Author Archives: diane.connis@gmail.com

The Memory Keeper

Jon’s fine motor skills developed slowly as a child. At 18 months old, one of the recommended therapies of the early intervention program he attended was picking up Cheerios from his high chair tray to help him strengthen his pincher grasp. He struggled getting his little thumb and forefinger to work together.

Cheerios accompanied us everywhere. He practiced eating them off the church pew during services, in the car from a cup, in high chairs at restaurants. I became obsessed with helping him learn to pick up those little O’s and get them in his mouth and admit there were days I was sad or frustrated, sometimes both, that it was taking him so long to do what other babies did naturally.

When David was 18 months old, he toddled to the cabinet in the kitchen where the cereal boxes were kept, opened the new Sam’s Club size box of Cheerios and dumped its entire contents over his head. I found him sitting in the pile on the floor stuffing Cheerios in his mouth so fast you’d think he’d not been fed for three days. I remember being a bit annoyed as I cleaned the mess up and washed Cheerio dust out of his hair.

As much as my boys were different, in other ways they were the same.

Jon made a trip to the pediatrician somewhere between the age of 4 or 5 because he had a pea stuck up his nose. Obviously picking up all those Cheerios taught him the fine motor skills he needed to get a pea from his plate to the inside of his tiny nostril.

David, at the age of four or five, arrived at the pediatrician’s office with a piece of styrofoam stuck in his ear.

I remember being exasperated with each of them both times.

As I think back on this Mothers’ Day, I realize, some of the most frustrating moments of raising children are now some of my fondest memories. Time has a way of softening the drama and exhaustion of motherhood.

Time also has an uncanny way of changing everything.

What was then an inconvenience and annoyance to my younger and impatient self is now a treasure stored in the safe box of my heart.

Having and raising kids is an adventure like no other and we all have the same gift of time to experience our children’s remarkable growth process.

Jon can raid the panty and fridge on his own now and has no problem putting large amounts of food in his mouth on any given day. David doesn’t stick styrofoam in his ears anymore but knows how to install it inside the walls of a house to keep the heat and cold out.

Moms, if you still have young ones, I’d like to tell you, in the everyday exhaustion and insanity of mothering, don’t freak out over the little things; but then I would be robbing you of some of the best memories to hold on to when your kids are grown.

Just know this: if that thing they’re doing frustrates you today, thirty years from now you’ll probably think of it and smile.

Time is precious.

Time is fleeting.

Time is a memory keeper.

Happy Mother’s Day!

The Best ‘Accident’ We Ever Had

Twenty five years ago today our second son, David, arrived.

Our firstborn, Jonathan, came to us with developmental disabilities and before the end of his first year, I was diagnosed with a chronic illness and told it would worsen with any subsequent pregnancies.

In light of all the odds stacked against us, we decided one child should be enough. I lived with daily pain and exhaustion and it was difficult taking care of our son; one who needed so much extra care and attention. Adding more children seemed overwhelming and reckless.

That decision, though sensible, saddened me. But the alternative seemed too much of a risk and quite honestly whenever I thought about it; fear overpowered sadness. So I settled into an unplanned life of doctors, therapists, prescription drugs and special education.

It was an enormous shock when we discovered, ten years later, we had another child on the way. Jon was in school, developing slowly but doing fairly well, and I was still dealing with multiple health issues. I was older now, and because I’d already had a special needs child when I was young and healthy, my first response to the news was overwhelming fear and tears.

As time moved forward excitement and expectation emerged and then love for the child growing inside me. He may have been unplanned but he was never unwanted. And though the fear never left, I knew I would face, by God’s grace and strength, whatever the future offered us and this baby.

The night he was born, I fought my fear battle with each contraction, but when the mid-wife checked him over, looked me in the eyes and said, “It’s a boy and he’s perfect,” such relief and joy flooded through me I could barely contain it.

God knew what I needed, even when I didn’t. David’s arrival did something for me that I’ve never quite been able to express. He was the piece of my heart puzzle I wasn’t even aware had been missing, until I held him. His arrival in our lives filled a gaping hole; an empty place inside my mother heart that I didn’t know I had until he was here.

