Category Archives: Special Life

A Jon View of Loss

I found this photo today, upside down on an end table in the family room. An old one, judging by how we’re dressed, possibly taken in the late 1980’s or early 90’s. 

A snapshot of happier days with Mike’s youngest sister and husband, and me and what used to be my husband. Used to be is the key phrase here, because two years ago my husband died. Suddenly. Unexpectedly. And as you can guess, he was in this picture. If you look closely his hand is draped over my right shoulder.

As soon as I flipped this photo over, I saw Mike had been scratched out. And I knew who did it. But I wasn’t sure why. What I do know is Jon is still internalizing the loss of his father, as am I, and though he’s spoken little of it from the beginning until now, this is proof.

I took the photo to Jon, put it down in front of him and very gently asked, “Jon, why did you you scratch your dad out of this picture?” It was a shot in the dark to ask and I really didn’t expect an answer from my mostly nonverbal son.

He glanced at the picture and looked away. “He’s gone,” was the reply. So much sadness in his expression. So much hurt and pain in his eyes. Maybe my disabled son thinks scratching his dad out of a photo somehow makes it all go away. I wish it was that easy. Wish I knew Jon’s thoughts. Wish we could have that conversation. Wish he could open up and pour out everything he’s feeling inside. But he never has. He doesn’t have those words. 

So he just makes his father disappear. 

In the past we’ve been told by ‘experts’ and believed that grief is on a timeline, it’s not. Two years is nothing compared to the lifetime we had Mike with us. Thirty seven for Jon. Forty three for me. So you will excuse us if it takes us that many years to ‘get over him.’ Please?

Honestly, I doubt we ever will. As much as we would love to scratch the sorrow and pain of loosing him away, we can’t. Mike not being here has impacted us greatly and it’s painfully difficult. Still. We are so aware of his absence, his physical presence missing here, in our daily life. 

Time does not erase the memory of him. Or the loss of him. We’re simply learning, with the passage of days, months, years, how to live without him. Maybe time will permit us to be better at that. I hope so, because scraping Mike’s image off every photo we can find, certainly won’t. 

In the days ahead, I pray I can find the wisdom to help my son’s heart know this. And mine too.

Broken Birthday

A632849B-8E8B-4056-B86E-E0A278D505CAJon’s birthday was a few weeks ago. May 4th actually, and birthdays have always been a big deal around here. Mike made sure of that.

He believed if God took the time to make you and put you here on this ball we call Earth, you mattered. You were valuable, thus birthdays were cause for celebration. 

“No one should have to work or go to school on their birthday,” he’d tell me every year, the little scowl line erupting between his eyes over the unfairness of it all. “It’s a holiday. In fact you should have your whole birthday week off!” 

Who could disagree with that? Mike would buy a cake, candles, balloons and ask the birthday person in advance, “What would you like for your birthday? Where do you want to go?” Then he’d make it happen. And he loved it.

I went to the store the day before Jon’s birthday. Bought a cake and candles and made sure he had a few gifts to open. I asked him where he would like to go, what he’d like to do, and made a few suggestions. 

Before I went to bed that evening I reminded him, “Don’t forget to think about what you want to do tomorrow Jon. It’s your birthday.”

He was standing in the kitchen and turned to look at me. “I don’t care,” he said and my heart broke into a zillion pieces. Again.  

I went to bed that night, cried into my pillow and cried out to my Heavenly Dad. “Help us please! We are so wounded. Heal us. Bring us to a place of new joy.”

“Hear me, Lord, and have mercy on me. Help me, O Lord.“ Psalm 30:10

Jon didn’t leave his room on his birthday and we never went out. It was the first time in 38 years he didn’t want to hear the happy birthday song or burn the candles down to the frosting before he blew them out. Several days later that unopened package of candles was tucked away in a drawer, when I finally cut the cake and gave him a piece with his dinner.

Right now, the loss of Jon’s father in his everyday life, turns every special occasion into pain. The events we usually celebrate become mile markers for what is missing. Reminders of what was. This is the nature of grief. 

Choking back tears, I gently replied, “It’s OK Jon. I understand. Maybe your next birthday will be better. Maybe next year both of us will care again. Let’s just keep asking Jesus to help us with that.”

Maybe by next year or the one after we will celebrate.

Maybe then we will say, “You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to you and not be silent. O Lord my God, I will give you thanks forever!” Psalm 30:11-12

Please Lord, let it be so.

