Aaron’s Move: Do I Call That My House?

Many of you have asked how Aaron is doing in his group home.  Too much time has flown by since I last updated and I apologize for that.  Has he really been in his new home for just over three months?!

There have been many adjustments to be made, and still are, for Aaron…for us…and definitely for his staff at the house.

Some positives first. 

When Aaron comes home for a visit, he’s always ready to go back to his house.  Some of that is because now all his “stuff” is there and not here anymore, and his “stuff” is what he loves to have around him. 

Yet we can see that he’s also happy to go back to his house and to his room because he’s seeing it more as his house.  He has most often called it “Victoria’s house” since he moved there. 

“Mom, do I call it Victoria’s house or my house?” he asked one day. 

I reminded him that he lives there now just like Victoria does, so he can also call it “my house.”

“Mom,” he said on the phone one morning.  “I don’t feel good.  Can I come to my old house and lay down in my bed?” 

While that pulled at my heart, I saw that Aaron is learning to let go of his “old house” and adjust to having a new house and a new life.

Moments like that are very hard for us but we know we must stand firm and allow the staff there to care for Aaron.

The staff has been doing a great job, both the residential staff at his home and the day site staff at his day group.  I can’t say enough about their patience and love toward Aaron.

Aaron is complex and very hard to figure out.  It takes lots of time and experience to understand his “ins and outs.”

For instance, one recent afternoon I had taken Aaron back to his house.  The staff came in to talk to us.  Aaron got angry and declared he wasn’t going to take his 7:00 pills.  I knew there had to be some reason for that outburst, so I asked him about it.  He told me it was because he FaceTimes me sometime after 7:00, when we watch some animal videos together like we did at home.  He thought he would miss his call, even though we had been managing it fine.  So, the staff wisely asked Aaron if 6:50 would work better for his meds and he immediately relaxed and said, “Yes!!”

Such a small change made a huge difference.  It was so good to see that understanding from her!

Aaron gets up in the mornings much earlier than he did here.  I’m not there and don’t know all the details but I know some mornings have been a struggle for him and for the staff.  They fix him coffee, though, like we did here and that has helped a lot.  And again, their patience and understanding is key. 

Aaron and Victoria are doing well.  It’s just so cute to see them laughing together, sharing treats, sitting out on the patio, and to hear her follow him around calling him Honey.

They went trick or treating together.

And just this past weekend they shared in Aaron’s birthday celebration.

Now, some challenges…many of which revolve around Aaron’s unfiltered frustrations.

If Aaron’s world isn’t in Aaron’s order, then he will react, usually with anger and by being very verbal.  We have seen some of that directed toward the staff or toward the other residents in his house.  We dealt with this at home but it’s extra hard for us to see it happening with others.  We feel responsible and want to make it right.  We feel embarrassed and apologetic. 

But the staff is trying to learn and understand Aaron.  We’re thankful for that. 

Sometimes it’s hard to remember the special needs that cause Aaron’s reactions.  Then most of his meds have side effects of behaviors and aggression.  Some things can’t be allowed but stepping back to assess and understand is so necessary.

Aaron has lost 10 pounds since moving there.  He was becoming lethargic and having other symptoms that made me suspect that some of his med levels were too high.  Sure enough, lab work recently showed that to be the case and so adjustments are being made. 

Adjusting meds is a process of diagnosing the issue and then implementing the solution.

Adjusting Aaron to his new life is also a process of diagnosing issues that are causing his anger or sadness.  Getting up earlier than he did at home…sharing a house with five other residents…getting used to the various staff…different food…

Then we try to implement a solution.

We listen to Aaron…we try to understand…attempt to reason with him…correct him with love and sometimes sternness…and pray.  A LOT!

Some solutions aren’t wise ones.  Several times we have been very close to literally running to Aaron’s rescue when he’s sad or upset, but we know that we must let Aaron learn to navigate his new life without us removing him from hard situations.

Watching him launch out into this world without us by his side every day has been one of the hardest things we have ever done. 

But hard times have also shown us God’s hand holding ours as He has promised to do.  He promises His personal, intervening action in our lives and we have seen Him do just that. 

And not only for us as parents, but also for Aaron in ways he doesn’t even see or know as he walks this new life path.

