The Best Gifts Aren’t Wrapped!

Aaron had a birthday last week…his #33!!  My goodness, when did THAT happen?!  Of course, you know what that makes me…but since I’m the one choosing the subject of this blog, I choose not to choose to talk about ME, and MY age!!

Aaron unabashedly loves his birthday.  It’s one of the treasures of his way of thinking, that he doesn’t outgrow the pure joy of his special day.  Yet he also shies away from too much attention, too much hilarity, too much of anything that makes him feel like he must do something that he’s not quite sure how to do.  Yet this year, he was more relaxed with all the excitement and well wishes from others.  He showed it in several ways that were out of his norm, and it was wonderful to see. 

Yet the very best part of his birthday were the gifts.  Oh, I’m not talking about his presents and cards from family and friends…though they were great, and Aaron loved every single one. 

The absolute best part of this birthday, as the celebrating carried over for several days, was for me to sit back and watch the priceless gifts from some amazing people in his life.  I’ll try to let my pictures do most of the talking.  And speaking of talking, I did not get pictures of him talking to his sister, Andrea – or his Aunt Sandra.  But the smiles on his face and the conversations were very sweet indeed…even when he interrupted Andrea in the middle of her sentence to give me back the phone.  We got a great laugh out of that one!

His long and special friendship with Rosa continues as each year they make time to share their birthdays with each other at Chili’s.  Rosa’s mother, Louise, has become a dear friend of mine, as well.  They are a gift!

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I think it was Rosa who suggested that the servers sing to Aaron.  And Aaron, who has never wanted that attention, agreed to it.  Their gift to Aaron was fun…our server there in the middle was wonderful…and look at the joy on Aaron’s face.

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What can beat the gift of sharing birthday ice cream with your very special friend?

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On his actual birthday, Aaron agreed to take cupcakes to his day group.  He has NEVER wanted to do that!  I was so happy! 

We stopped at Sam’s on our way to Paradigm. Aaron, in his typical way, grabbed the attention of someone who works there and asked them where the cupcakes were.  That someone was one of the butchers, and as I tried to tell Aaron and the butcher that I knew where the cupcakes were, Aaron excitedly said to him, “TODAY is my birthday!!”  So this very kind young man told Aaron to meet him at the bakery down the aisle, and he gave Aaron two free cookies.  Look at the joy!

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There is the gift of the very patient therapy dog at Aaron’s day group.

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And the gift of our own Jackson that we took on a walk that afternoon.

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There was the look of total delight as he held his sister’s gift to him.

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And laughter as he later opened his brother’s Artsy Fartsy card…complete with fartsy sound effects.

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There was the gift of Barb, from Paradigm…and her daughter, Casady, coming for lasagna.

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And Aaron wanting Casady to help him open a gift.

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One of the most touching pictures on his birthday was this picture, sent to me by Barb…taken at Paradigm…of Aaron and his friend, Koren, with good old Piper.  To me, it sums up how impacting and touching are the friends in Aaron’s life. 

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How much our special one’s desire to have love! 

How many ways that love can be shown in their lives, even by perfect strangers! 

 Aaron may not always give a verbal thank you very easily, but the smiles on his face last week told it all. 

And that is a wonderful gift for me and Gary as well.

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A Gift on Atha’s Birthday

Today is my friend Atha’s birthday.  It should be a very happy day of celebrating for Atha, her family, and for me.  Atha and I should be going out to lunch one day this week to celebrate our birthdays that are close together, paying for each other’s lunch while we laugh and while we share some heart-to-heart time.  But none of this will be happening today, or this week, or ever again.  At least not happening with Atha present.  Atha is in heaven now, and has been for nearly three months.

Is that even possible?

I wrote about my dear friend Atha after her memorial service.  Here’s the link in case you missed it and would like to know her better.  This Is My Friend  She was……she is……so worth knowing.  I can’t believe she’s not here now.

I still hear her voice clearly in my head, and her wonderful laughter.  I had lunch today with Atha’s daughter, Sarah, and I saw Atha in Sarah’s movements……the way Sarah held up her index finger as she talked……the way she opened her eyes so wide and moved her head…….her laughter.

I have so much I’d like to tell Atha.  I deeply miss our conversations, whether in person or more often, on the phone.  She was my best porch buddy, where I would sit as we chatted on the phone……my iced tea by my side……until the mosquitoes would drive me inside.

