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.

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“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? 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. 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!

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Jon 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?

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I 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. ??

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Jon'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!

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The 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~

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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. David'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..”

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Cleaning 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."

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

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I opened my Facebook page this morning to pass along the exciting post our youngest son and his wife shared, announcing our first grandchild on the way (Yahoo!). As I typed a comment and hit the share button I noticed my post underneath, from last night, about being out with Jon and his roll of toilet paper that accompanied us to the pizza place. I usually don't give it much thought, then there are moments like this one, when the wide extremes of my life's norms, jump up and smack me right between the eyes. Webster's Dictionary defines normal as usual or ordinary; not strange. One child growing up, getting married and having his own children is pretty ordinary. The other child growing up and toting a roll of toilet paper to the pizza restaurant, standing in parking lots for thirty minutes before going inside a building, singing Disney songs to me at one thirty in the morning and the myriad of other unusual events that come with being Jon's mom, Mr. Webster wouldn't consider ordinary at all. As I scroll back through some of my older Facebook posts, I'm reminded that life with Jon is anything but ordinary and some of it seems downright strange, yet everything about him and this life we share with him has become normal for us. Occasionally, I'm sad, when I think of the usual milestones Jon's will never experience, but today the wide extreme depicted by those two Facebook posts made me laugh out loud. We live in a culture that is saying all experience, ideas and opinions must be either/or. And while it is true there are still absolute values, standards and morals, regardless of what culture thinks or says, my sons have placed me in a world that is both/and; the usual and the unusual, the ordinary and the strange, mixed together in a kaleidoscope of crazy wonder. Today, I smile, thinking of the unique joy found in living a life that is a pendulum, swinging from one extreme to the other. I'm perched on it, hanging on tight, mostly enjoying the ride, with no clue what tomorrow will bring Maybe ordinary is overrated.

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I drove halfway up the driveway before noticing Jon didn’t have his seat belt on, so I stopped the car and put it in park. “Please put your seat belt on, Jon.” He glared at the floor and snarled, “Leave me alone!” “You want to be left alone? Ok then.” I put the car in reverse and backed it up to the garage, where we’d just come from. “You want to be left alone? Then get out of the car right now and go back in the house.” I stared at him. He stared at the floor. We sat in silence for a minute. “You either get your seat belt on and loose the attitude or get out of this car. I’m going out to have a nice time and I don’t need any grumpys coming along to wreck it.” I said firmly. The scowl on my son’s face relaxed and he reached for the seat belt and slowly clicked it in place. I thanked him and off we went. On the way to our destination, I decided to remind him why seat belts are not an option. I began to explain in simple language I knew he understood, that wearing one is the law and how they save lives in case of an accident. As I was talking he reached out and turned the radio volume up. “So you don’t want to hear what you need to know, is that it, Jon?” I reached over and turned the radio down. “You don’t want me to talk? Well, I won’t quit talking ‘till I’m dead. So you might as well get used to it.” He reached over to turn the radio back up but not before I heard him mutter, “Hope that hurries up.” I desperately tried not to laugh. Something so hurtful can be hilarious coming from Jon. He doesn’t talk much but he sure doesn’t pussy foot around about how he feels. At thirty five, when confronted with his inappropriate behavior, he’s often like a moody, bad attitude teenager who forgot to grow up. I glanced at him as I drove and answered lightly, “Because you just said that, God is now going to make sure I live forever.” A barely-there smile crossed his lips and he turned to look out the window so I wouldn’t see it. This is what I know. Sometimes, people I care about say words that are less than loving. Get over it! Sometimes, people I love are hurtful. Get over it! Sometimes those I try to help, lash back. Get over it! Sometimes those I most want love, acceptance and approval from, disappoint. Get over it! If Jesus, who was nailed to a tree, and in the excruciating pain and suffering of his final breath could declare, “Father forgive them, they don’t know what they’re doing,” for those who hung Him there, I have no right to hold an offense against those who do less to me. I’m learning from my Savior and my son how to get over it! Getting over offense is a choice we constantly make. Everyday and in all situations. Will I hold on to the hurt and add it to my growing list of offenses? Will I choose bitterness and bondage or forgiveness and freedom? Will I choose to stop taking every word, action and reaction personally? Will I choose to stop being overly sensitive. Will I choose to let go? When I pray for strength I don’t have, God’s grace meets me at the point of my choice. I then see others through His eyes and with His heart. Broken. Bruised. Damaged. Valuable. Forgiven. Deserving of love. Worthy of redemption. Just like me. So. Get. Over. It! “The first to apologize is the bravest. The first to forgive is the strongest. The first to forget is the happiest.” ~Unknown~ Matthew 18:²¹ Peter came up to the Lord and asked, “How many times should I forgive someone who does something wrong to me? Is seven times enough?”²² Jesus answered: Not just seven times, but seventy-seven times! Colossians 3:13 Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. Ephesians 4:31-32 Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.            

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It's July 4th. Independence Day. The great American holiday. People are celebrating the founding of our nation by going to the park, the lake, the beach, to a cookout with friends, a get together with family, or to a fireworks display. Before or after a holiday the common question is, "What are you doing/did you do for the holiday?" My answer is always the same. "Depends on Jon." or, "Stayed home with Jon." We're often invited to something, somewhere by someone on these special occasions. It's not that friends purposely leave us out. "Oh just bring Jon with you," they say. And it's not that we don't want to go, we just never make it. Jon doesn't care about being on time or if it's July 4^th. He doesn't like crowds or fireworks. Last night, as the neighbors set fireworks off all around us, he stayed in his room yelling, "Shut Up!" over and over again at the outdoors. So others go and we stay home, learning how to celebrate without joining the masses of those 'going' and 'doing'. Because of this, I appreciate the true meaning of holidays in ways I never use to. Limits force what is taken for granted, to a place of greater meaning. Today has been a day of simplicity. I've looked up some 'reminding myself' history on the founding of our nation and listened to several renditions of "The Star Spangled Banner" on YouTube. We fertilized and watered all our plants then, surrounded by their colorful beauty, cooled off by floating in the pool for a while, We broke away from our mostly plant food eating plan to celebrate in proper, God Bless the USA, style. Mike went to the store to look for no nitrate, no msg, no hormone, all beef hot dogs (hot dogs and rolls taste so much better when you hardly ever eat them!) and devoured them with corn on the cob and watermelon. Americans are often bored and dissatisfied unless something monumental is going on. I know. I was one of those. Once. Going. Always going. Doing. Always doing. Restless. Wanting. Miserable. Be careful of a mindset that says we must constantly do huge, exciting things to enjoy life. It's not true. Don’t fall for the lie. Most of us have a lot of what we want and everything we need, so be thankful in the still and overlooked moments and, in spite of our troubles and problems, the blessing of living in the greatest nation on planet Earth. If you're out somewhere celebrating our American Independence today, enjoy. But don't forget to take time to remember what you're celebrating. And don't forget to explain it to your children so they can develop a sense of significance and appreciation for the day. If the meaning behind this day is important to you it will be important to them as well. The gift of freedom should never be undervalued nor should learning the art of contentment in going or staying, being or doing, having or wanting. Don’t live out of the constant dissatisfaction of What Is Not. Instead discover the joy and fulfillment of living in What Is. Right here. And right now.          

