Category: Epilepsy

Aaron’s Move: It’s Easier There

Aaron called me first thing this past Friday morning.  He calls first thing every morning from his group home.  We’re very glad we bought him a cell phone, but still…..

His voice was low and flat.  He immediately told me the reason.  He was having some intestinal problems.  This is nothing new for Aaron but it’s the first time he was having to deal with this issue at his group home.

“Mom?” he asked.  “Can I come home?  It’s easier there.”

I was still rubbing sleep from my eyes and wasn’t mentally prepared to wisely deal with this, much less handle the onslaught of my sudden emotions.

I did know, though, that this was our first test.  And as Aaron and I talked, I also knew that if I caved, I wouldn’t be allowing the staff both at this group home and at his day group the opportunity to handle this problem.

Going against my mother’s heart, I encouraged him to let the staff help him even as I tried hard to swallow the lump in my throat.

I could not let Aaron sense that I was upset.

He protested even as I portrayed over the phone my confidence that he would be fine. 

Fake confidence, honestly.  Not that I don’t trust the staff at his home and day group.  They are wonderful.

But letting go of Aaron like this is hardest on me. 

My phone soon rang again.  One of the staff was asking in the background where Aaron’s clean sheets were.  I could hear her and others comforting Aaron as they assured him that they were there to help.  They changed his sheets and took care of everything.

At Paradigm, his day group, the nurse gave Aaron some medicine and let him stay in her building for awhile.  He called later and sounded much better.  He even went on the outing that day and had a good time.

I understand that the pull of home hits Aaron at times, especially when he’s physically struggling.  That pull affects me even harder because it hits my mama heart.  I must go against my instincts, but I know it’s best for Aaron in the long term to learn that his staff will now care for him during these times.

He’s not the only one who needs to see this.  I do as well. 

It would have been easier at home, yes, but would not have been the best decision.

Talking about this first test still makes me cry but I also know that we passed the test not only because of the caring staff supporting Aaron, but also because of our caring God Who is walking beside us at each step.

And because of each of you who are praying and lifting us up.

Thank you so very much!

Aaron’s Move: I Wish You Were Young

Aaron is nearing one week of living in his new group home.  He has done amazingly well.  Yes, he has asked if he could come home to stay.  On Friday he called early to tell me that he didn’t want to go to his day group.  He wanted someone to come and stay with him there.  I told him he couldn’t do that and he was not very happy about that reality.  But the wonderful house staff as well as the staff at his day group helped work him through it and he had a good day.

Our sweet neighbors went to visit him yesterday afternoon.  Aaron was so surprised and happy.  Today our daughter and her family went to see Aaron.  He was super excited about that.  Ryker and Cora got to see Unkie Aaron and his new room.  Aaron was able to do his favorite thing – sharing snacks with Ryker and Cora. 

Thursday Aaron and I went to deliver for Meals on Wheels.  He got to tell all our dear clients about his new house.  We went to WalMart and out to lunch.  Aaron was happy that Dad joined us. 

Back at home, he got one of Dad’s great haircuts and shaves, I trimmed his nails, and we watched Hudson and Rex. 

When Aaron had gotten in the car that morning, the first thing he asked was if he could stay at home and not go back to his group home.  But by the time his show was over, he was ready to go back to his new room and to see Victoria.  We were so relieved and so very proud of Aaron!

Yet there are glimpses of sadness that he shows us as he adjusts to missing us and missing his home, his old life, his friends here in the neighborhood and in the stores we have frequented for years.

We got Aaron a phone and on the first day he had it a friend showed him how to FaceTime before we could do that.  He’s loving it!  He and I were on FaceTime last night.

“Mom,” he said.  “You look old, like an old lady.”

Good old honest Aaron.

“Well,” I said as I laughed, “I am old, Aaron.”

“I wish you were young,” he flatly added. “Then I wouldn’t have to be here.”

That was a gut punch for me.

You see, for a couple years we have been trying to prepare Aaron for the fact that someday he would need to move.  He didn’t like talking about that and would ask us why we would make him leave.  One reason we gave him was that we were not getting any younger and wouldn’t always be able to care for him.

He knows how to touch the deep places in our hearts without really planning to do that.  He’s just very honest with what he’s seeing and thinking. 

And that one…that really hit hard.

I stumbled around saying something that I hoped was encouraging as I blinked back tears I didn’t want him to see. 

I realize how fragile I am.  Aaron, too.  And Gary’s been hurting in a way that’s new to him. 

He told me that even though we’ve known for all these years about Aaron’s handicap, now we see it differently and more clearly than ever.  We see it in a way that shows how vulnerable Aaron is and how this huge change has rocked his stability and his comfort. 