A new path in “his house,” not “our house.”

There Is No Other

I was at my desk this morning still feeling punched in the gut by election results when I noticed a particular light outside my upstairs window.  If you know me, you know that I spend lots of time looking at our beautiful Kansas skies and taking hundreds of pictures.  No two skies are ever the same, but they do have one thing in common.

Every single sky has been crafted by our almighty God.

Each are different. 

Each are His.

I turned to a sky verse I had jotted down some time back.  Its message was just what I needed this morning.  Perhaps you need this as well. 

Bottom line:  God used an ungodly ruler to initiate His purposes for the nation of Israel.

No long history lesson here, but in Isaiah 45:1 God called King Cyrus His anointed one.

What?!  Cyrus worshiped false gods.  How could God call him His anointed?

We know the end of the story, but Israel didn’t.  The people of Israel were captives of Babylon. Cyrus conquered Babylon.  God later used Cyrus to free the Jewish people and let them return to Israel. 

So yes, ungodly Cyrus was God’s anointed.

Back to my sky verses I turned to this morning.  I didn’t know the story of these verses when I turned to them.  Their message is just what I needed and I believe each of us as believers need to hear today.

“I am the Lord and there is no other; besides Me there is no God. I will gird you, though you have not known me.”  (Isaiah 45:5)

Say what you will, many who were elected to office this week do not know God.  I say that based on scripture, not on my own judgments.  But I also must realize that God has given them this office for reasons only He, at this point, knows and allows. 

BUT….God is still God.

Why did God gird Cyrus for his particular role in history at that particular time?

“That men may know from the rising to the setting of the sun that there is no one besides Me.  I am the Lord and there is no other; the One forming light and creating darkness, causing well-being and creating calamity; I am the Lord Who does all these.”  (Isaiah 45:6-7)

I looked at our old faithful oak tree outside the window…the tree who plays a prominent role in most of my sky pictures. 

There it was…half-light, half-dark.

It was such a beautiful picture of this truth from Isaiah.

God causes well-being and He also creates calamity.

He is in charge.  We are not. 

God has had the final say in this election because He is on the throne.

I won’t pretend to know all the reasons or to predict America’s future. 

My certainty…our certainty as followers of the almighty God of the Bible, not the made-up version of God spouted by heretics now in office…is to recognize that God is sovereign.

And as sovereign, He is in full control of this old corrupt world.

So, we hang onto Him and toss over to Him our disappointment and fears for the future.

We know that God wins in the end and that He will be with us at every step as we head in His direction.

We can lay our heads on that truth every night in peace and security, no matter what chaos we see around us.

Stay rooted in our almighty God!

Aaron’s Move: Can I Come Home?

It’s hard to believe that we’re closing in on the 2-month mark of Aaron’s move to his group home.  Aaron has mostly done amazingly well, but as you can tell from the title, we are having some bumps right now.

We have been very pleased with Aaron’s adjustments to his new normal.  Even Gary and I don’t fully realize how huge this move is for Aaron, though.  However, we’re beginning to see that fact demonstrated in Aaron’s behaviors.

Since Aaron moved, I have picked him up every Thursday for our Meals on Wheels deliveries.  We go out to lunch afterwards, then perhaps some shopping and back home to watch a favorite show. 

On Sundays after church, Gary and I pick Aaron up and he comes home for several hours.  On both those times at home, Aaron has always asked to go back to his new home before we’re ready to take him back.  That has been encouraging as well as surprising.

But this past Sunday he was extra grouchy.  In the driveway of his group home, he refused to get out of the car.  I went on inside his house and in a few minutes he came in, complaining that he didn’t want to be there.  He did settle down and was resigned but not angry when I left.

The past several days have been rough.  He has been angry and has displayed that anger in rude behavior at his day group and at his group home.  He was crying on the phone when he called us.  We talked both to Aaron and to his staff.

“I don’t want to live here,” he cried.  “Can I just come home?”

Those words are a knife in our hearts.

Gary and I must stand tough while assuring Aaron of our love.  

He told the staff that he thinks we want them to be his parents now, so we assured him that we are not going anywhere, that we are still his parents and we are still here for him.

