. Thankful, too, for friends like many of you who love and pray for us. 

 And for the certainty that God will guide us in each day and year ahead.

No Water! No Deal!

Wednesday morning seemed just like any other morning until my husband stepped out onto our back patio and discovered water bubbling up into our back yard and between our bricks on the walkway.  Oh boy!

Gary was able to cut the water off at the meter and line up a plumbing company.  They came, did a lot of looking and some digging and some poking and some figuring.  Then we did some questioning and some signing and some down payment paying…only to be told that they couldn’t get to the job until the following Tuesday.  What?!  

That’s a LONG time without water!

So, we did some calling and some discussing and some cancelling and some finding of new plumbers.  

We also did some filling of large water containers that Gary wisely has had on hand for just such emergencies, turning on the water just long enough to get the job done.

The new plumbers came the next day and got right to work.  They worked late, digging and examining in a trench that starts in our back yard, wraps around the side of our house, and ends near the street in our front yard.

There were bumps along the way, like damaging a sewer line that thankfully was an easy repair but meant no flushing all day Friday.  TMI, I know, but I’m just being real.  And it was getting real bad!  

Location services had to come out more than once to correct mistakes they made in locating the cable and other lines.  That’s comforting, right?

The workers were so nice and a pleasure to have around.  They worked very late Friday night and were able to get our water back on!  You can guess the first thing I did.  Actually, it was the first three things I did…flush our three toilets!!  And clean like a mad woman!

The plumbers were coming back on Saturday to hopefully finish the job, but heavy rains during the night and all day Saturday put a stop to that.  Now the trench is full of water and the continuing rains leave us unsure of when the work will be completed.

But we have water!!  And more importantly, Kansas has gotten some MUCH needed rain.  We are not complaining!

As this all progressed, we were concerned about how Aaron would handle it.  Having no water is a huge deal, and huge deals are often a no-deal to Aaron.  He surprised us, though, with how well he did.  He was intrigued with the digging and getting to see the pipes under the ground.  The workers were so kind to him.  They got a kick out of his excitement.  The supervisor even saved the ruptured piece of pipe to show it to Aaron and explain what had happened.  

But by Friday morning Aaron was close to being done with all the no water business.  I knew we were near a boiling point with him when he told me that he was NOT letting me have any of his Halloween candy like he had promised the night before.  

And to finalize his decision, he added:  “I am NOT making a deal with you, MOM!!”

Imagine my surprise when later he walked in the room and laid this on the desk in front of me.  

He chuckled and rubbed his hands together.  

“We don’t need a deal,” he said.  

“You want me to have this?” I asked.

“Yes!” he answered.  “Eat it!” 

He understood when I told him I would wait…that candy first thing in the morning is too much for me.  

All this situation with having no water, though, has made me think about something that has been on my mind a lot since the horrible hurricane damage in the southeast.  I have thought and thought about the impact of such terrible personal destruction on those with special needs.  

How on earth are they surviving?

How are families handling the upheaval and its effects on their special family members whose whole world has been turned upside down, destroyed, and perhaps forever gone?

My friend in western North Carolina talked to me about her daughter who has autism, how she stepped up to the plate at the beginning and was so helpful at home and with neighbors.  But as time went on it was getting harder and harder to handle the constant pressure and stress of routines being completely disrupted and of doing things not normal for her.  Then come meltdowns and anger, which are terribly difficult for the family already dealing with more difficulties than imaginable.  

I have wondered what Aaron would be like in a situation like this, where everything he knows and expects and demands is gone.  I can’t even fathom it.  A couple days without water and he was approaching the done point.  Imagine everything being gone for weeks and weeks, forever even, and what that would do to him.

Imagine the untold number of families in these areas whose special children or other family members are enduring just that, a million times worse than our small inconvenience.  

So many special needs individuals with so many needs that are special to them.  Needs they can’t control but that must be met as much as possible.  

How they need our prayers!  

Let’s not forget them.  

A Big Small Kindness

We were on our way to our daughter and son-in-law’s house one recent evening.  Andrea is struggling with pregnancy nausea.  I asked her if there was something that sounded good to her that we could pick up for supper.  She thought a Burger King Whopper like she had successfully eaten a couple days earlier would work.  

Aaron was going with us and was super excited at Andrea’s choice because a whopper always sounds great to him.  Including him in the supper plans was Aaron’s idea of a perfect plan!  

We went inside to pick up Andrea and Kyle’s order and to place our own.  Aaron was beyond excited, rubbing his hands together and rapidly placing his order before the attendant even had time to ask if he could help us.  