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Jon desperately needed a shower and shave. When I went in his room to vacuum and change his sheets, I took his iPad and told him he could have it back after he cleaned himself up. "Why don't you do that while I clean in here," I said with a smile, "then everything about you will be clean and shiny today." He scowled at me and left the room. I busied myself for the next hour picking up a variety of things from the floor: sticks, strings, marbles, batteries, dice and pens, throwing away piles of old paper he'd collected and organizing his DVD and VHS collection back on shelves. When I went to check on him he was in our bathroom. I'm never thrilled about Jon in the master bath. He gets into all our stuff when he's in there, but it's the only bathroom in the house with a tub so we allow it from time to time. Later that evening I noticed Mike's electric shaver was missing along with my pearl necklace. I knew Jon had used the shaver since he emerged from our room with his caveman beard missing. We looked in all the places he might have laid it down and didn't find it so I knocked on his door. "Jon, Dad's shaver is missing and so is my pearl necklace. If you have them would you please set them outside your door? Dad needs his shaver before he leaves for work in the morning. I was going to give back your iPad but we need those things returned first" He frowned, glared at the floor and when I left the room, threw a small object at the back of the door to emphasize his disapproval of my decision. In the morning the shaver and the necklace were lying on the hall carpet in front of his door. I thanked him and returned his iPad. Negotiating with Jon has become a survival skill I have learned over the years. He is slow and often resistant to respond to everything, including directives. The more he's pushed, the further he retreats, so I need to remain firm, calm and wait him out. When caring for someone long term, who needs help making good choices but doesn't want it, choosing which battles to engage is important for sanity's sake. Some aren't worth fighting and others are tough to resolve no matter what. Then there are those days I know I won't have the patience needed, so it's best to avoid conflict, if possible. Dealing with difficult people requires a good amount of tongue taming, self control and wisdom and all of us have plenty of opportunity to practice because we all have difficult people in our lives. How we respond to them is usually more about us then them. Because we are naturally selfish, anger is often the normal response. Our reaction is usually based, not on what will solve the problem, but how the other person is making us 'feel' at the moment. What we say at such times and just as important, how we say it, reveals who we really are. A response of great character is described in Proverbs 15:1-2 & 4, "A soft answer turns away wrath, but a harsh word stirs up anger. The tongue of the wise commends knowledge, but the mouths of fools pour out folly..a gentle tongue is a tree of life.." Jesus was a master at responding to others instead of reacting. He knew exactly what to say in every situation and confrontation. He also knew when to be quiet and slip away. (John 12:49 "For I have not spoken on My own, but the Father Himself who sent Me has given Me a command as to what I should say and what I should speak.") Can we begin to see the difficult folks in our lives as teachers instead of problems, opportunity for personal growth instead of someone to conquer, and a challenge to build strength of character instead of an irritation to curse? It's certainly not easy to maintain this idea! As we set our heart on the intentional practice of responding to others with grace, gentle words and quiet confidence, we find God gives us what we need to be changed from the inside out. And as we pray for help to become less reactive to difficult situations and people, it becomes natural to keep a calmness and peace about us that others notice and desire. Then we will "Be ready at any time to give a quiet and reverent answer to any man who wants a reason for the hope that you have within you..with gentleness and respect" (I Peter 3:15).

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  Jon wanted to go out today. I asked him by question written on my cell phone note pad, if he'd like to go to the movies. He typed back, "I do yes sir." That was affirmative enough so we drove to the theater, arriving at 3:50. The movie started at 4:40. At 5:00 we were still sitting in the car. I don't understand Jon's thing about sitting in the car. Anytime we go anywhere he stays in the car. While people all around us drive in, hop out and are often back and leaving, he hasn't even opened a door yet. How do you make a flight or doctor's appointment on time when the guy won't get out of the car? When he was little I could unbuckle him, grab him and carry him, but he's thirty four now. He should be carrying me. After all those years of dealing with his goofiness, I'm tired. I knew it would take another half hour to get him in the building if he did get out of the car. By the time we bought tickets, popcorn and drinks the movie would be half over. Who wants to fork over a quarter of a week's paycheck to see half a movie? And anyway, I just didn't have the patience for it all today, so I started the car, drove through McDonald's to get him some dinner and came home. He was another half hour sitting in the car once it was in the driveway. I put the seat back and took a nap. We spent two and a half hours in the car today, going nowhere. Some things in life you can never understand.

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Jon was still awake and roaming the house when I went to bed late last night and the kitchen was a wreck this morning. He'd been in the pantry, cupboards and fridge, gathering food and dishes, setting them out on the island and table, opening jars, boxes and containers but not eating any of it. He was also dressed, with shoes on, ready to go somewhere. I quickly made breakfast and cleaned up the kitchen mess while he waited in the car. Then I sat with him in the car at the end of the driveway, close to an hour, waiting for him to give me a hint as to where he wanted to go. He finally handed me a Dunkin' Donuts coupon. I drove there and waited another hour, for him to get out of the car. When he finally did, he went inside Subway instead. There's so much about the way Jon functions I don't understand and these behaviors confine me to a life that looks much different than the norm. I sometimes feel I'm living inside closed walls, observing through a small window, the rest of the world rushing by. But I have slowly come to realize something profound. There is a freedom within these walls. Endless waiting brings freedom of time, quiet observation and contemplation. While others rush from one place to another, I wait. While others are frantic with long to do lists and schedules, I am excused. While others speed past the obvious and the hidden, I notice. I notice people rushing into restaurants, gulping down food and rushing out, taking no time for tasting, talking or relaxing. I notice the simple joy and happiness of a small boy swinging himself in half circles on a bicycle rack and how his expression shifts to sadness as his hurried mother grabs his arm and jerks him away. I notice the swagger of a young man as he walks through the parking lot, swirling keys around one finger, and am reminded of the strength and confidence of youth. I notice the old woman leaning on her cane, shuffling with slow steps and wonder about the life she has lived and if anyone bothers to benefit from the wisdom treasure within her. I notice the smiling young woman with no legs, entering the building in a wheelchair and don't stare at her but at the people staring at her, watching their reactions and reading their thoughts, visible as a billboard, on their faces. I notice the beautiful young woman with perfectly formed limbs intact, so lacking in confidence and longing for acceptance she dresses to draw attention to the intimate parts of herself and I pray for her. I notice the many shades of green in nearby trees and a quirky variety I don't recognize, comical in shape, like something from a Dr. Seuss book. I notice a tiny bird chirping in the tree in front of my car. I watch him and think of Jesus' words, that I am worth more to The Father than many sparrows. I lean my seat back and notice the intense blue of the sky and think about Heaven and my young friend, Rachel and her dreams. I listen to my daily Bible reading again and praise God for finding ways to speak encouragement to me. And I observe my son, his unusual and mysterious ways dictating my every day, and wonder why we don't measure with greater merit, those who march to a different drumbeat. Yes, there is liberty in this confinement and a freedom in all this slowness and waiting; one others, too busy rushing, wanting, scheming, planning and doing, rarely experience. Walls, it seems, keep me in but also keep the unnecessary out. Maybe I am more blessed than I know. Psalm 46:10 "Be still, and know that I am God.."

