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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.
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.
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!
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.
“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.
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.
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.
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……
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.
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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.
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