I still hear her words of advice, mixed with southern charm and sometimes a dash of sarcasm, depending on the subject.  I hear her words of comfort during the hard times, and her words mixed with the fire of resolve over injustices or wrong that either of us were enduring.

And I will always hear, and never forget, one of the most impacting things she…..or anyone……ever said to me.

“You are established in your purpose, Patty,” she said to me one day.  I wrote about that, too.   My Purpose

I will carry that with me always.

I’ve been missing her more the past few days, probably because of her birthday.  The special days are always hardest.  This past Saturday evening, for some reason, I just wanted so much to go sit out on my porch and talk to Atha.  I was so sad, and the tears came.  So I went up to my table that holds my Bible and I sat down, opening the pages, and reading here and reading there as I asked the Lord to give me a word that I needed.

I ended up in Isaiah 46.  God was speaking to Israel but principles are there for us as well.  Listen to verses 9-10:

Remember the former things long past, For I am God, and there is no other.  I am God and there is no one like Me, declaring the end from the beginning, and from ancient times things which have not been done, saying, ‘My purpose will be established, and I will accomplish all My good pleasure.’

I looked at that after reading it, and I said to myself, “Wait.  What did that just say?”

So I read it again.  Yes, there it was!  Atha’s words to me were spoken by God to me as well!!

Atha said, “You are established in your purpose.”

God said, “My purpose will be established.”

Isn’t that just awesome and amazing?!!

God has a purpose, and His purpose WILL be established.  He WILL accomplish all of His good pleasure.  He will accomplish His plan, according to His purpose that He has established……and in which He IS established.

And I wanted to say, “Well, Atha……looky there!!”…….to borrow an old childhood word.  Looky at that, would you?

Wasn’t God SO extra good and loving to show me those verses when I was so sad?

So I thanked God for reminding me of Who He is, and that He has a purpose even for the pain.  I don’t understand it……I may not even at this point really like it…..but His purpose will be established.   It will be accomplished, whether I see it or understand it this side of heaven or not.

Verses like this become memorial stones to me, so beside that verse I wrote, “Remembering Atha, June 2016.”

Atha would absolutely love this.  I wonder if God told her how He leaned down and spoke to me on Saturday evening, using her words that are His words.

It was just all wrapped up together like a beautiful package, perfect for this birthday week.

Happy Birthday, Atha.  I miss you, I love you, and I am so happy that you are…..and always will be…..my friend, Atha.

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Disappointments

Disappointments.  Not a very catchy, interesting title, is it?  Not even encouraging!  But disappointments are universal.  We all have them in one form or another, nearly every day.  At my age, I’ve had enough serious disappointments that I now count my blessings when my disappointments are more along the line of a bad hair day, getting a cold, missing a fun day with friends, or not getting in on a great sale. 

Disappointments related to Aaron usually come in two varieties.  We are either disappointed IN Aaron for some reason, or we are disappointed FOR Aaron.  We are usually disappointed IN Aaron because of his behaviors.  We are usually disappointed FOR Aaron because of something that hurts his heart, and therefore ours as well.

On November 6, two days before his birthday, I was going to take Aaron to one of Paradigm’s residential homes so that we could celebrate with some of his friends.  We were going to take pizzas and have fun.  Aaron was so looking forward to it!  But he came down with a stomach virus and was unable to go.  How disappointing!  We were disappointed for Aaron, very much.

So a week later, this past Friday, we made the same plans again.  But on Friday afternoon, the plans were canceled once again.  One of Aaron’s friends was having a very rough day and it wouldn’t have been a good situation for us to be in the home that night, no matter how much pizza we brought.  It was going to take time for this person to calm down.  In fact, this client had some words for Aaron during the situation, much like Aaron does when he has a meltdown, and it really hurt Aaron’s heart.  And it hurt and disappointed us, too, for Aaron.

All of this made Aaron act out.  He banged on the car that brings him home, making a small dent in the front of the car.  He yelled at me when he got home, escalating as I tried to talk to him.  He looked in his Friday goodie bag that sat on the kitchen table, and then knocked it on to the floor.  This is Aaron’s way of handling his own disappointments.  Instead of talking about his hurt, he becomes angry.  Talking only makes him angrier, especially my talking to him. 

I had two disappointments going on that evening.  I had my disappointment for Aaron as I was hurt for him in his hurt.  And I had my disappointment in Aaron…..in his behaviors that can’t be allowed, but sometimes can’t be stopped.  His defiance was understandable but unacceptable.  I hid his goodie bag from him as a tangible sign that his behavior was wrong…..and I wished with all my heart that he could just verbalize his disappointment instead of acting it out with harsh words and defiant behavior. 