When I Am Afraid

77F80DF4-511F-4EE2-B100-A2298B970107I explained to Jon on the way to the hospital the doctor was going to give him some medicine to help him take a nap and would go inside him with a tiny, tiny camera to look around. I didn’t give him the medical term. Bladder Cystoscopy.

After we arrived, nurses moved in an out of the blue curtains of the outpatient operating room waiting area. All of them pleasant, helpful and patient.

“Here Jon, take off all your clothes. Put on this gown.”

“Get in the bed, Jon.”

“We need to put these stickers on your chest so we can check your heart.”

“Is it OK if we put this blood pressure cuff on your arm now?”

“You need this oxygen clip on your finger.”

“It’s time to put the IV in. Can you give me your arm?”

So many instructions. So much to process. The expressions rolling across Jon’s face like a fast forwarded movie, told me he was confused by it all.

Our friend Judy, who came to be backup support, had quietly explained to several of the nurses, out of Jon’s hearing, that his father died recently and I knew Jon was thinking about that right now. No one else would know it but me. I saw the fear in his eyes. 

He walked to me, closer than usual and stared into my eyes. I asked him very quietly, “Are you afraid Jon?” He put his forehead against mine and answered, “I‘m going to be just like Dad.”

I grabbed him close to me and started to cry. “Oh no Jon. You are not. You’re going to be OK, Honey. Dad didn’t die in the hospital. I know you still think he did but that’s not true. These doctors and nurses will take very good care of you and you will be just fine. And Judy and I will be here to take you home when you wake up.” 

I hugged him so hard and he didn’t resist, this son of mine who rarely wants to be touched, who usually flinches or shrugs my touch away. 

I heard nurses sniffling behind us.

I‘ve yet to tell Jon how and where his father died. How do you tell this guy, “Your dad died in the front yard while he was home alone with you. While you were watching a movie in your room your dad went to be with Jesus.” How do you say that to him?

What and how much to say about the traumas of life is always a challenge with Jon. He understands way more than people realize. Anyone who hangs out with him for long figures this out. But he has a hard time expressing what he’s thinking. The thoughts and words are stuck somewhere inside him and no one knows more than those who have gone through this incredible grief how healing it is to be able to say exactly what you’re feeling all the time. It’s part of the moving forward process.

Does Jon need to know his dad died right here at home? Will that knowledge make him afraid of his home, the one place of safety he has in the world? And if he knows it, how will he ever be able to process it?

These questions and uncertainties roll around in my mind at night and spring from me in the form of tears and prayers.

I’ve asked Jon several times over the past few months if he wants me to tell him what happened to his father. So far he’s given no indication he wants to know the truth so until he does I guess I‘ll keep it at that. Maybe it’s better this way for both of us. I don’t know.

For now I’ll keep asking God for wisdom. Discernment to understand my son’s heart and patience to deal with whatever arises with another sun. I‘ll keep reminding my son his dad may not be here with us anymore but Jesus is still and we’re going to be OK. 

Even when we’re afraid of all these new unknowns, even when it doesn’t feel good or safe, we can lean our forehead on His. We can tell our Savior, “I‘m afraid.” 

He will wrap us in His arms and reassure us, “I’m here. It’s going to be OK.”

Psalm 56:3-4 “Whenever I am afraid, I will trust in You. In God (I will praise His word), In God I have put my trust; I will not fear.”

When Love Isn’t Easy

IMG_0201“How do you do it? That’s hard.” This is the reaction I usually get when people ask me what I do. When told I’m the full time caregiver for my son, Jon, and I can’t leave my house unless someone replaces me, the common response is, “I couldn’t do it.”

What? Of course you could. That’s your child. You’re telling me you wouldn’t do whatever was necessary to take care of your child? Hard or not?

Whoever said love is easy?

Most songs written about love are suspended in the infatuation phase, the dreamy, it’s all about how it makes me feel beginnings or the, this ain’t working and I’m outa’ here endings. Not too many start in the middle, where follow through, determination, faithfulness and plodding reside.

Love can feel scratchy as a tag in the neck of a new shirt or painful as open heart surgery. Love is often messy. Complicated. Gritty. It’s sacrificial action, not just starry eyed feelings. It’s giving up much of yourself without giving up on another. It’s relinquishing your desires for the well being of someone else, even and especially when you get very little in return.

Sometimes it IS just plain hard.

I took Jon back to the sedation dentist the other day. This guy who ignores me half the time and rarely lets me touch him, hugged me long and hard before he went down and out in that chair. He was afraid. Needed reassurance. He held on tight ’cause when life gets tough and scary, he knows who’s there for him. He knows who loves him, who sacrifices for him, who would do whatever it takes to assure his well being.