As predicted, my health problems became much worse after David’s birth but I didn’t care and I still don’t. I am thankful everyday for the gift of this son. His life has been worth every bit of pain and damage that has ravaged this fragile suit of flesh I reside in.

Today, on David’s twenty-fifth birthday, he is distant from us in miles, but never in heart. He is fiercely loved and celebrated. And not just by us, but also by his wife, her family and many friends; so many others he has already impacted and touched for what is good and right in the world.

David Micah Connis, is the best and happiest ‘accident’ we’ve ever had and we are unspeakably grateful to God who blessed us with such a wonderful surprise.

Happy Birthday Son!

Slowly Going Nowhere

Jon wanted to go out today. I asked him by question written on my cell phone note pad, if he’d like to go to the movies.

He typed back, “I do yes sir.”

That was affirmative enough so we drove to the theater, arriving at 3:50. The movie started at 4:40. At 5:00 we were still sitting in the car.

I don’t understand Jon’s thing about sitting in the car. Anytime we go anywhere he stays in the car. While people all around us drive in, hop out and are often back and leaving, he hasn’t even opened a door yet.

How do you make a flight or doctor’s appointment on time when the guy won’t get out of the car? When he was little I could unbuckle him, grab him and carry him, but he’s thirty four now. He should be carrying me. After all those years of dealing with his goofiness, I’m tired.

I knew it would take another half hour to get him in the building if he did get out of the car. By the time we bought tickets, popcorn and drinks the movie would be half over. Who wants to fork over a quarter of a week’s paycheck to see half a movie?

And anyway, I just didn’t have the patience for it all today, so I started the car, drove through McDonald’s to get him some dinner and came home.

He was another half hour sitting in the car once it was in the driveway. I put the seat back and took a nap.

We spent two and a half hours in the car today, going nowhere.

Some things in life you can never understand.

The Freedom Within My Walls

Jon was still awake and roaming the house when I went to bed late last night and the kitchen was a wreck this morning. He’d been in the pantry, cupboards and fridge, gathering food and dishes, setting them out on the island and table, opening jars, boxes and containers but not eating any of it.

He was also dressed, with shoes on, ready to go somewhere.

I quickly made breakfast and cleaned up the kitchen mess while he waited in the car. Then I sat with him in the car at the end of the driveway, close to an hour, waiting for him to give me a hint as to where he wanted to go. He finally handed me a Dunkin’ Donuts coupon. I drove there and waited another hour, for him to get out of the car. When he finally did, he went inside Subway instead.

There’s so much about the way Jon functions I don’t understand and these behaviors confine me to a life that looks much different than the norm. I sometimes feel I’m living inside closed walls, observing through a small window, the rest of the world rushing by.

But I have slowly come to realize something profound. There is a freedom within these walls.

Endless waiting brings freedom of time, quiet observation and contemplation.

While others rush from one place to another, I wait.

While others are frantic with long to do lists and schedules, I am excused.

While others speed past the obvious and the hidden, I notice.

I notice people rushing into restaurants, gulping down food and rushing out, taking no time for tasting, talking or relaxing.

I notice the simple joy and happiness of a small boy swinging himself in half circles on a bicycle rack and how his expression shifts to sadness as his hurried mother grabs his arm and jerks him away.

I notice the swagger of a young man as he walks through the parking lot, swirling keys around one finger, and am reminded of the strength and confidence of youth.

I notice the old woman leaning on her cane, shuffling with slow steps and wonder about the life she has lived and if anyone bothers to benefit from the wisdom treasure within her.

I notice the smiling young woman with no legs, entering the building in a wheelchair and don’t stare at her but at the people staring at her, watching their reactions and reading their thoughts, visible as a billboard, on their faces.

I notice the beautiful young woman with perfectly formed limbs intact, so lacking in confidence and longing for acceptance she dresses to draw attention to the intimate parts of herself and I pray for her.

I notice the many shades of green in nearby trees and a quirky variety I don’t recognize, comical in shape, like something from a Dr. Seuss book.

I notice a tiny bird chirping in the tree in front of my car. I watch him and think of Jesus’ words, that I am worth more to The Father than many sparrows.

