Category: Uncategorized

All I Need to Know

He threw the glass across the kitchen this morning.  At least it was a plastic glass……and at least it was empty.  So began our morning.  Aaron got up just in time to go out to Gary’s truck in the driveway and hug him goodbye.  He was happy and I was hopeful.  Yesterday was up and down with Aaron.  He didn’t like me for awhile but then settled down and we had a nice evening.  We watched Wheel of Fortune, and played Skip-Bo later while eating strawberries.

Simple pleasures, but not always such a simple life with Aaron. 

This morning as we walked back into the house after his goodbye hug for dad, he decided that Mom was the bad guy again.  He told me he wasn’t going to go to Paradigm today, and on and on. 

Oh, the complexities of his mind!  The challenges of autism!  Physical issues I can handle so much easier because the flesh and blood of those special needs is right there to see and somehow grasp.  But the workings of the autistic mind are sometimes anyone’s guess, and this morning I was in no guessing mood.

So I launched back after his verbal barrage got to a certain point.  I pointed my finger at Aaron and I very firmly put him in his place.  But Aaron rarely stays in the place I put him.  I may feel better for a few seconds, but then he opens his mouth and his resolve is more set than ever……his resolve to win the war, even if he loses a few battles in the process.  I know this about Aaron, but I sometimes act despite what I know.  I act on my feelings, and I often regret it. 

The rest of the morning was filled with Aaron telling me he wasn’t going to talk to me anymore, all the while talking to me to tell me that he wasn’t going to talk to me.  Over and over and over.  He also didn’t want me to talk, so I mostly remained silent, which actually drives him crazy.  There was no winning for either of us at that point.

Aaron went to Paradigm, wanting me to come in with him so I could tell Barb to be sure he was nice……and Barb told him the same thing I had said earlier, that he was the only one who could be sure he was nice.  I don’t know for sure how his day has been.  I don’t know for sure that I want to know.

We’ve had lots of storms in Kansas lately.  On our way back from Topeka recently, Gary and I drove through the beautiful Flint Hills.  There on the horizon were storm clouds, and we were headed straight into them.  There was no avoiding the storm.  No matter what road we took, the drive home led into the storm. 

WP_20160523_10_05_11_Pro

And again yesterday, driving Aaron to his day group, we were facing storm clouds.  There they were, dark and threatening. 

WP_20160531_09_49_08_Pro_LI (2)

Driving into a storm reminds me of living with Aaron.  It also reminds me of Moses.  I’m reading the book of Exodus, and in chapter 3 God spoke to Moses in the burning bush.  He told Moses of the job He wanted him to do…..to lead the children of Israel out of Egypt.  And Moses said, “Who am I, that I should go to Pharaoh and bring the children of Israel out of Egypt?” 

The first part of God’s answer was simply this: “But I will be with you…..”

God didn’t say, “Oh come on Moses, you’re the man!  You’re so great!  I know you can do it!”

Moses’ sufficiency rested only in those six words that God first spoke: “But I will be with you…..”

Moses’ sufficiency rested only in God.  Not in himself…..not in his family…..not in his royal connections from years past.  No.  The strength and wisdom and courage that Moses needed rested only in God.

I’m not proud of the times I blow it with Aaron.  I’m not proud of Aaron’s behaviors on the bad days.  I often feel like Moses.

“Who am I, that I can parent Aaron?  Who am I, that I can have patience enough on the bad days to tolerate the behaviors?”

And God’s answer for me is just the answer He gave to Moses: “But I will be with you…..”

It’s no mistake that I am Aaron’s mother.  God put me on this road because of His sovereign plan for me and also for Aaron.  I may feel on some days that I can’t do this correctly, or do it at all, but this is where God has put me.  God doesn’t make mistakes.

So here I am, driving on this life road and headed into yet another storm.  I know I’m not alone in this.  I know of others who are feeling the pressure of the dark clouds on their horizons, and are soon overcome with rain and lightning and thunder.  But if you’re God’s child, He is with you.  He promises you strength, wisdom for the asking, peace in your inner being, and joy deep down.  Whatever your situation…..your worry……your pain…..your secret turmoil……your fear…..your failures, God’s word to Moses is God’s word for you…..for me…. “But I will be with you….”

I don’t always feel this fact.  But I know this fact to be true, this fact of God being with me, and so I can rest in that knowledge even when I don’t feel it.

After I dropped Aaron off and drove home yesterday, this was my view.  All the time I was driving into the storm, just behind me was the lifting of the clouds. 

