Tag Archives: life with Jon

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?

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!

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..”

“You’re Welcome, Jon!”

Jon wanted to go out again yesterday. So I ran a few quick errands while he waited in the car, then drove to the library because he’d hinted at wanting to pick out some movies. But he wouldn’t get out of the car. Guess he’d changed his mind. Vanilla-Bean-Ice-Cream-5-mark

He wrote ‘ice crem’ on a scrap piece of paper he found, so I headed for Baskin Robbin/Dunkin Donuts. When he finally got out of the car he went into the Subway next door. He got a foot long club, three bags of chips, a soda and a milk.

We were there from 4:30-9:30pm. When he finished that he went next door for ice cream. We were there until they closed at 11pm. I bought him a cup of Munchkins to go. Then he stared longingly at the ice cream cakes. He wanted one.

“Not now, it’s time to go home, pleeeease! It’s late. I’m tired. They’re closing. I’ll get you one for Christmas,” I told him, trying to maintain some semblance of patience.

He flipped through the entire cake design book pointing at the ones he liked; a Valentines Day cake, Birthday cake, white with pink roses cake, everything but Christmas.

By the time Jon got in the car then back out of it at home, it was 12:15am. I set his Munchkins on the kitchen island and proceeded to shut off lights, put Cola Kitty in the garage and lock down the house for the night.

He walked past me on the way to his room, Munchkins in hand, paused and said, “Thanks for the ride.”

I laughed.

Really Jon? I read an entire novel today, cover to cover, waiting around with you and that’s all you got?!

But it was his way of saying he had a good time.

Sometimes you just gotta’ see past your own need for acknowledgement, back pats, atta’ boys and Oscar awards and be grateful for whatever a person is able to give.

“You’re Welcome, Jon.” :)

My Gnat Confession

scary-gnatCleaning Jon’s room makes me mad! I’m confessing, putting it out here for all to read.

Every time I clean his room I battle a huge bad attitude. One way to deal with my anger has been to give it a name, “The Landfill”, and to play worship music on my iPad as loudly as possible while cleaning.

The past few days we’ve been seeing little gnat things flying around the house and couldn’t figure out where they were coming from. I do a quick check in Jon’s room every other day or so, making sure nothing’s growing or moving that shouldn’t be and about once a week, do a more thorough clean and sheet change.

Yesterday, I decided it was “Landfill” cleaning day. Mike was home so he helped me with the vacuuming and I was sorting through Jon’s usual piles of stuff on the floor and in crates making sure everything was kosher, when I found it buried under a pile of stuffed animals, a personal size Rubbermaid cooler that he had taken from a cabinet in the laundry room.

I opened it to see what was inside and a fleet of gnats flew up in my face. After they lifted off, I noticed the bottom of the cooler was alive and moving with hundreds of little gnat larva. They were living off some sort of food science experiment growing in there.

Horrified, I screamed, slammed the top shut, grabbed it, ran to the front door and heaved the cooler as hard as I could into the yard. I slammed the front door closed and jumped around in the foyer for a few minutes, totally grossed out, itching, shaking and hollering, trying to get hallucinatory gnats off of me.

Once that subsided, incredible anger took its place. I stomped into the kitchen and yelled at Jon for two minutes straight while he stared at me like I’d just lost my mind then I went back in his room, still freaking out, and tried to tell Mike I’d found the source of our gnat invasion.

“I can’t hear anything you’re saying. You’ve got the music so loud it sounds like a Pentecostal church service in here. Turn it down so I can hear you.” Mike hollered over the music.

I yelled back, “Listening to that music is the only way I get through cleaning this room so you best be glad it’s playing. I’m so mad right now if that music shuts off I’m gonna’ smack someone, and hard!”

We scrubbed the daylights out of Jon’s room for the next hour. I reluctantly searched every nook, cranny, box, crate, bag and pile in there and in his bathroom. I threw every thread of bedding and fabric I could find in the washing machine and got Jon in the shower. He even let me wash his hair, possible penance for what he’d just put me through, though I’ll never know for sure.

A few hours later, after I was sure everything was clean and back in order, I finally calmed down.

Last night I prayed. Though yesterday’s clean was more than unusual, I asked God to show me why I become so angry every time I clean Jon’s room.  God knows my heart better than I, and I want to understand what is triggering this anger inside of me.

The answer came in my prayer as I poured my heart out before my Heavenly Daddy.

“He’s thirty five, I shouldn’t have to still clean his room and it’s not fair that I do. We should be empty nesters now and only cleaning kid messes after grandchildren visit.”

As much as I love my son, cleaning his room is evidence that this didn’t turn out as I’d hoped and hope disappointed triggers many reactions and emotions. We often don’t recognize their source.

Like we didn’t know where the gnats were coming from, I didn’t know where my anger was coming from until I searched, until I asked.

Now that I know, God and I can start working on it together; one more area where grace can replace reaction, where a servant heart can replace selfishness.

Recognizing my shortcoming is the first step. Asking God to help me change is the second. He loves me too much to leave me as I am, yet He is gentle enough to expose and change my selfish heart one layer at a time, even if it takes a plague of gnats to motivate me.

Confession is good so I pray I’ll soon have a heart of joy and a song of praise at all times, even in “The Landfill”.

But. Please. Lord. (Shivverrrr) minus all creepy, crawly, cringy, critter things!

Psalm 139:23-24 “Search me, O God, and know my heart: try me, and know my thoughts: And see if there be any wicked way in me, and lead me in the way everlasting.”

Ephesians 4:26 “Be angry and sin not, don’t let the sun go down on your wrath or give place to the devil.”

James 5:16 “Confess your faults one to another, and pray one for another, that you may be healed.”

A Taste of Things to Come

Mike was in a large, busy place when Jon emerged from the crowd and walked toward him.Mike & Jon

“Hi Dad.”

“Hi Son.”

They embraced, then sat and chatted for a while, reminiscing about Jon’s childhood, “Do you remember the time when..?”

They laughed at the memories.

“Yes, I remember,” Jon said. “I remember everything you’ve ever done for me. Thank you.”

“Why did you do some of the things you did, Jon? We were always just trying to help you. Why were you stubborn and so mean to mom and me sometimes?

“I don’t know. I’m sorry.”

“It’s OK, I forgive you. I’ve always forgiven you, because I’ve always loved you.”

“I know Dad. I know.”

Mike woke up suddenly, filled with joy in having had a real conversation with his son, at last.

But it was only a dream.

In sleep, our heart can reveal what it secretly longs for; the subconscious can give us a taste, a tease, of how it could be. Waking up can bring disappointment or offer us hope. Depends on what we choose to believe.

I believe such a conversation will take place some day, maybe not here on Earth, but when we’re all together on the other side of this life.

There’s nothing quite as reassuring as the hope of Heaven, where all things will be put right and all things will be made new.

Revelation 21:4-5 “and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.” And He who sits on the throne said, “Behold, I am making all things new.” And He said, “Write, for these words are faithful and true.”…

The Chasm Between My Norms

chasmI 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.