Now, in this moment I can gauge the mindset of workers in restaurants or stores as they encounter an exuberant Aaron.  Some are wary and curious about Aaron, unsure of how to interact with such unusual behavior from an almost 40-year-old balding grown man.  Others are calm and very friendly, with understanding exuding from their demeanor.

This young man behind the counter was the latter.  He was completely relaxed with Aaron, smiling and engaging him in friendly banter.  Aaron recognizes this attitude as well, though he could never sit down and explain it to us.  He just knew that this person was being nice to him, and he reacted with even more talking as he bent over and rubbed his hands together rapidly.  Someday I would not be too surprised to see smoke rising from his hands!

Then Aaron saw the paper Burger King crowns laying on the counter.

“Mom, can I get a crown for Ryker?” he loudly asked.

I said yes as I glanced at the worker.  

“Of course you can,” the young man happily said.  

“Can I have one, too?” Aaron asked.

“You bet!” our new friend replied.

Aaron placed the crown on his head.  Of course, it was too small.

“Here,” the young man said, “let me adjust that for you.”

He reached over the counter, took the crown, made it bigger and then placed it back on Aaron’s head.  

By this time, Aaron was doing his little happy hop, and I thought the kind worker might just join him.

Here was this guy with skull tattoos all up and down his arms, showing love to our Aaron, and I wanted to hug him, skulls and all.

He filled Andrea’s order for a slushy drink.  Aaron’s big eyes lit on that, and he wanted one as well.  I agreed, so our happy worker filled a cup for Aaron.

“Put your card away,” he said as I took out my debit card.  

He wouldn’t hear of me paying for Aaron’s drink.  

I looked into the eyes of our skull tattooed, rather rough looking worker, and saw kindness.

“You have a very kind heart,” I told him.  “Thank you so much.”

“Well, I try,” he replied.

Kindness certainly comes in all shapes, sizes and forms, doesn’t it? 

Aaron pretty much makes an impression everywhere he goes.  But so do those who reach out to him with love and acceptance.  Those people touch our lives more than they know.  

I am so grateful for the love these kind ones share with us as they interact with Aaron.  It’s a love that grows both in our hearts and with others.  

I have experienced great love shown to Aaron from some of the most surprising people.  Some of our Meals on Wheels clients, for instance, live in very difficult circumstances yet they show Aaron a sweet love that is beautiful to see every week.  

Our skull tattooed Burger King worker is not one who would necessarily be the person I would have picked to be such a blessing to us on that day, but he certainly was.  

It’s a huge reminder to me to not assume a person will behave in a certain way based on their looks.  

Sometimes those who may seem like the least according to the world’s standards end up being the ones who really do the most in the ways that count the most.

There’s no such thing as a small kindness in God’s eyes.  He sees each one as big.

And I’m so thankful for those big, small kindnesses in our life with Aaron!

Uncle “Awa” Update

Once again, it is way past time for a family update.  Lack of time and often no lack of tiredness sure make it hard to write like I want.  Or like I used to long ago.  Anyway, here I am at last.

Can you tell from my title what sweet news we have about Uncle Aaron?  This past Saturday evening at supper, Ryker started pointing to Aaron and saying, “Awa.”  He did it over and over and was so happy at our reaction.  Aaron was his typical unemotional self, but Ryker didn’t care.  He kept pointing at Uncle Aaron and saying “Awa.”  And he didn’t want Aaron to leave the table.  

We could tell, though, that Aaron was pleased and later he told me that it made him happy.  He told his staff at his day group, too…a sure sign that it makes him feel special.  It was such a sweet and heartwarming moment to see Ryker saying Aaron’s name in his own precious little way.  

Aaron still likes to share with Ryker, and is playing more with him, too.  It’s mostly playing in small ways but it’s a good start and shows that Aaron is getting more comfortable with his little nephew.

Aaron claps quite often, and often those claps are ear splitting.  I’m sure he could win a clapping contest, hands down!  (Sorry.  That was corny.) Ryker watches Aaron closely and has now started copying Aaron when he claps.  First comes Aaron’s super loud claps, followed by Ryker’s little baby claps.  And then come lots of smiles from all of us.

One day Aaron let out his deep “Ho Ho Ho” laugh and Ryker suddenly copied it perfectly.  It was hilarious!

Last week we went over to Andrea and Kyle’s, stopping on the way to pick up some burgers.  Aaron saw the BK crowns on the counter and asked the worker if he could have one for Ryker.  This young man happily said yes and then offered one to Aaron.  It was another sweet gesture from Aaron to Ryker.  

Aaron still has his moments of uncertainty and jealousy, evident in the statement we hear the most when Ryker is here:  “You don’t say that to me.”  

