Smiles and Joy and Prayer

I ended my last blog by saying that we were taking Aaron to the zoo.  I wish you could have seen his excitement and joy at being there with me and Gary.  He has a way of jerking his leg when he’s excited, like a little kick, and he did that multiple times.  He laughed so loud that we had to tell him to tone it down several times.  But his joy gave us such joy, especially after the sadness of the day before. https://hesaidwhatks.blog/2021/04/27/the-autism-two-step/

This was my favorite picture of the day.  He and the gorilla had a moment, and how I wish I knew what that gorilla was thinking!

I sent the picture to our kids and told them that Aaron was the one in the white shirt.  Just kidding, just kidding!! 

Then Andrea said, “That gorilla looks a little miffed.”

“I think he’s been around Aaron,” I told her.  “I’ve seen that look on all our faces.” 😊 😊

On Wednesday, when I picked Aaron up from his day group, he came to the car carrying these.

His friend, Victoria, celebrated her birthday the day before when Aaron was at the zoo, so she saved some balloons for her buddy.  Now Gary has a balloon by his desk, and I have two in our bedroom.  Aaron does love to share.

Like today, after Meals on Wheels, he decided he would save this for Gary.

One French Fry. 

But that one French Fry was very important to Aaron, there among his chicken tenders he brought home.  He immediately gave it to Gary when we walked in the garage, to eat right away, want to or not! 

Aaron can bounce from one thing to another, and one mood to another.  Gary and I are along for the ride on most days.  I sure am thankful to know that God is our driver, though, in the long run. 

Aaron has an MRI of his brain in the morning, just to double check that nothing is going on.  It’s been a long time since he’s had one and his seizures have been a little weird lately, so it’s best to be safe.

I’m praying for no seizures tonight so we can go tomorrow.  Praying for good results.  I would really appreciate your prayers as well, for which I thank all of you VERY much! 

Like I said, how good it is to know that God is in the driver’s seat!

And Aaron is in the front seat, too, if he has his way because he is ALWAYS in the front seat and he must listen to his current music CD and if there is more than one of that group it must be played in the right yearly order and he must control when it comes on and when it goes off and keep track of which song is playing and what number it is and what the title is and……..

Aaron’s Prayer

Last week Aaron was extra grouchy every morning when it came time to get out of bed.  Nothing I said or did made a difference.  Nothing Gary said or did made a difference, either.  So, it seemed we were stuck in perpetual morning grouchiness.

Believe me, Aaron can re-define what it means to display said grouchiness.  Can he ever! 

I have many AAAAAHHHHHH moments when he is on that level of refusal to get out of bed.  Aaron can be very verbal, and not in a nice way, when he is tired and sleepy at the beginning of his day.

Therefore, I sometimes tell him that I am done and then I disengage.  I don’t respond to his words or his demands, and I tell him that the decision about his day is his to make.  He eventually settles down and all is well.

Last Thursday, our Meals on Wheels delivery day, saw Aaron once again very angry about getting out of bed.  I quickly decided to get off that path, telling him that I would go without him and proceeding to get ready to leave.

Aaron could not bear that thought.  As we drove to the senior center a while later, Aaron’s mood improved.  His music made him happy as did the thought of eating lunch at a restaurant after our deliveries.

Aaron was very helpful and he enjoyed seeing our clients, as well as the various dogs and other animals that we have come to know. 

“Mom, did I do good today?” he asked as we finished at our last house.

I assured him that he did just fine, and he smiled happily as he rubbed his hands together.

Soon we were at Jose Pepper’s being pampered by Emily, our server that we have come to know.  She loves Aaron and is excellent with him.

We were munching on chips and salsa, along with a free espinaca, when Aaron’s salad arrived. 

“OK,” Aaron said, “let’s pray.”

I love it when the praying part is his suggestion.  I also love it when he agrees to ask the blessing, which he did on this day.

Now Aaron’s prayers are always two sentences, and they are always thanking God for things.  He might say, “Thank You for the food and thank You that we got to go to Meals on Wheels.”

But on this day, as we bowed our heads, Aaron got completely off script in a very wonderful way.

“Dear Lord,” he said, “next time on Thursday will You help me do better about going to Meals on Wheels?”