Yet, I’m aware of a love far greater than mine could ever be.

For God so loved the world that he gave..(John 3:16). This is how we know what love is, Jesus Christ laid down His life..(1 John 3:16).

Love nailed Jesus to the cross, not people. His painful, bloody, horrific love, went all in.

..he [Jesus] gave up all he had, and took the nature of a servant. He became like a human being and appeared in human likeness. He was humble and walked the path of obedience all the way to death—his death on the cross. Philippians 2:7-8

He didn’t choose the easy way. The comfort and sunshine path. The all-about-me road.

This love was hard as nails, thick as blood and strong as death.

How does 1John 3:16 continue? We too, then ought to lay down our lives for others. Ouch! That’s some tough stuff right there! I can’t produce sacrificial love in my own strength. My selfish humanity rebels against such a thing. I need more of Him. His grace. His transformative power. His love in me, poured out to others.

Be imitators of God, as beloved children. And walk in love, as Christ loved us and gave himself up for us, a fragrant offering and sacrifice to God. Ephesians 5:5

Real love isn’t easy or cheap. It isn’t free. True love costs everything.

The famous 1960’s song proclaimed, “What the world needs now is love, sweet love.”

Yes. It’s still true. But not more of ours. More of His!

Jon’s Survival Gadgets

IMG_0161Jon always packs a grocery bag or two of ‘items’ when we go out. In case you’re ever wondering (which you’re probably not), here’s what’s in the latest one:

3 stuffed animals
A rubber bracelet
3 broken pen halves in a ziplock bag
1 broken pen half (not in a bag)
A clothespin
A blue shoestring
A fabric belt with a missing buckle
A faux gold filigree cross
Pair of headphones
Broken piece of styrofoam

An old TV remote, a working pen, a drawer knob and a phone jack, all in a ziplock bag
3 straws in a ziplock bag
A page ripped out of a book
A long brown plastic thingy?
His white karate jacket
A neck pillow
A juice box
A blue shirt

I’d like to start a new TV reality show called “Jon’s Survival Gadgets” where we take a person out into the Artic, the woods, the jungle or leave them on a mountain top a zillion miles from nowhere with nothing but what Jon packs. If they survive for two months, using his gadgets and doodads in creative ways, they win a day out with him as a prize.

Who want’s to go first?

Who Decides!?

A large number of free wallpaper download, including mobile wallpapers, desktop wallpaper, computer background, 360x640, 640x360, 240×320, 1280×720, 320×480, 480×272, 120×160, 1200×800, 800×480, 960×800, 960×854, PSP Backgrounds, Nokia, 5800, n97, 5230, 5530, n8, iPhone, Blackberry, Htc, Samsung, Motorola, Sony Ericsson ...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.

Epilogue: 2 AM, Jon and Jesus

IMG_0329I was at a fast food restaurant until 2 am this week and posted it on Facebook, partly for fun and partly out of sheer boredom because there’s nothing fast about fast food when you’re with Jon.

Someone commented on that post with this question:

“Wow, what does he do for so long? Just look around or walk around?”

So I thought I’d fill in the details for those who have never had the pleasure of taking Jon out on the town. Well…no…can’t say that. It’s not really going out on the town because we never make it to more than one place, even though we’re gone for hours!

Here’s how it went down on Wednesday:

4:45 pm – Jon comes out of his room with his shoes on. Oh, oh! A sign he wants to go someplace. He has a stuffed animal and a plastic grocery bag full of ?? (whatever’s) in his hand. He has a string tied around his ankle and shorts pockets bulging with items he has selected from his room. He walks very slowly toward the laundry room which leads to the garage, which leads to the driveway where our cars are parked. Walking slow  may or may not (or any variation thereof ) = taking five steps then stopping for three to five minutes, then five more, then stopping, then…OK, you get the picture.

5:10 pm – Jon is now in the laundry room where he changes his clothes. I keep most of his clean clothes in baskets on the counter in the laundry room because if they are put away in his room they end up piled on the floor with everything else and I can’t tell if they’re clean or dirty. This solved a huge problem of what’s clean and what’s not for us.

5:35 pm – He’s in the garage. The motion alarm we had installed out there a few years ago keeps beeping so I know he hasn’t gone outside yet.

