Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

Lessons From the Untended Garden

As I opened our back door this morning, I was still expecting to be hit by the furnace-like temperatures that we’ve endured here in Kansas for weeks. What a pleasant relief, though, to feel the almost-cool air hit my face and to see the clouds in the sky instead of the blazing sun. It’s been wonderful to sit outside in the morning or the evening without feeling like I’m sitting in a sauna. The rains that we’ve had recently have rejuvenated both my garden and my spirits. How nice it’s been to be able to take a break from the constant, daily watering duties that I’ve had for most of the summer! To wake up in the mornings and say, “Aaaah! I don’t have to go out and water and sweat today!” has been almost like being on vacation.

So as I lazily walked outside this morning with a cup of coffee and began to walk around, I was hit with some stark reminders. In this time of respite from my gardening, I’ve allowed some unpleasant things to creep in among my flowers and vegetables. I remember writing to the gardening editor of our local newspaper a few years ago and one of her replying comments was that our gardens are to always be a place of beauty. While we were being baked and going thirsty in our extreme heat and drought, I was out in the gardens daily trying to nourish them and save them. During that time, I was able to see the weeds, the dead growth, or the other problem areas and then take care of it right away.

 However, now that the crisis has eased, I’m not paying nearly as much attention to the details of my gardens. It’s starting to show, too. Dried blooms need to be removed; weeds need to be pulled; unproductive plants need to be cut back; vegetables need to be picked. It’s time to shake myself and to be alert and busy once again. Time to ensure that my gardens are a place of beauty and not a picture of neglect!

During the storms of my life I can distinctly remember going to God and to my Bible, asking for direction and for a Word from my Lord. Time spent with Him was valuable and necessary to me. I wanted to hear from Him! I needed God and I needed His attention in my life. I have so many verses in my Bible that are highlighted and then beside them I have written a date with a small note of the event that was taking place at that time. The majority of them are during a time of storm and crisis.

 Yet during the reprieves of life, when things are pleasant and uneventful, it’s very easy to neglect that time with the Lord. Or maybe I still spend the time with Him but not necessarily with the fervency that I have during the time of trials. If I’m not careful, I will begin to see some ugly results of this attitude. Weeds of indifference, apathy, pride, and self-sufficiency will mar the beauty of God’s image in my life. My inattention will certainly result in deadness instead of growth. The Psalmist expresses this beautifully in Psalm 119:92-93 – “If Your law had not been my delight, then I would have perished in my affliction. I will never forget Your precepts, for by them You have revived me.”

May I remember Your precepts, O Lord, not just in my times of affliction but also in the times of refreshing. May I be revived in every stage of life by Your Word and by Your presence that I daily seek, so that my life will be a reflection of Your beauty.

Old Timey!

We never know how Aaron is going to react when we tell him it’s time to get off the computer at night.  Sometimes he’s fine, sometimes he’s slow, and sometimes he’s grouchy………….very grouchy………….or very, very grouchy.  Aaron is no fun when he’s grouchy.  He’s really annoying when he’s very grouchy.  And he’s nearly intolerable when he’s very, very grouchy.  Like he said one night when he got off the computer without a fuss, “Was it good that I’m good enough?”   Oh yes, Aaron, it’s very good when you’re good enough!

It took him awhile to finally finish his game and get off the computer on Saturday night.  However, he was in a funny mood and not at all grouchy, so we were very relieved.  This was one of those nights when he kept thumping back up the hall to our room to talk to us.  First it was to talk about his game that he was playing and what some of the characters are named.  “Mom, the girl’s name on that game is Jan.  Is that a real word for a person?”

Well, yes, Aaron………..Jan is a real word for a person.  He asked, “Do you know a Jan?” 

Aaron, my sister – your Aunt Jan – is named Jan.  “Oh yeah!” he replied.  “I didn’t think of that!”  Sorry, Jan. 

Then he continued.  “The guy’s name is Kyle.  Is Kyle a real word for a person?”  I told him that it was also a real word, a real name, for a person.  “Do you know a Kyle?” he asked.

So I told him of some Kyles that we know, and he was satisfied that these were truly real words for real people.  You never know what Aaron will come up with, honestly.

Then he wanted me to come to his room to help him straighten the covers on his bed.  I was getting tired, so I gave the top covers a quick pull and a quick tug………..but oh no, that was not enough for Aaron.  “No, Mom!  Will you help me with the other kind of stuff, too?”  And he proceeded to pull back the covers that I had just smoothed in order to show me that the sheet needed some adjusting as well.  Sigh.

OK, Aaron, let’s straighten the sheet and then the first cover and then the second cover and the pillow.  All right, we’re done.  Good night.

“Wait, Mom!  Can you help me put my fuzzy blanket on?”  Another sigh.

So I started to put his fuzzy blanket on top, until Aaron stopped me.  “No, it goes this way, with the tag up here.”  So I complied with the very particular way that Aaron wanted his fuzzy blanket placed on top of this other covers……………knowing that if I veered from his preferred method, I would be in there doing it all over again…………Aaron’s way.  I have learned some things over the years.

As we worked, I once again stressed to Aaron that he did not need to wear his long pajamas, his long sleeved shirt, AND a sweater to bed………….underneath all those heavy covers.  I knew that this conversation was probably futile, but I still wanted to try.  In order to drive home my point, I said, “Aaron, I just wear my nightgown to bed and have less covers than you, and I’m fine.”  With that, he began to chuckle, so I asked him what was funny.

