Category Archives: Special Life

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.”

On Whose Lives Matter

Jon SuaveThe topic of lives that matter has been at the forefront of news lately, so I might as well add another group to the fray, one that receives little to no headlines, attention or protests.

In 2013, Robert Saylor, a man with Down syndrome died of asphyxiation after three off duty policemen moonlighting as security guards, restrained him to the floor in handcuffs when he refused to leave a movie theater. His caregiver’s pleas for understanding were apparently disregarded when Robert wanted to see the movie again.

Last week, Arnaldo Rios Soto, a man with autism, watched police shoot his caregiver on a Miami street. Arnaldo had wandered from his group home carrying a favorite metal toy truck in his hand. Someone called the police when they saw Arnoldo, describing him as a man with a gun, acting erratically. His caregiver, Charles Kinsey, was trying to coax him out of the street to safety when police arrived. As Kinsey tried desperately to explain Arnaldo had autism and the object in his hand was a toy truck, an officer discharged his gun at Arnaldo shooting Kinsey instead.

Police officers have protocols to follow and tough judgment calls to make based on their best assessment of a situation and the developmentally disabled rarely fit the cooperation profile. During one of Jon’s wandering episodes he was handcuffed and held in the back of a police car when he failed to answer an officer’s questions or supply his name. To the untrained, the developmentally challenged can be perceived as dangerous and they experience more misunderstandings with police than any other population.*

This week in Tokyo, Japan, Satoshi Uematsu a former employee of a residential facility for the disabled, broke in during the night and stabbed nineteen sleeping people to death and wounded twenty five more. Earlier he had written a letter that stated, “all disabled should cease to exist,” and “the disabled can only create misery.”

The first people exterminated during Hitler’s ‘purify the race’ campaign were not Jews, but the disabled or feeble minded, as he chose to label them. Our Jon would have been the first to die, had we been alive in that decade. It seems no population is exempt from injustice and violence in a world where human hearts trade fear for discernment or choose evil over righteousness.

A recently released movie, “Me Before You,” based on the novel by the same name, is a fictional story of a handsome, athletic young man from a wealthy family who is spine injured in an accident and becomes a paraplegic. It’s meant to be a tear jerker romance, but, of course, I found myself watching this story through the filter of disability and its connection to the value of a human life. The final message of the movie was disappointing, (spoiler alert!) the life of a disabled person is not worth living so the young man travels to Switzerland to die by assisted suicide.

Significance is defined as the quality of being important, large enough to be noticed or have effect or influence, to be worthwhile, valued. Everyone longs to matter. WH Auden, a poet from the 1930’s wrote, “..for who can bear to feel himself forgotten.”

We celebrate celebrity, worship achievement, want to be a ‘somebody’ and leave our mark on the world; a bigger than life personal graffiti wall that boldly states “I was here!” Our culture glorifies importance based on many factors: success, fame, wealth and influence, to name a few.

Disability that achieves the earmarks of worldly success is glorified, but not all disabled persons contribute in ways others consider worthwhile. Does this make their lives less valuable? I don’t have answers to all the tough questions about disability in the world, but our answer to the question of value usually depends on our worldview.

This is mine: “God said, Let us make man in our image, after our likeness..” (Genesis 1:26) and “the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul” (Genesis 2:7).

If we believe God is the creator, author and beginning of all human existence, there can never be any doubt all lives matter. When Jesus told us to “love your neighbor as you love yourself” (Mark 12:3), He didn’t offer any exceptions, in fact He stated no other commandment was greater. He gave the example of two people groups embroiled in a cold racist war with one another in the parable of The Good Samaritan (Luke 10:25-37), to illustrate what this love looks like.

Violence is a heart issue and will never be resolved until these words of Jesus are understood in the heart of every person and become standard practice.

If we are breathing God’s air on this planet He made, His life is in us, regardless of race, color, gender, preference, ability and age; we are His precious treasure. What others see when they look at us, our outward appearance, is only the packaging for the treasure inside and the wrapping, as beautiful as it might be, is never valued over the gift it holds.

We are significant because God thought we were worth creating. He paid for our life with His, and extends nail scared hands to all humanity as proof of His investment in us and as a personal guarantee that we are top priority.

Jon matters. You matter. I matter. God said so.

And that should be good enough for all of us.

Psalm 139:14-16 “I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth; Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me, When as yet there was not one of them..”

Psalm 22:10 “ I was placed in your care from birth. From my mother’s womb you have been my God.”