WP_20160531_10_00_33_Pro_LI

It’s true of my life, too.  God will relieve the burden, even if the situation remains.  He relieves my burden by reminding me of Who He is, like He did to Moses.  And reminding me that He is with me, always. 

Even when I say, “Are you sure, God?  Did I take a wrong turn somewhere?  And look how I’ve messed up!!”  And He answers once again, “But I will be with you…..”

Dark clouds, or bright sky.  Angry Aaron, or happy Aaron.  God is with me.

On some days, that’s all I know.  But on every day, that’s all I need to know. 

 

Who Did He Ask to Dinner?!

Patty hesaidwhatks's avatarHe Said What?!


I was a senior at Piedmont Bible College in January of 1979 when this tall, handsome student came walking across the parking lot on a Wednesday evening.  We had a tradition at PBC on Wednesday evenings.  The guys would wear suits and it was a night for asking a girl to dinner.  Girls would sit in the windows watching to see who would walk over to Lee Hall, and if the guy didn’t usually accompany a girl to dinner then the tongues would fly as the girls tried to guess each new young man’s date.
 
On that night the new male student who walked into the sight of all those wondering girls was Gary Moore.  And walking back across the parking lot with Gary was me!  I would say lucky me, but I don’t believe in luck so in keeping with this being Bible college I’ll say that I…

View original post 1,398 more words

The Signature

It was last December 13, a Sunday afternoon, when I heard my text notification buzz.  Reaching for my phone, I saw that the message was from our friend Dona in Texas.  My first thought was that maybe she and her husband Steve were coming up our way and wanted to stop in for a visit.  But I gasped when I read her text.  Then I read it again to be sure that I had understood it correctly while hurrying downstairs to tell Gary the news. 

“Please pray,” Dona texted.  “Steve has had a major stroke and is being airlifted to a hospital in Dallas.” 

How could this possibly be happening?  Steve is our age, healthy and very active.  He had recently completed his Master’s; taught in the aviation department at LeTourneau University; and was a Colonel in the Texas Civil Air Patrol. 

All that day, Gary and I prayed as we waited for more news.  And my mind went back over the years of our friendship.  Dona and I went to college together at Piedmont Bible College, where Gary later joined our ranks as a student and Steve came as an aviation instructor at the Missionary Aviation Institute there.  Steve and Dona fell in love at the same time that Gary and I were doing the same.  And on May 26, 1979, Gary and I were married……and so were Steve and Dona.  We even married at exactly the same time in the evening, though in different towns.

Our friendship grew during the time that Gary completed college, Steve continued to instruct missionary pilots, and Dona and I worked.  Life was simple and sweet.  One day Steve told Gary that he wanted to teach missionary pilots how to fly helicopters, but one thing needed to happen first……..Steve needed to learn how to fly them.  Steve decided to try to join the army, learn to fly the choppers, and then go back to training missionary pilots when his time was up.  Gary had been in the army during Vietnam, so Steve asked Gary to go with him to the recruiter’s office in order to keep an ear out for anything that wasn’t quite kosher. 

Gary and Steve went to several appointments together.  Some people would say as luck would have it, but the four of us knew that it was as the Lord would have it that Steve did not go into the military, but Gary did.  Steve and Dona ended up living in Tennessee, where Steve was an air traffic controller.  Gary and I lived in six different places during his time as a military pilot. 

Steve and Dona remained dear friends over those years.  We visited each other when we could, with Steve and Dona coming to see us at several places where we lived, including here in Wichita.  They moved to Texas several years ago, and Steve remained active in aviation both as an ATC instructor at LeTourneau University, and as a commander and pilot in the Civil Air Patrol. 

Then came December 13.  It was a cold, rainy Sunday in Texas.  Dona had stayed home from church with a cold.  And Steve was found after church, lying beside his vehicle in the rain, mostly unresponsive.  A major stroke.  Airlifted to Dallas, where he spent weeks in the hospital and in a rehab hospital.  Home now, facing continued extensive rehab.  God has been so gracious to Steve.  Much of his function has returned, though he is still profoundly affected by the stroke. 

His life has dramatically changed, as has Dona’s, in ways that most of us never consider until we are faced with the reality of something like this……something completely life changing.  Dona writes about their life and about their Lord, and sends it out as emails.  She’s written these devotional and inspirational pieces for years.  What a treasure they are!  And especially now, as she has allowed us to walk with her as she walks with Steve on this path full of twists and turns.  She and Steve have always been examples to us of steadfast faith, but never more so than now, when their faith has been tested as never before.