“Your nightgown,” he replied.   “My nightgown is funny?” I asked. 

“Yeah,” he said.  “It looks like underwear.”

Oh good grief!  Here we go down this path again!  Why did I open that door?  I remembered when he went to his group and told them that his mom had come into his room in her underwear…………and it was just my very decent nightgown!!  So as we finished smoothing his fuzzy blanket and as he was checking the tag placement, he got an ear full concerning the difference between decent nightgowns and underwear.  Sheesh!

Aaron had one more thing to tell me as I walked up the hall and into the bedroom.  It had to do with Bob Seger’s song, “Old Time Rock and Roll.”  I know – what did that have to do with fuzzy blankets and nightgowns?  Nothing.  Except to Aaron, somehow and someway.

“Mom, the other day in the van Cody was playing that song that I like.”

What song was that, Aaron?

“You know, that “Old Timey Fashioned Rock and Roll!” he exclaimed.

I laughed and Aaron laughed………….although for different reasons, as is often the case.  I didn’t correct him because I liked the ring of that new title.  Old Timey Fashioned Rock and Roll just conjures up old men playing their old fashioned rock and roll to little old women in their wheel chairs at the nursing home. 

I know.  I was tired.  Time for bed, Aaron.  Take your sweater off!!!!

 

I’m Sorry

A couple days ago, Aaron woke up in a very bad mood.  He’s been awfully tired lately, and he certainly was on this particular morning.  He was in no frame of mind to be messed with………and my telling him to get ready to leave for his group was definitely messing with him!  I knew we were in trouble when he said, “Mom!  I don’t want to go today!!  They’re having tuna sandwiches for lunch!!!!”  

This was on Wednesday, and on Wednesdays Paradigm fixes lunch at the center for the clients.  I’ve learned that if Aaron doesn’t want to go on that day, then he’ll tell me that they’re fixing tuna sandwiches…………figuring that Mom will wonder who on planet earth would expect their son to eat TUNA sandwiches??!!  In my deep empathy, I would certainly invite Aaron to stay at home and watch movies and play computer games and maybe even eat pizza, if he’s lucky.  I mean, come on………TUNA?!

What Aaron doesn’t understand is that:  1. I like tuna.    2.  I don’t get why he shouldn’t like tuna.    3.  I fell for the tuna trick once and that was enough.    4.  I know how to text Barb in order to check his story.

So text I did, and Barb told me that they were having ham and turkey sandwiches.  And I should add a number 5.  I had bought food for Aaron at Sam’s to take to Paradigm to eat for his lunch when he wanted.  Food that Aaron likes………..but on this Wednesday Aaron informed me that he did NOT like the food from Sam’s either.  He began playing the blame game, saying, “Mom, it’s your fault for getting me that food at Sam’s!!”  As well as, “Mom, it’s your fault for making me go!”  And of course, “Mom, it’s your fault that I’m tired!!”  Really? 

Now I’ve been sick this week, probably strep, and on that day was feeling none too good.  I was not in the mood for a fight or for a game of “Who Can Win This Argument?” or for any hateful behavior on Aaron’s part.  It was probably a good thing that I was moving like a turtle, both physically and mentally.  I was talking slowly and softly, moving slowly and methodically……………feeling like I was in slow motion.  Aaron seemed to feed off of my slowness, because he didn’t escalate like he usually does………even when I told him that he was indeed going to Paradigm, and that he could indeed eat some of his awful food from Sam’s. 

When Aaron gets really mad, he’ll try to break something – and often succeeds.  Many times he’ll break something that is important to him, like his watch or his remote.  He’s gotten better, though, since the day I told him that if he broke something then I would break something else of his.  He didn’t like those terms.  On this day, he picked up his remote and then put it down again, but rather hard, and I gave him my warning.  He followed me into the bathroom and continued to rant, increasingly unhappy that I had texted Barb and that I knew the fallacy of the tuna sandwich story.  His mind was probably already concocting another horrible lunch dish to try on me the next time. 

Aaron knew that I wasn’t feeling well, but I didn’t mention it at all during this episode.  I knew he would  show no concern or care, and that it would only make things worse.  I continued to move slowly, to talk softly, and to show no emotion.  And he began to de-escalate.  He was calming down, for whatever reason, and I was hoping that the worst of the storm was over.  I walked into his room and found him sitting in his desk chair.  He turned the chair and himself toward me as I stood there, and then the most surprising thing happened.  He reached for me…………and I drew back for an instant, thinking that he might be wanting to slap at me.  But he was reaching for me, with his head down………….no eye contact……….and so I went closer.  He wanted to hug me!  I reached out to put my arm around his shoulders, and he laid his head on my chest………..like little Aaron from years ago.   Then he said, “I’m sorry.”

It’s amazing how those two words, spoken with true contrition, can wipe the slate clean.  There are times that Aaron says he’s sorry, but he says it with such an attitude that you know he doesn’t mean it.  Something like, “OK!!  I’m sorry!!  Are you happy??!”……..just doesn’t cut it.  But his contrition and tone of voice were sincere, genuine, heartfelt…………and it deeply touched my heart.  I treasured that hug and I thanked him, then left the room………..still walking slowly but with more lift in my step and more joy in my heart. 