I lean my seat back and notice the intense blue of the sky and think about Heaven and my young friend, Rachel and her dreams.

I listen to my daily Bible reading again and praise God for finding ways to speak encouragement to me.

And I observe my son, his unusual and mysterious ways dictating my every day, and wonder why we don’t measure with greater merit, those who march to a different drumbeat.

Yes, there is liberty in this confinement and a freedom in all this slowness and waiting; one others, too busy rushing, wanting, scheming, planning and doing, rarely experience.

Walls, it seems, keep me in but also keep the unnecessary out.

Maybe I am more blessed than I know.

Psalm 46:10 “Be still, and know that I am God..”

Hope for a New Year

Since I was a child, I’ve always felt the shift of the clock from 11:59 p.m. on December 31, to 12:00 a.m. on January 1, should be magical, fantastical, miraculous; as if something incredible should happen at the very second a year flips over.

Shouldn’t the problem I’ve struggled over all year suddenly have resolution, or money fall from the sky like confetti in New York’s Times Square, or people desperately seeking restored health be instantly healed?

Shouldn’t broken hearts be renewed and shattered relationships repaired, mobile phones ringing and buzzing with offers of love and forgiveness?

Shouldn’t Jon come out of his room with a huge hug and Happy New Year wishes, and loved ones who’ve passed on, walk smiling through my door, shouting, “Hey! I’m back!”?

You know…amazing stuff like…answers. Reversals. Miracles.

I wait for it every year. Deep inside I admit to expecting it. But another new year seems to come and go as ordinary as most days. We celebrate it for a few hours, the fireworks fade and we wake up the next morning to another sunrise. Another start. Another chance. Another twenty four hours.

What is it about a new year that makes us yearn for more?

I think it’s hope. Hope is defined as desire accompanied by anticipation, expectation and confident belief. Hope is central to our very existence.

1 Corinthians 13:13, combines “faith, hope and love,” with love being the greatest. But how is love even possible without faith and hope? When hope walks out, all other longing goes with it. Proverbs 13:12 says, “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”

The human heart has an incredible capacity to keep hope alive, even in the darkest times; to keep wishing for perfection, beauty, solutions, joy, and love. It shouldn’t surprise us, for we are made in God’s image, and He is all these and more.

There is a spark of hope in us that ignites new promise for a new year.

Maybe this year I’ll get that raise or promotion. Maybe this year I’ll meet that special someone. Maybe this year my situation will turn. Maybe this year my health will improve. Maybe this year my sorrow will turn to joy. Maybe this year will be my break through.

Last year was hard, but it’s over. This year will be better.

I hope.

We can’t know what a year will bring, but of this we can be certain: God will be in this New Year with us, just as He always has been. He has not forsaken us, even though we may not feel Him near. His mercy is new and available every morning and His love for us is endless. He can be trusted with our future.

As the year before us unfolds, my hope and prayer is, “May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit,” Romans 15:13.

The best of blessings to you and yours in the days ahead. May your year be abundant with hopes fulfilled.

image credit: http://www.freshpickedwhimsy.typepad.com/

Jon’s Grownup Christmas List

Jon doesn’t ask for anything for Christmas. He might circle a movie or toy in a Christmas sale flyer he finds hanging around the house occasionally, but if you ask him what he wants you won’t get an answer.

Here’s a list of some gifts Jon received for Christmas this year:

Two Tom and Jerry cartoon DVDs

Two large print, word-find books

A pink spiral notebook with a heart on the front (yeah, he likes pink)

A McDonald’s gift certificate

A Wendy’s gift certificate

A dollar store gift certificate

$20 worth of one dollar bills

A box of Goldfish Crackers

Two superhero puzzles

A bar of money soap (a hint to take a shower Jon, please)

A plastic toy grabbing tool thing

Play money in a cash drawer

A plastic police badge

An orange plastic police vest

Our Christmases with Jon aren’t typical and are probably best described as slow, quiet and even a bit boring. But, with the passing of each year, I appreciate more and more, the gift he is to us; all the ways he keep me grounded, continuously reminding me of what really matters.