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Jon doesn't ask for anything for Christmas. He might circle a movie or toy in a Christmas sale flyer he finds hanging around the house occasionally, but if you ask him what he wants you won't get an answer. Here's a list of some gifts Jon received for Christmas this year: Two Tom and Jerry cartoon DVDs Two large print, word-find books A pink spiral notebook with a heart on the front (yeah, he likes pink) A McDonald's gift certificate A Wendy's gift certificate A dollar store gift certificate $20 worth of one dollar bills A box of Goldfish Crackers Two superhero puzzles A bar of money soap (a hint to take a shower Jon, please) A plastic toy grabbing tool thing Play money in a cash drawer A plastic police badge An orange plastic police vest Our Christmases with Jon aren't typical and are probably best described as slow, quiet and even a bit boring. But, with the passing of each year, I appreciate more and more, the gift he is to us; all the ways he keep me grounded, continuously reminding me of what really matters. Especially at Christmas. Sometimes I'm struck by the simplicity of his life. Sometimes I'm envious of it. Sometimes I'm sad for the classic milestones he will never experience. Most of the time I don't think about it at all. I just love him for who he is as he slowly opens, inspects, then carefully packs all his presents into a gift bag and carries them off to his room, adding them to the collection of items I'll need to clear off the floor next time I vacuum. You may not have a Jon, but I pray you have something, someone or a moment in this season to insert a slow down and reflection, on the most important treasures of life; a God who proved in the very event of Christmas, He accepts you with a love undeserved. And the people in your life, who stick around for the long haul, willingly to jump, head first if necessary, into every joy and sorrow. Merry Christmas and a blessed New Year to all!

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Jon's all time favorite movie is "Willy Wonka and the Chocolate Factory". Following close behind is "Home Alone". Our first adventure with "Home Alone" started in the mid-nineties when we rented a copy, sometime during Jon's early teen years. After watching the movie, with its many theft prevention traps, Jon took it upon himself to become our personal security system. We lived in a three story house in New Hampshire at the time and Mike had finished the basement as a playroom for the kids. In the back corner of the basement was a door we rarely used and it opened to stairs leading back up to ground level and into the garage. I went to the basement to throw in a load of laundry one day and realized I needed to go out to the garage for something. Rather than go back upstairs and out the door off the kitchen, I opened the basement door and experienced a brief moment of horror as I watched the kid’s blue plastic snow sled, loaded with paint cans, come hurdling toward me. I screamed and slammed the door shut just in time to hear the thump, crash, bang of full and half-full gallon cans pile up against it on the other side. Jon had placed the sled at the top of the stairs, lined it with the paint cans he'd found stored on shelves in the garage and tied the sled's rope to the basement door knob. Although a great idea if an intruder was already in the basement, it wasn't about to keep one out. But It was genius and imaginative really, with no thought of consequence to the people he lives with, which has always been one of Jon's great deficits. We went though a phase of trepidation and alertness, following this "Home Alone" viewing. We would find small toys lining the stairways, door knobs drenched in cooking oil, dish soap or shampoo, marbles and jacks on the floor in front of or behind closed doors, a half dozen eggs lined up on the garage door bracing; when the door went up eggs dropped to the floor or on the car. It was unnerving We let Jon watch the movie again when he was in his late twenties thinking he may have matured enough to distinguish its fantasy from reality. The booby traps reappeared immediately. The other night Jon's caregiver told me Jon was reciting "Home Alone" movie lines to her. When I came out to the kitchen the following morning, all the Christmas balls had been removed from the mini-tree adorning the corner of the breakfast nook and were lined up under the window. There’s shampoo or something slippery coating his bathroom doorknob again, a curtain rod blocking the entrance to his room like a swinging railroad crossing gate on one end and dresser drawers blocking the door to his room on the other end. Jon is not allowed to watch “Home Alone”. We don’t keep it in the house, but I'm thinking he's found segments of it on YouTube and this is not good news. While the movie may be a classic family Christmas comedy, it's off limits in our universe. If you like us even a little bit, please don’t give him a copy for Christmas. And if you stop by, be vigilant. You could very well be Jon’s next “Home Alone” victim.

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Caregiving is selfless work. Problem is, I'm not selfless. Not yet. I've grown through the years I've been doing this overtime parenting/caregiving thing, but honestly, I still have a long way to go. There are times when I still struggle and it seems too hard, too frustrating, too confining, too self sacrificing, too...much. But love moves me forward another day. I love my son and he needs me, whether he realizes it or not. So I rise in the morning with new mercies, new grace and make the most of both the imperfect and fantastic days we are blessed to have. Comparison is a luxury I can't afford. Neither can you. When we start comparing our life to others our thoughts can travel into dangerous territory. Some comparisons that might spiral me into dark places: They go on vacation. We can't. They get in their car and go whenever/wherever they want. I can't. Their thirty something year old kid is self sufficient. Mine isn't. They don't have to worry about what will happen to their grown child when they're no longer here. I do. There's plenty more of these, but you get the idea. I can't allow my mind to dwell on what they are doing. Such thinking has to be 'taken captive' (2 Corinthians 10:5) and serves no purpose but a downward spiral into self absorbed misery. What I can think on is God's goodness; His provision, grace, strength and blessing. I have a roof over my head. I'm not hungry. I'm in functioning health. I have support from a good husband, caregivers, church and friends; a decent car to drive when I can get away, a yard full of awesome plants to enjoy and a son who only needs constant reminders to attend to his own basic physical needs. And some times, even while being grumpy and stubborn, Jon’s quirky, humor makes me smile. Things to be thankful for outnumber the they comparisons and inconveniences, two to one. Jesus modeled selfless caregiving when He loved me enough to lay aside His Heavenly crown, take on flesh and come to an Earth originally created in perfection by Him and utterly broken by the degradation of His greatest creation - man. The Ultimate Caregiver came to serve and give His life away. He came to provide solutions for the desperation of humanity and offers the grace and strength I need to serve and care as He does. Faithfully Patiently Cheerfully Lovingly Sacrificially Selflessly I pray everyday, as I struggle to set ‘me’ aside again, for the benefit of my son and for others, that I will emulate Christ’s love in some small way. Because true love lives to serve. John 13:4...he [Jesus] got up from the meal, took off his outer clothing, and wrapped a towel around his waist. ⁵ After that, he poured water into a basin and began to wash his disciples’ feet, drying them with the towel that was wrapped around him.¹² When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. ¹³ “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. ¹⁴ Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. ¹⁵ I have set you an example that you should do as I have done for you. ¹⁶ Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him. ¹⁷ Now that you know these things, you will be blessed if you do them. (NIV) Matthew 20:26-28 "But whoever would be great among you must be your servant, and whoever would be first among you must be your slave, even as the Son of Man came not to be served but to serve, and to give his life as a ransom for many.” 1 Peter 5:7 ESV Casting all your anxieties on him, because he cares for you. Isaiah 41:10 ESV Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.  