I stopped by Sonic on our way to meet his group, and let him buy a grape Slushie.  And we listened to his favorite CD………..The Four Tops, of course!  And of course, Aaron talked!

“Mom, what’s that jinging sound they’re making in that song?”

It’s a tambourine, Aaron.  You know, they hit it against their leg or against their hand.

“Oh, I thought they hit it on their head.”  And he laughed, and I laughed at the thought of hitting the tambourine on their head………even though I’m sure that Aaron would like that way of playing a tambourine much better than the normal, boring way.

“Mom, The Four Tops sang in the old days.”

Do the 60’s seem like the old days to you, Aaron?   “YES!!” he answered……..as I felt very old.

“Mom, I noticed something.  They sing about women.  What’s so important about women?!” 

I was just starting to expound on the importance of women when we pulled up to the van to join his group.  Too bad!  I had a lot to say on that topic!

I also know the importance of Aaron…………even on the bad days.  And I know the importance of his genuine “I’m sorry.”  How healing those words are, across the board, in our lives.   How impacting they are when they are said with true repentance and sincerity…………..and when they came from our Aaron.

 

Laughter – And Comfort – In This Smelly World

Today Aaron and I went to one of his yearly meetings to update paperwork that the state requires as part of the services he receives.  Last week the meeting was at Paradigm, his day service provider.  It’s interesting to go there and to see some of Aaron’s friends.  Some want to hug me, some want to shake my hand, and some want to talk to me.  They are all so varied and interesting………some with sad stories, I’m sure………..some with strong, loving families and some not so blessed.  The staff there is amazing – full of love and understanding and so much patience.  I’m forever grateful for them.  As I was leaving, one of the young clients walked me to the door and he said, “Mrs. Moore, Aaron looks just like you.”  And then he quickly added, “I don’t mean that in a bad way!”  HaHaHa!  I’m not sure if he meant it would be bad for me or for Aaron, but I didn’t ask!

Today our second meeting was just with his case manager and with Barb, who works at Paradigm and whom Aaron loves.  On our way to Applebees for lunch, we stopped at Great Clips to see if they could give Aaron a haircut.  Sure enough, it was nearly empty and so Aaron got right in – taking off his glasses and then for some reason his ring, as he always does, for me to hold while he got his hair cut.   The girl who cut his hair has seen Aaron before and is very kind, so she chatted happily with him as she cut his hair and engaged him in a great way.  Aaron loves the attention, and the feel of the clippers relaxes him………..so much so that we were wondering if he was going to fall out of the chair as he leaned farther and farther over.  I called to him and then the stylist laughed, and Aaron straightened up………for a minute………and forward he went again.  He perked up when she asked him if he wanted gel.  He loves getting the green gel in his hair, although with a buzz cut he totally doesn’t need it………but he feels special and that’s always fun, for any of us……….and definitely for Aaron.  Plus it sure helps him smell good!

We were still early for Applebees, so I told Aaron that I wanted to run into Lowes to look at valences.  He trotted behind me, talking all the way, of course.  As I looked at the curtains, Aaron saw the clocks…………and we know how he loves clocks.  “Mom, you know those big clocks that make that loud noise?” 

Yes, Aaron – Grandfather clocks.  “Yeah!  Is that why they’re annoying?  Because they’re Grandfather clocks?”   I have no idea why he thinks they would be annoying because they’re grandfather clocks – both of Aaron’s grandfathers were sweet men.  Must be a movie he watched that had grouchy grandfathers.  He couldn’t explain it, either.

He was very interested in the grills lined up outside as we left.  One day after a trip to Lowes with Gary, Aaron came home talking about the round grills……..which he called “bowl grills.”  Today he lifted the lid on a large grill and saw the two racks.  “Look, Mom!  That grill cooks double!”  And then he spied the smoker/grill with the little stovepipe chimney.  “Mom!  There’s a pipe oven!!”  Of course, we had to examine the “pipe oven” and I tried to explain the purpose of a smoker………but Aaron was just focused on the little pipe chimney.

On our way over to Applebees, a truck passed us that was carrying a ramp with holes in it.  “Mom, that reminds me of those big trucks that have holes in them that carry animals.”  I told him that yes, they carry cattle or other animals.  I asked, “Aaron, have you smelled the cattle trucks?  What do they smell like?”  First he told me, “They smell dumb!”  And then he added, “They have too heavy a smell!”   Oh, yes, they do indeed!

Our meeting at Applebees went well, mostly because there was food involved.  For some reason, Aaron wants to pinch or poke his case manager – so I was happy that he sat across the booth from her.  He still managed to kick her, though.  Oh, Aaron!  He feels nervous at these meetings, thinking that she’s going to tell him he has to leave Paradigm, so this is his way of showing his fear.  And of embarrassing his mother. 