Or:  “You don’t bounce with me.”  

And here’s one, said after I commented that Ryker is adorable:  “Do you think I’m adorable?”

We always assure Aaron of our love and call to his attention the ways that we show him that love in an adult way.  There are times we are still walking on eggs with him when Ryker is here.  Aaron does love our full attention and to share with anyone else, not just Ryker, often goes against his grain, especially if that sharing interferes with Aaron’s sacred schedule.

But all in all, we see huge improvement and it’s truly a cause for praise to the Lord as well as being sure to praise Aaron for ways that he is being nice to Ryker.

And we have one more bit of great news.  Andrea gave us this picture a couple weeks ago.

Ryker will be a big brother next May!!

We are thrilled and so very thankful!

Aaron is not quite as thrilled, but he isn’t totally against the idea, either.  He has told people that he doesn’t want Andrea to have another baby but then he tells others about the coming baby in an excited way.

Typical Aaron, up and down, depending on the moment.

Typical me and Gary, depending on the Lord for patience and wisdom, which we do not always show.  

But remembering to be thankful for every victory and every bit of good news.

Uncle Awa.  

That’s some very sweet news right there, times two!

Lean On Me, Aaron

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

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

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

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

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

  

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

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

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

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

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

So, who do I lean upon?  

God.

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

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

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

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

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

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

Faithfulness to God, and faithfulness to our Aaron.

Knowing that this is also true:

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

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

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

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

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

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

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

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

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

Important Uncle Aaron

It’s been way too long since I’ve given an update on Aaron in his life role of being Uncle Aaron.  All in all, Aaron has made great progress.  But our road with Aaron is never without some bumps…or sometimes potholes!

Ryker is now 19 months old.  He is talking and showing more of his cute personality.  Aaron is fascinated with this and is showing more interest in Ryker, which we all thought he would do once Ryker had a few more months under his belt.  Aaron sees him more now as a little fellow human and not just a strange little baby. 

Aaron loves giving Ryker food or toys, and Ryker is very happy to receive them.

Yet when he tries to get Uncle Aaron’s attention to get a response from him, Aaron doesn’t know what to do, so he doesn’t do anything.

 Aaron’s lack of response to Ryker is very similar to how Aaron reacts so often to us when we get a little too close for comfort, like wanting a hug from him or a confirming verbal response.  Aaron will often back away from anything that makes him show too much emotion, especially if it’s on our terms and not his.  

Aaron likes to show Ryker his special items, like these rocks that he wanted Ryker to see.

Ryker especially loves Uncle Aaron’s room because it’s full of all sorts of cool things to touch and pick up and pull or throw…sometimes to Uncle Aaron’s delight and sometimes to Uncle Aaron’s dismay.  But it really makes Aaron feel special to see how much Ryker loves his bedroom.  

However, despite all the progress Aaron has made, this little fellow human can still sometimes make Aaron feel like he has been displaced in our home and our lives.   

“Ryker takes away my importance with Mom,” he said to a friend one day.

It’s a very telling and heart-rending statement from Aaron.  He truly has had so many adjustments to make as he learns to share his life…our lives…with this new little member of our family.  

We all assure Aaron that his place in our family has not changed one bit.  I have told him that love isn’t divided; it’s multiplied many times as God brings new people into our lives.  A friend told me that her family has talked about how our hearts grow bigger as we have more people to love.  We don’t push anyone out, we just grow bigger hearts to make room for more people to love.

Aaron listens to these words, but he still struggles with wanting to be the center of attention.  When Ryker gets more attention, then Aaron feels like Ryker is more important in our lives.  It’s a fine balancing act for all of us.

Kyle, Andrea, and Ryker came over a few days after Kyle had returned from being at sea for 3 months.  For two solid hours, they both gave as much of their full attention to Aaron as they could.  This included getting on the floor to put stickers in Aaron’s sticker book with him.  And listening to Aaron talk literally non-stop about all his interests.

Their understanding and patience with Aaron mean the world to us. 

We all see that Ryker, even at his young age, is looking at his Uncle Aaron in a way that shows he is already trying to figure out what makes him tick.  He’s trying to say Aaron’s name and the other night, after Uncle Aaron gave one of his loud claps, Ryker did the same with his sweet pudgy hands.  

We all gave each other knowing smiles.

Ryker will have a front row seat to Aaron’s world and with it will come the invaluable knowledge that special Uncle Aaron is really a very extraordinary gift from God.  

Despite the potholes in our family road, I believe Ryker will be all the richer for having his special…and important…Uncle Aaron in his life.  

And I also believe that Aaron’s heart will continue to grow and grow because of his little nephew that made him Uncle Aaron.