Category Archives: Parenting Life

Flying Solo Now

I write this on a flight to Chattanooga, Tennessee, to celebrate my son’s first published book release. He’s hosting a book launch party this weekend. It seems to be a thing authors do now and it’s a rather big deal.

David’s father would have been excited to attend this event. My husband should be here next to me. But the seat is as empty as the gapping hole in my heart.

We often went places without each other. I’d go and Mike would stay home with Jon or the reverse. Though we didn’t always enjoy our necessary separations, we accepted it as how things had to be. And I always knew he’d be waiting for me when I returned.

This flight feels different than any I’ve taken before. I’m surrounded by people, crammed together inside an Allegiant MD80, yet it’s so lonely. As the miles are absorbed beneath me and the land slides away, the one person on this planet, who knew me better than anyone, who made history and a life with me is missing. I could fly all the way around the circle of the earth in this plane, and not find him.

My husband won’t be there when I go back home. I’m flying solo now.

For those who say “He’s still with you,” or “He’s watching over you, I say “No. Maybe. I don’t know.” There’s no scriptural basis I can find for that. If he is watching me all the time he’s sad at how heartbroken I am without him. There’s not supposed to be any sadness or heartache in Heaven. So I have my doubts.

And right now it’s not enough to think he might be watching me from wherever he is. It’s just not enough for me. I can’t see, hear or touch him. I can talk to the air and tell him how proud we are of our kid’s accomplishments but Mike isn’t here with me to share in it. He doesn’t answer. All I get in return is silence.

Saying he’s with me doesn’t help. It doesn’t make me feel better. In fact, hearing that he’s watching from somewhere I’m not, makes it worse. Only a reminder Mike’s physical presence is sorely missing from mine.

Maybe I’ll be more accepting of such platitudes later. In a year. Or two. Or three. But not now.

So Mike, if by some chance you are listening and if you can see, I’ve arrived now and I’m holding a copy of our son’s book in my hands. It’s amazing. So is he. Just like his father.

And it’s cold in Chattanooga. You’d be complaining right along with me. Wish we could lay here together under this fluffy, warm comforter and talk about it all.

Just want you to know this weekend, you’ll sure be missed at this celebration of what we, and then our son, created.

Who Decides!?

There’s a battle raging in the UK right now over the life of a little boy. Eleven month old Charlie Gard was born with a rare genetic disorder which, up to this point, has not allowed him to go home. Charlie’s parents have raised over a million and a half dollars to bring him to the USA for an experimental treatment in a New York hospital .

The Pope has even offered to bring the child to a Vatican pediatric hospital in Rome, but the UK hospital took the parents to court and a judge ruled, along with the medical establishment, that Charlie will have no ‘quality of life’ and therefore deserves the right to ‘die with dignity’. He will not be allowed to leave the facility.

I’m trying to decide if this is the evil side of socialized medicine or the reprobate minds of medicine playing god. Maybe it’s both. Since when does a hospital get to tell parents doing everything possible to help their baby, “NO!”?

The term ‘quality of life’ is thrown around extensively in relation to disability. Somehow people in the mainstream, think they have the right to decide what quality of life looks like, acts like and is. It’s one thing if we want to decide this for ourselves and possibly our own loved ones but when we start forcing our definition on others, there’s a problem.

Those of us who love kids with special needs, quickly learn what quality of life really means. They bring quality to life in all the ways that matter most, helping us redefine life’s priorities. All the shiny, glittery attractions that spell success in the world begin to pale as we share life from their point of view.

My son, Jon is content living life his way, though it may not be conventional or understood. When those of us considered ‘normal’ start deciding those considered ‘not normal’ have no right to exist…well, if we know history, we also know where this thought process leads.

Charlie’s parents should be allowed to and applauded for doing everything they can to help their child. If he doesn’t survive that will be God’s decision, not man’s, which is exactly how it should be.

Please pray for the family of little Charlie Gard.

A Fathers Influence

The prevailing statement in the biblical records of the kings of Israel and Judah in the books of 1^st and 2^nd Kings is this, “and ______ became king. He did evil/good in the sight of the Lord as did his father.”

A dad present, absent, involved, indifferent or even unknown will shape the emotional and spiritual health, values and character of his child well into adulthood.

Fathers matter. A great deal.

Though the reward for years of teaching, training, playing, listening, loving, providing and sacrifice, may not be obvious at this moment, plod on.

Sometimes you are weary, flawed, imperfect, but don’t give up. Be your kid’s dad to the best of your ability and in the grace and strength of your Heavenly Father.

Eventually the fruit of your influence will ripen to maturity and you will be blessed with a rich harvest. You will leave a legacy of good for the next generation.

Thanks Dads, for all you do for your children, for your commitment to your family.