I seriously cannot remember Aaron praying like that in a very very long time.  Maybe ever. My heart was so touched and warmed by his simple yet heartfelt prayer.

Aaron does feel things much more deeply than we usually know.  It’s hard for him to process his feelings and thoughts in a controlled way when he’s frustrated.  Hard for him to let us know what it is he is feeling without hurting OUR feelings.

We enjoyed our lunch so much, even if Aaron wasn’t totally sure what he was eating.

“Mom?  What’s this green stuff?!” 

Being color blind makes Aaron’s life even MORE interesting…and ours as well. 

Green food and a great prayer. 

Thank you, Lord, for those blessings. 

But She Got Scared!

Every single day that Aaron goes to his day group, I tell him the same thing.

“Aaron,” I say with more patience than I feel, “do NOT give away any money today.”

You see, Aaron loves to give things away and one of the things he loves to give away the most is his money.  We send him with money to spend at Quik Trip for his lunch, but oh it’s so hard for Aaron to keep his money for himself. 

His philanthropy is well known among his day group friends, and there are some who are very willing recipients.

He has become quite adept at fudging his numbers, too, telling me that he bought this or that…or that the cashier didn’t give him back his change (yeah right!!)…or several other story lines that he has perfected. 

Sometimes between the Paradigm staff, especially Barb, and me and Aaron we’re somehow able to sort out the messes Aaron makes.  Often, it’s not without anger and tears from Aaron.  Occasionally Barb is able to get the money back from the person Aaron gave it to, but usually once the money is gone, it’s gone. 

Our rule now is that Aaron must bring a receipt home with him if he spends money anywhere.  He most often does this, and things are going better in the missing money department. 

Today as we drove away from Paradigm, Aaron realized that he had left his wallet there in Barb’s desk, even though she told him three times to take it with him.  Aaron told me he had only bought a slushie, so I was instantly suspicious about where the rest of his $7.00 was.

“MOM!!” he exclaimed, “I did NOT give any money away except for my change!”

“Aaron,” I reminded him, “you’re not supposed to give your change away either.”

I could feel my patience growing thin as we had the same money conversation yet again. 

Until Aaron said this: 

“But Mom, Victoria got scared because of the thunder so I gave her my change to help her feel better.”

Now what could I say to that?!

Barb confirmed the story as I asked her about the wallet.  She told me there was $5.00 in it, and that Aaron had given the change, all eighteen cents, to Victoria. 

Not long ago, after Aaron hadn’t been to Paradigm one day, Victoria saved him a piece of her birthday cake.  She gave it to him and they shared some saved cake the day that he returned…the day after he had a scary drop seizure. 

Barb told me today, as she has before, that their friendship is very sweet to watch. 

Life can be tough for Aaron sometimes, and I imagine that it can be the same for Victoria as well.  Things pile up in Aaron’s brain and it’s hard for him to process and handle his emotions correctly. 

But when I see Victoria saving some cake for Aaron, and I see the happiness on their faces…or I hear Aaron say that he wanted to help Victoria not be scared of the thunder…then my heart is full, and my emotions are hard to contain.

Our special children, though adults, still think and behave at times like children.  As caregivers, we parents can get tired of having perennial youngsters to teach and to take care of. 

But the other side of that coin is that we also get to see genuine simple acts of love like we saw today.

And those sweet moments are like a breath of heaven’s air to a tired mama’s heart.

Set It Aside

One morning shortly before Christmas, Gary and I sat down to eat breakfast with Aaron.  We were enjoying our eggs, sausage, and biscuits while listening to Aaron talk…always Aaron is talking! 

Aaron pushed back his chair and got up to get something from the kitchen – probably more napkins or silverware since one napkin and one set of silverware is never adequate in Aaron’s book.  I looked up then to see that Aaron had put his biscuit off his plate.  He had set it aside in order to keep his plate from being crowded and to keep the food from touching. 

We just left it there, choosing not to make that action an issue on this pleasant morning.  Aaron has his particular ways.  And Gary and I have learned to choose our battles carefully because disrupting Aaron’s ways can leave a trail of anger and frustration for all of us…and many times, it’s just not worth it.

Such is our life with autism, this matter of what to set aside and what to put back on the plate.