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Jon was wandering around the kitchen before I left for Sunday morning service, taking stock of the plate I had prepared him and gathering more food from the pantry and fridge. When I came home, he was standing next to the dinette table just off the kitchen, and had methodically arranged all his food, dishes, silverware and some treasures from his room on and around a place mat. He'd barely eaten anything while I was gone which is typical for him. He has to have things arranged a certain way before he feels settled and his obsession will often stretch the process out for hours. The caregiver left and I started on lunch for Mike and I, warming up leftovers, putting a meal together in about fifteen minutes and setting our places on each side of Jon's. Our son rarely wants to sit and eat with us but it looked like he was about to settle down and I was hoping the three of us would have lunch together this day. The unspoken Jon rule is this: he can invade your space at any time, day or night but you take a risk invading his. Sometimes you are received, many times not (read more about that here). It's somewhat like the kings in the Old Testament who raised a scepter to show their approval if you entered their presence without being beckoned. If approval was not granted you could quickly be missing your head (see Esther 4:11-16). As Mike and I took our seats, blessed the food and began eating, the expression on Jon's face tuned into a scowl. We had invaded his space and he wasn't happy about it. "Come on Jon," I said, "sit down and eat with us. You did a great job setting your place here so let's have lunch together today." It wasn't happening. He began snatching his things off the table and moving them to the dining room, stomping back and forth from one table to the other until everything was moved. No amount of encouragement or pleading convinced him to stay. It's always his choice, never ours. I've learned so much about the father heart of God from Jon through the years. I know what it's like to feel rejected by your child and I also have a greater understanding of unconditional love. Jon has days when he barely acknowledges my presence. But regardless of how that makes me feel, I’m aware of his social limitations and I still love him. I will always be here for him, reaching, waiting; doing everything I can to give him the best possible life. There are many ways I want to show Jon how much I love him that he often doesn’t want or accept, so I have to meet him where he is and on his terms. As I read the Bible, I see so many illustrations of God's love for His people. His children. He longs to be with them. He wants to bless them, rescue them, and shower them with love and mercy. He comes into their situations over and over, making Himself available in their darkest hour; if they would only acknowledge Him and respond to His love. But they don’t. They turn away and break His heart. Again. And again. And again. So God waits. And He’s still waiting. Waiting for me and you to acknowledge Him. Waiting for us to respond to His love. Waiting for His kids to understand the Cross was the very best He could offer to exchange our wayward and distant heart for His limitless love. He longs to be with us and waits to be invited. “Behold, I stand at the door and knock. If anyone hears My voice and opens the door, I will come in to him and dine with him, and he with Me.” (Revelation 3:20) God will not force Himself into this relationship. It’s on my terms, not His. It’s all about my willingness to open the door, set a place at the table, pull out a chair and invite Him to sit with me. And it makes His heart very happy when I do. Just like it makes me happy when Jon decides he wants to be with me. Unconditional love hopes.

“Maybe today will be the day.”

Unconditional love never gives up.

“Not today? OK, then maybe tomorrow?”

Unconditional love reaches.

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

Unconditional love waits.

“I’ll still be here when you return.”

 

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I took Jonathan and his younger brother, David, to the mall one day to buy them some needed new clothes. As boys are prone to do, they had either worn out or outgrown everything they owned. We cruised endless clothing racks, the boys tagging along behind me. "What about these?" I kept asking them as I pushed hangers aside. They were obviously bored. Most males are not big fans of shopping unless they're looking at toys (adult males included), but to make sure items fit properly I wanted them to try things on. While I was focused on David and what he needed, Jon wandered off. I turned my back for a few minutes and he was gone. Again. "Where's your brother?" How often has David heard that question through the years? He was only seven or eight years old at the time but had already figured out he was his older brother's keeper. "I don't know." He sighed. I frantically turned in a complete circle hoping to catch a glimpse of Jon's head moving between displays and quickly shoved the pants draped over my arm back on a rack. "Let's go find him, I said, trying to keep my voice calm. "Hurry!" I immediately had visions of Jon wandering outdoors or out into the mall and some creep abducting him. We rushed through the boy's and men's department, calling his name. We checked fitting rooms and bathrooms and I was just beginning to panic when I noticed a crowd gathering over in the women's department. I grabbed David and steered him toward a pointing and laughing group of people. As we came closer I saw him. Jon was standing on a slightly raised circular platform with three female mannequins arrayed in short, tight dresses, the kind I couldn't wear anymore after giving birth to this child who was in a full lip lock with the center plastic lady. My son was kissing a mannequin in the middle of Sears Department Store. There are moments in parenting you'd prefer no one associate you with your child. This was one of those. I pushed my way through the crowd and turned to all the folks watching my kid make out with a mannequin. "Whose child is this?" I asked. They all looked at each other and shrugged. A woman over to my left sheepishly replied, "I don't know." I glared at them in disgust. "Well don't you think the responsible thing to do would be to find his parents. They're probably worried sick about him." Their fun interrupted, the crowd stared at me like they'd all just been sent to time out. "If no one else is willing to find this kid's mom then I will." I turned and marched up on the platform unwrapped Jon's arms from the mannequin, pulled his face off her fake, botoxy lips and yanked him out of that store so fast, no one had time to wonder if I might be abducting him. We sped through the parking lot to the car. "What about my new pants?" David shouted as he ran beside me. So now the pants were important all of a sudden? "Not today." I answered. "But you promised us a pretzel and an Orange Julius," he whined. "Not today." I growled. Years later, when David had been away at college a while, he called one day. We talked about his classes, what he was learning, his dorm adventures and his friends. "Yeah," he said, "I'm just not into the drama that goes on around here sometimes. My friends all think it's amazing that I hardly ever get mad or embarrassed about anything." "So why is that?" I asked him, interested to know myself. "I just tell them, I grew up with Jon."

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Jon is into cutting. But not in the same way or for the same reasons as other people. He cuts sleeves off shirts, toes off socks, slits in the center of our bath and dish towels, legs off his father’s pants and hem strips off sheets and bed skirts. Yesterday I took him to Dunkin Donuts/Baskin Robbins. He dressed in his finest: a sawed off sleeves, blue T-shirt with two belts tied around his waist, one made from a strip of a nice, fluffy over sized beach towel he repurposed and the other, a bright orange and white flowered cloth tie belt he took from my closet. When I'm tempted to be annoyed about this mysterious (and money wasting) behavior, I stop and remind myself to be thankful Jon's not harming himself. He has his own brand of creative fun going on in his very unusual and imaginative brain. And it's just stuff. I can always go to Walmart and buy more cheap, made-in-China towels and T-shirts for him to cut up. It's all replaceable. He isn't. Hanging out with Jon gives me an entirely different way to look at life and teaches me how to relax about little things that don't really matter. While Jon is cutting up stuff in our house, God is cutting away the Me that wants to rise up and demand life always go My way. God uses the people in our lives, yes; even those with annoying habits, to instruct us, change us and expose areas where we need to improve. There is nothing more liberating than letting go of the unrealistic expectations we have for others. Ask God to help you look at those frustrating, annoying folks around you through His eyes, with His heart. Then look inside yourself and let Him transform you so you can love freely, unconditionally and without barriers. The same way Jesus loves me and you. Philippians 2:3(ERV) “In whatever you do, don’t let selfishness or pride be your guide. Be humble, and honor others more than yourselves” Proverbs 27:17(NIV) “As iron sharpens iron, so one person sharpens another.”  