He finally settled down enough to show an interest in going out to eat dinner instead of yelling, “NO!” as he had earlier.  So before long we met Gary at Outback, where we enjoyed dinner together and especially enjoyed seeing happy Aaron return.  In fact, before we left the house to meet Gary, Aaron said, “I’m just disappointed.”  Wow!!  Victory in three little words!  Aaron expressed his disappointment verbally and I praised him for that as I told him that I understood, and that I shared his disappointment.  I shared it so much that I even watched The Blob movie with him that night.  That movie brought me to a whole other level of disappointment, trust me.  It was painful!!  But Aaron was happy!

He had a rough morning yesterday, Monday, as he returned to Paradigm.  But the afternoon was much better.  Today he got up very early, and at 6:11 I was in the kitchen listening to him talk about The Blob movie that we had watched.  I’m sorry, but 6:11 is a little early to be handling talk about The Blob.  I’m still not over that movie.

Our morning went well, and I was happy for Aaron to be so happy as I dropped him off at Paradigm.  But shortly before 2:30 I got a call.  Aaron was having a seizure.  I had just gotten home from spending the day with my elderly friend, so I was thankful that I was free as I drove to pick Aaron up at his day group.  Poor Aaron!  Another disappointment, this time more for me.  Disappointment for Aaron as he faces these awful seizures……his badly bitten tongue…..his headache…..the interruption in what should have been a good day.  He handles it so well, thankfully unaware of how sad I am for him.

This morning, as I had my quiet time, I did what I sometimes feel compelled to do.  I asked the Lord, as I turned the pages in my Bible, to give me a special word…..something He knew I needed on this day.  Today I flipped from Romans, where I have been reading, back to the first place my turned pages led….to Malachi.  And there in Malachi 3:6 I read these words:  “For I, the Lord, do not change.” 

Simple words, but I knew they were somehow for me today.  As I drove home with Aaron beside me, his breathing having that certain post-seizure sound, I looked up at the sky as very dark clouds rolled in.  There was a mix of bright blue, but coming in were the dark stormy clouds that promised rain.  Our day was changing from bright sunshine to dark cloudiness, just like my day with Aaron had gone from bright happiness to dark seizure concerns. 
 
Disappointments.  Changes.  We face so many of those, don’t we?  And I didn’t wonder anymore why God gave me that random verse this morning in the little book of Malachi.  “For I, the Lord, do not change.”  So in the middle of disappointments, whatever they may be…..and in the middle of the changes that those disappointments often bring…..we can as God’s children stand firm in God’s promise that He does not change.  Ever.

Just stop and think about what that promise means.  God never changes.  He is always the same, loving us and instructing us and being there for us.  No amount of world changes, of family changes, of my own changes….and the disappointments they bring….will ever change God. 

I’m very, very thankful for that promise today.  I’m very thankful that God gave it to me…..humbled, really, as I always am when God speaks to me so kindly and specifically. 

One more thing.  I’m never disappointed in God.  Never.  And I know that He will see us through all of our disappointments, including the ones IN and FOR our Aaron.     

Beautiful Hands

This past May our mother passed on to heaven.  We said our final earthly goodbyes to her on May 8, and thus began our year of those firsts.  Many of you know them…….those first special days that you spend without that special person.  Our first “first” came quickly.  Mother’s Day occurred just two days after Mom’s funeral.  Isn’t that just like life?  Life doesn’t wait on us to get ready for the things that are hard.  They happen whether we’re ready or not.

Our next first is tomorrow.  Tomorrow is Mom’s birthday.  She would be 89 if she had lived to see this day.  I know, though, that none of us wish her back.  We had been saying goodbye to her for a long time as the symptoms of Alzheimer’s overtook her brain and body.  What a sad disease it is!  Alzheimer’s takes a person slowly, robbing them of their essence and their personality and their memories.  I’ll never forget going to see Mom last year, in June of 2014.  When Gary and I entered her assisted living apartment with Jan, Mom not only didn’t know us at all, but she didn’t even show any joy that we were there.  She would usually at least act happy to have visitors, but on this visit she was completely devoid of even that.  For the first time, I did indeed feel like a visitor…..and an ignored one, at that. 

Our visit that June was also the one where we gathered around Mom in the kitchen at Jan’s house as we sang hymns. Mom sang with us, surprising us all.  That time was deeply precious to each of us, including Mom.  Her eyes lit up as she sang.  She smiled and she tried to express what she was thinking about each song.  She remembered words very well, and we knew that each song resonated with her deep in her heart and mind. 