You ARE making a difference.

Happy Father’s Day!

Grandson Asa talking to Grampa!

Thanks For Loving Me

Jon was in his room, Mike had gone to bed and the house was quiet. I was in the family room reading a book when my phone’s text notification sounded.

I finished the paragraph I was reading, swiped the lock screen off and hit the message icon.

This text popped up:

I read it, re-read it. And read it again.

I don’t know what prompted my son to send this or what he was doing when he wrote it. He’s a new father who is discovering how much a parent loves a child and what that entails.

I also don’t remember reading anything that touches my heart the way this simple, random text does.

The years of pouring into, providing for, caring, loving, hugging, teaching, disciplining, laughing with, crying over, worrying about, not giving in or up; all those hours invested in David, summed up in one eight word sentence.

There are no words to describe the fulfillment and joy it brings.

Those raised in dysfunction, abuse, conflict, abandonment, addiction, fear, neglect, anger or the myriad of other human frailties that cause physical and emotional scars, can change the trajectory for your children.

As imperfect parents we can still decide That stops here, whatever the That is, we can choose to not pass it on to another generation. By God’s power and strength we can be the parent our child needs us to be.

We can change. Be different. Make a difference. Forge a new family legacy constructed of grace, mercy, endurance, and forgiveness.

God set the example. He too says, “Thank you for loving Me like I love my Son.” He passed His love on by sending Jesus as the perfect sacrifice for us, and now “We love Him because He first loved us” (John 4:19).

David, now you understand how much you are loved by us and as a father, I hope you have a greater awareness of how much you are unconditionally loved by your Heavenly Dad. It’s your turn to pay that love forward. All the accolades, money and material goods in the world will never take the place of a love heritage passed to a new generation.

I pray, some quiet evening, years from now, when your season of parenting is over and your children are grown and gone, you receive a text like this one.

This one line text message is what parenting is all about.

This is a no regrets moment.

“Thanks for loving me so I can love!” This is the ultimate reward.

Psalm 127:3-5. “Children are a gift from the Lord; they are a reward from Him. Children born to a young man are like arrows in a warrior’s hands.”

Isaiah 54:13 “All your children will be taught by the Lord and great will be the peace of your children.”

Proverbs 17:6 “Grandchildren are the crown of grandparents and parents are the glory of their children.”

Parent Guilt

I rarely remember my dreams, but the one I have of my son, Jon, is always the same. He is lost.

He might be any age and in different surroundings but he is always lost. And I am always looking for him. And I can never find him. And no one around me cares enough to help me look.

I hate this dream. I hate the panic and the helplessness of it. I hate that after thirty six years I still have it.

I’ve come to believe this dream says a lot more about me than it does my son. Even though I have come to accept and love Jon for who he is, I think there is still a deep inside part of me that struggles with how this turned out. I had expectations. I wanted different. I wanted more.

I saw the same guilt-panic in my son and daughter-in-law while visiting them recently. Their newborn son cries, a lot. Better described, he screams. He balls up his little fists, kicks his legs, flails his cute little arms, turns deep shades of red and wails himself inconsolable.

And they feel guilty. Why isn’t he happy? What are we doing wrong? This isn’t supposed to be like this.

Parenting is indescribably wonderful and can also be overwhelmingly scary. Kids don’t come with a step one, step two, step three, instruction manual like those for assembling a boxed set piece of furniture. Don’t we wish it was that easy?

Their manual is more like the one I recently received with a new small appliance I purchased, “Caution! Do not….,” a list of warnings; I had to figure out how to actually use the thing on my own. Is it this button or this one? Does it take a battery or not? Hmmm….

All parents deal with some level of guilt. It comes with the job. Most of us don’t know what we’re doing when we start and those who think they do soon find out it’s SO different when the kid is yours. It sounds good in the parenting book we read and the advice of a zillion experts we’ve heard, but now that you’re up to your eyebrows in parenting, it’s not that simple.

All of us feel, at some time in the process, “I don’t know what to do. I could have done more. I could have tried harder. I could have been better at that. I shouldn’t have said that. I should have realized. I am failing/have failed my child.”

Parent guilt can worry about the infant who won’t stop crying, worry about the teen who won’t listen anymore and worry about the adult who is making wrong choices.

Parent guilt can exhaust itself on extra activities, buys kids stuff they don’t need and avoid disciplining a child who is desperate for it.

Parent guilt sees failure rather than success. It sees the problem instead of solutions. It keeps our mind in a state of unrest rather than peace.

I believe parents of children with special needs battle the guilt demon more than most. I hear it in the Facebook posts, read it in their blogs and see it in their eyes. We never feel we do/did enough. Maybe the next treatment, medication, behavior plan, professional or therapy will make a difference. We are a driven, guilt-laden bunch, always looking for another help, another hope, and another solution.