We feel responsible for that, but we also knew that this was a decision that would ultimately need to be made one day.  It’s just that we’ve made sure Aaron was well cared for in every way for nearly 42 years.  Now he sees us as being the reason he had to move and leave us and everything he loves.

That’s a heart wrenching load to carry right now.  We know that all these feelings will ease with time for us, and we pray they ease for Aaron as well.

He really is happy where he is and we are very pleased with his progress this week.

But we can’t turn off our love for him and our concern that he knows we have not abandoned him.  We have shown him perhaps in the greatest way ever how deep our love is for him as we have given him a future that won’t depend on us being around forever.

He’ll probably never fully understand that until the time we’re all together in heaven.    

And guess what, Aaron?

I won’t ever be an old lady again! 

Aaron’s Move: Don’t Disappoint Me

Monday night was Aaron’s first night in his new home, and our first night without him in our home.  I woke up Tuesday morning, unplugged my phone to take with me, and automatically reached for Aaron’s baby monitor. 

Old habits die hard.  Fresh tears came quickly.  I had been out of bed less than a minute when I was hit full force with the reality that Aaron wasn’t here…that I didn’t need the baby monitor with me to listen for seizures. 

Then I checked my phone and saw that I had missed a call from Aaron.  His house has a phone, and I hadn’t heard his call.  I felt so terrible!

But then he called again and I quickly answered.  He sounded good, though tired.  He immediately asked when he could come home.

“For a visit?” I asked.

“No,” he answered. “To stay.”

I felt my heart being ripped out again as I told him that he couldn’t stay but that we would see him on Thursday for Meals on Wheels and lunch.

Then he asked if Gary and I could come over to his house that afternoon for a visit.  We were leery of visiting so soon, worried that it would upset him and he wouldn’t want us to leave without him.

“Aaron,” I said, “we’re afraid you’ll want to come home with us and you’ll be upset.”

“No,” he insisted, “I won’t ask to come home.  Please don’t disappoint me.”

And there went my heart and my tears, which I tried hard to hide from Aaron in my voice.

Gary and I talked about it and prayed about whether we should go see Aaron so soon.  We needed to get him a phone, and we would have to show him how to use it, so we made the decision to go and trust the Lord to let it be a good visit.

We pulled up in the driveway and soon Aaron burst out the front door.

“HEY!!” he yelled. 

“HEY!!” we yelled back.

Then came hugs and huge smiles and lots of talking.  He was so happy to see us and we were the same.  Victoria was thrilled to see us, too.  She stayed right there with us in Aaron’s room.  It was “honey this and honey that” as she talked to Aaron. 

The visit was great.  Aaron would rush in and out of his room as he talked to the staff.

“My mom said to tell you…” he would tell them. 

Or, “My mom wanted to know….”

“No, I didn’t!” I would add. 

They’re getting to know Aaron. 

As we left, Aaron gave us more hugs but didn’t ask even once if he could come home.  Gary and I drove home feeling huge relief and joy.  God gave us a very sweet gift yesterday despite our concern.

It felt so good that we didn’t disappoint Aaron.

And even better that God didn’t disappoint us.

This morning in my study of Psalms, I read chapter 6.

“I am weary with my sighing; every night I make my bed swim. I dissolve my couch with my tears.  My eye has wasted away with grief….”

“For the Lord has heard the voice of my weeping.  The Lord has heard my supplication; the Lord receives my prayer.”

“Prayer doesn’t change things, but prayer lays hold of God Who changes things and Who, in prayer, changes you.”  (Dale Davis)

This is such an important truth for those who are believers.  Sometimes the biggest change that comes when I pray isn’t that God changes my situation.  It’s that He changes ME.  As I submit to His will and His plan, even if I can’t see it…or I see it and don’t like it…He honors my trust in Him by giving me incredible peace and strength. 

Sometimes our prayers are the sound of weeping.  That’s all we can muster.

“God can even make out what your tears long for.”  (Dale Davis)

God doesn’t even need our words.  He just wants our trust.  And as I experience God’s presence and peace, I can’t help but praise Him for that.

I looked out my favorite upstairs window last night.  Once again, God didn’t disappoint.  His artistry was a beautiful ending to our day.

And the artistry of His peace for us as we see His care for Aaron and His soothing of our broken hearts is also a beautiful thing to see.

Aaron’s Move: Do I Have To Go?