Before we left that evening to go on our separate ways once again, Mary Beth wanted us to all put our hands on the table together, and take a picture.  I’m so glad we did that.  Something about that picture is so personal…..so tender.  There is our mother’s hand, nestled among her children’s.  Her hand shows the effects of age….of hard work….of arthritis.  But her hand is beautiful.  And us….our hands also show the signs of age that are creeping upon us.  You can see some spots…..some lumps on our joints…..and several of us have that funny little finger that Mom had. 

 
I look at that picture and I think of how Mom’s hand was always in our lives.  From an early age her hands were ever busy with caring for us five children, and for Dad.  I remember her hands cooking and baking, sewing and cleaning, caring for sick children and looking after busy children.  She used her hands to show us how to make little troll doll clothes out of felt while she sewed real clothes for us to wear.  She used her hands to let us turn the handle on the food chopper as she made Cranberry Salad for Thanksgiving.  She used her hands to fill our table with huge baking sheets of homemade rolls while she pinched off little pieces of dough for us to happily eat.  She used her hands to teach us how to set a table and how to wash dirty dishes after loading the sink just right.

Her hands wiped our tears…..and sometimes caused our tears as she spanked us for disobedience.  Her hands worked to grow beautiful flowers and delicious vegetables, which she froze and canned and cooked and shared with others.  Her hands taught us how to do the laundry and to fold the clothes correctly.  Her hands taught us to iron whatever she had placed in our four baskets, each basket bearing the name of one of us girls.  Where was John’s?  J  Her hands taught us how to clean a house, how to hem a dress, how to play some of her favorite card games, how to make a bed the RIGHT way, how to take care of our varied pets, and how to plan the many practical jokes for which she was famous. 

Perhaps the most important use of her hands was when she would open her Bible in the early mornings as we all sat around the breakfast table.  Dad would have already gone to work, so before we left for school, Mom would be sure that we all opened our Bibles as she did.  She would read from the Our Daily Bread devotional book, reading the selected Bible passage first and then reading the devotion before we prayed.  Her commitment to God and to us was never more evident than during that precious time together every morning. 

Her hands made each of our wedding dresses and bridesmaids dresses.  Her hands cared for us after each of our children was born.  Her hands loved and doted on her grandchildren and great-grands.  Her hands knit literally countless numbers of Christmas stockings for family, friends, friends of friends, friends of family, pets……you get the idea.  Her hands quilted each of us a totally handmade quilt after she retired.  Then those always busy hands made, again, an untold number of quilts for others to enjoy.  Her hands took meals to shut-ins.  Her hands stuffed envelopes for the Crisis Pregnancy Center, for missionaries, and for church. 

Her hands cared for Dad for eight years as he fought cancer.  And it was her hands that he wanted to scramble his eggs that he loved during the final few weeks of his life.  Only her hands would do, and I understood that totally as I stepped aside and let her do this thing that she loved so much.  It was in their little kitchen that I noticed her hands doing things differently than she had ever done…..and I knew that the Alzheimer’s was lurking, waiting to overcome her in the following years. 

Her hands worked hard to care for Dad during that final month that he lived.  He preferred her hands above all others, but he knew that she was struggling, and so he allowed Jan and I to help as well.  But it was Mom’s hand that he reached for as they sat on the couch.  It was Mom’s touch that comforted him when he was so sick.  It was Mom’s hand that he held as he lay in his hospital bed…..her hand reaching through the bed rails as she lay alone in their bed beside his hospital bed. 

Jan took one last picture of Mom’s hands as she lay dying this past May.  There they were, crossed on her lap, still and unmoving.  She was nearing the end of her time on earth.  Her hands, though, spoke volumes to all of us.  I’m again so thankful for the picture that Jan took.  Her hands showed the evidence of years of love and work.  Now her hand’s work was done.  It was time for her to rest.

 
But the work of her hands will never be done.  Her work in our lives does indeed live on.  So much of who we are and what we are is because of her beautiful hands in our lives.  None of us King children would be who we are today without the influence of her godly, kind hands.  Then our children, and their children, show the impact of Mom’s hands.  What a treasure is to be seen in those soft, wrinkled hands! 

I’m pretty sure that her hand is now holding Dad’s hand in heaven.  I doubt that they’ve let each other go since she’s joined him there.  Unless there’s work for her to do, and then I can totally see her using those hands to make something or to keep things straight.  I wonder how many quilts she’s made by now? 