*”Disabled people are four to ten times more likely to face violent crimes than the general population, including police violence, sexual assault, hate crime, bullying, robbery, and murder. According to the recent Ruderman report on media portrayal of police violence towards people with disabilities, at least one third to one half of all police violence cases covered by the media involves the disability community. ~ “#BlackDisabledLivesMatter vs #AllDisabledLivesMatter” by Pharaoh Inkabuss, blackautist.tumblr.com~

Swimming Through The Nevers

Our son, David, texted me from Wisconsin, where he, Clara and little grandson, Asa, were at Clara’s parents for the week with the rest of her siblings, their spouses and kids for a family gathering.

asa cousinsDavid’s text said Asa was meeting his many cousins for the first time.

Without much thought my reply was, “That’s fun, because he’ll never have any on this side.”

“Yeah, I’ve been thinking about that.” He responded.

It hadn’t hit me until this moment; David’s children will never have cousins from our side of the family.

It was another ‘never’ moment in our life with Jon and I was suddenly saddened with a loss I fought for several days.

Loss always brings varying levels of grief and comes in many forms, through death, rejection, betrayal, disappointment, regret, hijacked hope, disabled dreams or what could have been.

We swim in this deep ocean of life, joyfully splashing, serenely floating or treading water, when loss washes over us like an unexpected wave. We’re swept under by its powerful force, breathless and fearful, struggling to find air and a way to resurface.

I don’t know, maybe other parents of special needs kids do this better than me, but I still experience blindsided takeovers in my life with Jon. I’m buzzing along in our daily thing, trusting God, thankful for the blessings we have when it hits again, another huge wave, reminding me of more ‘nevers’.

You’d think after all these years I’d see it coming but they still catch me off guard. My heart sinks, panic and desperation threaten. I spit and sputter and cry out to God, once again, asking to be pulled from the depths of despondency.

And He does. He always does. He reminds me He understands my mother’s heart. He assures me He is there to bring me through. And He keeps His promises. When the wave subsides I rise again and get back to the good in life, looking on the bright side with a completely full, instead of half empty cup, counting my blessings instead of my lack.

Asa won’t have cousins here it’s true, but he will have grandparents who love him. And because he has Uncle Jon in his life he will grow, as did his father, to be kinder, gentler, more compassionate and more accepting of other’s differences. Our grandson will be shaped and influenced by the unique dynamic of our family in ways others cannot offer.

Each of us have opportunities to dwell on the can’t, the won’t and the never. Yours are probably different than mine but we all have them. It’s human to be pulled under the waves of despair at times but it’s NEVER okay to stay there.  Drowning is certainly an option, but not a good one.

Ecclesiastes 3:1, says there’s a season for everything, so we do our grieving, kicking and flailing, then grasp the hand God extends beneath the turbulent waters of living, resurface, breathe and move on.

“Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they will not overwhelm you..” Isaiah 43:1-2.

Here’s one ‘never’ I can rejoice in. There’s never a need to drown in despair! My God possesses perfect life guarding skills. He will always carry me back to solid ground.

 

Psalm 40:2 “He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along.”

Psalm 42:11 “Why are you in despair, O my soul? And why have you become disturbed within me? Hope in God, for I shall yet praise Him, the help of my countenance and my God.”

Ecclesiastes 3:1 “For everything there is a season, and a time for every purpose under heaven..”

Will the Jon Moms Please Stand Up

This year, as the calendar would have it, I experience Jon’s birthday and Mother’s Day just a few days apart.

Jon’s birthday never goes as (we) planned. We wanted to take him out, he didn’t want to go. We had cake, balloons and gifts ready at 11am, he stayed in his room until 7:30 pm. He wouldn’t let us sing “Happy Birthday” to him, he wanted to play “Bad Moon Rising” on YouTube instead (??!!).Jon 36 birthday

The candles had to burn all the way down to wax craters inside the top of the cake before he’d blow them out. Mike waited up until 11:30 for gift opening to commence and couldn’t last any longer. He went to bed and gifts were finally completed at 12:45 am, with me falling asleep on the sofa. Jon was just getting started.

He’s thirty-six now. I’m not really ‘raising’ him anymore. Those days are over and he sorta’ does what he wants around here. But I’m not really done parenting him either or maybe it’s more of an advisory enforcer role, reminding him to shower, shave, take his meds, not wander away and to quit hijacking kitchen utensils he doesn’t use and bills from the desk drawer, he’ll never pay.