Today was moving day for Aaron as he transitions to living in a special needs group home.  Gary and I have worked all week on his new room.  On Saturday we took him to see his room and to show him everything.  He was excited and had an ear-to-ear smile as he walked in his nearly finished room.  It helped that Victoria was there, too, and squealed with joy at every drawer that we opened and especially at the fun snacks we put into Aaron’s snack baskets.

But as the weekend wound down, we could also tell that Aaron was getting more apprehensive.  He saw his life changing as his bedroom at home became emptier and a strange room in another house now held his special things. 

This morning on the monitor I heard Aaron awake.  It was way before 5:00.  He was rustling things, walking up and down the stairs, took a shower, and even took his pills way too early.  It was all way too early.

He opened our bedroom door several times to see if I was awake.  Finally, as I faked sleep, he spoke to me and asked if he could have his coffee.  There was nothing to do but get his coffee and face whatever would come on this very sad morning.

I put his coffee on his nightstand. 

“Mom?” he said as I stood by his bed.  “Do I have to go?”

He was looking straight into my eyes, focused and unwavering.

God held back my tears as I answered him.

“Yes, Aaron, you have to go,” I told him with as much love as I could.

But my tears flowed as I walked back to the bedroom and sat down at my desk. 

This feels like betrayal of our special Aaron, but we know that we are only doing what is best for him. 

Sometimes what is best is not at all what is easiest.

God has so definitely opened this door for us, and we knew we should walk through it. 

Later, Aaron began bringing me items from his room that he wondered if he could take.  His TY stuffed animals.  His slippers.  His pajamas he had just worn.  His special pillows.

I had dreaded our last drive to Paradigm, his day group.  Dreaded seeing him leave.  But he wanted to go with me to Carly’s office, where he was met with big smiles and high fives and where Carly took this picture of me and Aaron.

I drove home, comforted and tear free, and so aware of God’s grace and of all the many family and friends who were praying for us today.

We got several pictures of Aaron and Victoria today, huge smiles on their faces.

Gary and I finished his room today.  We will still hang some things on his walls and are waiting on his new bed to come.

 Aaron rode to his group home with his housemates.  He called us tonight and we were like parents excited to hear from their child at camp or at college. 

But then he asked us why we made him leave.  We explained it yet again while feeling like we had abandoned him.  We know better and we hope Aaron does but oh, it hurts right now. 

The tears come and go for me and Gary.  Lots of tears.

But being in God’s will doesn’t mean we won’t have tears.

It does mean that God will hold our hands and comfort our broken hearts.

Just a bit ago I honestly thought I heard Aaron say, “Mom!” 

But his room here is empty.

He has a new room and a new life.

Yet we will always be his caregivers even though from a distance now.  Others will take over roles we have always held, and we pray they care for him well.

We know God will. 

And for that we are very thankful.

Moving Aaron

Yes, you read that title correctly.  Aaron is moving!

We have known for a long time that moving Aaron to a group home would need to be a part of his future.  But that part of his future was something we would always refer to as coming someday.  The prospect of him moving really wasn’t anywhere near a reality to us, though we knew that this “someday” would…someday…need to be THE day.

Gary and I have faced the truth that we are officially in our old age.  We have never wanted or planned for either of our other children to be responsible for Aaron moving when we are gone.  We know that planning for and carrying out Aaron’s next steps in life should be our responsibility, not theirs.  We also have known that facing this big challenge should be done before a crisis of some sort hits me or Gary. 

But what we have known for years in our hearts and on paper has been extremely hard to carry out in Aaron’s life…and in ours.  So many obstacles.  So many emotions.  So many reasons to wait until a better time.

A few months ago, we put out some little feelers to our good friend at Aaron’s day group.  She is like a second mother to Aaron and has known him for years.  I told Barb that we were ready…maybe?…to pursue these next difficult decisions for Aaron.

Aaron has a sweet friend at his day group.  Victoria and Aaron have a very special relationship.  We finally started letting Aaron call Victoria his girlfriend last year.  They really do seem to love each other. 

We talked and prayed about Aaron moving but had no idea how on earth to make this happen.  Aaron would NOT want to leave home.  He would be very angry and resistant to even the idea, much less an actual move.

One day I told Gary that the only way I could see this working was if there would be an open room in Victoria’s group home.  Co-ed group homes are common. But that was a real stretch, I knew.  Her house was full, with no vacancies expected.  But I prayed anyway that if this was God’s will then a room in that house would open.

On May 4th, I got a text from Barb.  She told me there had been a change and that suddenly there was a room opening in Victoria’s house.  Oh my!  Talk about mixed emotions!  We had excitement mixed with concern.  But deep down I knew that God had opened a very definite door for us.  We could not walk away and ignore this precise answer to prayer.  Gary agreed and so we knew we must move forward.