The Proverbs 31 woman was described as one who works with willing hands.  Our mother did just that, and for the rest of our lives we will benefit from her wonderful, willing hands in our lives. 

Happy Birthday, Mom.  Thank you for your beautiful hands in our lives.  You will always be loved.

Along Came a Storm

Saturday was a day that Aaron had anticipated for a few weeks.  That’s because Saturday was the day we were celebrating Rosa’s birthday by eating with her family at Chili’s.  Aaron and Rosa are very special friends.  They don’t see each other very often anymore since Rosa has a new day group and a new residential setting.  These infrequent get-togethers are very nice for both of them, and usually very enjoyable for us parents.

I knew that Aaron was excited about going to the birthday dinner when at 10:15 Saturday morning, he asked what time we were leaving.  I told him that we would leave at 4:45.  He asked again a little after 1:00, and of course my answer was the same.  He told me that it was going to be a long time before we left, but he hurried back up to his room and got busy once again.  I was surprised that he didn’t ask about our leaving time again.  I expected at least two or three more queries, but he didn’t ask further. 

Aaron and Rosa were happy to see each other, in their own way.  Rosa opened Aaron’s gift right away, and soon was holding some of the colored pencils he gave her in her hand.  At one point, amidst the commotion, I just watched the two of them.  Rosa talked and Aaron responded as he listened to every word she said.  Aaron didn’t really look at her like you and I would, yet he was listening and answering. 
 

After dinner, Aaron and Rosa wanted Rosa to ride in our van to her house.  We had all planned to go to Rosa’s house for birthday cake, so off we went on a pretty drive through the country west of Wichita.  Storm clouds had been building in that direction.  They were beautiful to see as we looked out over the flat Kansas landscape.  The clouds, the lightning, and our radar told us that soon we would have a good old Kansas thunderstorm. 

 
Leroy and Louise’s house is an old family farmhouse, built in 1912.  They have remodeled it, and it’s just so lovely and interesting.  We thoroughly enjoyed walking around the yard, learning some of the history.  Then it was fun to take the inside tour, seeing original elements of the house that are still intact and appreciating the updating that has been done.  I loved seeing the various family pictures on the walls, a story waiting to be told for each one.

However, as we oohed and aahed and asked our questions, Aaron was becoming pretty perturbed.  He had lost interest in the house, the history, the beautiful views from the large windows, and even Rosa’s room that he finally got to see.  I was trying to enjoy this time with friends, but Aaron was demanding more of my silent attention……and then eventually my not so silent corrections as his attitude was becoming more evident.  When Gary and Leroy came inside, Gary joined me in our attempts to keep Aaron on track. 

It was time, then, to look at Rosa’s pretty cake.  The candles looked like crayons, perfect for Rosa.  She had jungle themed plates, cups, and napkins in bright colors.   Those were also perfect for Rosa because she was adopted by Leroy and Louise from a jungle tribe in Brazil.  Talk about a story!!  Now there’s one for sure!

 
 
 

 
We sang Happy Birthday, and then Louise asked Aaron to help Rosa blow out her candles…..which he did, by blowing them all out except for one.  Rosa didn’t seem to mind, thankfully.  But Aaron still wasn’t happy.  He was continuing to let us know that he was ready to go home.  We knew that arguing with him wouldn’t help at all, but only make matters worse.  He didn’t want to sing Happy Birthday (but then he really never does like doing that); he didn’t want to eat cake; he didn’t want to eat ice cream; he didn’t want to drink sparkling grape juice; and he didn’t want to sit and watch us do all those things.  But we did sit and enjoy our cake and ice cream and sparkling juice…..with Aaron lamenting that he wanted to go home.

The storm was picking up outside and lightning was flashing, which only increased Aaron’s insistence that we go home.  His agitation was increasing, too, just like the storm outside. 

 
“Aaron, you’ve wanted to come to Rosa’s house for the longest time.  Why are you acting this way?  Why do you want to go home?” I asked.

“Because I want to watch the storm from MY room!” he answered.

I wasn’t at all surprised by his answer, though I was disappointed at how unhappy he was.  He wasn’t out of control, but he wasn’t enjoying this time that he had said he wanted to someday have.  Time to see Rosa’s house and Rosa’s room and Rosa’s life.

But a storm had intruded, and suddenly nothing else was interesting to Aaron.  All of our talk was about a house and a history that surrounded this pretty house, while Aaron just wanted to see it all quickly and then go home where he could get back to his world and his house and his history……and enjoy the storm in his own room, where storms are meant to be enjoyed.