In November of last year, Steve and Dona sent Aaron a birthday card.  There at the bottom was their signature.  Steve signed his name.  Dona signed her name.  That’s how they always did it.

WP_20160525_14_52_17_Pro_LI

Then in April another card came from Steve and Dona.  My dear friend, Atha, had died and I was still reeling from her unexpected death.  Dona knew how my heart was hurting, so she pushed aside her own pain and she sat down to write some very encouraging words to me and Gary.  And then as she ended her note, there it was.  The signatures.  Steve…..and Dona.  But look at Steve’s, written with his left hand when he is right handed……and written after having to learn how to write again. 

IMAG01719

I burst into tears when I saw it.  Dona’s words were uplifting and so sweet, but Steve’s signature is what really got me, because it showed volumes to me of where Steve was now.  What a difference from November to April!  What life changes he is having to adjust to! 

And so is Dona, who is with him every step of the way.  How her life has changed!  Steve walked out the door that Sunday morning, and their world as they knew it collapsed.  But I know they don’t really think of it that way.  They see God’s hand in it all……they trust Him completely……and they are putting into practice the rock solid faith that they have cultivated in our loving God all these years.  But it’s still hard.  It’s not without frustrations and fears and tears.

Back on May 26, 1979, Steve and Dona promised to be faithful to each other, too….for better or worse, richer or poorer, and in sickness or health.  So did Gary and I.  Steve and Dona’s promise has been put to the test, and they are passing…..with God’s grace…..with flying colors. 

Gary and I are very, very thankful that we have another year to celebrate our joint wedding anniversaries.  We are very, very thankful for the enduring friendship that we have shared with these dear friends.  We are very, very thankful for their example to us of steadfast love in the life changing hard times. 

And I’m very, very thankful for Steve’s signature that is so telling on many levels.  It tells of sadness, of strength, of progress, and of grace. 

Which means that Steve and Dona’s life really has God’s signature all over it. 

Happy Number 37, Steve and Dona!  Here’s to many more!

 

The Coupon Box

One of Aaron’s Sunday routines is to clip the coupons that are almost always in the Sunday morning newspaper.  I’ve blogged before about his coupon cutting process.  Believe me, it’s just that……a process.  A precise process that he is 100% convinced only he can do.  I, especially, have no business cutting out coupons because I am a dismal failure at that task.  Those are Aaron’s thoughts, not mine.  Aaron cuts as closely on the dotted line as he possibly can.  He then takes any little strips of paper that are left over and he clips them over a certain trash can, snipping each strip into tiny pieces and watching them fall down to join the other tiny pieces that fill the tiny snipped pieces trash can.  It’s an art.  Other odd sized pieces of left over coupon paper fill another trash can.  The finished coupon sheets of paper, full of gaps where once were coupons, are placed neatly in a stack to Aaron’s left side.  And the finished coupons are placed in precise order in the coupon box with the red lid.  It truly is fascinating to watch him cut coupons. 

Sometimes I don’t get the coupon box with the red lid emptied and sorted before the next round of coupons appear the following Sunday.  Such was the case a few weeks ago.  Aaron had completed his coupon cutting set-up in the family room.  His three cups of coffee were waiting for him on the bench beside where he sits on the floor, along with his pillow that he sits on, his scissors, his two trash cans, and the television turned to The Animal Planet.  He came to retrieve the coupon box with the red lid, opened it, and found last week’s coupons still inside.  So without further ado, he promptly dumped the week old coupons onto the table and turned to walk into the family room and complete his coupon cutting mission.

WP_20160508_07_41_40_Pro

“Wait,” I said.  “Can’t you still keep the old coupons in the box?”

“No,” he simply answered. 

“Because you can’t mix them up, right?” I asked, knowing full well the answer.

“Yeah,” he again simply answered as he sat on his pillow and started his mission.

Yeah is right.  Aaron can’t stand to mix the old coupons with the new coupons.  He does it on occasion, but not often.  So he clipped that day’s coupons and later I found the coupon box with the red lid on the kitchen table…..every coupon placed in just the right place and in the right order.  Aaron’s way, which to him is the only right way.

WP_20160509_12_10_08_Pro

Aaron’s life, and living with Aaron, is so much like his coupon clipping process.  He wants everything in its place…….the details of his life in a certain order.  This goes here…..that goes there…..and if I’m done with it or it’s old or messed up, out of place or frustrating, I just dump it and we start over.  Neat and tidy, with Aaron in control of the set-up and the tools and the timing and the process.  Except life’s not like that, not for Aaron and not for any of us.  You and I can adapt to these changes for the most part pretty easily, but not so Aaron.  Even the simplest change, the most minute little snag in an otherwise orderly process, can easily put Aaron over the edge.