Aaron ordered Spinach/Artichoke dip with chips, which surprised me………and a house salad, which did not surprise me.  He got his salad before any of us got our food, and he promptly started putting the croutons on the table.  I stopped him, and he waited until I got my salad……….and I inherited the unwanted croutons.  Aaron wanted to know what the black stuff was in his dip………..that would be spinach, Aaron.  He dipped each chip very gingerly in the dip, then shook and shook the chip, and took a little bite.  Most of the dip was uneaten, of course, leaving me wondering why on earth he ordered such a thing.  He talked and talked and talked some more during our meeting, loving the audience and the chance to tell whatever came to his mind.  Somehow as we left, his case manager said this was her favorite meeting.  Was it the food or was it Aaron?  I didn’t ask. 

Aaron thumped downstairs just now to tell Gary and me about the rest of his day.  Brandy, the owner of Paradigm, has two sons.  One is Dirk, who is probably 6 years old now, and the other older son’s name escapes our memory.  Aaron excitedly said, “Mom, guess what Brandy brought to Paradigm today?!”  He paused for me to answer, so I replied, “What did Brandy bring to Paradigm today?”  And Aaron answered, with a huge smile, “A little girl!” 

Since when is a little girl a “what” and not a “who?”  Anyway, Aaron was very interested in the fact that Brandy, who has two sons, now has a little girl………..and he wouldn’t hear any of my comments about the fact that she was probably a niece or whatever.  To Aaron, Brandy has a little girl.  Then Aaron said, “I haven’t seen Brandy’s boys in a long time.  Remember?  Dirk and Jerk?”  

JERK?  OK, I had to laugh…………and so did Aaron………….and so did Gary.  We can’t remember the older son’s name, but I am quite sure it’s not Jerk…………even though Dirk and Jerk do have a certain ring to them. 

Aaron thumped back upstairs, quite pleased with his little funny saying and with our laughter…….and repeatedly assured that yes, Aaron, I WILL come get you IF I can play Skip-Bo.  And so almost ends another day with Aaron.  I am very thankful for the good people that God has put into our lives………..the ones who cut Aaron’s hair, take his restaurant orders with a smile, work out his yearly plans despite being kicked, love him so patiently at Paradigm, and give him ideas of funny names. 

And I’m thankful that God gave us Aaron.  The future may be uncertain as we make his yearly plans.  The winds of change are blowing in the state services that we receive.  Those winds may blow our way and leave us with “too heavy a smell.”  We don’t know what all the changes mean for Aaron and for us.  But God never changes and He loves Aaron more than we do.   

And that ‘s more comforting than anything else in this old smelly world!

From Hay Barrels to Football

Aaron came down from his nap today, hungry and full of things to talk about.  I heated up some leftover taco soup for him while he went to the bathroom.  He marched back into the kitchen and when I turned around he was munching on a Rice Krispie Treat.  Yes, I made some yesterday and we actually have a few still uneaten!  I told him not to eat sweets right before his lunch and he complied, amazingly enough.  He was suspicious of this strange looking soup – the black beans mixed with the tomatoes and corn gave it an unusual color to him.  But after one bowl he was ready for a second, so while it heated he talked all about black beans – and was happy to look at the can of beans I handed him.

Everything is interesting to Aaron – except for people’s emotions.  It’s so strange how that works.  He notices so many details and talks them to death, but totally doesn’t understand at times the simplest emotions.  Today my emotion was laughter as he talked, and he does respond well to that unless he thinks that we are laughing AT him.  Today I was laughing with him and it was very enjoyable.

For instance, out of the blue he said, “Mom, I was thinking that now that it’s winter there won’t be any more of those hay barrels left for the cows and horses.”   Yes, Aaron calls hay bales………hay barrels.  He always has, and it always makes me smile.  They do look like barrels, don’t they?  Anyway, I don’t know what got Aaron off on hay barrels in the middle of taco soup and  Rice Krispie Treats, but as always I answered him with great interest.  He likes to be treated as an adult and to know that we value his conversations………..even as we chew our tongues in order not to laugh, or try to hide our smiles. 

He continued, “The hay is all dead, right?”  I told him how cattle owners buy or raise lots of hay to use over the winter, and tried to talk intelligently about dead hay.  Anyway, I assured him that the cows and horses would be fine over the winter.  Then he asked, “So hay barrels are hay, right?”  Uh……..yeah, Aaron…………hay barrels would be hay.  Right.  And he shook his head yes as I once again hid my smile.

He was examining his bag of Mike and Ikes as he ate his soup.  I was not at the table when he asked, “Mom, have I eaten a cherry?”  I wondered at this question and turned to see him looking at the bag of candy, with pictures on the back of the various fruits represented by this gooey treat.  I assured him that he had eaten a cherry, when he asked, “So a lime is another orange?”  Uh…………no, Aaron………a lime is – a lime.  So I got out a lemon from the frig and used it to describe a lime, reminding him of the limes I bought some time back that he seems to have forgotten.  This led to me setting out the bottles of lemon and lime juice for him to sample, and laughing as he twisted his mouth and shook his head and didn’t want to try any  more! 

He noticed the nearly full trash can when he threw his napkin away.  “Mom, that trash can in the kitchen is getting stuffed!”  Yep, Aaron, tonight is trash night………….and no, you don’t need to take care of it now……….even as he turned to reach for more Rice Krispie Treats.  No more treats, Aaron! 

Off he went downstairs to talk to Gary, who was watching football.  I heard Aaron talking, and Gary replying, and Aaron talking a lot, and Gary replying………..on and on it went.  I came down to join in and enjoy Aaron’s happy mood.  “Mom, remember yesterday when that football player got hurt?  Those hospital people were bent over him.  He looked flattened!” 