5:45 pm – I open the door between the laundry room and garage and tell him, “Jon, Dad and I are going to church tonight so we can’t take you out. You’ll have to wait until MS (caregiver) comes and see if she doesn’t mind. She will be here soon. By now he’s added three cleaning cloths from the laundry room cabinet, another clean shirt and a clean pair of socks, to the items he’s bringing on this outing and is sifting through a pile of cardboard and paper in the recycle bin, collecting junk mail – brochures, magazines and flyers – we have thrown out. He scowls at my announcement and turns his back to me, which means, ‘What you just said does not make me happy’.

6:05 pm – I go in to change for church. The motion alarm is still continuously beeping. He’s still in the garage.

6:10 pm – I don’t hear the motion alarm now so I go out in the garage to check. My car was left unlocked and Jon has the back door open, his feet on the driveway and his body is bent inside the car, and he’s arranging all of his items on the floor and backseat. He has added a bottle of water and juice from the garage fridge to the mix. I walk out and lean over the open door, “Jon, don’t bother putting all your stuff in my car. I can’t take you out. I’m leaving for church soon. Please wait for MS (caregiver) to come and we’ll ask her if she minds taking you someplace tonight.” I see him scowl and he stops fussing with his stuff. I go back in the house.

6:30 pm – MS arrives. Mike and I have now checked on him multiple times. He has since removed his stuff from my car and is trying to get into Mike’s. MS comes in and says, “It looks like Jon wants to go somewhere” (she knows him by now). “Do you mind taking him out tonight?” I ask. She doesn’t. So it is agreed she will text me and let me know where they land and I will come to where they are after church so she can leave.

6:40 pm – We go back outside. Jon is standing by Mike’s car with all his stuff piled on top of the trunk. “MS says she will take you out,” I tell him. “Go put your stuff in her car.” He slowly starts to gather his things. I go back inside to get some money for MS so she can pay for whatever Jon decides to do. I go back outside and give it to her and remind her to put the garage door down when they leave.

6:50 pm – Mike and I come out to leave for church. MS is in the driveway waiting for Jon to align all of his stuff in her hatchback. We say “Bye, have fun.” Jon doesn’t look up.

8:15 pm – I check my phone. MS text says they are at McDonald’s. Jon has just ordered and has finally sat down. I text back and tell her I’ll be there in 45 minutes or so.

8:45 pm – We arrive home. I go inside, grab my iPad and a library book, say goodnight to Mike who goes to bed at 9:30 on work nights, and leave for McDs.

8:55 pm – I arrive at the restaurant. MS and Jon are sitting at a booth right in front of where I park. She is looking through a book and he is sitting quietly in front of a tray full of food which he has not touched yet. I go inside. MS fills me in on how long it took him to get out of the car and how much Jon loves the new self-order kiosks (he always loves a picture menu). He ordered his own food and she showed him how to pay for it. She also tells me how patient and kind the manager has been to him. I order a snack wrap and a cup of tea for myself (see previous blog post about the drunk guy who pays for my food). She stays and we talk several hours. Jon sits across from us, but does not join our conversation even when we try to draw him in.

11:00 pm – MS leaves. At this point, Jon has only downed his French fries and half of his chocolate shake.

11:10 pm – Jon grabs his extra shirt and one of the cleaning towels he brought and walks slowly to the bathroom. I get up from the booth and sit on the windowsill where I can see all the way to the back end of the building. He checks both doors and almost goes in the women’s but after glancing at me and seeing me shake my head, ‘No’ he enters the men’s. I sit back down and continue reading my book.

11:30 pm – Four teenagers come in, three girls and one guy and sit in the booth in front of me. The youngest of the four, who couldn’t be anymore than 16, is so drunk she falls over in the seat. Her ‘friends’ try to get her to sit up and she vomits everywhere. One of the girls pulls her up and takes her in the bathroom. I ask the young man if she’s been drinking and he says yes. “You’re all to young to be drinking.” I say. “Who’s driving?” The girl who looks the oldest shakes her keys at me. “I am. They called me to come pick them up at a party. I had no idea she was so drunk.” I reply, “And you brought her here? Like that? You need to take her home, Now!” And to the young man, “Go tell the manager there’s a mess to clean up here.”

11:45 pm – I realize Jon’s been in the men’s room a long time, which isn’t unusual, but feel I need to check on him. There seems to be a lot of drunk people out this night. I knock on the men’s room door and crack it open. “Anyone in here?” I ask. No response so I go in, knowing Jon won’t answer. He’s in the handicap stall standing in front of the mirror, the shirt and towel draped over the grab bar. He scowl’s when I open the stall door which isn’t locked. “Jon, you’ve been in here a long time. I just wanted to make sure you’re OK. Someone else might need to use this so please finish up and come out. And don’t forget to bring your things with you.” I leave the men’s room. About ten minutes later he appears with the other shirt on and the towel tied around his waist (Don’t ask. I don’t know either 🤔).