Gary and I just returned from a short trip to Topeka, where we watched Andrew work on his NHRA race team.  Aaron knew that his two caregivers were coming to take care of him.  He was excited for us to leave, as he always is, because our leaving means more eating out and more movies and hopefully less bossiness from those in charge and more of him pulling the wool over unsuspecting eyes…..so he hopes. 

“I can’t wait for you to leave!” he said on Thursday as I was getting ready to go.  “NO parents!!” he added as he rubbed his hands together and laughed loudly.  He is at least very honest.

“What time are you leaving?” he asked, though he had been told how many times before? 

“We’re leaving at 3:00,” I answered.

“Can’t you leave early?” he asked.  “Like 2:59?”

He was completely serious about that.  So I smiled when I hugged him goodbye later, and told him that it was 2:52.  He just nodded his head and went on his way, and I stifled my laughter until Gary and I drove down the road.

Aaron calls repeatedly while Gary and I are away from home.  Every day, several times a day, he calls.  So much for his “NO parents!” comment!   Therefore, it was no surprise on Monday morning when he called, and also no surprise to me that he was most unhappy.  After his busy weekend, and after NO parents, he was ready to settle into his normal……but not ready to go to his day group.  He wanted to stay at home, which is common for him, and he wanted to be there when we arrived.  I always question what to do in that case.  Let him just stay home…..but is that giving in?  Make him go…..and maybe pay the consequences of that decision.  Mainly, his caregiver and day group have to pay the price of Aaron’s grouchiness.

As Aaron and I talked on the phone and he finally agreed, unhappily, to go to Paradigm, he asked me if I would pick him up early at the end of the day.  I said that I would. 

“Mom!” he said.  “I mean to pick me up before 4:00.  I want you to pick me up at 3:59!”

Again, he was entirely serious.  “3:59?” I asked him.

“Yes!” he answered.  “Don’t wait until 4:00!  Will you pick me up at 3:59?” 

So I agreed to pick him up at 3:59 and he went reluctantly to Paradigm.  However, he had a miserable day.  The other clients had a miserable day.  The staff had a miserable day.  Thankfully they are so understanding and forgiving.

It was around 1:30 when my phone rang.  I heard Aaron on the other end, voice thick with tears.  I’ve lived this scene so many times that I didn’t even need to hear what Aaron had to say. 

“Mom,” he started……and I just told him that I was coming to get him. 

“No!” he said strongly.  “I want you to come at 3:59!!”

“But Aaron,” I countered.  “You’re very upset now so let me come and pick you up.”

“No!!” he forcefully repeated.  “I want you to come at 3:59!!”

He handed the phone to Barb, and she said that he was very firm about me coming at 3:59, but then for some reason he changed his mind and said that I could come on to get him. 

A short time later, he and I sat in Freddy’s.  I figured a Freddy’s burger and fries would be the best medicine for him.  He was relaxed and very happy as he ate his burger, but his eyes were still red and bleary from all the tears.  As I asked him why he was so upset that day, he couldn’t tell me why.  I kind of know why, but he really has a very hard time verbalizing outwardly what goes on inwardly in his mind and emotions.

WP_20160523_14_37_00_Pro

So many diseases or syndromes show up in a person’s bloodwork when it’s tested, but what Aaron is missing doesn’t show up firmly in lab work or on a piece of paper.  The connections in our brains that allow us to process and filter our environment, and our responses to life’s occurrences in our environment, are missing in Aaron’s brain.  He cannot just simply deal with issues like I can.  So he reacts, often in great frustration, and getting to the root of that frustration and his reaction to it is what we continually try to do. 

However, we are often very frustrated ourselves……frustrated by Aaron’s behaviors and his reactions and all that goes along with it……that it’s hard to pause, take a breath, and try to figure it out ourselves before we can even begin to help Aaron figure it out.  Add to that our embarrassment at times……our tiredness…….our feelings of failure or ineptness…..and it’s like my box of coupons.

I just want to dump the whole thing and start over!!

Start over with an empty box……new coupons…..all in precise order!

But life’s not like my coupon box with the red lid.  I can’t just dump days or events out on the table, and arrange the new day the way I want.  And neither can Aaron.

But we can start each day with a clean slate, and try again.  We can build on the old experiences and the lessons they taught us.  Clipping here……cutting there…..arranging our thoughts and our responses in the right way.  We do it through prayer, through seeking God’s wisdom, and through loving each other through not only the good, but also the bad and the ugly.  And we have plenty of those last two, believe me. 