I had a full plate of Aaron issues last week.  We had unaccounted money gone from Aaron’s wallet, which means he probably gave some away at his day group.  He knows better, but he has a very hard time resisting the urge to share his money with his friends.  Therefore, he has become quite adept at not telling the truth, which was another issue we had to handle with Aaron.

Aaron became so frustrated that on Wednesday, he erupted in anger and tears at his day group.  He called me on the phone several times…he threw his shoe and his glasses…he yelled…and all in all was just extremely unhappy. 

His coat also got torn on both sides.  Aaron said that was done in fun as he and another client chased each other.  Either way, Wednesday was a rough day in more ways than one.

On Friday night, shortly after midnight, Aaron had the first of four seizures…the last one being at 6:40 Saturday morning.  I was fixing his favorite salad that morning, hoping he could enjoy it for supper as I hauled his wet bedding down the stairs and then helped him get settled on the couch for more sleep…and hopefully no more seizures. 

Bless his heart.  He can’t help his behaviors any more than he can help his seizures.  Yet while his seizures touch my heart, sometimes his behaviors do quite the opposite.

I thought about his biscuit as I was processing all that happened last week.  What do I set aside, and what do I keep on my plate?

I need to set aside resentment and anger, which is not always easily done.  Living full time with Aaron can take a toll on me and on Gary.  But God has led us to this life, and we know that He will keep us where we need to be if we just focus our eyes on Him and not on our circumstances. 

I must set aside selfishness.  Mending Aaron’s coat…taking him to have his bent glasses adjusted…washing his bedding and clothes…listening to his explanations over and over and over…  All these are actions that take my time and energy.  As any caregiver knows…as any parent knows…selfishness and service do not mix.  One must go off the plate.

Fear is another thing that needs to go.  Aaron’s seizures make my heart leap with fright for an instant.  I don’t think one ever gets used to them.  His future, too, can cause my heart to fear.  But again, I know that this path we walk is not alone.  God is with us each step and He has not given us the spirit of fear, but of power and love and a sound mind. 

Now what do I keep on my plate?  I keep the reminder of God’s great faithfulness.  I keep His Word in my heart.  I am mindful of His grace for each day and each moment.

I keep humor nearby, always.  A cheerful heart is the best medicine, like God said, for me and for Aaron, even when Aaron gives me a blank look when I think I’m very funny.  😊 

 I also count my blessings!  My plate overflows with blessings if I but look around me.  For instance, on Saturday I was very thankful for the blessing of a washer and dryer instead of a bucket and a clothesline.  Thankful for a warm house, food to eat and to fix for Aaron, and thankful that Aaron could eat some bacon and eggs later that morning.   And Aaron, who loves using multiple napkins, decided that the grease on his fingers could not wait for his napkin.  His eyes shot over to me as he wondered if I saw what he just did. 

“I was wiping a grease of bacon on my pants,” he seriously informed me.”

There’s the humor!!  😊 

Thankfulness, too, for Aaron’s amazing way with words.  After all, that’s a big reason I started writing this blog and named it He Said WHAT?!

And there is yet another blessing!  All my readers mean more to me than I can express. 

See how it goes?  My plate is filling up with good stuff, none of which I want to set aside. 

Time to taste and see that the Lord is good!

Our Thanksgiving

I don’t know if I’ll ever catch up with my blogging.  I’m so far behind that I haven’t even shared Aaron’s birthday pictures, and his birthday was nearly a month ago!  Oh well.  Life is busy and full, plus I just think I’m not as quick in many ways as I used to be. 

Enough of that!

I last wrote about Aaron’s increased seizures, and our son’s COVID diagnosis.  Thankfully, Aaron hasn’t had a single seizure that we’ve heard since that blog!

 Andrew has recovered from COVID and is exploring job opportunities since his racing furlough. 

Our trip to Texas for Thanksgiving went well.  Not perfectly smooth, but then is that ever the case?  God blessed us with safety and mostly good health and lots of sweet memories.  I’ll share those memories with pictures galore, so here we go!

Kyle and Andrea’s house was so warmly decorated for Christmas! 

Aaron did plenty of talking, as always!

And lots of laying on the floor petting these cuties.

Not the sock, Siggy!

He was pleased as punch to give Andrea the Thanksgiving picture he had colored for her.