12:00 pm – We’re seated again. The teenagers are gone and the manager is mopping up the mess (poor thing). I chat with her as she cleans and she informs me there’s been more than normal, drunk underage kids in lately. Lots of graduation parties going on. I ask her if she gets paid more for cleaning up their mess. She laughs and says, “I wish.”

12:20 am – I have finished my book. Jon still has a half eaten hamburger and a small glass of orange juice on his tray. He gets up and goes to the kiosk to order more food then takes the receipt to the counter. I hear the girl tell him, “That will be $16 and 38 cents.” They stand there and stare at each other then he turns around and looks at me. I grab my iPad and purse (don’t dare leave those sitting around) and go to the counter. “Jon you haven’t finished what you got yet. Go sit back down and eat the rest of your first order please. We are not spending $16 on more food.” He moves over and pouts. I tell the cashier to cancel the order and to cancel any other order he might create at the kiosk. “He really likes playing with that and it gives him a sense of independence to be able to order his own stuff but he doesn’t think about the cost and who’s paying.” She smiles. “No problem.” I go sit down and leave Jon pouting at the counter.

12:45 am – Jon is sitting again. He finishes his burger and drink. I’m streaming the latest episode of, “Born This Way,” on my iPad. I tell him. “OK Jon, it’s time to go home. I’m getting really sleepy.” Throw away your trash and I’ll go get you some fries to take home.” I get the fries and come back to the table. He is slowly collecting wrappers and empty ketchup packets to throw away and organizing all the things he brought with him on the seat. I sit down and he gets up. He picks up the tray and goes to the bin, dumps his trash and takes all the trays on top to the counter and waits for an employee to come get them. The manager thanks him then he walks to the drink machine to fill up his cup. He goes back to the counter and stands there watching everyone work. To hurry our leaving process up a bit, I start carrying some of his stuff to the car. I know if I bring it all he’ll be upset so I leave a few things behind. It takes me two trips and my backseat looks like a yard sale.

1:15 am – I’m back inside sitting on the windowsill. Waiting. He is walking around the dining room looking for stray trays to bring to the front, then goes to the condiment station and puts a few napkins, straws and ketchup packets in his pockets. He walks back to the booth to get his remaining items. “Come on Jon, we really need to get home. Let’s go.” He walks toward the door opposite of where the car is parked, that exits to outdoor seating. I wait for him to go outside then go out the front door, start the car and move it over to a parking space that puts him in my line of sight. He tries to go back inside but the side door is locked (Hallelujah!). A woman is sitting outside drinking a coke, talking on the phone and smoking. He watches her for a while then leans against the side of the building, puts a straw in his mouth and pretends he’s smoking.

1:30 am – I’m sitting in the car streaming the rest of the episode I was watching and keeping an eye on Jon. He heads around the building in front of me and down the sidewalk toward the front door and I say out loud to myself and Jesus, “Please don’t go back in. Oh please!” He doesn’t. He walks past the door, picks up a paper off the sidewalk and shoves it in his pocket and FINALLY comes to the car. He opens the back door and spends the next ten or more minutes arranging all his stuff on the floor and back seat, then gets all the way in and sits down but doesn’t close the door. He sits perfectly still for at least five minutes with the door open. Mosquitoes start buzzing around my ears. “Close the door Jon, mosquitoes are coming in.” Nothing. Now I feel myself getting annoyed and raise my voice a few decibels. “Please close the door now so we can go!”

1:45 am – He closes the door. “Thank you. Put your seat belt on.” Nothing. “Jon, put your seat belt on so I don’t get a ticket from the police on the way home. If I have to pay a ticket because you won’t wear your seat belt we can’t afford to come back to McDonalds.” I hear the belt click into place. “Thank you,” I say again.

1:55 am – We pull out of the parking lot and drive home. It’s pitch dark out. No moon and very few streetlights in this place where we live (I’ve never lived in a city without streetlights until we moved here. Weird).