Our other prayer now was that Aaron would want to move.  This was another huge obstacle that we saw no way around but for God to work a miracle in Aaron’s heart. 

On the day Barb told us about the open room, I started a journal of God’s doings during this process.  I would open my Bible and read on those pages.  On May 5th, the day after Barb told us about the room, here is what I read.

“When my spirit was overwhelmed within me, You knew my path.”   Psalm 142:3

And:  “You have worked wonders, plans formed long ago with perfect faithfulness.”   Isaiah 25:1

God strengthened my spirit so much that morning with those precious promises about this path He had put us on for Aaron.  I certainly did feel overwhelmed, but I knew that God knew my path.  Our path.  His plans for Aaron and for us would be covered by His perfect faithfulness to all of us.

With Barb’s help, we planned for Aaron to go to the group home one day for supper.  We had Victoria ask him and he was beyond excited.  That day he rode to the house in the van with Victoria and the rest of the residents.

 He hung out there for a few hours and ate supper.  While there, the staff showed him the empty bedroom, and they talked to him about moving there. 

When I went to pick him up, I cringed when Aaron told me that they had shown him the room and asked him if he would like to live there.  I didn’t know they would do that yet. But Aaron was all about it!  He thought that was a great idea! 

Since then, Aaron has still been very upbeat about moving.  It’s amazing!  Another very big answer to prayer!

But he’s also going around telling everyone that he’s going to move in with his girlfriend. 

“Um, it’s not exactly like that,” I feel compelled to add.

So here we are.  We are having our intake meeting next week.  I’m not sure of an exact move-in date yet.

My emotions are all over the place.  You can imagine.  I know we’ll have bumps in the road as Aaron adjusts to leaving home.  He is expressing some fears about that. 

And I’m expressing my fears to some, but mainly to God.  Who can take care of Aaron like I do?  Who understands him and can read him like a book?  Who will be on alert for his seizures and take care of him when they happen?  Who will take him for a slushie or a milkshake?  And on and on and on.

But the God Who so definitely opened this door will take care of all those details and will take care of Aaron and of me during this huge transition.

My verse for May 30th:  “Do not fear, for I am with you.  Do not anxiously look about you, for I am your God.  I will strengthen you; surely I will help you; surely I will uphold you with My righteous right hand.”   Isaiah 41:10

How good to know we can trust God with each chapter of our lives, and of Aaron’s!

Aaron’s Lost Order

One day last week our exterminator was coming.  Aaron’s favorite storage place is his bedroom floor, so I had reminded him to clear his floor before we left the house.  

Soon a very upset Aaron came bounding up to me.

“Mom!!” he angrily said, “I lost the order of books!!”

When I walked into his room, I saw this.

His large stack of books had taken a tumble, ruining the careful order that Aaron had put them in.

I knew not to dismiss what to us would be no big deal.  To Aaron, this mayhem was a HUGE deal.

We got the books put on his bed as I assured him that he could restore the order when he came home later that day.

This is a perfect picture of our life with Aaron, more so lately than perhaps ever before.

Aaron has a rhythm to his life that he creates.  His routines and methods are vital to his happiness.  

We know better than to discount his routines.

There is always a balance in our life with Aaron as we seek to help him manage disruptions while at the same time validating his concerns…concerns of his that can lead to serious anger outbursts from him, which in turn lead to disruptions in our life.

Sadly, Aaron isn’t concerned about the effects he has on us.  Autism often manifests itself as narcissism in Aaron and in most others that I know who struggle with this condition. 

I have always said that physical disabilities are much easier understood than behavioral ones.

For instance, we have sadness and sympathy for Aaron when he has seizures.  The interruptions in our life that seizures might cause when we must change plans are clearly understood.

But when Aaron loses the order in his life that he has created he reacts with anger that sometimes becomes rage.  Nothing we say or do at that point has much if any effect.

I know when Aaron has a seizure that I can’t tell him to just wake up and come take a walk with me.  He understandably is unable to do that.

But I must also know that when Aaron has an emotional meltdown over something that has upset him, I can’t tell him to just get over it and stop being ridiculous.  He understandably is unable to do that either.

Except most of the time, at least on paper, his behaviors at those times are not understandable to most people.

My husband and I understand what is upsetting Aaron, most of the time, better than anybody.  

But again, those behaviors of his…goodness, they take a toll on us some days.

Autism surely is full of puzzle pieces, but we don’t have a picture on the box to tell us what the finished puzzle will look like.