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Occasionally I'm asked, "How's Jon doing?"

There are many answers I'd like to give. He just had his thirty fourth birthday and got promoted at work, gave us a new grandchild, celebrated his eleventh wedding anniversary, published a book, took a vacation to Aruba, is running for governor of Tennessee, bought a new car, took us out to dinner, is coming with his family to visit for a week.

You know, stuff like that.

Most of the time I don't know how to answer. So I just say, "He's fine. Just being Jon." There's always a lot more behind that reply than anyone knows.

What I could say is: He's hardly come out of his room for three days. I finally got him to take a shower and change his clothes. He went for a 'wander' down the street but I found him. I just rescheduled his doctor appointment for the fourth time because he won't go. I spent two hours picking up his 'obsessive' room again so I can vacuum.

Or if we're in one of his 'non-hermit' cycles I can say: He's come out of his room everyday this week with shoes on. That means he wants to go someplace. I dropped everything I'm doing to take him out because it's been over a week since he's left the house and I feel bad. We spent six hours in one restaurant yesterday, five hours in the barbershop today, two hours in a convenience store, an hour waiting for him to get out of the car while melting in ninety degree heat. He was in the garage all night rearranging the recyclables, eating frozen pizza from the extra fridge and trying to iron a frozen chicken pot pie.

Or on good mood/behavior days maybe this: He stood next to me for a half hour last night and sang Disney songs, while drumming on the ottoman with straws. He smiled when I said Hello today instead of frowning and turning his back to me. He actually sat and ate dinner with us on the patio. He picked a flower from my garden and gave it to me. He changed his clothes without being reminded ten times and was ready to go in two hours instead of four. He tried to write me a note and when I couldn't read it, he actually talked to me, even though it was only one or two words.

There's a zillion things I could say when asked the "How's Jon" question. I'm not always sure people really want or understand the answers. But that's OK. It's still important it's asked. It means Jon is not out of sight, out of mind. He is not totally forgotten. Others think of him, even though they rarely see him and that means something.

So keep asking. If I discern you're genuinely interested I might tell you the latest unusual thing he's doing. Or, depending on what's going on with him at the moment, I might be too tired or frustrated to explain so I’ll say, "He's fine. Just being Jon."

And I probably should add, "But thanks for asking. It really means a lot to me that you care enough to think of him too."

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Thirty four years ago today, you came quietly into this world uttering barely more than a squeak to announce your arrival. You were adorable, our tiny firstborn child.

We had chosen another name for you before you were born but when we met you for the first time somehow we knew you were a 'Jonathan', so this is what we called you. Later we discovered this name means 'God's gracious gift'.

Soon the doctor came with news. You were different. He told us you wouldn't be like other kids and would be delayed in growth and learning. I dreaded the sight of that doctor because his news was never good. His reports about you were all negatives, no positives.

But here's what the doctor never told me, what he couldn’t know:

•How your smile lights up my universe

•How mysterious, charming, funny, resilient, observant, smart and grumpy you can be

•How your every achievement feels like winning the lottery

•How seeing life though your eyes change my perspectives

•How you simplify my priorities and humble my heart

•How 'perfect' and 'normal' are ideas by which I measure my own unrealistic expectations

•How selfishness is continuously discarded from my life

•How patience, compassion and kindness must always be practiced

•How to let go, while still holding on to what matters

•How to love unconditionally

•How prayer is a life preserver

•How trust and reliance on God are essentials

The doctor never told me how profoundly your life would change mine.

I guess he didn't know, couldn't know because he never had the privilege of experiencing you as I have. He couldn't see the positives because he's never had the opportunity to live them.

Today is your birthday, and as we light the candles and celebrate; I now know that the real gift is you.

God's gift to quietly instruct, inform and adjust me into the person I am still becoming.

Happy Birthday, Jonathan Michael Connis!

I'm blessed to call you my son.

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“People with even the most severe disabilities have the right to make their own decisions, no matter if their choices are risky or ultimately turn out to be mistakes, a United Nations panel says in new guidelines to nations.”

Read about it here; another bureaucratic idea that looks great on paper (especially one with such vague language it can be interpreted a zillion ways) but won’t work in reality.

Here are a few reasons why:

1. I believe everyone should have freedom of choice and some developmentally disabled folks are quite capable of making good choices on their own. Guardianship is still an important safeguard for those who can not. Such a loose policy that attempts to place everyone in the same category is foolish if not dangerous.

If Jon was allowed to make all his own choices he would never take his meds, shower or change his clothes, get a haircut, go to the doctor or dentist. He would most likely wander off down the street never to be seen again.

2. Someone has to pay for those choices. Who? The UN? Government budgets, both federal and state are tight. Wait lists are long. “Nationally, almost 317,000 people remain on waiting lists for home and community-based services…based on data from 2012, the most recent year available.”

Even those who receive disability funding usually can’t afford costly housing and other expenses for their disabled family member. Money and services are limited depending on geography and families are often one income earners or struggling single parents because someone has to be at home for the caregiving.

3. Are all parents and caregivers devoted and loving? A small percentage may not be, but these loosely worded conventions can be a slippery slope that eventually steamroll families and caregivers who most love and best know those they care for.

Someone in a far away office, creating regulations about our children’s lives and ultimately our own lives doesn’t sit well with most. I can’t help but wonder who the ‘supporting decision makers’ would eventually be.

4. “Article 12 of the Convention affirms that all persons with disabilities have full legal capacity.” It's not clear if this translates to persons with limited mental function who commit a crime being tried as any other adult? Will no special consideration be afforded those with diminished understanding? I doubt anyone wants our over burdened prison system to become the new residential facility for the disabled who break the law.

The United States signed the United Nations Convention on the Rights of Persons with Disabilities, as did hundreds of other countries, but so far has been unsuccessful in ratifying it.

So many blanket statements and one-size-fits-all propositions exist in this treaty, I would hope Congress and The Senate would review it with common sense reservation and revision, demanding specific definition of terms and then consider if it needs to be ratified at all.

There’s certainly a great need for improvements in servicing our disabled population but shouldn’t it be done on state, local and national levels instead of by international regulation? For those of us who believe in the sovereignty of the United States, and all other nations, the answer should be clear.

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Apparently Jon wasn't tired after our day out for his haircut, shave, manicure and dinner at Woody's BBQ yesterday.

I left him at the restaurant with his caregiver and went back to pick him up after midweek church service. She said he didn't order until 8:15. Since the place closes at 9, he brought most of his dinner home, but must have decided it wasn't enough.

When I got up this morning, it looked like a bomb went off in my kitchen while I was sleeping.

All the lights were on. The peanut butter was out of the pantry partnered with a giant messy spatula and blobs of peanut butter goo on every counter surface. The jelly jar was next to the stove, smears and drips everywhere.