It seems selfish to us, but when you know autism you know that it’s really not selfish.  It’s just rigid.  It’s Aaron’s rigid way of living his life.  Yes, Aaron’s life is mostly about Aaron, but those realities are beyond his control.  He thought that he was using great control to stay as long as he did without a complete meltdown…..and I guess we should be thankful for that as well.

That evening to me was a perfect example of the saying about trying to fit a square peg in a round hole.   Wanting Aaron to just get over it…..wanting him to enjoy the talk and the tour…..wanting him to really get excited about the birthday celebration with the cake and the decorations…..wanting him to enjoy the storm at Rosa’s house instead of in his room at his house…..well, it just wasn’t going to happen.  We could hammer all day, but the square peg would NOT fit in the round hole.  Nope.  Not going to happen.

It’s embarrassing to Gary and me, but we do understand what makes amazing Aaron tick.  A storm in any other place is just not right.  He wanted his house, his room, his pajamas on, his way.  I’m glad we did stay and we did make Aaron stay, stretching him beyond his comfort zone without devastating him.  I’m glad that Leroy and Louise understand, and I hope that Rosa was happy with the evening.  I do wonder what she was thinking, but she also knows Aaron well. 

You know, if Aaron was blind I would never ask him to go walk down a busy sidewalk by himself, unassisted in any way.  If he was in a wheelchair, I would never ask him to go up or down a set of stairs by himself.  Aaron is confined, in a sense, by autism.  He is confined to a way of functioning that cannot be overcome by mere encouragement.  Just like I could not cheer him in a wheelchair into being able to conquer those stairs, I could not cheer him with my words or expectations into being able to function appropriately at Rosa’s house on Saturday night.  He cannot just ignore his autism…..cannot stuff it into a corner of his brain for an evening and act like we want him to act.  He does try, like he did at Rosa’s house, but it’s very difficult for him.  We see progress sometimes, and other times not so much. 

On the way back to our house on Saturday evening, the rain fell hard against the van.  Aaron was sitting in the middle seat, visibly relaxing as we headed to our house.  He went inside, talking happily, and quickly changed into his pajamas.  Later, we had some conversation about the evening…..what was fun and what we were disappointed in concerning his behavior.  Will he learn from it?  We can only hope.  We can only keep trying.

But most of all, we must keep understanding and we must try not to be too discouraged.   We all have ups and downs.  Aaron’s are just usually louder and involve the people around him, no matter who they are. 

Maybe that’s why he likes storms so much.  They’re definitely seen and heard, just like Aaron. 

We were sure that Saturday would find us slipping that round peg in a round hole with no problem.  We were sure that the evening would be an easy fit for Aaron.  But along came a storm…..

Who would have thought?

 

Birthday Weekend Highs and Lows

This past Saturday we celebrated Aaron’s birthday.  It was a big one, too, because Aaron turned 30 years old.  However, to Aaron it was a big birthday because every birthday of his is big in his book.  He had none of the qualms or sadness or excitement about turning 30 that most of us have……which is really good, I guess, because he doesn’t fret over age at all.  He frets over more important stuff, like are we sure we’re going to Texas Roadhouse and that Rosie can come and what time we’re leaving and can she come over to our house after dinner.  30 years old means nothing to him……supper and time with Rosie does. 

In fact, for months he and Rosie have talked about his birthday.  Every time I would see Rosie when Aaron was brought home from his group, she would ask me if she was going to get to come to Aaron’s birthday.  I think some of the other clients got tired of hearing about it, but Aaron and Rosie checked and double checked, over and over. 

A couple weeks before his big day, Aaron looked at the calendar and mentioned that his birthday was coming soon…..for real!  “Mom!” he exclaimed.  “At first it seemed like it was a long time for it to come!”  Now it was within sight, almost, and his excitement was building.  Aaron has never liked a ton of attention on that day, surprisingly enough.  He loves the food and the gifts, but he still doesn’t want singing or other attention focused solely on him.  He’s a mix of emotions around that day, for sure.

So I was surprised when he agreed for me to make cookies for him to take to his day group on Friday, the day before his birthday.  I offered, thinking he would say no, but instead he said yes…..and I was very happy.  It’s like having a child in grade school again.  I gave him cookie ideas, none of which greatly excited him……until I suggested M&M cookies.  He said a hearty yes to that idea, so last Thursday I made his M&M cookies.