And the pieces keep getting rearranged as Aaron’s order from day to day gets lost in one way or another.

Sometimes, though, a sweet picture starts taking shape from all those random pieces that we’re trying to fit together.

Despite lots of anger lately about having to fit his precious nephew and niece into his life and how their being here at our house causes his order to be mostly lost, he does often pull it together and shows his caring side.

Saturday evening, I watched Ryker climb up on Aaron’s bed and hand Aaron his current favorite Golden Book.

Aaron took the book and started reading Goldilocks and The Three Bears.  

When I read that book to Ryker, I use all the voices.  Papa Bear has a deep voice.  Mama Bear has a medium voice.  Baby bear has a little baby voice.  Ryker does the same when he “reads” it to us.  

When I read it to Ryker, though, we don’t make it through the whole book in one sitting because Ryker is soon off and running to his next adventure.

So, there was Aaron propped up in bed with Ryker kneeling on the bed nearby staring at him.  Aaron began to read Goldilocks and The Three Bears.

Except Aaron read the story with no inflection in his voice…no deep voice or medium voice or baby voice.  

No excitement.  No change in his voice when he read a question.  

Just a monotone monologue.  It was really hilarious.

And Ryker didn’t move a muscle.

Maybe he was in shock.  I have no idea.

But for the first time that I have seen at our house, Ryker let Aaron read the whole book.

I think Ryker senses a difference in Aaron but in his innocence, he accepts his Unkie Aaron just the way he is.

Oh, that we could all do the same!

Especially when Aaron’s life, like his stack of books, has lost its order and we think we might lose our minds.

Ryker let Aaron finish reading his book.

Sometimes we need to let Aaron finish his book with us, too…to try to understand him as we listen to his anger and his words.

To accept Aaron as he is while still trying to teach him and show him that there are other ways to manage life when he loses his order of books.

My Mother and Aaron

Ten years ago, on Mother’s Day weekend, we held my mom’s funeral.  It was fitting for her to be honored during the weekend dedicated to mothers, but it was also heart rending.  Her funeral, conducted by my brother, was the sweetest funeral I have ever attended.  

For her funeral, John had each of the grandchildren write down their favorite memories of their grandmother.  Aaron couldn’t do that, so I wrote about the special relationship they had.  I want to share that now.

So many memories come flooding in when I sit and think of my mother and her relationship with Aaron, her special grandson.  Not that he was any more special than all the other grandchildren, but because Aaron has special needs.  Yet those special needs are what made him so very special to his Grandmother.  From a young age, Aaron was diagnosed with epilepsy and autism.  His curiosities and abilities were a joy to his grandmother.  I’ll never forget her delight at watching him in Colorado, before he turned two years old, showing her his letters and naming them correctly…and how surprised and delighted she was.  I remember our visits to Third Street and all the fun Aaron would have.  The sprinkler in the yard, helping Grandmother put together her famous homemade pizzas, playing with the big marble toy or Legos, and Cheerios in the living room coffee table drawer.  And spinach!  Mom fixed spinach one night and Aaron, thinking that spinach would make him strong like Popeye, kept opening the refrigerator door, pry open the plastic container of spinach, take some of that cold spinach out, grimace as he swallowed it, and then push the container back and close the door.  Mom just stood there outside the kitchen, peeking in and laughing so hard at Aaron as he repeatedly choked down that cold spinach. 

We visited for Christmas right after Dad was diagnosed with liver cancer.   Aaron watched Grandmother and Granddaddy open their Christmas presents.  One present they received was a plaque with a long poem about what cancer cannot take away.  Mom, knowing that Aaron could read very well, handed him the plaque and asked him to read it out loud to us.  Aaron read every word while we all cried.  It was a memory Mom often spoke of, with tears in her eyes.  

One more!  We came home in 2010 for Mom’s surprise birthday party.  Even then she was having a hard time remembering all the grandchildren.  But she looked across the room, saw Aaron, and her mouth and eyes opened wide.  “There’s Aaron!” she said with true joy.  That recognition meant so much to Aaron, even though he couldn’t really express it.  I could tell from the look on his face.  So, the night that we found out she had died, I reminded Aaron of that day when Grandmother recognized him from across the room.  Aaron just smiled and said, “Yeah.”  It wasn’t a long comment, but his smile and his joy were unmistakable.  

That is what Mom gave to him…a smile, joy, and great love.  

I am forever grateful that God gave us our mother to love each of us, but also to especially love our special Aaron.

Her smile, her joy, and her great love will always be a part of our lives.  

And for that, I am forever blessed and grateful.

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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!  

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!