Especially at Christmas.

Sometimes I’m struck by the simplicity of his life.

Sometimes I’m envious of it.

Sometimes I’m sad for the classic milestones he will never experience.

Most of the time I don’t think about it at all.

I just love him for who he is as he slowly opens, inspects, then carefully packs all his presents into a gift bag and carries them off to his room, adding them to the collection of items I’ll need to clear off the floor next time I vacuum.

You may not have a Jon, but I pray you have something, someone or a moment in this season to insert a slow down and reflection, on the most important treasures of life; a God who proved in the very event of Christmas, He accepts you with a love undeserved. And the people in your life, who stick around for the long haul, willingly to jump, head first if necessary, into every joy and sorrow.

Merry Christmas and a blessed New Year to all!

Oh No! Home Alone!

Jon’s all time favorite movie is “Willy Wonka and the Chocolate Factory”. Following close behind is “Home Alone”.

Our first adventure with “Home Alone” started in the mid-nineties when we rented a copy, sometime during Jon’s early teen years. After watching the movie, with its many theft prevention traps, Jon took it upon himself to become our personal security system. We lived in a three story house in New Hampshire at the time and Mike had finished the basement as a playroom for the kids. In the back corner of the basement was a door we rarely used and it opened to stairs leading back up to ground level and into the garage.

I went to the basement to throw in a load of laundry one day and realized I needed to go out to the garage for something. Rather than go back upstairs and out the door off the kitchen, I opened the basement door and experienced a brief moment of horror as I watched the kid’s blue plastic snow sled, loaded with paint cans, come hurdling toward me. I screamed and slammed the door shut just in time to hear the thump, crash, bang of full and half-full gallon cans pile up against it on the other side.

Jon had placed the sled at the top of the stairs, lined it with the paint cans he’d found stored on shelves in the garage and tied the sled’s rope to the basement door knob. Although a great idea if an intruder was already in the basement, it wasn’t about to keep one out. But It was genius and imaginative really, with no thought of consequence to the people he lives with, which has always been one of Jon’s great deficits.

We went though a phase of trepidation and alertness, following this “Home Alone” viewing. We would find small toys lining the stairways, door knobs drenched in cooking oil, dish soap or shampoo, marbles and jacks on the floor in front of or behind closed doors, a half dozen eggs lined up on the garage door bracing; when the door went up eggs dropped to the floor or on the car. It was unnerving

We let Jon watch the movie again when he was in his late twenties thinking he may have matured enough to distinguish its fantasy from reality. The booby traps reappeared immediately.

The other night Jon’s caregiver told me Jon was reciting “Home Alone” movie lines to her. When I came out to the kitchen the following morning, all the Christmas balls had been removed from the mini-tree adorning the corner of the breakfast nook and were lined up under the window. There’s shampoo or something slippery coating his bathroom doorknob again, a curtain rod blocking the entrance to his room like a swinging railroad crossing gate on one end and dresser drawers blocking the door to his room on the other end.

Jon is not allowed to watch “Home Alone”. We don’t keep it in the house, but I’m thinking he’s found segments of it on YouTube and this is not good news. While the movie may be a classic family Christmas comedy, it’s off limits in our universe.

If you like us even a little bit, please don’t give him a copy for Christmas. And if you stop by, be vigilant. You could very well be Jon’s next “Home Alone” victim.

My New “I Don’t Get It” Box

I now own a virtual “I Don’t Get It” Box. It was delivered to me over the weekend after a conversation I had with a good friend. She’s had a tough year and great loss. We talked about faith, and how it processes us through life circumstances that are more than difficult.

Sometimes stuff happens that doesn’t fit into our neat and tidy theological boxes. We can’t check them off our doctrinal lists. Things happen that we can’t explain and we have no idea which (thought-I-had-this-all-figured-out-already!) category to file them under.

After this conversation with my friend, I woke up the next morning with a picture in my head. Some people call them visions or awake dreams. Call it whatever you want, but I saw me with a long line of people stretched out endlessly behind me, standing in front of a huge box inscribed with a large glowing font that said,

“I Don’t Get It.”