Yes, Aaron.  “Mom, what was wrong with that player.  Why was he flattened?”  I assured him that the player wasn’t really flattened and that he just got the breath knocked out of him.  “So is that why those hospital people were standing around him?”  Yep, those hospital people are good about checking on flattened people, Aaron!

Aaron’s not very familiar with football generally.   I wrote several blogs last year about his football comments and insights, many of which were hilarious.   He doesn’t know the various teams, and trying to explain professional football as opposed to college football is next to impossible.  Yet he still observes and he asks lots of questions, such as why hospital people stand around flattened football players.  He then informed me, “Dad wants the team that has the star on it to win.”  That would be Dallas, for those of you who also don’t know much about football teams.  Aaron found out that Dad had voted for Dallas…………that’s  another way Aaron talks about football………..wanting to know which team we are voting for.  I wonder if he thinks Obama and Romney play football?

Aaron wasn’t through with his observing.  “The other team – the team that has the B.A.L. – who is that?”  We told him who the B.A.L. team was and he was satisfied that the B.A.L. team was going to win, even though we didn’t vote for them.  But that’s the way football is sometimes, you know. 

So is life.  We don’t always get what we vote for, but things have a way of working out…………especially when God is in charge.  There will be hay barrels for the cows that Aaron likes and hospital people for the flattened football players and other chances for the team with the star to win.  And candy and Rice Krispie Treats……….if I can keep Aaron out of them!!

The Blessing of Ben

I love blogging about Aaron the way that I’ve been able to do over this past year and two months.  Sharing Aaron with all of you, and our life with Aaron, is a joy and a privilege.  I sometimes wonder who is reading, and I wonder if the blogs are a blessing, or do they ever come across as same-old, same-old……….or shallow……….or silly……….or making light of a serious situation.  I know that many parents of children with special needs really don’t have many reasons to laugh or even smile.  Their lives are full of the daily care of children or adult children who need lots of care.  Days are exhausting and nights are too short.  There is rarely any humor such as we have with Aaron.  Aaron happens to be very verbal and at times, very funny.  Yet there are many seasons of frustration and tiredness for us as well.

My main purpose for blogging is to share with all of you that even in the midst of cares and burdens, and the heartache of having a child with special needs – we can choose to see the good, or the humorous, and to take the time to learn the lessons that God wants to teach us.  I am blessed beyond measure to share these thoughts and lessons with each of you.

Last week I was very touched and very encouraged to hear from a special friend via Facebook.  Doretha Weyant and her husband Brad crossed Gary’s and my path many years ago at Piedmont Bible College.  We have reconnected through Facebook and have enjoyed getting to know one another again.  Doretha and Brad have been a sweet testimony to me, and have given me permission to share their story.  We have communicated a lot on Facebook for a long time, but last week I got this inbox message from Doretha………..and it just blessed my heart to pieces.  She said:

Patty, I thought of you and Aaron yesterday at the doctor’s office. I had gotten on the elevator to go to 2nd floor and a mom with her 2 kids was on there. One looked maybe 8; the other a teenager. The oldest boy said some strange thing very loudly and then went over and hugged his mom. She looked at me and I just smiled at her. We got off the elevator and they were coming to my dr. as well. They sat right behind me in the waiting room, so I couldn’t see them but could hear them. The oldest boy was very loud and kept saying hey mom, hey mom, over and over til she would respond. Then he would tell her all kinds of things from his day, doing so in a rather loud voice. I sat there wondering if he had the same disability as Aaron. Then I went in to see my knee dr. While in there I found out he had Down Syndrome. I thought of your blogs about Aaron and I wish I could have encouraged the mom, but didn’t see them anymore. Just know that Brad and I think of your family quite often and pray God will give you His grace to carry on with your many trials in life. Aaron is a special guy and God has a wonderful purpose for him here on this earth. Love ya. Doretha

The thing is……….Doretha wrote me this note on the day that marked the one year anniversary of her own son’s passing to heaven.  This made her encouragement to me even more poignant and meaningful.  Let me allow Doretha to tell you about their precious Ben:

Ben had Duchenne Muscular Dystrophy which is an incurable genetic muscle disease. He had a mutation on his dystrophin gene, a very large piece of the genetic exons were missing. Dystrophin is the protein that basically keeps the muscles from falling apart. He was diagnosed at 7 yrs old and we were told that he would be in a wheelchair very soon and life span was no more than late teens to mid 20’s. But when you are dealing on a daily basis, as you know with Aaron, you don’t think much about the future.

Ben Wyant
 
Ben had a very loving set of parents in Brad and Doretha, and his siblings as well.  He had many friends and a wonderful extended family, as well as church family.  He was blessed, but I’m sure that he WAS a blessing as well – a huge blessing from all the comments and the pictures that I have seen.  Doretha continues:

October 3, 2011 at 12:55 in the afternoon, as Brad and I sat next to Ben, the angels came and carried him from his earthly home to his Heavenly one. This past year has been the most difficult year of our entire lives and I have shed more tears than I thought possible. We never realized how hard it was going to be to lose our child. We knew since Ben was 7 yrs old that he would not live past his 20’s. But, knowing it and experiencing it is two different things. Brad and I have been blessed with 4 wonderful children, 2 in Heaven, 2 on earth. Thank you Father for our blessing of Ben and the Godly life that he showed to all around him. We know we will see him and Christina very soon!!