2:10 am – Pull into the driveway, shut off the car and put the garage door up. Jon sits still. “Come on Jon. Please don’t take forever to get out of the car tonight. I want to go to bed. It’s late.” He sits. I start taking stuff in the house. The motion alarm is going off constantly and I’m thinking it’s going to wake Mike up. I shut it off. The cat comes out and sits in front of the garage screen. Jon doesn’t like the cat and won’t come in if she’s there so on one of my trips from the car to the house I pick her up and put her out the back door onto the pool deck. I go back in the garage and Jon is out of the car, leaning against it. Most of the items he brought are piled on the roof. I go back inside, put my purse away, hang up my coat, brush my teeth, turn the light off in the kitchen and the light on in Jon’s room.

2:25 am – I go back to the garage to see where Jon is and he’s in it! Praise Jesus! I put the garage door down, tell him I’m going to bed and to turn the laundry room light off when he comes through. I decide to leave the cat on the pool deck for the night, lock the sliding door and turn the nightlight on in the hallway so Jon can see.

2:40 am – I turn the motion alarm back on and finally crawl in bed. The alarm isn’t going off so I assume Jon is inside the house. Whatever happens after that, I don’t really care. God’s in charge now and I tell Him so before falling asleep.

So there’s the answer to your question Sarah. And FYI- it’s like this everytime we go anywhere. Hope that clears things up for you. 🙂

Always On My Mind

IMG_0127Jon’s been to the sedation dentist five times in the past eight months. We still have two to three more appointments to finish all the repair needed and then there’s the question of whether there’ll be more in the future.

There’s always this thing about Jon’s future (and not just his teeth). It wants to hang over me like a dark cloud, more than I care to admit.

I don’t worry about our son, David. I think about him everyday, but never worry about him. But Jon? Oh yes! I worry about him plenty and have for many years. The older he and I get, the more it weighs on me. Maybe this is normal for parents of kids who need care and supervision their entire lives. Is it? Or am I alone here?

I can be having a conversation with you and in the far recesses of my mind I’m thinking about Jon. I can be at the grocery store, in a church service, on a cruise, visiting my grandson; I can be anywhere doing anything and Jon is present in my thoughts. He’s always on my mind.

Other’s tell me, “Well you shouldn’t worry so much. It’s in God’s hands.”
I smile and reply, “Thank you, that’s true. You’re right. Pray for me.”
But honestly, what I sometimes want to shout is, “That’s easy for you to say!”

So how do we trust God in situations that continue day after day, year after year? It’s real. It’s in our face every morning when we rise and every night when we lay down. How do we find peace and contentment in this place? Can I ever reach a place of total surrender here? Can I ever mature enough in God to never feel this anxiety again, even when nothing has changed? Can I get through a day without having to lay it down at  Jesus’ feet again and again? Today. Tomorrow. And the next day. Or the one after that.

I don’t know. I want to. Worry wears me out. It’s exhausting.

Jesus said not to worry about tomorrow (Matthew 6:34) but in context, He was talking about material goods needed for life: food, drink and clothes. He wasn’t talking about my son. Apostle Paul also wrote in Philippians 4:12 that he had “learned the secret of being content in every situation” but also related this to material needs; hunger, abundance and lack. He wasn’t talking about Jon either.

So I look at these:

“Cast your cares on the Lord and He will sustain you..” Psalm 55:22.

“Don’t worry about anything, instead pray about everything.” (Apostle Paul) Philippians 4:6.

“..Cast all your anxiety on Him (Jesus) because He cares for you” 1 Peter 5:6-8.

“Come to Me (Jesus) all who are weary and burdened, and I will give you rest” Matthew 11:28.

“Peace I leave with you; My peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid” (Jesus) John 14:27.

I read these promises and realize this worry free existence we hope for, may NOT be a ‘I’ve finally arrived’ deal. I wonder if we ever reach the pinnacle of ability to sail through a trouble filled earth life without angst. As believers in an all powerful and involved-in-life God, maybe we do ourselves and others a disservice when we expect to reach a super spiritual level of never worrying about anything, ever again, this side of Heaven.

We read our Bibles and cliché these scriptures into meaninglessness, beating ourselves up for failing and feeling sub-standard for not measuring up.

Could it be these promises aren’t about removing worry from life permanently, but instructions for surrendering it daily? If “faith is the substance of things hoped for and the evidence of things not yet seen,” (Hebrews 11:1) then everyday I need to lay what I hope for at His feet. Everyday while I wait ‘for what I have not yet seen’ I need His strength to battle the enemies of worry, doubt and fear.

Everyday I pray.
Everyday I cast my anxiety on Him.
Everyday I come to Him for peace and rest.
Everyday I run to Him with my problems.
Everyday I choose to trust Him.
Everyday I believe He loves me.
Everyday I lay my questions, concerns, fears and worries before Him.
Everyday I surrender Jon, his future and mine, back to Him.