Everyone in line, including me, had a piece of paper in hand. I had written on the paper, parts of my life I question, things I don’t understand and circumstances I have faced or still face that are confusing and seem to have no answers.

I stepped up to the box and threw my paper in. When it hit the bottom the font on the front of the box changed and began to flash in bright neon over and over again,

“Just TRUST Me. Just TRUST Me. Just TRUST Me. Just TRUST ME….”

I may not ‘get’ many things but I get this message loud and clear. I don’t need to analyze, understand, explain and figure everything out.

I can’t know everything because knowing ALL would make me God. Wasn’t that we could be like God by eating the only off limits fruit from the tree of knowledge of good and evil, the original lie of the serpent?

Man fell for the deception. He believed it. Do we still?

God wants our trust. He wants us to believe Him. It’s all He’s ever wanted. So I lay aside my need to know and simply trust..

Because God,

I believe You are good.

I believe You are love.

I believe You are faithful.

I believe You are merciful.

I believe You desire only the best for me,

Today, no matter what happens, how I feel, whether I understand or not, I throw it all into my “I Don’t Get It” box and…

Just Trust You!

“You will not certainly die,” the serpent said to the woman. “For God knows that when you eat from it your eyes will be opened, and you will be like God, knowing good and evil.” Genesis 3:4-5

“Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.” Psalm 9:10

“Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.” Proverbs 3:5-6

“Do not let your hearts be troubled. Trust in God; trust also in me. John 14:1

The Ultimate Caregiver

Caregiving is selfless work. Problem is, I’m not selfless. Not yet.

I’ve grown through the years I’ve been doing this overtime parenting/caregiving thing, but honestly, I still have a long way to go. There are times when I still struggle and it seems too hard, too frustrating, too confining, too self sacrificing, too…much.

But love moves me forward another day. I love my son and he needs me, whether he realizes it or not. So I rise in the morning with new mercies, new grace and make the most of both the imperfect and fantastic days we are blessed to have.

Comparison is a luxury I can’t afford. Neither can you. When we start comparing our life to others our thoughts can travel into dangerous territory.

Some comparisons that might spiral me into dark places:

They go on vacation. We can’t.

They get in their car and go whenever/wherever they want. I can’t.

Their thirty something year old kid is self sufficient. Mine isn’t.

They don’t have to worry about what will happen to their grown child when they’re no longer here. I do.

There’s plenty more of these, but you get the idea. I can’t allow my mind to dwell on what they are doing. Such thinking has to be ‘taken captive’ (2 Corinthians 10:5) and serves no purpose but a downward spiral into self absorbed misery.

What I can think on is God’s goodness; His provision, grace, strength and blessing.

I have a roof over my head. I’m not hungry. I’m in functioning health. I have support from a good husband, caregivers, church and friends; a decent car to drive when I can get away, a yard full of awesome plants to enjoy and a son who only needs constant reminders to attend to his own basic physical needs. And some times, even while being grumpy and stubborn, Jon’s quirky, humor makes me smile.

Things to be thankful for outnumber the they comparisons and inconveniences, two to one.

Jesus modeled selfless caregiving when He loved me enough to lay aside His Heavenly crown, take on flesh and come to an Earth originally created in perfection by Him and utterly broken by the degradation of His greatest creation – man.

The Ultimate Caregiver came to serve and give His life away. He came to provide solutions for the desperation of humanity and offers the grace and strength I need to serve and care as He does.

Faithfully

Patiently

Cheerfully

Lovingly

Sacrificially

Selflessly

I pray everyday, as I struggle to set ‘me’ aside again, for the benefit of my son and for others, that I will emulate Christ’s love in some small way.

Because true love lives to serve.

John 13:4…he [Jesus] got up from the meal, took off his outer clothing, and wrapped a towel around his waist. ⁵After that, he poured water into a basin and began to wash his disciples’ feet, drying them with the towel that was wrapped around him.¹²When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. ¹³“You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. ¹⁴Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. ¹⁵I have set you an example that you should do as I have done for you. ¹⁶Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him. ¹⁷Now that you know these things, you will be blessed if you do them. (NIV)

Matthew 20:26-28 “But whoever would be great among you must be your servant, and whoever would be first among you must be your slave, even as the Son of Man came not to be served but to serve, and to give his life as a ransom for many.”