And through always keeping in mind that Aaron’s most impacting special need is the one we can’t see in that amazing brain of his.  We don’t understand how he thinks at times, or how he acts, but we do understand that he really wants to do better and that the frustrations for him are far greater than any that we as his parents and caregivers will ever feel.    

There’s one more thing about starting each day anew.  God has promised that His mercies are new every morning.  They’re not based on yesterday and on yesterday’s failures.  His mercies are new and fresh every morning, as is His longsuffering and forgiveness and kindness.

Can I be any less for Aaron? 

I don’t think so.  And I can put that promise on the very top of my daily coupon box.

The Cold Sore

You know from the blog title that what I’m going to write about today has something to do with the pleasant subject of a cold sore.  Let me tell you, I am cold sore weary.  Looking at it…..talking about it……putting medicine on it……discussing every little detail of it……

It’s just tiring.  Oh, and I don’t have the cold sore.  Aaron does.

You probably guessed that.

I do feel sorry for him, truly.  Cold sores are painful.  He’s never had one before, so this new experience has been very impacting to him.  You would think with all the medical challenges that he faces, a cold sore would be minor.  But not Aaron. 

He will talk a sore to death.  He had a little cut on his knuckle not long ago, and I heard more about that little cut than I ever, ever want to hear again.  I have to say, though, that some of his statements are really funny…..or really insightful……or downright confusing.

“Mom?” he asked one morning as he held his cut finger up in front of my face.  “Is the blood holding in the sore of the skin?”

Ponder that one. 

“I’m not sure, Aaron” – has become a routine answer for me.  Or, “Google it, Aaron.”  That’s another good one.  Both are said in a rather monotone voice after about day three or four of Aaron dissecting everything there is to possibly dissect about his sore or bruise or bump…..or cold sore now. 

I wish I had written down all of Aaron’s comments about his cold sore, or how many times a day he has talked about it.  This unusual malady has him stumped for answers and explanations, so he talks it to death.  My monotone voice is in full force, trust me.  Aaron doesn’t notice that, of course.

So here are some of his statements about his cold sore.

“Mom, it hurts when I eat because I open my mouth high.”

“It stretches!”  (Talking about how it cracks)

“I feel it pumping.”  (That feeling of your heartbeat in a sore place)

“It gets dark…..the color of the sore.”  (How it looked as it scabbed over)

“Mom!  The medicine fell off!”

And after I told him that it gets worse before it gets better, he paused a minute before saying, “The reason it’s getting worse is because it’s getting better.”

Sure, Aaron.  Yeah.  We’ll go with that.

On Friday he went with Amy, one of the staff, to pick up some things for Paradigm at a drug store.  Aaron put two and two together really quickly.  Just that morning on our way to Paradigm, he and I had stopped at our Dillon’s and bought some new cold sore medicine.  But with Amy at a new drug store, he of course engaged the pharmacist in a conversation about his awful cold sore.  Aaron had news for me about what to do to treat his cold sore, according to this concerned pharmacist, but of course it’s what we were already doing.  Aaron didn’t bother to tell him that because he loved all this new attention. 

So today Aaron went with me down to Dillon’s again.  We went up and down the aisles while I checked this and bought that, and Aaron tried to talk me into more than his salad…..and croissants……and flavored water.  I ended up at the pharmacy, where I was checking on some calcium on the shelf, and where Aaron spied Marc and Greg in the pharmacy.  We have known Marc and his family for years, and Greg has gotten to know us more recently.  Aaron wasn’t concerned at all about whether we know Marc and Greg.  He only saw a fresh opportunity.

“Hey!” I heard Aaron say as I was bending over a bottle of calcium.

And I knew.  I knew immediately, from years of experience, what Aaron was doing.  He had grabbed a prime opportunity by the tail.

“Hey!” he repeated as he moved to the counter. 

I tried to run interference but Marc is very kind, and he knows Aaron, and Greg is also very kind…..so Marc moved over to where he could talk to Aaron.  I laughed mentally because just a few days earlier I had seen Marc and his wife in Penny’s, where I told them about the cold sore and how Aaron is so obsessed about it, and where Marc gave me some medicine advice.

“I have this cold sore,” Aaron began, and off he went.  Funny how totally Aaron could ignore me and stay on track with his story as I stood there commenting on all of his comments.   

“Aaron, your cold sore is getting better.”

“Aaron, we’re doing what they’re saying to do.”

“Aaron, you know all about how to take care of it.”