Toast had been made and because the butter dish was empty, Jonretrieved a stick from the fridge. It was melted to soup inside the upside down butter dish cover. I don't even want to know how he pulled that off.

He ate all but one piece of an entire angel food cake (reserved for today’s strawberry shortcake) and a brand new can of whip cream was sitting empty on the counter. The residue of whip cream, cake crumbs and several used forks took up residence in one of my baking pans.

Sparse leftover reminders of his take home BBQ dinner were piled up at the island counter in front of the bar stool where he must have sat. Dishes, kitchen utensils and silverware were removed from cupboards and drawers.

The kitchen looked like we'd had an army over for Thanksgiving Dinner so the first part of my morning was spent washing dishes, wiping down countertops and sweeping floors.

I took Jon for a physical last week and he's lost a few more pounds. He's a bit too skinny right now so I've been encouraging him to eat up.

Maybe this midnight kitchen raid is proof that he does listen when I speak. I'd like to think so.

Or maybe he just enjoys feeling independent once in a while, making a few of his own choices without my running commentary in his ears.

No annoying Me, yapping at him:

"Put the peanut butter away and the spatula in the sink, please."

"You got jelly all over the counter. Here, wipe that up."

"You can't eat the WHOLE Angel Food cake, Jon."

"I just bought that whip cream. Please save some for the shortcake."

Oh My Gosh, Jon! You can't soften the butter that way, it looks like soup!"

And the zillion other things I'd have to bite my tongue in half to NOT say if I was present.

Whatever his reasons were, I hope he had fun without me. I'm sure I had more fun sleeping than watching him create disaster in my kitchen.

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I'm convinced we idolize the wrong people in American society: movie stars, sports players, rock stars, country music singers, the rich and otherwise famous. Everyone wants to be them. Someone like Mary, the woman I met last night, not so much. Mary has been the around-the-clock caregiver of her younger sister for twenty eight years, since their parents passed away. Her sister has Down syndrome and is now sixty years old. Mary receives no acclaim, no ‘American Idol’ or ‘Emmy Award’, for her selfless act but she has just moved to the top of my personal hero list, for whatever that's worth. I lay awake last night doing the math. When Jon is sixty, if we're both still here, I'll be eighty five. The nightmare thought always lurking in the back of every parents mind is, who will love and care for my child after I'm gone. As I thought on this, the familiar feeling of panic and fear began to surface, so I did the only thing I know to do when I'm afraid, I started to pray. "Heavenly Father, pleasseeee let there be a Mary for my Jon when the time comes. I trust You with our future." God's Kingdom is so very upside down from mans’. God does not put great prominence on things we deem important. He celebrates the small and unseen. Jesus said if you give away a cup of cold water in His name you will be rewarded (Matthew 10:42). Imagine the award that is waiting for someone like Mary. One day God will host the ultimate Emmy Awards show of all time. I'm thinking Mary will be first in line. Luke 14:12-14 “He also said to the one who had invited Him, “When you give a lunch or a dinner, don’t invite your friends, your brothers, your relatives, or your rich neighbors, because they might invite you back, and you would be repaid. On the contrary, when you host a banquet, invite those who are poor, maimed, lame, or blind. And you will be blessed, because they cannot repay you; for you will be repaid at the resurrection of the righteous.” Luke 16:15 (CEV) “ But Jesus told them: You are always making yourselves look good, but God sees what is in your heart. The things that most people think are important are worthless as far as God is concerned.”

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A mom on a Facebook page for parents raising special needs children excitedly posted her child finally said his first word. I don't know what her son's diagnosis is but at almost five years old he has never spoken, until now. His first word wasn't the typical 'ma ma' or 'da da' but mom didn't care. He wanted Goldfish Crackers and when he said 'goldfish', it was the most beautiful sound her ears have ever heard. Another mom raved about her ten month old daughter who is finally able to sit up alone. Other parents might post that their ten year old autistic child is potty trained at last or how a child has taken first wobbly steps with leg braces. These parents are over-the-moon happy and as an online community of support, encouragement and cheerleaders, we celebrate each child's achievements with thumbs up Likes and comments into double and triple digits. Parenting a child with special needs means appreciating what others often take for granted. Every milestone, every accomplishment, no matter how small or when it comes, is a victory and blessing that brings with it incredible gratitude. (Read more about my recent experience with this here.) As the mom of a developmentally disabled adult son, many years of heightened observation and appreciation overlap into other elements of my everyday life. I find it easy to see the joy and beauty in little things others may miss; the song of a bird, the color of a flower, the pattern on a butterfly wing, the subtle difference in green layers of foliage, the fragrance of an orange blossom, the beauty of a sunset, the satisfaction of a good book, the rapture of incredible music, the tranquility in lingering over a scrumptious meal, the melty goodness of dark chocolate, the uniqueness of people I love, laughter with a friend and peace found in prayer. All of us are busy; working hard, paying bills, raising families, making decisions, solving problems, chasing fulfillment, living the purpose driven life, but sometimes we need to look up and around and notice the simple gifts God has given us to enjoy. How much do we miss in the rush to possess, conquer, do, do, do and go, go, go? Life is not about how fast we go but the moments we enjoy along the way. In the rush of the every day, stop and take a moment for simplicity. Become intentional about slowing down long enough to notice the magnificent details that are hidden in the rush of accomplishment. No one enjoys simplicity as much as my son and If Jon has taught me anything, it's to slow down, take a deep breath and "stop and smell the roses" as the saying goes. After all, a guy who can turn dinner at a restaurant into a six hour event might know more about enjoying the simple things in life than the rest of us. Being with him forces me to pause and sniff a few roses. And one thing I know about roses, they may be thorny, but they still smell beautiful! “Progress is man’s ability to complicate simplicity.” ~ Thor Heyerdahl "The ability to simplify means to eliminate the unnecessary so that the necessary may speak.” ~ Hans Hofmann Jeremiah 2:25 (The MSG) “Slow down. Take a deep breath. What’s the hurry? Why wear yourself out? Just what are you after anyway? But you say, ‘I can’t help it. I’m addicted to alien gods. I can’t quit.’ Psalm 39:5 "You have made my days a mere handbreadth; the span of my years is as nothing before you. Each man's life is but a breath."    

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"Why did the cow cross the road?" I asked. Jon's eyes momentarily glanced into mine, then he shrugged. I knew he wouldn't reply and continued to the punchline. "Because the chicken was on vacation." He grinned slowly at first, and as he thought about it began to chuckle. I love it when we connect, when Jon actually responds to me with something besides annoyance and frustration. I'm thrilled when my son emerges from his own world, interested in interacting. It happens so rarely that I try to drop whatever I'm doing and soak up the joy of the moment. Our communication would seem juvenile and insignificant to an outsider, Jon singing me a Disney song or repeating a phrase from a movie, but I know it's huge. Today, when he began to lose interest and turned to walk away, I tried to hang on to it a little longer. I started reading him jokes from a website. "Why do fish live in salt water? Because pepper water makes them sneeze." Got a smile from that one and also this one, "Where do sheep go on vacation? To the Baaaaahaaaaamaaas!" Then, "What do you a call a pig who knows Karate? A Pork Chop." Jon thought on that one for a few seconds and shook his head. He expelled a long hiss, sounding like, "Ghhhheee," and said to himself, "that's not funny," frowned, then turned away. Just like that. One joke, determined to be dumb, and it was all over. I tried reading more as he walked away but the connection was gone, just like a computer system that had suddenly shut down. For fifteen minutes, my son wanted to "talk" to me today. It might not seem like much, actually it's never enough. But it was the best fifteen minutes of my day.