1 Peter 5:7 ESV Casting all your anxieties on him, because he cares for you.

Isaiah 41:10 ESV Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Unconditional Love – My Special Education, Lesson #8

Jon was wandering around the kitchen before I left for Sunday morning service, taking stock of the plate I had prepared him and gathering more food from the pantry and fridge.

When I came home, he was standing next to the dinette table just off the kitchen, and had methodically arranged all his food, dishes, silverware and some treasures from his room on and around a place mat.

He’d barely eaten anything while I was gone which is typical for him. He has to have things arranged a certain way before he feels settled and his obsession will often stretch the process out for hours.

The caregiver left and I started on lunch for Mike and I, warming up leftovers, putting a meal together in about fifteen minutes and setting our places on each side of Jon’s. Our son rarely wants to sit and eat with us but it looked like he was about to settle down and I was hoping the three of us would have lunch together this day.

The unspoken Jon rule is this: he can invade your space at any time, day or night but you take a risk invading his. Sometimes you are received, many times not (read more about that here).

It’s somewhat like the kings in the Old Testament who raised a scepter to show their approval if you entered their presence without being beckoned. If approval was not granted you could quickly be missing your head (see Esther 4:11-16).

As Mike and I took our seats, blessed the food and began eating, the expression on Jon’s face tuned into a scowl. We had invaded his space and he wasn’t happy about it.

“Come on Jon,” I said, “sit down and eat with us. You did a great job setting your place here so let’s have lunch together today.”

It wasn’t happening. He began snatching his things off the table and moving them to the dining room, stomping back and forth from one table to the other until everything was moved. No amount of encouragement or pleading convinced him to stay.

It’s always his choice, never ours.

I’ve learned so much about the father heart of God from Jon through the years. I know what it’s like to feel rejected by your child and I also have a greater understanding of unconditional love.

Jon has days when he barely acknowledges my presence. But regardless of how that makes me feel, I’m aware of his social limitations and I still love him. I will always be here for him, reaching, waiting; doing everything I can to give him the best possible life.

There are many ways I want to show Jon how much I love him that he often doesn’t want or accept, so I have to meet him where he is and on his terms.

As I read the Bible, I see so many illustrations of God’s love for His people. His children.

He longs to be with them. He wants to bless them, rescue them, and shower them with love and mercy. He comes into their situations over and over, making Himself available in their darkest hour; if they would only acknowledge Him and respond to His love.

But they don’t. They turn away and break His heart.

Again. And again. And again.

So God waits.

And He’s still waiting.

Waiting for me and you to acknowledge Him.

Waiting for us to respond to His love.

Waiting for His kids to understand the Cross was the very best He could offer to exchange our wayward and distant heart for His limitless love.

He longs to be with us and waits to be invited.

“Behold, I stand at the door and knock. If anyone hears My voice and opens the door, I will come in to him and dine with him, and he with Me.” (Revelation 3:20)

God will not force Himself into this relationship. It’s on my terms, not His. It’s all about my willingness to open the door, set a place at the table, pull out a chair and invite Him to sit with me.

And it makes His heart very happy when I do. Just like it makes me happy when Jon decides he wants to be with me.

Unconditional love hopes.

“Maybe today will be the day.”

Unconditional love never gives up.

“Not today? OK, then maybe tomorrow?”

Unconditional love reaches.

“Whether you want me or not, I’ll always love you.”

Unconditional love waits.

“I’ll still be here when you return.”

Isaiah 49:15 -16 ““Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands.

Jeremiah 3:14 “ You are unfaithful children, but you belong to me. Come home!”

Luke 3:37 “O Jerusalem, Jerusalem…How often would I have gathered your children together as a hen gathers her brood under her wings, and you were not willing!

Luke 15:20 “So he returned home to his father. And while he was still a long way off, his father saw him coming. Filled with love and compassion, he ran to his son, embraced him, and kissed him.”

A Place Called Special

a look inside a special life