“Aaron, Marc and Greg need to get back to work.”

And so it went, until this:

“Hey!” Aaron added.  “Have you watched XFiles?”

“Aaron!” I said.  “Don’t get started…..”

“Have you watched NINE seasons of XFiles?!” he continued. 

“Aaron, we need to go!” I repeated.  “They need to get back to work.”

“Have you seen the smoking man?” Greg asked.

“Well, now you’ve done it,” I told Greg as I laughed.  Talk about throwing gas on a flame!

We finally escaped as customers began to collect, and probably wondered why we were standing there talking about XFiles to two pharmacists.  Cold sores, maybe……but XFiles?

Aaron ate his salad and his croissants, and I put more medicine on his cold sore……but I think it’s already fallen off.  Hopefully soon the cold sore will be a distant memory.  At least with a cold sore, Aaron doesn’t have to lift his shirt up to show it to unsuspecting random people.  Now that’s a memory!!

Maybe a cold sore is a blessing in disguise after all, at least for me and for others who have been bombarded with the bare stomach shock as Aaron showed off an under-his-shirt sore.  

Life is never dull with Aaron.  I could only wish on some days……

 

 

Do You Know Shiphrah and Puah?

We don’t know what our obedience to God might cost us, but we must obey God above all else. Shiphrah and Puah are wonderful examples to us in this culture today.

Patty hesaidwhatks's avatarHe Said What?!

If you had asked me this past Saturday who Shiphrah and Puah are, I would have responded, “Uh………you know, as familiar as those names sound, I’m just not remembering Shiphrah and Puah right now.”  Perhaps some of you know of these two women, but I would have drawn a blank.  Not now, though.  Yesterday’s message at church from Exodus 1 reintroduced me to these two women, and I’m very thankful for that privilege.

For a little background, the people of Israel had traveled to Egypt under the rule of Joseph.  Jacob’s family grew and grew, filling the land of Egypt and becoming mighty.  All the original Israelites had died, including Jacob and Joseph, as well as the Pharaoh who knew and loved Joseph.  A new king arose over Egypt who did not know Joseph.  This king became fearful of the numbers of Israelites who lived in the land, thinking that…

View original post 684 more words

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom to all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

 

 

 

Keeps Me Singing

Patty hesaidwhatks's avatarHe Said What?!

It was probably over 55 years ago that a soloist with a beautiful voice went to sing in a revival service in the little town of Oakvale, West Virginia.  She sang the hymn “I’d Rather Have Jesus,” and then she sat down to listen to the sermon preached by Jimmie Jones.  Her heart was disturbed as she listened to the gospel being preached that night.  She thought of the song she had just sung, and of the words that came out of her mouth in such a perfect performance…..words that she knew she didn’t really mean.  For it was just that – a performance.  She sang beautifully, but she sang a lie.  She knew that she didn’t really know Jesus, and that she didn’t really mean it when she sang about wanting Jesus more than anything this world affords. 
 

This woman was…

View original post 649 more words

A Nightmare and a Flower

3:30 a.m.  I heard Aaron stirring, then walking up the hall to the bathroom.  He closed the bathroom door with a thump because he never, ever closes doors quietly.  Soon the bathroom door opened, but instead of walking back up the hall to his room I heard our bedroom door open.

“Mom?” Aaron said in as much of a whisper as he can ever muster.  Whispering seems to be a lost art with him. 

“Mom?” he repeated.  I answered him and he continued.

“Can you come to my room?  I need to talk to you about something.”

So I followed Aaron to his bedroom, where he wanted to turn on the light so that he could talk better. 

“Mom.  I had a nightmare.  I dreamed that you and dad made me go live in a support home because I was mean.” 

So that would explain what I had heard him speaking in his sleep earlier……something about wondering if someone would come up to his room to see him.  We talked about his nightmare, as he called it.  He has such a fear of ever having to leave our home.  No matter how we approach that subject it never goes over well.  But we hadn’t talked about it at all the night before, or even at all recently, so I don’t know where the dream came from.  But it greatly bothered Aaron, enough for him to call it a nightmare. 

We talked for a few minutes and I assured him that everything was fine, and not to worry about us making him move because he was mean.  But it is important not to be mean, I had to add.  And with that I made sure he was all the way in his bed, said goodnight, and turned off his light.

He was up before 8:00.  He walked into the kitchen looking a little worse for wear.

“Mom,” he immediately said.  “I don’t feel good.  My head hurts.  I feel weak.”