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Normal.

What is it?

Are you? Am I? And who decides what the standard for normal is?

One dictionary definition describes normal as: conforming to a standard; usual, typical, or expected.

And Wikipedia describes it as: a lack of significant deviation from the average.

Don Piper, in his book 90 Minutes in Heaven, states: “Some things happen to us from which we never recover, and they disrupt the normalcy of our lives. That’s how life is. Human nature has a tendency to try to reconstruct old ways and pick up where we left off. If we’re wise, we won’t continue to go back to the way things were (we can’t anyway). We must instead forget the old standard and accept a ‘new normal.’”

I've contemplated the word 'normal' and the way humans like to measure themselves by it, since the unforgettable day our son Jonathan arrived.

There isn’t much about parenting any child that allows for normalcy. With a special needs child all bets are off! Normal is always being redefined.

There are so many ways our family life is not typical, especially now that Jon is an adult and still here with us; our 'normal' detours along an uncommon path providing us with many challenges, learning experiences and unusual blessings.

Culture, society and humanity in general, constantly attempt to fit us into a mold they call normal. A certain set of actions and behaviors that dictate how we are to look, dress, think, act, even live, yet the parameters for these shift like wind currents. What was considered normal yesterday isn't today and tomorrow it changes again.

My very wise husband defines 'normal' this way: one fool doing something and a whole bunch of other fools following until everyone thinks it's OK.

This protocol for fitting in exists everywhere, in education, corporations, political parties, sports and religious organizations, the movie and music industry, agents, publishers and business. There is no escaping the pressure of the world's attempt to fit us into its mold.

The human heart yearns and the spirit of man longs for normal, for a perfection that is unattainable in a sin cursed world, a world that was never meant to work properly without God at its core. So we define 'normal' as we see it, as it seems right to each of us, then we pretend we are (Proverbs 21:2).

The standard for "normal' was set at Creation. It was perfection. Everything, including us, was perfect. One wrong choice, an act of free will against God set the planet and everything on it in a downward spiral taking us farther away from the original standard with each generation.

God hasn’t called me or you to be status quo, ordinary or average, according to the world’s standard. We are pressed to constantly adjust, adapt and stretch to life’s challenges with a mental, emotional and spiritual fortitude that defies our own reason and relies entirely on His.

As God's special kids, we are called to be peculiar, non-conformed and transformed. Be in the world but not of it.

I suppose, in this regard, Jon has a head start on me.

One day God will reset the earth back to His original plan (Revelation 2:1-4). All will be right again and finally normal will be what it was always meant to be.

I Peter 2:9 "But you are a chosen generation, a royal priesthood, an holy nation, a peculiar people; that you should show forth the praises of him who hath called you out of darkness into his marvelous light."

Romans 12:2 "And don’t be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God."

*Don Piper with Cecil Murphey, “90 Minutes in Heaven,” (Grand Rapids, Michigan: Fleming H. Revell , 2004), pg. 137

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Jon demonstrated the true definition of tolerance a few days ago. After a haircut he wandered down the plaza to the sub shop. We ordered, took the front booth, closest to the door and settled in for a long evening. Several hours later a young couple, with a baby in a car seat, came in and sat in the booth behind us. Jon has a problem with babies. They cry, scream and are often loud even when they are happy, squealing as they test their vocal chords. High pitched baby sounds have always bothered him, a lot. As soon as the baby family sat down, Jon collected his sub, drink, two bags of chips and other items he had spread out on the table and moved to the table farthest away from baby, at the back of the building. He methodically organized his food on the table top and sat down with his back to us. I was chatting with a couple of friends who had shown up to keep me company and was explaining to them why he moved so suddenly, when one of them told me to turn around and look. Jon had gone to the back of the restaurant, picked up a wooden high chair and was carrying it to the baby's table. He set it down gently, nodded and smiled ever so slightly at the baby, then turned around and walked back to his table. He stayed there until the baby left and then came back up with us. In a society where the word, tolerance, has been redefined as accept me, approve me, love everything about me or you don't like me at all, Jon showed us that you don't have to love someone's behavior to treat them well. The true meaning of tolerance is displayed in kindness and grace being extended to people who annoy us, even those whose behavior we disagree with. Thanks Jon for the visual! Go here to read my other post on Tolerance Philippians 2:1-8 "Do nothing from rivalry or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus,"

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Jon doesn’t care what you or I think. He is not out to impress anyone. He doesn’t yearn for accolades or glory. The latest fashion trend does not factor into his wardrobe selection. If it’s too tight, too stiff or too much collar he won’t wear it. Give him his favorite well worn, slightly over-sized T shirts and shorts and he’s satisfied. Yet he doesn’t give a second thought to leaving the house with a beach towel wrapped around his shoulders as a cape, or wearing his karate jacket combined with a cowboy hat and fingerless gloves, or walking around with a piece of bark mulch sticking out of his hat (read about that here). Jon misses almost every cue for tact and poise and goes with how the moment moves him. Social graces and nuances are not on his resume. Every now and then he might surprise you with acknowledgement, a smile or even a handshake just to let you know you’re still on his radar screen. But if he’s not in the mood to be bothered with you, he will freeze in place. If he doesn’t like something you say to him, he will scowl. Jon can take thirty minutes or more to order at a restaurant, with the server returning to the table, nervously banging her pencil against her order pad and asking for the thirteenth time, “Is he ready now?” Are you kidding? He hasn’t even opened the menu yet and he’s not troubled in the least by her impatience. He can be so slow in a store checkout line people pile up behind us like kids in a school lunch line. You can hear them at your back, shuffling and sighing. It might embarrass you or give you an anxiety attack. But Jon has no concern for you or them. You can’t hang out with Jon all the time and fret over what people think. You just have to get over it. Approval from others is a prison Jon doesn’t visit or live in. The truth is, when you’re with Jon, you have to get over what YOU think. Your opinion ceases to exist. It becomes a mute point. Being with Jon means you’ve just signed up for approval addiction rehabilitation! Obviously, my son is on the extreme end of people skills deficiency, but he has taught me much about freedom from the grip of other’s thoughts and opinions. Most of the time they don’t matter. Jesus had his hands full with the approval addicts of his day. The religious leaders and lawyers, the Pharisees and Sadducees, were obsessed with approval. They nominated themselves as the politically correct thought police of their culture and took it very seriously. Everything they said and did was for appearance sake and everyone who didn’t walk, talk and think like them we’re viewed with contempt. Matthew 21:26 and Matthew 21:45 (see below) reveal how much they feared public opinion and worried about what others said. The Pharisees major concern was for everyone to see their self imposed importance (Matthew 23:5) and was one of the reasons Jesus told his followers to stay away from them. Ultimately our approval comes from God and we should pass every opinion through the filter of His standard for our life. He doesn’t see us as others do; for “man looks on the outward appearance, but the Lord looks on the heart” (1 Samuel 16:7). When we’re tossed around by every idea, remark, criticism, viewpoint, trend or bit of advice we encounter, we become what everyone else thinks we should be instead of what God made us to be. Of course we need to be careful of an attitude that says, “I don’t care what you think, therefore, I don’t care about you,” but living life based solely on the praise and admiration of others is not living at all. I’ve come a long way from where I use to be, thanks to Jon, but I pray I can master the fine art of caring about others compassionately without caring what others think of me. There’s something incredibly liberating in that. Galatians 6:14 “I am going to boast about nothing but the Cross of our Master, Jesus Christ. Because of that Cross, I have been crucified in relation to the world, set free from the stifling atmosphere of pleasing others and fitting into the little patterns that they dictate.” (The Message) Ephesians 4:12-13 God’s goal is for us to become mature adults—to be fully grown, measured by the standard of the fullness of Christ. As a result, we aren’t supposed to be infants any longer who can be tossed and blown around by every wind that comes from teaching with deceitful scheming and the tricks people play to deliberately mislead others.” (Common English Bible) *Matthew 26:²³ Jesus entered the temple courts, and, while he was teaching, the chief priests and the elders of the people came to him. “By what authority are you doing these things?” they asked. “And who gave you this authority?”²⁴ Jesus replied, “I will also ask you one question. If you answer me, I will tell you by what authority I am doing these things. ²⁵ John’s baptism—where did it come from? Was it from heaven, or of human origin? ”They discussed it among themselves and said, “If we say, ‘From heaven,’ he will ask, ‘then why didn’t you believe him?’ ²⁶ But if we say, ‘Of human origin’—we are afraid of the people, for they all hold that John was a prophet.”²⁷ So they answered Jesus, “We don’t know.” *Matthew 26:⁴⁵ When the chief priests and the Pharisees heard Jesus’ parables, they knew he was talking about them. ⁴⁶ They looked for a way to arrest him, but they were afraid of the crowd because the people held that he was a prophet.”  