I drag him to doctor and dentist appointments and talk him into getting a haircut whenever he starts getting the caveman look.

We’re caught in a weird time warp somewhere between unreasonable toddler, love-able kid,  ornery teenager and grumpy old man. It all depends on the day or maybe the hour. There’s no category for that I suppose.

Then I went to an awesome mother’s lunch yesterday and it got me wondering what Mom category I fit into. The mom with the most kids, the most grandkids, the most great-grands, the oldest, the youngest, the newest, the singles and the all-done-empty-nesters were acknowledged and asked to stand.

Jon Me IHOP 11-2015I was confused. I’m sorta’ that one, but not really. I’m half the other one but not sure if half counts. So I stayed seated. Not that it matters much. Standing or sitting, I’m still two guy’s mom and happy for it.

I realize Mother’s Day isn’t perfect for some of us. Some have loss, rebellion, prison, prodigal, estrangement, medically fragile and unusual when it comes to kids and some who want children never have them. Life throws reality at us and we mourn, cry, kick and scream for a while then get up and keep going.

God keeps us strong in all of it. We are HIS daughters, whether we have twenty kids or none, typical kids or not. He doesn’t categorize or compare. We are just loved, valued and precious to Him.

So here’s a shout out to all God’s daughters. Whatever earth bound category you fall into (or not) may you know He delights in YOU today.

YOU are the blessed of the Lord.

YOU are the Apple of His Eye.

And YOU are His favorite (after me of course :).

Happy Mother’s Day!

Psalm 115:14-15 “May the Lord continue to bless you and your children. You will be blessed by the Lord, the maker of heaven and earth.”

Psalm 17:8 “Keep me as the apple of your eye; hide me in the shadow of your wings.”

Zephaniah 3:17 “The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you..”

 

That Extra Chromosome. A Letter to Jon

Do you know, Jon, the majority of humans have forty six chromosomes in each cell of their body, a combination of twenty three from both their mother and father?

This mix of DNA creates a brand new and unique person. Also adding to the individuality of a new life, are the blended chromosomal characteristics of many previous generations.

Chromosomes are us! It’s miraculous when you think about it.

Then..Surprise! Once in a while, someone wins the extra chromosome lottery, for a grand total of forty seven.

Someone like you.chromosomes

There are some theories about where that extra chromosome comes from, but no one really knows. According to experts, it didn’t come from me or your father, because we each only have forty six. The greatest scientific minds have yet to figure out this random occurrence. They can’t explain it.

I’m certainly not scientific. I barely passed the brain twisting subjects of biology and chemistry in high school, so if the smart people don’t know, then there’s little hope of accurate theorizing from me. But I’ve wondered about that extra chromosome at times.

Did it fall, like a shooting star, from the sky and right into you? Was it something I ate? Did God put it there? Were you specifically chosen for the purpose of carrying that extra copy of chromosome number twenty one or was it just…umm…a glitch? How does a person end up with an add-on?

It’s rather mystifying, so I don’t think about it too much, because doing so ties my brain in knots. But occasionally I find myself wondering who, what, you would be without it.

You probably wouldn’t be living at home with us and by now would have a wife, kids, two cars, a mortgage and a dog. Believe me when I tell you, you’re not missing much not having bills to pay.

I think you’d still love music and movies, and be funny and sometimes grumpy. Maybe you’d still like quiet surrounding you, be a night owl, enjoy long evenings out and slow eating, savoring each bite of your food.

I bet you’d still be messy, a bit obsessive, and would write notes to the people you care about. You would still believe, “Everyone deserves a second chance.” And your smile would light up your eyes, a room, and this mother’s heart, just like it does now.

We have traveled a long way together, haven’t we? You, me and that extra. What a difference it’s made! It’s been a life changer, a guide and a teacher and we are not the same as we would have been without it.

I don’t pretend to understand that chromosome or how or why it chose you. Maybe it’s divine or just ‘fate’. I can’t say.

But it doesn’t matter, Jon, because you with your added chromosome are gloriously loved. And when it comes to love, chromosomes don’t count. We’re all on a level playing field.

“For God SO loved the world…that whosever..” (John 3:16)

The brightest mind on earth cannot begin to comprehend the how and why of this kind of love.

If every single chromosome, in every single cell, in every single ‘Whosever’ in the world, is SO incredibly, fantastically, marvelously loved by the Creator of it all, maybe the playing field isn’t as level as I think.

You must be extra loved.

At least that’s how I see it.

Lucky you!