He saw them cooling on the counter when he walked in the door that afternoon, but instead of sounding excited about them, he seemed a little hesitant.  I wondered if he would back out of taking cookies, not liking the thought of too much attention.  He barely looked at them when he walked by, so I pointed them out to Aaron with enthusiasm.  He flatly said, “It’s kind of crazy.”

“Oh, it’s not crazy to take cookies,” I told him.  “It’s a fun thing to do in honor of your birthday.”

“Well, what’s it mean to be in honor of your birthday?” he asked.

And I explained what it meant while he paced around the kitchen, acting almost scared of the cookies laying there.  I thought I gave a very concise, understandable explanation…..and then Aaron said, “But Friday is not my birthday.”

HaHaHa!!!  So typical Aaron!  Life should be in order, and celebrating his birthday the day BEFORE his birthday is very out of order.  Silly Mom, he seemed to be thinking…..but the next morning he did take the cookies and he shared them with his group.  Progress!

He didn’t know that I had planned tacos for our supper that night.  He had been wanting tacos for a while, so I thought that tacos would be a fun Friday night supper just before his birthday.  When he got home that afternoon, he grinned broadly when I reminded him that tomorrow was his birthday!  And before I could tell him about the tacos soon to come, he said, “Mom?  Can we have what I want for supper and not what you want?” 

I laughed and asked him what he would want.  He said tacos, and I loved the smile on his face when I told him that tacos was what I had planned.  His birthday eve was going well! 

The next morning, Gary and I both wished him a very happy birthday and he just replied, “Yeah,” as he walked away.  I made his usual apple pie that he loves, and he looked at it with very little visible excitement……but I know how Aaron’s mind works and I knew that he was taking mental notes of everything and enjoying it in his way.  The traditional birthday sign, the gifts and “30th” birthday balloon on the table, the apple pie…..all of it was important to Aaron, though he showed little outward joy about it all. 

We met Leroy and Louise, along with Rosie, at Texas Roadhouse…..but there was an hour wait, so we decided to go up to Outback.  Rosie rode in our van, she and Aaron sitting in the back, and talking the whole way.  No one minded changing restaurants and it worked out well.

After dinner, we headed to our house.  Rosie and Aaron rode with us again, talking as always.  It was a fun evening of pie and ice cream, Aaron opening gifts and cards, and plenty of talking again.  It was wonderful to see Aaron and Rosie enjoying their special friendship on this special day.  And Aaron loved having everyone go upstairs before they left so that he could show them his bedroom.  That’s what Aaron does!

 
 
 
Later that night, I told Aaron about all the many birthday greetings he had gotten on FB.  I told him that at that point he had 48 birthday wishes!  He smiled, and so I started reading some of the comments.  He patiently listened for a minute and then interrupted me to ask, “Are you going to mention all 48?”  I guess he had heard enough, so off he went to his room to examine his new birthday gifts and to unwind after a fun evening. 

The next morning, Sunday, he had a seizure at 4:30, and another one at 7:00.  Gary and I stayed close to him all day, and sure enough he had another seizure later that night while sitting in his desk chair.  He was fine and was able to get in bed after a while…..but as always, our emotions were mixed.

So happy he had a wonderful birthday……so thankful that he didn’t have a seizure day on his birthday……so sorry to see him seizing and then see the effects on his body and mind all day.  So thankful that he slept well last night and woke up being his perky self.

I saw a picture on Facebook this morning that said no matter what is going on, there is always, always something to be thankful for.  Being thankful is an exercise that all of us benefit from, and is certainly what God has told us to do. 

And thanks to each of you who love Aaron and wished him a Happy Birthday!!  Your love for Aaron blesses our hearts and encourages us more than you know. 

“Yeah,” as Aaron would say. 

 

 

Matters of the Heart

Aaron is now 27 years old.  I know that he is a man, a grown man, and that fact is very hard to imagine.  28 years ago Gary and I were anxiously awaiting the birth of our first child.  I had made all the yellow gingham nursery curtains, bumper pads, changing table covers, and decorated with yellow, fluffy duck decorations.  Everything was as I wanted it.  And even though I went into labor 3 weeks early and Gary had just changed out of his flight suit when he rushed me to the hospital, we were really ready – for the most part – or so we thought.  What new parents can ever be really ready for the responsibility that awaits them?  And what new parents can ever comprehend the depth of love that washes over you when you first hold that little part of both of you?  Aaron was so little and perfect and beautiful.  And my radar screen was still showing sunny weather with not a storm in sight.