I cannot imagine the pain of that moment, and the pain of the days following during this past year.  And did you notice that Doretha mentioned yet another child in heaven as well?  Again, here is Doretha:

Christina is the identical twin sister of our daughter Katie. In 1983, when I was pregnant with them, the medical field was just beginning to know about the problem I had with them. But they didn’t know how yet to fix it. It is called Twin to Twin Transfusion Syndrome. You can look it up if you are interested in knowing more about it, but it’s when one baby becomes more of a host baby and the other becomes the donor of food and nutrients and blood supply. The one baby gets bigger and bigger, while the donor baby does not grow after a certain time. This is pretty rare, but at least they know how to go in and fix it so that the babies have a better chance of survival. So, we knew we were having twins. They were due on March 25. We found out by mid January that Christina had died. Katie and she came a month early on Feb. 28. Since Christina was so small the body starts to absorb the dead tissue. Our doctor advised us that we did not want to have that in our memory. So, we donated her body to the research department at Bowman Grey School of Med. They were doing research on this very thing, so we thought that was best.  We have never seen our precious Christina. But since they were identical twins then she looks just like Katie.

Again, when I read Doretha’s words I realize that this precious child, Christina, was bone of her bone and flesh of her flesh.  She and Brad had such loss at this time………and then later to have loved Ben for all those years, and have to let him go when God called him to heaven.  Are Brad and Doretha bitter?  Are they angry at God?  Are they jealous of others who still have all their children, or even of me as I write about our daily life with Aaron?  You decide as you read what else Doretha told me:

Do you ever wonder why God gave Aaron to you and Gary? We have often wondered why God allowed us to have these strange diseases in our family. Guess we may never know. But, I’m glad that the Lord knows and gives us the strength to endure all these things. Keep up the blogs. I really like reading them!!

Two things stand out to me in Doretha’s words:  First, the Lord knows.  Yes, He does indeed know about our special children.  He knows why they were allowed to be like they are, as fearfully and wonderfully made as any others.  God is sovereign and even when He doesn’t bend down and tell us the whys of His doings, we can trust that all these things are somehow for our good and for His glory.  I believe that often our special children are here to draw us to God in a way that no other person or situation can.  What an honor and a calling!

Secondly, Doretha said that God gives us the strength to endure all these things.  Oh, is that ever true!  How could we ever do it on our own?  “For His strength is made perfect in weakness!”  We don’t know how weak we are until we are at our end and we fall into His arms, and let Him take over.  Complete trust………..complete relief. 

Thank you, Brad and Doretha, for letting me share a part of your story and a part of your heart.  Thank you for being a strong testimony of God’s faithfulness in your lives.  Thank you for allowing your pain to bless us.  I look forward to meeting Christina and Ben in heaven some day! 

Brad, Doretha, and Ben
 
 
And I will continue to write as God leads and pray that He will direct my words to bring honor to Him and encouragement to weary, questioning parents.    

 

 

 

 

The Wonder of the Mundane

Aaron is very fascinated with our pecan tree – not only because of the “pee-cons,” as he calls them, but because of the squirrels that run all over the yard.  It’s fun to watch the squirrels zipping around with their jaws stuffed with our pecans.  Aaron likes to pick the pecans up that the squirrels leave behind and then examine them.  Most of them are just shells or are mangled up pecans that the squirrels or birds have handled.  Rarely do we find a whole pecan that is undamaged.

But today Aaron bounded in the house when he got home from his group.  “Mom!  I found a pee-con!  It was new and had not been opened!!”   He was so excited about this new, unopened pee-con that I had to laugh.  He told me that he gave that pee-con to one of his friends in the van, which I thought was very nice.

Later, as Aaron told me about his trip to Wal-Mart, he talked about some of the interesting food that he had seen.  He loved the bright, orange pumpkins.  “Mom!  Did you know that squirrels eat the nuts inside of a pumpkin?!”  

Somehow I’ve missed the nuts inside of my pumpkins!  I went ahead and told Aaron that those nuts are really seeds, and that he could dry them and eat them too – but he didn’t like that idea.  He continued talking about the next thing on his mind, which was the coconut that he saw.  We’ve talked a lot about coconuts, and have bought fresh coconut before so he could open it and see the coconut milk and taste the fresh coconut.  Yet what amazes Aaron the most is that hard coconut shell.  Today was no exception.  “Mom, that coconut’s outside is like metal or cement!”   Now that’s hard!!

He told me that while he was outside of his day group, he saw a razor and picked it up – and cut his finger.  I was not happy about that, and so he held up his finger that had a band-aid on it.  He took the band-aid off and showed me his finger, which just looked like he had pulled skin – like he often does.  I said, “Aaron, it doesn’t look at all like you cut your finger with a razor.” 

“Yes, I did, Mom!  I was razoning my finger!”   And once again I told him to not pick up a razor, of all things, and do NOT razon his finger!!   There is a reason I often pray for his safety!  Why does he have to pick everything up that he sees?! 