The guilt twinge is real when I read about the person with Down syndrome who is getting married, or the one modeling on New York runways, or the one who owns a restaurant, or how about the guy with autism working for Microsoft? I have to remind myself that these are often the exception not the rule.

On our best day we have no guarantee how our kids will turn out but they basically need what all of us long for: love, acceptance, boundaries, food, shelter and most of all, God. The greatest thing we can ever do for our child is help them understand the God shaped hole inside them, only their Creator’s love can fill.

The other best thing we can do is say I’m sorry when we mess up and forgive ourselves for being less than perfect.

In spite of us, and maybe because of us, our children are quite resilient and they don’t need perfect parents. What they need is forgiving and forgiven parents.

Loose the guilt. It’s a parenting accessory neither we nor our kids need.

Love and forgiveness always win and inevitably chase the guilt demons far away.

1 John 4:18 “There is no fear in love but perfect love drives out fear..”

Romans 8:1 “So now there is no condemnation for those who are in Christ Jesus for the law of the Spirit of life has set you free..”

Psalm 127:3 “Children are a heritage from the Lord, the fruit of the womb a reward.”

Worthwhile Investment

I left the library after picking up a book I had reserved. As I walked to my car I was suddenly transported back in memory to a time when my young boys and I visited the library every week.

We’d go home with stacks of books and I read to them regularly. Dr Suess. Chronicles of Narnia. Little House On The Prairie. Silly books. Fun books. Historical books. Bible stories. Informational books. Series books.

I wanted them to love books and words as much as I do (you can read about that here). I wanted to instill in them a love for reading.

Because I also enjoy music, our boys were exposed to it as well. We were in church a lot, so of course, hymns and contemporary choruses and worship music, but also other genres.

We traveled to local concerts. Bill Gaither and the harmonies of the Gaither Vocal Band. Free symphony orchestra concerts in the park on summer nights. The New Hampshire Symphony Orchestra with invites by a friend who played violin there. Veggie Tales. The Donut Man. Ron Kenoly. The Blue Man Group. The Annie Moses Band and more.

We brought a video home one day, “Yanni, Live At The Acropolis.” David watched, mesmerized by the incredible solo of the band’s drummer. He watched it over and over and decided he wanted to play drums. We bought a cheap set, put it in the corner of the basement and signed him up for weekly lessons. He was nine years old and took lessons for the next five years. Eventually he started playing at church and youth group.

The year of Florida’s hurricane summer, 2004, the power was off at our house consecutively for twelve days. Besides cutting and hauling the mountains of trees that had fallen on the two and a half acre jungle lot of our Kissimmee home, there was nothing else to do but sweat. David pulled his father’s old guitar out of the back of a closet and started playing. His love for creating music exploded from there.

Our son grew up to love God, books, music and of course his wife, Clara, who is also an avid reader and book lover. They serve in several capacities at their church and Dave will soon be a published author and writes his own music, both lyrics and arrangements. (You can see all that here.)

I like to think I had a little something to do with that. Though we never pushed becoming a writer or musician on our son, exposing him to these things gave him interests to explore and options to consider.

If your children are small right now and time consuming and exhausting and wonderful and amazing and annoying and the myriad of things kids can be at any given moment, remember these few years you have to invest in their lives are incredibly influential and fleeting.

You are not yet seeing the long term dividends of the repetition, the monotonous and the consistency of your faithful parenting, but know this, what is important to you will very likely be important to them and will definitely help shape who and what they become.

Remember on the days it seems futile, when it appears you’re child is not listening, when you wonder if they’ll ever turn into useful humans…

Don’t. Give. Up.

Don’t wring your hands in despair.

Pray much.

Train up your child in the way he/she should go.

Keep doing the next right thing.

Expose them to God, His love, His word and principles and the beautiful and amazing things that still exist in the world.

There will come a day when you’ll have a memory triggered, as I did leaving the library last night, and realize…

It was all worth it.

Proverbs 22:6 “Train up a child in the way he should go: and when he is old, he will not depart from it.”

Acceptance – My Special Education, Lesson #11

I was packing for a week long cruise, the first real vacation Mike and I have had together in fifteen years. It was a celebration of forty years of marriage and a long overdue get away.

Our good friends had made time in their busy schedule to stay with Jon and our youngest son and his wife were joining us. Though we were excitedly looking forward to this time together, it was another family event Jon would miss and I was, again, contending with guilt attacks and assaults of sadness.

I sent my conflicting emotions to the back room of my mind and updated the long list of Jon care instructions, made sure his prescriptions were filled, printed out a medical authorization letter and remembered to leave his insurance and ID card and keys to all the places we keep Jon-locked.