We told him that we were often homesick over all these years and have missed our families that are far away, but that we live near him and can see him often. 

His crying finally eased and our calls after that were pleasant. 

We truly understand Aaron’s feelings.  We also know that dealing with the impacts of his homesickness is tricky and difficult, even for Gary and me who know him so well.  Imagine how his staff feels as they are thrust into the deep end of these dilemmas while trying to understand our very complicated Aaron.

The other morning, I looked back at the verses I had written down that God gave me as we began this journey.  This one jumped out at me.

“While I was fainting away, I remembered the Lord and my prayer came to You.”   (Jonah 2:7)

God answered so many definite prayers as we sought His will about Aaron moving to a group home….answers that were specific and that we could not ignore. 

But answered prayers don’t always mean a smooth road ahead.  It’s easy to wonder if we did the right thing when the road is full of potholes.   

That’s why I went back to the promises God had given in the weeks before Aaron’s move.  And why that verse in Jonah is such a comfort to me.  I need to daily remember the Lord…to remember His definite leading then and how He spoke to me through His Word.

And to remember that just as I trusted God before Aaron’s move, I also need to continually trust Him in these weeks after the move. 

My trust in God and His leading isn’t to depend on my circumstances. 

My trust depends on God alone…on knowing Him and resting in Him…not in what is happening around me that is disturbing and hard. 

Focusing on the hard things brings doubt and despair.

Focusing on God alone brings peace despite the pain.

So, like Jonah, I will remember God’s past leading and I will remember to pray in our present troubles, even when I don’t feel like doing either at the moment.

And once again, we thank all of you who are continuing to pray for Aaron and for us.  Your expressions of care mean a great deal to us, and we are remembering to thank God for you!

Unpredictably Faithful

It was the summer of 1983.  My husband was in helicopter flight training for the U.S. Army at Fort Rucker, Alabama.  We had rented a house for the few months that we were there. 

One hot summer day I stood outside watering my beautiful Zinnias in our front flower bed. Gary and I had been married for four years.  I remember the thoughts that ran through my mind as I stood alone outside. 

“If only we had a little baby asleep inside,” I thought, “my life would be complete.”

A year and a half later, God granted my desire.  Our first child was born in the old wooden military hospital at Fort Carson, Colorado.  Aaron surprised us by arriving three weeks early.  We were over the moon in love with our tiny little baby boy.

Never once as I longed for a baby did I consider the possibility of having a child with special needs.  That blip was never on my baby radar. 

Aaron’s first seizure happened during our second tour in Germany.  Suddenly we were thrust into a huge unknown.  He spent five days in the German Kinderklinik and then released into the care of our military doctors.  This began our life with so many doctors and procedures and tests and medicines, all while making numerous military moves, raising three children, homeschooling, and serving in various churches.

Lately I’ve been thinking more about that dreamy desire I had for a baby.  God honored that desire He planted in my heart, but certainly not in the way I would have chosen, quite honestly.

I love what Dale Davis said as he wrote about God’s sometimes unusual ways.

“God is always faithful, but He’s not always predictable.”

Our life has been anything but predictable over Aaron’s nearly 42 years.

But God has been always faithful. 

I can say with the prophet Isaiah:  “O Lord, You are my God.  I will exalt You, I will give thanks to Your name; for You have worked wonders, plans formed long ago with perfect faithfulness.”   (Isaiah 25:1)

I didn’t know God’s plan on that summer day as I cared for my Zinnias and wished I was caring for a baby. 

But I knew God then and I still know Him now, and with utmost certainty I can say that His plans for us and for Aaron, plans formed long ago, were and are wrapped in His perfect faithfulness.

So are God’s plans for you that know and follow Him. 

Whatever unpredictable news has come your way, know that God has been, is now, and will always be faithful to you.

Aaron’s Move: Our Old House

It’s been over three weeks now since Aaron moved into his group home.  He has done so much better than we had feared.  He has adjusted to extraordinary changes in his life.  And yet….

Now that the initial excitement is over and everything is becoming more routine, he is showing some signs of stress concerning his new life.  He is realizing that his living situation is long term.  That acknowledgement is coming with some resentment on his part.  It’s showing up in some small ways that we pray don’t grow into big issues.