I tried to encourage him, but finally he brought up the real issue of the nightmare.  He decided that this awful experience should earn him a day off from Paradigm, but he saw right away that I disagreed.  I exuded cheerful optimism, which he tired hard to override with his dreary post-nightmare pessimism.  We were in that familiar tug-of-war. 

A shower and three cups of coffee helped a little, but Aaron had decided that he was not going to Paradigm.  I always leave the final choice up to him, but he knows the consequences of not going.  I told him that we would run down to get him a haircut, which he loves, but after the haircut he was still pretty firm about staying home.

I agreed to take him home and then told him that I was running my errands.  After that, I said, I would be busy all day getting ready to leave tomorrow on an out-of-town trip for Gary and me.  By the time we pulled into our driveway, he was happier and I was on the phone.  He opened his door and in a flash, my door opened and there stood Aaron……holding something for me.

“Here, Mom!” he tried to whisper.  “I picked you this flower.  I picked it because I love you and I’m going to Paradigm.”

Then he handed me the flower, bent over to lean in the van, and gave me a HUG!!

You could have blown me away!!  Kind of like the little seed pods on the flower he gave me.  You see, his “flower” was this:

 WP_20160427_13_05_54_Pro

But he was as proud of this old dandelion as he would have been if he was holding a dozen roses.  And trust me, I was too!  This bent over, half bald seeded dandelion was what Aaron saw first and so pluck it he did……for Mom!

After I got off the quick phone call, I thanked and thanked Aaron for the flower.  He just beamed.  He got his glasses and his watch and his wallet, and off we went to Paradigm.  I think his morning there was a little tricky, but the rest of the day seemed to go well. 

It’s a good thing I don’t have allergies, because I’ve kept my special flower in the kitchen all day.  It’s nothing spectacular, but it’s the best Aaron had.  It would have been understandable for me to not want this sad sample of a flower.  To maybe throw it away when Aaron wasn’t at home. 

But I keep thinking about how the best Aaron had to give me was…..well…..not what we would call great, but it was from his heart and that makes it totally awesome.  That’s so often what Aaron does and is, all through the days of his life.  We may not get exemplary behavior every day…..we may not see stellar progress on most days…..we may not even take the time to notice how hard he tries on other days.

But for Aaron, it’s there.  His attempts to fit in, to express himself, to understand this world we live in with him, are there.  Some days the best we get is for him to ask if I’m happy that he didn’t make “farting noises” with his mouth in the store, but he made “meow” noises instead.   Or that he didn’t clap SUPER loud or clap too AWFULLY many times.  Or that he didn’t get 10 toothpicks at the welcome counter at the restaurant…..only 4! 

He so wants us to be proud of him.  He so wants to conquer his inability to communicate what’s really on his mind…..what’s really bothering him……what’s in that heart of his.  But it’s just so nearly impossible sometimes for him to do that……to talk like you and I do.  He might react, like he did this morning.  He might hit or slam a door or be defiant.  But I’m convinced that part of the frustration that Aaron feels is not that he’s mad at the situation….he’s mad at how very hard it is for him to identify and express to us just what he’s mad about. 

So whatever he is able to share, we must take it gladly and try to understand.  We must grasp what he hands us and take care to handle it well.  Just like my dandelion flower.  Would I have chosen it?  No.  But Aaron did, and with it he showed me his love.  To me that gangly old dandelion is beautiful.  It represents Aaron’s heart. 

I hope that when he sees it sitting on the table, or maybe later in a vase, he’ll know that Mom not only loved his gift……he’ll know that Mom loves HIM. 

 WP_20160427_17_20_21_Pro

The Rewind

I was driving on Kellogg this morning, Aaron beside me and a favorite CD playing.  A new song had just started.  As we drove slowly in the construction area, Aaron saw that a policeman had pulled a car over.  The policeman’s lights were flashing, so it grabbed Aaron’s attention.

“Mom, look!” Aaron said.  “That policeman caught someone speeding.”

“Yes, he did,” I replied.

Aaron then leaned over and pushed the button on the CD player that made the just-begun song start over.  This is nothing new.  Aaron does it all the time.

“I didn’t hear the song,” Aaron informed me.  “No more talking.”

“Well, I wasn’t the one doing all the talking.  You were,” I muttered under my breath.  Aaron didn’t hear me, which was a good thing or he would have punched the button to start the song over for the second time.  I felt better, though, verbalizing my feelings out loud even just a little bit.

In the Aaron imposed quietness on our way to his day group, I thought about this rewinding business.  Aaron does it all the time.  If we’re talking……and it’s usually if Aaron is talking……he will finish what he is saying and then rewind the current song.  If it’s a song I like, then I enjoy the rewind.  If it’s a song I don’t like, then the rewind can get irritating, but I endure it anyway to make Aaron happy.  Such is life.