And very surprised to receive a gift from Andrea’s boss at MD Anderson, who has taken a special and very kind interest in Aaron.

Our Thanksgiving Day was spent at the home of Kyle’s parents, Kent and Marie.  What a beautiful home and hospitality! 

Kyle loves goofy faces!

Aaron was nervous and sometimes grouchy in these new surroundings but soon he found his comfort zone – adorable Jax and Jill!

We are thankful for time together with family and friends.  Thankful, too, for all of God’s precious blessings, and for His comfort when we missed those not with us. 

May each of you be especially blessed as we remember God’s goodness, especially His great love that we next celebrate at Christmas.

Thanksgiving!

I want to wish each of you a very happy and blessed Thanksgiving! 

We made it to Houston!

I just wanted to share with you a picture of Aaron with his sister, Andrea.  Aaron colored that picture in his day group and was very happy to give it to Andrea.

I wish you all a very blessed day in whatever form it takes. 

May we all remember to count our blessings and keep our minds on the Giver of them all. 

A Fun Fourth

Our Fourth of July was hot and sparkly, full of Aaron smiles and excitement, mixed in with too much quietness for my liking.  The quietness comes from not having our kids or extended family nearby.  I don’t even really like holidays for that reason, but I choose to count my blessings and enjoy our special Aaron times.

On Friday, Gary and I took Aaron out to eat at Cracker Barrel.  He loves that restaurant!  He left with a full stomach and a chocolate bar from the gift store, and ended up with a sack full of sparklers and other smoky, loud Fourth of July fun that we chose in the big tent a couple miles from home.

I’ll just leave you with pictures of our weekend, including a perfect front-row view of our town’s fireworks and the gorgeous full moon on Saturday night.   And lest I forget, we rescued a turtle that Gary found in our flower bed.  😊

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And my favorite picture of all says it all!

 

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Magical and Maddening

“Aaron, look!!” I exclaimed one recent night as I closed our family room blinds.  Aaron walked over to join me at the window.  There, emerging from the grass in our front yard, were dozens of fireflies.  Lightning bugs, we called them where I grew up in West Virginia.

Aaron thought they were very cool!  He insisted that Gary come to the window as well, and so we stood there together for a minute, enjoying the sparkling little bugs.

A few nights later, Gary and I sat on our front porch after the stifling heat of the day had subsided somewhat.  It’s nice for us to enjoy a few moments of quietness and of being together, just the two of us without Aaron’s loud interruptions.  As dusk fell and darkness was encroaching, up from the grass once again came those beautiful fireflies.

It was captivating watching their glow, so many of them combining into a magical light show right in front of us.  So peaceful.

Then…BAM!!

Out on the porch rushed Aaron, who is rarely quiet.  There went the peacefulness of our front porch evening!

“MOM!!  Are we watching a Little House tonight?” he asked, knowing the answer.

I assured him that we would watch an episode, as always.

But, as always, that wasn’t enough for Aaron.

“When?” he asked.  “Can we do it now?”

I knew what was ahead but wanting to remain in the magic of firefly glow I told Aaron that I would let him know when I was ready.  This answer never suits Aaron.

One of the very hardest things for Aaron to do is to wait…on anything.  He especially finds it nearly impossible to wait on me to watch a program with him when HE is ready.  He escalates quickly into anger at those times, no matter what I say or how well I prepare him for the inevitable wait.  That night was no exception.

Our evening was quickly reverting from magical to maddening.

Such is often the life of a caregiver.

My blogging friend, Cheryl, is the author of a caregiving blog written out of her experiences as she cares for her husband who has Parkinson’s.  Our situations are very different but also very similar.  I have loved her insights and her godly wisdom.

In one recent blog…linked here… (https://parkinsonscaregivernet.wordpress.com/2020/06/13/similar-yet-different-but-really-similar/) – she wrote:

“But we live for the moments of joy: seeing our loved one smile, hearing them recount experiences from the past, watching them respond to family and friends, hearing them tell a favorite joke. Those moments may be brief, so we hold them sacred in our hearts and bring them to mind when the times are difficult. Another is the joy of knowing we are doing our best, that we are doing the right thing, that we are doing God’s work here on earth by caring for our loved one. Let’s not forget that, especially when the moments are difficult or uncomfortable.”