Today. Tomorrow. And the next day. And the one after that.

The better question to ask is this: “Can trouble or problems or persecution separate us from His love?” Romans 8:35

When I remember I’m loved, it’s easier to let go.
When I remember I’m loved, I worry less.
When I remember I’m loved, I breathe deeper.
When I remember I’m loved, I surrender completely.

“But in all these troubles we have complete victory through God, who has shown His love for us. Yes, I am sure that nothing can separate us from God’s love..” Romans 8:38.

In my daily surrender, God’s love overtakes my worry. When His love is always on my mind, His love always wins.

“..nothing in the whole created world—will ever be able to separate us from the love God has shown us in Christ Jesus our Lord” Romans 8:39.

Nothing. Will ever!

Not Today. Tomorrow. And the next day. Or the one after that. Hallelujah!

The God Who Sees

tile-floorsI was on my hands and knees scrubbing the tile floor around the toilet for the fourth time in a week. Those of you who live with boys know they sometimes miss. Jon is not a boy. He’s a man. And he still misses, way too often for my liking.

As I applied bleach to the grout again, I sighed and breathed out loud, “I hope I can still get down here and do this when I’m 80,” and felt a sudden hopelessness roll over me.

Then I heard a still small voice in the depths of my soul.

“I see you.”

My Bible reading that morning had brought me to the story of Hagar. Hagar was the slave of Sarai, Abram’s wife, obtained in one of their detour trips to Egypt. Hagar came from a culture that worshiped multiple gods. The Egyptians had a god for everything, so Abraham’s god, on her list of imaginative deities, was probably added only to appease the old folks.

Hagar had no rights. She was a nobody. Her duty in life was to fulfill the wishes of another, and when barren Sarai grew tired of waiting for the son God had promised Abram, she did what was a common practice of their culture. Sarai sent Abram to sleep with her slave to claim a son through Hagar. Hagar was forced to become a surrogate mom.

Genesis 16:1-3 “Sarai, Abram’s wife, had no children, but she had a slave girl from Egypt named Hagar. Sarai said to Abram, “Look, the Lord has not allowed me to have children, so have sexual relations with my slave girl. If she has a child, maybe I can have my own family through her.” Abram did what Sarai said.”

When Hagar became pregnant she realized she now had an advantage over Sarai. Hagar got herself an attitude and who could blame her, really? What’s Sarai going to do to her now that she’s carrying Abram’s child? Someone who’s had no control over her own destiny finally had an edge. Eventually the relationship between the two women became so intolerable, Hagar ran away.

Genesis 6:7-12 finds Hagar beside a spring of water in the desert having a conversation with an angel of God. She was told to go back home and continue to serve Sarai. But God promised Hagar her son, would become a great nation also. He gave her hope.

Not one of Egypt’s gods had ever spoken to her. Not one of them cared enough to show up and reassure a despairing slave girl. But Abram’s God did. And she was amazed.

This God knew who she was. Where she was. And what she needed. This God had eyes to see her and ears to hear her. This God cared!

Then, “the slave girl gave a name to the Lord who spoke to her: “You are ‘God who sees me,’” because she said to herself, “Have I really seen God who sees me?” Genesis 6:13

I realized that day on the floor that God sees me. He said as much.  And every time I get on the floor to scrub again, I am reassured He is pleased. What we determine to be small, insignificant, unseen and even annoying, matters greatly to God.

God sees you driving to work again, that counter you wiped, the laundry washed and folded, the dishwasher you load, the toilet scrubbed, another diaper changed, the gas tank you just filled and each time you help lift that person in and out of his wheelchair.

He sees the smile you brought to someone, the hug you gave, the ride you offered, the meal you cooked.

He sees how tired, desperate and broken you are.

It matters to Him. The unseen is important to Him. That thing done when no one watches. The mundane. The exhausting. The unappreciated. The irritating.

He sees it all and He knows.

Because my God is the God Who Sees!

And He’s your God too.

 

 

O Me Of Little Faith

mustard-seedI awoke at 3:42 AM in a heart racing panic and find myself at this place more often than I care to admit. It weighs heavy in the back of my mind, no matter how I try to push it away, the unknown haunts me. What will become of my son when we are no longer here? With the passing of every year, every birthday, his and mine, the question looms larger.