There are some recent moments with Aaron that I would like to rewind.  Some of the moments I would rewind because I would take a different path, perhaps, in handling an attitude with Aaron.  Like last night during our game of Skip-Bo……

Paradigm sent a new form for me or Aaron, one or both, to sign.  This is a one-page form concerning the responsibilities of the person served, which would be Aaron.  I can just read the form and sign it as Aaron’s guardian.  But I felt that Aaron should know what it said.  He could read it himself, but I also felt that my reading it to him would have more impact and that I could also explain anything that he wasn’t sure about.

I was wrong.

I explained the paper to him as we started our Skip-Bo game, and read number 1.  I read number 2, and just then Aaron said, “NO!”

WP_20160425_13_18_55_Pro 1

I was surprised, Aaron was agitated, and no amount of urging would make him agree for me to continue reading the rest of the form.  I believe that Aaron sees these responsibilities as things that are often next to impossible for him to perform.  He becomes almost scared, which presents itself as anger.  Aaron was not very happy for the rest of the game.  He carried this angst over to this morning, not wanting to go to Paradigm.  And also not wanting to take in the offending unsigned form.

“I’m NOT signing that paper!” he angrily told me.  I hadn’t even mentioned it.  But Aaron did go to Paradigm.  He wanted me to go talk to Barb, so we walked in together and Aaron immediately told Barb that he was NOT signing that paper!!

Anyway, I will get the paper to Barb, signed only by me.  And I wished I could rewind my decision to read the responsibilities to Aaron during our usually fun game of Skip-Bo. 

Then this morning on our way to Paradigm I told Aaron that we could stop in Dillon’s to get him a salad.  He was happy with that thought.  We stood at the salad bar and right away Aaron stuck his hand under the hood, barely touching some lettuce with his fingers.  I fussed at him and quickly scooped that lettuce into his container.  I was doing a good job of managing his portions but then I saw a friend.  I was asking her some questions about her son who has some medical needs, holding Aaron’s salad in one hand……but he managed to squirt half a bottle of dressing on it and then add two huge scoops of onions.  I bet he’ll feel good tonight.

Aaron didn’t want me talking to my friend, though, and so in front of her he said, “Mom!!  Don’t talk to a woman!!”

There again I wish I had that rewind button and could start that whole scene over again, hopefully with a less than embarrassing outcome.

His comment to me was kind of funny, kind of not, but is so typical of moments with Aaron.  It doesn’t bother him one bit to say or do the most awkward things in public.  So whether it’s at home or whether it’s out there for others to see, there certainly are many moments that I would like to rewind and start over. 

Yet there are also many moments that we hold dear…..moments that we wouldn’t change for the world. 

Look at him and Rosa a couple weeks ago after eating out for her birthday. 

 

IMAG01758 1

Aaron was ready to go home, you can tell.  He came, he talked (a LOT!), he ate, he got his toothpicks, he saw Rosa, and he was done.  But it was sweet, as always, to see Rosa’s delight when she came in the door at Chili’s and when she gave me a hug.  A hug!  That was awesome!

Aaron hit one of his friends at his day group recently.  On his own, he wanted to write her an apology on a card.  He picked the card out of my card box and wrote his own note.  It took him a couple days to get up the nerve to give it to Stephanie, but he did…..or so he told me.  That’s another moment I would not rewind.

 IMAG01759

We can learn from all the moments we have with Aaron.  Some are just more fun than others.  Yes, Aaron will always, always, always put way too much chocolate syrup in his ice cream.

IMAG01712

But he will also turn around and always, always, always make me smile as he tells me a story and rubs his hands together in delight, his own smile on his face.

IMAG01708

Aaron is who God made him to be.  Yes, living this life can be wearing and tiring, as my friend Joyce messaged me last night.  She called me a “fellow mother on this very strange road.”  I love her honesty, because some days our road is indeed very strange.  Yet listen to what else Joyce said:

“It’s down to taking one day at a time and realizing that this is God’s story that I am in, not my story that happens to have God on the sidelines.” 

God’s story.  His story doesn’t have rewinds.  He is right here in the midst of designing our story, writing each word.  He’s not on the sidelines just watching us cope.  Nope.  He’s writing every chapter, every word of every song……for all of us.

So when I want to push the rewind button, I know that instead I need to listen closely to what God is saying and to what Aaron is teaching me. 

Be quiet, Mom, so we can listen to the song!