The difficult moments with Aaron often involve his autistic behaviors…his demands that life revolves around HIS order and expectations of how things are to be.  During those times, no one else’s desires or needs are considered by Aaron to have importance.

Maddening.

On our firefly night, we told Aaron that he needed to wait.  We tried to get him to  enjoy the magical lights in our front yard but he was blinded by his own frustrations and cared nothing for the beauty around him.  Only one thing mattered.  And he wanted that one thing NOW.

Anger intruded into our evening and stood on our front porch, as opposite in its effect as could possibly be when compared to the earlier joy of time together with Gary among the little sparkles in our yard.

Later, the anger was gone as Aaron and I watched our show.  Aaron is usually oblivious to the effect he has on us during those times as he brushes off the recent outburst and is happy in his bubble again, where all is well.

Oh, that it was so easy for me to do the same!

Like Cheryl said, though, it’s important to hold the moments of joy sacred in our hearts and in our memories.  And to know that we, as caregivers, are doing God’s work here on earth.

My heart this morning was heavy as I helped Aaron during his second seizure…knew that I would have bedding to wash later…canceled my hair appointment…and tried to still my worried heart about other matters.

I had finished my normal Bible study and so I opened my Bible randomly to see where my eyes fell.  I love doing that!  It’s like opening a treasure box that I just unearthed, excited to see what’s inside!

And look what God gave me!!

“But ask the beasts, and they will teach you; the birds of the heavens, and they will tell you; or the bushes of the earth, and they will teach you; and the fish of the sea will declare to you.  Who among all these does not know that the hand of the Lord has done this?  In His hand is the life of every living thing and the breath of all mankind.”  (Job 12:7-10)

It’s all in God’s hands!

Aaron…me…Gary…others I love…our world…

All life and breath is in God’s hand.  All of creation declares that truth!

Now it’s up to me to trust our loving God and to rest in His hand.  And to…most importantly…trust Aaron into His hand and know that God put Aaron into our lives for a purpose I may never know on this earth.

But may I trust God’s knowing.  Trust and know just as much as the beasts and the birds and the bushes trust and know Who has done all this!!

Fireflies know, too, I am sure.

Maybe that’s why they shine their magical lights for all to see!

May I do likewise.

Photo by National Wildlife Photo Contest entrant Radim Schreiber.

 

Biscuits and Blessings

Aaron was very happy last Thursday when I asked him if he wanted to come with me to Aldi.  I needed a few things, which with Aaron involved would turn into more than just a few things.  Shopping, even for groceries, is Aaron’s second favorite thing to do.  First on the list, most definitely, is eating out.

But shopping ranks a close second.  Aaron sees a store as a huge area of nearly limitless possibilities.  When we enter, he is instantly on the prowl for his catch.  Will it be gum?  A canister of peanuts?  Pringles?  Croissants?  Thick grated cheese…not that thin stuff!!  Or will he find an unusual item that he holds up for me…and all within earshot…to see?  Like an artichoke or an eggplant or a star fruit!

Stores are just awesome!!

When we exited Aldi, Aaron had captured a large container of mixed nuts and THREE cans of biscuits!!

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The biscuit discussion ensued.  When would we eat them?  For which meal?  How many would we fix?  Would I eat any?  Would Dad eat any?  And even when the questions were answered, they must be asked again…and again…and again.

Expected with Aaron, but exhausting.

I told Aaron that we would eat some biscuits on the next day, Friday.  Then he plotted and planned at which meal we would eat them, and how many cans would we fix.

“Can we have TWO ?” he asked.

But I assured him that the three of us did not need more than 8 biscuits, so he resigned himself to that reality as Thursday ended and the promise of Biscuit Friday lay ahead.

Before he finally decided to stay IN bed and go to sleep, he had to verify it one more time.

“Mom? Did you say that tomorrow you’re only fixing ONE barrel of biscuits?”

How I love his phrasing of common names!  Only Aaron can make a can of biscuits take on a whole new meaning.

“Yes, Aaron,” I answered with a smile.  “We only need one barrel of biscuits.”

During that night, Aaron had two seizures while he slept.  But he really perked up when he got out of the bed later that morning.  In fact, he talked and talked and talked as he followed me around the house.  I was so saturated with his chatter and endless questions that I was in need of some relief.