He came down to join Gary and I for supper, and of course had to get more silverware, the napkins, the toothpicks – you know the routine as well as we do by now.  And as he cut his steak,  he placed something in his unused salad bowl.  It was a piece of fat that he had cut from his steak.  The fat could not stay on his plate, just like crumbs cannot stay in the same bowl or plate as his chips or crackers or whatever.  One little piece of fat – but it’s too much to share the plate with his good food. 

 

And we know not to make a big deal of this.  So he dirties a whole bowl for one little piece of meat.  That’s why I have a dishwasher.  It’s just part of what makes Aaron tick…….what makes Aaron unique…………what makes Aaron – Aaron. 

Without Aaron’s insight, I would never have known that pumpkins have nuts inside and that coconuts are like metal or cement.  And his friend would not have seen the wonder of a new, unopened pee-con!  Aaron makes the hum-drum details of life suddenly become full of wonder, at times.  We just need to listen and learn from him.

I need to remember to sometimes see my world like Aaron does, and share that wonder with others.  Life is much more interesting that way!  

I’ll Take Seconds!

Aaron’s color blindness leads to some interesting descriptions of food on his part.  He describes browns and tans as being green, for instance.  One day it was time for lunch and I asked him what he wanted to eat.  We had previously had a Mexican casserole for supper and he liked it, so he remembered that dish when I asked him what he wanted for lunch.  “Mom, can I have some of that Mexican food that was kinda green but yellow, too?”   There was no guacamole involved in this casserole, mind you, so I was a little stumped about how he described it as “kinda green but yellow, too.”  Doesn’t sound at all appealing to me! 

I don’t think this was the same day that he said, as he ate lunch, “Mom, do I get seconds?  Do you want me to fill myself up?”  Aaron, I never need to worry about you filling yourself up.  You do that very well on your own…………and no, you don’t need seconds!  If I was eating a leftover casserole from the frig that was kinda green but yellow, too, I’m not sure I’d even be eating firsts, trust me!

This morning I fixed Aaron some boiled eggs that he likes, and added some bacon as a special treat.  He came home from his group today and said, “Mom, I told Barb what you fixed me this morning.”

So you told her about the boiled eggs and the bacon?

“Yeah, I told her you fixed me those hard eggs and that bacon that was kinda soft and green.”

Hmmmm………sounds like such an appetizing breakfast, Aaron.  Hard eggs and that soft, green bacon.  Yuuumeeeeee!!!

We need to invite Barb over for some hard eggs and soft, green bacon sometime.  I bet she’ll jump at that offer!

What Season Is It Anyway?

In Aaron’s orderly world, the change of seasons presents………..well, change……….and change of any sort does not go unnoticed by Aaron.  The seasonal changes don’t upset him, but they do cause him to feel the need to discuss those changes – a lot.  He enjoys weather, anyway, so when he feels the temperature fluctuations and sees the trees changing then he will talk and talk about it. 

I remember back in the spring, or nearly spring, Aaron came outside to discuss this issue with me as I was pruning our Rose of Sharon bushes. It wasn’t technically spring yet, according to the black and white calendar that Aaron has on his wall, but he was somewhat flustered.  He had just come home from his group and it was a warm day in March.  He marched outside, coming over to where I was working, and said, “Mom, those kids said it’s spring.  It’s not spring until March 20!”  I explained, as I have so often, about how we talk about spring when it starts getting warm but that yes, spring doesn’t really arrive until that certain date that he knows is on his calendar……….in black and white………set in stone.  I thought that once again, after this same discussion over all these years, that he had for this spring……….for this moment………settled the “When Does Spring Really Start?” conflict. 

Silly me.  Later that evening, he walked into my bedroom and said, “So is it spring yet?  I don’t understand that.”  Ah, Aaron…………..seasonal ebbs and flows don’t match calendar dates, do they?  And that certainly doesn’t match your rigid view of the world, your view that is on your calendar, does it? 

It was no surprise to me when on September 21, Aaron came into the kitchen and asked, “Mom!  Is it fall yet?”  He knew it was fall because he had looked on his calendar, but I affirmed that today was the first day of fall.  And his response:  “So why is it hot?”  You see, Aaron also struggles with the fact that the first day of a new season doesn’t mean that there is an instant change in temperature.  This is just another anomaly that doesn’t compute in his brain. 

Our temperatures now have cooled down significantly.  Aaron is actually going to wear long pants today.  Changing his wardrobe every season, from shorts to long pants and then back to shorts in the spring, has always been a challenge for Aaron.  He gets used to one set of clothes and then he has to change.  This includes long sleeved or short sleeved shirts, too!  He would love living in a steady climate, like Hawaii, all year long!

Our cooler temperatures that we are now enjoying have not gone unnoticed by Aaron, of course.  As we played Skip-Bo last night, he said, “Mom, now that it’s cool, warmness is on another continent in the United States.”  He thought I was sighing because I needed air. 

So we discuss a little geography and a little science and a little about the seasons……..and finally just agree that he is correct, to some degree……….which makes him happy and off to bed he goes.  I never would have dreamed that something as routine as the change of seasons would create so much discussion.  But then I never dreamed that we would have an Aaron and that the key word in this seasonal thing is the word  “CHANGE.” 

If it continues to be cool, he’ll be bringing up winter any day now.  And if it snows before December 21, I will be sighing a lot as I once again explain to him how it could possibly snow before winter is actually here.  Seasons were so simple before we had Aaron.