After boarding the ship I knew bringing him would have been a disaster. Too many people, long lines, moments of hurrying then waiting, decks that didn’t go all the way through the length of the ship causing creative strategies to find our way around, debarking for ports and making spontaneous plans and last minute decisions for the day then hurrying back to the ship on time so it didn’t leave without us.

Transitions. Transitions. More transitions. Something Jon never does well.

There were other moments when we thought of him. “Jon would love this,” we said. The never ending buffet, the puffer fish shaped cup wheeled by on a drink cart, the magician at our dinner table doing coin tricks, the casino and it’s never ending spread of pricey “video games”, a giant floating hotel to wander through and him curiously and slowly poking in every corner, nook and cranny.

As we sat together at dinner each evening there was contentment in this extraordinary setting. Even our little grandson was along, growing inside the swelling womb of my daughter-in-law. But one of us was missing. My family was incomplete.

There are random moments in life that trigger twinges of loss, a mourning for what should, but never will be. We are forever fighting enemies of guilt, regret and loss and constantly rising to new levels of acceptance.

Acceptance is defined as an assent to the reality of a situation, recognizing a situation without attempting to protest or change it. It is derived from a Latin word meaning “to find rest in.”

Some things we can’t control or change, we can only accept, but it’s often difficult to find a place of rest in circumstances beyond us. Living out of the ‘what ifs’ and ‘if onlys’ is pure misery and leaning into the, “Are you kidding me? I’m supposed ‘to find rest in’ this!” is hard work, but peace can only come with relaxing into the ‘what is’.

Even when life is great, it’s still not perfect. On this cruise, we had to circumvent a hurricane and miss the most anticipated stop of the trip. While sailing on the far reaching edge of the storm, walking turned into a balancing act and we were woken in the night by rocking, rattling and clicking sounds and drawers, in our room, sliding open then thumping shut as soon as sleep came again. I was nearly attacked by a banana loving iguana on a Saint Thomas beach and every day was a bad hair day.

But it was easy to overlook these uncontrollable situations in the anticipation and excitement of another sunrise and new adventures.

Life sails on like a cruise. We board at birth and debark when taking our final breath. There are stops along the way, new places to explore, ports to experience. Some we appreciate, others not so much. Some we never wish to see again and others we hope for, but never experience when an unexpected storm changes the direction of our journey.

There are long days at sea, as we’re carried along, waiting, and trusting the Captain of our ship knows where we’re headed and how to safely reach our destination. With God at the helm we are offered guilt free, acceptance-based cruising and a place to find rest in the storm.

It’s the best way to travel and it’s never too late to book a lifelong trip.

So don’t wait. Start now.

Guaranteed, you’ll love the adventure.
“Jesus Savior, pilot me
Over life’s tempestuous sea
Unknown waves before me roll
Hiding rock and treacherous shoal
Chart and compass come from thee
Jesus, Savior, pilot me.” ~ Edward Hopper, 1871

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

“Come unto me..and I will give you rest.” ~Jesus, Matthew 11:28~

The Chasm Between My Norms

I opened my Facebook page this morning to pass along the exciting post our youngest son and his wife shared, announcing our first grandchild on the way (Yahoo!).

As I typed a comment and hit the share button I noticed my post underneath, from last night, about being out with Jon and his roll of toilet paper that accompanied us to the pizza place.

I usually don’t give it much thought, then there are moments like this one, when the wide extremes of my life’s norms, jump up and smack me right between the eyes.

Webster’s Dictionary defines normal as usual or ordinary; not strange.

One child growing up, getting married and having his own children is pretty ordinary.

The other child growing up and toting a roll of toilet paper to the pizza restaurant, standing in parking lots for thirty minutes before going inside a building, singing Disney songs to me at one thirty in the morning and the myriad of other unusual events that come with being Jon’s mom, Mr. Webster wouldn’t consider ordinary at all.

As I scroll back through some of my older Facebook posts, I’m reminded that life with Jon is anything but ordinary and some of it seems downright strange, yet everything about him and this life we share with him has become normal for us.

Occasionally, I’m sad, when I think of the usual milestones Jon’s will never experience, but today the wide extreme depicted by those two Facebook posts made me laugh out loud.

We live in a culture that is saying all experience, ideas and opinions must be either/or. And while it is true there are still absolute values, standards and morals, regardless of what culture thinks or says, my sons have placed me in a world that is both/and; the usual and the unusual, the ordinary and the strange, mixed together in a kaleidoscope of crazy wonder.

Today, I smile, thinking of the unique joy found in living a life that is a pendulum, swinging from one extreme to the other. I’m perched on it, hanging on tight, mostly enjoying the ride, with no clue what tomorrow will bring

Maybe ordinary is overrated.

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!

A Place Called Special

a look inside a special life