I agreed when he asked if we could have some biscuits for lunch instead of waiting for supper.  He put three biscuits on his plate when they were ready.

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He was SO happy! Look at his face as we settled in to watch a Little House on The Prairie episode, and he had his plate full of biscuits.  Pure delight!

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Later, I was very thankful for that moment. Aaron had another seizure that evening around the time we would have been eating supper. After awhile, when he was alert, he didn’t feel like eating any more biscuits. His appetite is usually ruined right after seizures. It always makes me sad when his seizures mess up his happy moments. But it was like God gave me that sweet gift of watching the joy of Aaron and his barrel of biscuits earlier in the day, knowing that if we had waited until supper then he would have been sad about missing his biscuits…and so would I.

God’s gifts may seem small sometimes but they’re really not at all. They sure do fill my heart and make me happy. ❤️❤️

And God’s gifts are all around us, every day, if we take the time to look.

Who would have thought that our barrels of biscuits would turn into barrels of blessings?

 

See…And Be…The Blessing

While my husband was mowing our yard on Saturday evening, I decided to run down to the store for some good old fried chicken.  Working behind the counter was a familiar face…a sweet woman who often waits on me.  I always ask her how she’s doing and ask about her elderly mother who lives with her.  She missed seeing Aaron with me and was asking about him.  Everyone knows Aaron…trust me on that!  😊

I ordered my chicken, and then asked for a few more pieces to be added a la carte.  As she filled the container for me, she told me that she would just put in those extra legs and thighs at no charge.  I said no, that I would pay for them, but she insisted on her plan.  The reason?

“You are always so kind to me,” she said.  “I want to do this for you.”

I was so touched…a little embarrassed…and walked away very blessed.

The next morning our pastor shared a meaning of that very familiar word…the word, “blessed.”

He said that to bless means, “To kneel in order to serve.”

He talked about how Jesus knelt down and washed the disciples’ feet.  Jesus was kneeling in order to serve.

We often talk about how we want to be a blessing, to God and to others.  We also talk about God blessing us.

But how can I possibly bless God?

I bless God by kneeling and serving.  I kneel before God, certainly.  But I am also to be like Jesus and kneel in service before the people in my life.

As Gary and I listened to the sermon, it hit me.  God had given me a sweet object lesson of this “blessing” principle just the evening before.

I had blessed this deli worker by showing her that I cared about her and her life.  She turned around and blessed me by giving me some free chicken.  I wasn’t showing her kindness for the purpose of getting something free, but my kindness gave her the desire to bless me in return.

As I serve God, I am blessing Him…and He, in return, will bless me.

I don’t mean that God will give me free stuff.  I mean that God will kneel down in His kindness and will bless me with joy…peace…love…grace…and other such sweet blessings that are promised to me all through scripture.

Sometimes, though, we think of serving God in big, obvious, public ways.  Our human nature and our culture tend to value the well-known over the little-known.

Over the years, more and more, God has taken away most of the public ways I had of serving Him.  Instead, God has brought home to me that, well, my home is to be my primary place of blessing God and blessing others.  This is my personal experience and doesn’t mean that it will be yours as well.  But wherever God has put you is where you ARE, by His plan, and that is the place where you can still bless Him and others.

Home can be a hard place to feel like I am a blessing.  The sameness and the drudgery of home life, honestly, can squelch the feeling that I often associate with being a blessing.

Cleaning around the toilet can be a blessing?  Really?!

But I’m brought back to Jesus, humbling himself by doing the disgusting work of a servant.

Washing the disciples feet can be a blessing?  Really?!

Really.

I kneel.  And I serve.  In the place where God has put me.

I don’t choose the place.  I don’t choose the service.

Validation isn’t the important thing.

Serving is the important thing.

For me, I serve God as I serve Aaron.  He was given to us by God.

On a seizure day:

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While we walk:

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Or he TALKS:

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When he wins and grins:

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Or asks for that homemade milkshake:

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The times are precious:

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And so are the children and the homes that we are given!

“Bless the Lord, O my soul, and all that is within me, bless His holy name.  Bless the Lord, O my soul, and forget none of His benefits.”  (Psalm 103:1-2)