When Aaron had his first seizure and was diagnosed with Epilepsy, and than years later was diagnosed with Autism, we were completely unprepared.  We never, ever expected such a thing to happen to us.  To someone else, yes.  Someone we would read about in a magazine, or hear about from a friend, or receive a prayer request for at church.  The reality of this event in our lives with our Aaron was just so unexpected and unwelcome.  And as I said earlier, when I got home from the hospital after his Epilepsy diagnosis, I cried my heart out with tears for Aaron, for us, and with pleas to God for His grace and strength.

I had a choice to make and I chose to focus on what I KNOW.  And what I know is that God is sovereign.  God is in control and none of these events surprised Him or confused Him.  God loves me and God loves Gary, and God certainly loves Aaron.  I cannot and will not ever try to explain the ways of God.  There is no unfairness with God, I do know that.  So instead of wasting time and energy trying to explain the why of our situation, my choice was to trust the Who in our lives.  And that would be God.  I know from my walk with Him for all these years and from reading His Word, Who He is.  I know that His sovereign plan is best even when He doesn’t choose to reveal it all to me.  I trust Him and I love Him and I have found Him always faithful.  Those things I know.

While in Leavenworth, God gave me Psalm 18:29:  “For by You I can run upon a troop; And by my God I can leap over a wall.”  I just love this verse!  It’s my theme verse in so many ways.  Oh, the walls that I’ve run into in our life with Aaron!  I’ve shared many of them in the past few posts.  So many times I’ve run into walls, beat my head against walls, beat my fists on the walls, tried to climb walls with my own strength – but by my God, I can LEAP over the walls.  What a promise, fulfilled in so many different ways in so many different situations.  So I also know that with God, I’m a wall leaper!

But there are also some things I feel, and feel deeply.  These feelings come from within my mother heart.  I think of my heart as having various doors that open when needed.  Doors of love, of wisdom, of encouragement, of laughter, and on and on.  But there is a door that I rarely open because it is too painful.  That is the door of my regrets and wishes for Aaron.  I do not live in regret or in unfulfilled wishes for Aaron, but occasionally those thoughts slip in or that reality hits me in my heart.  Once after Aaron started going to the job skills school, he came home one day and said, “Mom, I’ve noticed something.  All the kids at that school have problems.  What are my problems?”  I struggled not to cry as I tried to talk to him about Epilepsy and Autism.  He was satisfied and seemingly unconcerned, but I knew he was pondering these issues very personally now.  And it broke my heart.  I remember when Andrew got his license and later came home with his used truck.  We had purposely not made this a big deal because Aaron was often jealous of Andrew’s life.  But Aaron looked outside and saw the truck, so he asked if that was Andrew’s.  I said yes and Aaron said, “I wish I could drive.”  Little glimpses like that into his heart made that door of my heart start coming open.  There are times for tears, but not time to wonder about what could have been or might have been.  Living in defeat is not God’s plan for me or for Aaron.

And there are so many reasons to be thankful.  Gary led Aaron to the Lord when he was 6 years old.  Aaron has that understanding.  He can walk, and run, and see, and talk (can he ever!).  Things could be so much worse.  He can read and understand, and even though he can be sooooooo irritating sometimes, he also makes us laugh – a lot!

In closing I want to post a piece that has always spoken deeply to me and I hope it will to you, as well.

 

“WELCOME TO HOLLAND”

By Emily Perl Kingsley, 1987. All rights reserved.

 

I am often asked to describe the experience of raising a child with a disability- to try to

 

help people who have not shared that unique experience to understand it, to imagine how it

 

would feel. It’s like this………..

 

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.
You buy a bunch of guide books and make your wonderful plans.  The Coliseum.
The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in
Italian.  It’s all very exciting.
After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.
Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say.  “What do you mean, Holland??  I signed up for Italy!  I’m supposed to be in
Italy.  All my life I’ve dreamed of going to Italy!”
But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease.  It’s just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.  And you
will meet a whole new group of people you would never have met.  It’s just a different place.  It’s
slower-paced than Italy, less flashy than Italy.  But after you’ve been there for awhile and you catch
your breath, you look around…………and you begin to notice that Holland has windmills and Holland
has tulips.  Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy………..and they’re all bragging about
what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where
I was supposed to go.  That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away………because the loss of that dream is a very,
very significant loss.
But………if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to
enjoy the very special, the very lovely things………….about Holland.

 

 

 

 

 

 

 

 

 

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