So I guess it’s confession time. It’s time for me to admit, to say it out loud; I don’t trust God in this. My re-occurring fear and worry prove it. I’m convinced no one will take care of him as well as I do, after all I Am Mom and have invested most of my life here. Other than Mike, who else will care enough to do that? I don’t know and the not knowing eats at me, plagues me and some days, consumes me.

Trusting God with a child is a tall order for any parent.  We are so hands on, heart invested, all in, with our kids and it’s easy to default back to a place of worry. But a child, who needs continual, life time supervision and assistance, elevates investment levels to exponential heights. So often I feel like the dad who brought his son to Jesus and cried out, “Lord, I believe, help my unbelief!” Maybe Jesus understands this parental desperation more than we know. He healed the boy in spite of dad’s wavering faith. And that gives me hope.

I’ve thought a lot about faith. What is it? How does it work? What should it look like in my life? Honest questions from a girl who grew up in a church culture equating struggle, disaster, illness, and tragedy with a condemning lack of faith; feeling failure and shame whenever my sunshine, lollipops and rainbow life disappeared behind onimous black clouds for a season. Understanding what it means to really trust God has been a huge re-learning process for me.

I’ve seen His unlimited goodness and faithfulness through the years, in both the easy and hard places of my life,  but realize I’m still lacking when it comes to radically abandoned trust. I’ve also lived long enough in my Heavenly Father’s amazing grace to understand we are always in process. Every day and every situation brings new opportunities for my faith to rise to higher levels.

An infant isn’t a full grown adult one week, one month or even a year after he is born. He grows incrementally day after day, over the span of many years. And we don’t condemn him for it. A twenty year old will not have the wisdom and experience of a seventy year old. Full maturity comes with time and age. We know instinctively this is the natural order of things, yet we Christ followers can beat ourselves and others up when we are not spiritual giants overnight.

Wayne Jacobsen (thegodjourney.com) put it like this: “I like the process of God winning us to trust. It’s not that we should trust Him or have to act like we trust Him even where we don’t. God wins us…I think life puts us in different points of extremity..but those opportunities when He says, “OK, we’re going to go deeper here, you’re going to get to learn to trust Me more”…I think all of my days I’m still going to find myself in places going, “OK, my trust doesn’t extend here yet, but God let it.” Maybe that’s the Author and Finisher of our faith, He’s going to grow it into a reality…the faith I live in today was not mine to produce but [grew as] I cooperated with Him.”

When Jesus calls out his followers with, “Oh, you of little faith,” we see it as a negative, a criticism, a scolding, but maybe it was more of a reminder than a rebuke.

After all, He said we only need faith the size of a mustard seed to throw a mountain into the sea (Matthew 17:20). A mustard seed is slightly larger than a grain of sand. That’s tiny!  Could He be telling us we don’t need as much as we think, we just need to exercise what we already have and watch it produce? After all He does the work, the miracle, the impossible. We just do the believing.

There’s a tension, a balance, between planning for the future and worrying over it and our manual for living, the Bible, addresses both. Proverbs 6:6-8 tells us to consider the ant who stores up and plans for the days ahead. Jesus tells us to consider the lilies who don’t fret or toil but are clothed in beauty by the Provider of all things (Luke 2:27-40).

While we plan as much as possible for Jon’s future, we must trust God with the rest. We do our part and believe He will do His, because He always has. Today, I absorb what Apostle Paul stated in Philippians 4:6-7, into my heart, mind and spirit, “Never worry about anything. But in every situation let God know what you need in prayers and requests while giving thanks. Then God’s peace, which goes beyond anything we can imagine, will guard your thoughts and emotions through Christ.”

So Lord, today, I give Jon and his future back to You. Once again, I lay him at your feet and     place him in Your capable hands, knowing You have a good plan already in mind for him. I thank You for it, even in my inability to see or control it. I may need to do this again tomorrow and the next day and the day after that, Father, but I offer my mustard seed faith to you, thankful for Your patience while it grows into larger trust I have yet to obtain.

Lord, I believe. Please touch those places in me where I don’t believe, those areas filled with doubt, worry and fear. I give them, along with my son, to You and thank You for never giving up on me but continuously calling me into Your amazing faith, trust and peace.

Today I choose I choose Faith.

Today I choose Trust.

Today I choose You!

“Never be afraid to trust an unknown future to a known God.” ~Corrie Ten Boom

Romans 15:13 “May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”

Proverbs 6:6-8 “Go to the ant, you sluggard; consider its ways and be wise! It has no commander, no overseer or ruler, yet it stores its provisions in summer and gathers its food at harvest.”

Luke 12:27 “Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these.”

Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”