Yesterday he told me that he misses my cooking.  Never mind that many times in the past he was not thrilled with my dinner menu.  He is conveniently disregarding that fact. 

This morning he called and told me that he wants to come home to sleep in his own bed.  He wanted to know why he can’t do that. 

These are tricky conversations.  We are broadsided with them and unsure how to answer them except to assure him of our understanding and our love. 

The first Sunday afternoon that I picked him up to come home, he wanted to bring his entire basket of music CDs with him as well as several of his Handy Answer Books.  He finally agreed, reluctantly and with frustration on both our parts, to bringing only a few CDs and one book. 

On that day, he just wanted to stay a short time at our house.  He did the same thing this past Sunday.  Just a brief stay and he was ready to go back.  It’s largely because all his “things” are at his group home now and so our home doesn’t feel like his home to him now. 

In fact, the other day he was talking about coming home.

“When I come to….” he started.  He didn’t know how to finish.

“When I come to….our old house….” he finally said.

It’s an adjustment that all of us have had to make when we have left home.  It’s just extra hard for Aaron, and still very new. 

We have encouraged Aaron to call his group home HIS house instead of calling it Victoria’s house.  He’s getting there, but slowly.

Another aspect of Aaron’s adjustment is that he is showing more of his typical bluntness and anger.  That’s because the newness is wearing off and he is feeling the stress of his new life more.   He got very upset after we left him on Sunday because Victoria also left on a quick outing with her family.  He called and wanted Gary and I to come back.  It was so hard.  We talked to him as long as we could but did not go back. 

The on-call staff who is also the residential coordinator went over to help.  She knows Aaron well and was a lifesaver. 

In fact, both the house staff and the day group staff have been so amazing.  They love Aaron, understand him, and know exactly how to work with him and help him process all the new challenges and his emotions that come as a result. 

The Medical Office Coordinator made Aaron the cutest bedazzled goose to match her big one in her office that he loves.

So here we are, navigating the day-to-day as Aaron grapples with the long-term reality of his new life.  This was a necessary decision we made for Aaron, but necessary decisions are seldom easy.

So many of you have helped tremendously with cards, visits, gifts, words of encouragement, and prayers.

Especially your prayers. 

Sometimes I still cry, like I did yesterday during lunch with a friend. 

Or sometimes at night when I pass Aaron’s dark room.

But I know that your prayers are upholding us and giving us a calm that can only be explained by God’s “peace that passes understanding.”

We are not unaware of the impact each of you is having on us and on Aaron through your love and prayers.

And for that, we thank you so much! 

Working in the Dark

A couple months ago I looked out our kitchen window above our sink.  And there, to my dismay, was a tunnel web built by a hard-working spider.  The web was between our window and the screen.

Now spiders and I don’t get along too well.  Yet, despite my instinct to get rid of that spider and his web, I had a degree of respect for his hard work and so I let him stay. 

He was very industrious.  He built his web larger and longer as time went by.  One recent day, as Gary worked outside, he decided to use his blower to get rid of the web and hopefully the spider.  Good-bye spider.  Time to go!

But the next morning I went to the window and there was a fresh new web.  That spider had worked during the dark night to rebuild his web and start over.  Impressive, I must say.

I thought of this as I remembered a devotional I had read not long ago from Streams in the Desert.  The author talked about how the children of Israel came to the Red Sea after God led them out of Egypt.  Their situation seemed hopeless at that point.

But God sent a strong east wind all that night and caused the sea to part.  He gave a cloud that provided light and led the Israelites through the sea on dry land.

All seemed lost, but God worked in the night.  The dark didn’t stop Him.

Our dark times don’t stop God, either.  We may not see what He is doing but He has not quit working His best in our lives during the dark times.

In fact, it’s during those times when I can’t see Him working that my trust in Him has grown. 

I don’t have to see His work to trust that He IS working. 

If my trust depends on my sight, then I’m not trusting Him.  I’m trusting what I can see. 

In the morning, I saw how hard our spider worked during the night.

Likewise, someday I’ll see how hard God has worked in my dark times.

“For You light my lamp; the Lord my God illumines my darkness.”   (Psalm 18:28)

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.