But not nearly as interesting.

The Rice Krispie Treats

Aaron loves Rice Krispie treats.  For some time he had been asking if I would make some, but for one reason or another I had been dragging my feet.  Finally, as I cooked supper last night, he said, “Mom, I told my Paradigm staff that I guess my mom doesn’t have enough Rice Krispies to make Rice Krispie treats.  That’s why you won’t make them, right?”  And I made the mistake of telling him that, no, I have enough Rice Krispies.  After all, I can’t have them thinking that I’m unprepared by not having the most basic of cereals, right?  And before I knew it, I heard a “Plunk!” on the counter and turned to see that Aaron had gotten the boxes of Rice Krispies out and was saying, “So, Mom, can we make Rice Krispie treats after supper?”  Whereupon he opened the cabinet door, and found my bag of mini-marshmallows.   I was trapped, with no reasonable excuse for not making the Rice Krispie treats. 
 
 

Still not wanting to totally commit, I told Aaron that MAYBE I’d make them after supper.  As we ate, he continued to pursue his request for this favorite snack, and finally said, “Mom, can I help you make them?  Like when I helped you make chocolate puddin’?   It’ll go by faster!”   First of all, Aaron really does say “puddin’ “………..just in case you were wondering.  It’s some carry-over from childhood and the Pokey Little Puppy book, I think.  And as far as his assurance that his help would make the fixing of Rice Krispie treats go by faster……….well, that’s highly unlikely.  I sat there remembering all the times that Aaron has “helped” me cook, and how he detests getting his hands messy – which results in many exclamations of disgust and much wiping of his hands on paper towels or washing at the sink.  I was also envisioning his exaggerated stirring, with the contents of various bowls ending up all over the counter or stove……….or how uncoordinated he is with certain utensils, especially knives!………..or how he still hasn’t mastered cracking a raw egg – “No, Aaron!  You pull the cracked egg apart!  You don’t mash in!!!”

Then remembering that Rice Krispie treats have no eggs, I began to reconsider.  Still, the sticky and messy hands, and the stirring…………oh, why not?  I was feeling generous, and Aaron was so eager, that I said yes and made him very happy.  He waited as patiently as Aaron can wait while Gary and I cleaned up the kitchen.  Finally it was time for Aaron to take center stage and help Mom with the Rice Krispie treats.  He got the butter out of the frig, and actually cut the required amount safely as I fearfully watched.  Just as I knew he would, he did NOT want to get the butter on his fingers as he dumped it from the wrapper into the pan on the stove.  After wiping his fingers clean, he watched the butter melt.  “Mom, why is it moving?  Look at it moving!!  Why is it moving?” 

After the fascinating, moving butter had melted I had him dump the marshmallows into the pan and start stirring.  “Oooh, Mom!  It looks like barf!”   Stir, stir, stir…………and then when I looked away I heard a noise, only to turn and find him using the spoon more like a hammer as he plunged it repeatedly into the melting marshmallows.  “Aaron, what are you doing?” I asked.  He answered, “I’m trying to smash those squares!”  Squares?  I looked in the pan and saw what he meant.  Where the melting marshmallows were joining together, some of them did look like squares.  Only Aaron!

“Is it time to pour the Rice Krispie treats?”  he wondered as he saw me measuring the cereal into a bowl.  “Just hang on, Aaron.  You have to stir the cereal in first,” I told him.  He then stirred and stirred until the mixture was pretty well evenly mixed and he eagerly watched as I dumped it into the greased dish.  I turned to do something else and when I looked back at Aaron, there he stood…………holding the pan of Rice Krispie treats as he said, “Mom, I’ll put them in the oven for you!”  No, no Aaron!  We don’t bake Rice Krispie Treats.  They’re done!  And off Aaron went to his room, saying that he would eat one later.  We had survived the entire process without a major issue or disaster!

 
Later that night, Aaron finally ate one before bed.  Then later, after the lights were out and we were in bed, I heard a noise.  Aaron had already gone down to take his pills, so I wondered what he was doing.  When I got up the next morning, I looked at the Rice Krispie treats and saw that  a large section was missing.  I should have known!  Aaron had gone on a mission last night and filled his stomach with his favorite snack!

This morning I had a dentist appointment, so I left just a few minutes before Cody picked Aaron up at home.  I returned to the house later, ate my lunch, and then decided that a Rice Krispie treat would be just the perfect little end to my lunch.  That’s when I noticed that the lid to the Rice Krispie dish was askew.  Hmmmm………..and as I looked, my fears were confirmed.  Sure enough, the dish was empty.  The treats were totally gone!  Oh my goodness! 

 
That rat!  Aaron took……….or ate………..all the Rice Krispie treats after I left this morning!  Maybe he took some to Rosie.  Now I REALLY wanted what was no longer there.  Let’s see – I knew I had the Rice Krispies.  I checked the cabinet for another stray bag of marshmallows, too, just in case there was one hidden behind the pasta………or the peanut butter………..or the cake mix………maybe behind the oatmeal?  No? 

Next time, I’ll make Rice Krispie treats without Aaron’s help……..when he’s not even home……….and I’ll eat ALL I want before he even knows I made them. 

See how he brings out the best in me?