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As Jonathan gets older it seems he wants to go out less. But on this particular day, he manages to get himself dressed in something he hasn’t slept in the night before and decides to be a member of society at large. Mike and I wait in the car about twenty minutes while Jon gathers a paraphernalia of items he likes to bring along when he goes anyplace; odds and ends of sticks, string, old shoe laces tied together, toy swords, a glove for one hand, an old cell phone, used chop sticks or whatever strikes his mood for the day. He eventually gets in the car, but not until he stands next to it with the door open for several minutes allowing all the air conditioning to escape into the ninety three degree humidity. He slowly eases his behind inside and settles onto the seat. Now we are sweating. Another minute or two goes by until he shuts the door. I notice he has no shoes on, so to hurry things along, one of us goes back in the house to find them. At last everyone is in the car and a collective sigh of relief ensues. We are, however, not ready to leave the driveway just yet. Jon doesn’t talk much, not to us or anyone else (he will, however, talk to himself for hours on end), so he writes notes. His notes are similar to Egyptian hieroglyphics. He prints words like they must sound in his brain, which include some backward letters, missing vowels and consonants. He will start sentences in the center or at the extreme right edge of the paper and quickly run out of room. From there the words can go anywhere - above, below, even vertical and as they pile up and around each other, it becomes almost impossible to decipher their meaning. It takes a specialist trained in decoding ancient languages to figure out what his message means. We are working toward greater proficiency all the time. After struggling for about five minutes or more to translate his cryptic communication, we figure out that he wants steak and shrimp. No better place for that than Outback Steakhouse, especially since Mike is an avid steak lover. The seat belt is the next issue. We should refuse to leave until he puts it on but this can add another five to ten minutes to our wait time. By now we are over an hour into this dinner out and haven’t even left the house yet! As we head down the driveway and out of our neighborhood, I silently thank auto makers for indicator alarms in twenty first century cars. We know from experience that after the seat belt signal beeps at least ten times at thirty second intervals, Jon will comply with its demand. He is not a big fan of loud repetitive sounds. Finally we are on our way! Most people drive to their destination, park their car and get out of it immediately. I know this because I have lots of time to watch them do it. Most people are usually in a hurry to get where they are going but Jon is not most people. It takes him forever to get in the car on the leaving end and just as long to get out of it on the arriving end. His slower than turtle speed can be maddening if you’re on a schedule. We try to ignore time all together when out with him and think in terms of eternity. On this day, however, car exiting is going to be longer than usual, if that’s even possible. Mike pulls the car into a parking space near the restaurant door and informs me he is going inside to get us a table. “OK,” I say, “I’ll be in with Jon as soon as he get’s moving.” We both know what that means. No sense in everyone suffering through waiting for Jon. Sometimes Mike waits, sometimes I do. We attempt to be fair about it and take turns. The temperature inside the car begins a quick ascent back up to ninety. I sigh and lay my head on the seat back, watching people pull in, turn off their cars, jump out and disappear into the restaurant. I’m thinking, Wonder what that’s like? The elderly man with the walker is moving faster than us. Jon hasn’t budged an inch yet, has barely blinked. I talk to myself: Just be happy that you don’t have to cook dinner tonight, Diane. Stay calm, be thankful. The car is heating up so I open my door. Jon is finally rustling around and that’s a good sign, a start at least. He reaches down to the floor in front of him and up comes a long length of thick, black shoelaces knotted together, which he begins to tie high around his waist. After fumbling with that for a few minutes a piece of red nylon netting appears (used as a chair float when fitted over a swimming pool noodle). Jon throws the netting over his left shoulder and tucks the corners underneath his shoestring belt in front and back. Over the right shoulder goes a power chord unplugged from a piece of electronic equipment in his room. He tucks that under his belt too. Then he puts a bright orange visor on his head and a piece of stiff, bright red ribbon is pushed inside it just above his right ear. It’s protruding straight up like a singular antler over his head. Lastly, another piece of red ribbon is tied on his left ankle over top of his bleached white sock. I watch all this in increasing disbelief, as each weird item is added, thinking there is no way on earth I’m getting out of the car with him in that getup! After living with Jon all these years it takes a lot to embarrass me but I still have a miniscule thread of dignity left. At least twenty minutes has passed now and he’s ready to get out of the car. He does a final recheck on all his gear and reaches for the door handle. I abruptly pop the power lock button down. “Jon, there is no way you are going in there with me, looking like that. It’s not Halloween today you know.” Immediately his body stiffens and his face turns to the all familiar scowl which indicates he is not in agreement with my opinion. From there the power struggle begins. I spend the next twenty minutes attempting to talk him out of wearing his ‘costume’ into the Outback Steakhouse, going so far as removing some items off his person while he attempts to grab them and put them back on. We’ve been in the car close to forty minutes now and our skirmish isn’t over yet. I’m sweaty and hungry. My cell phone rings. It’s Mike. “Why is it taking so long for you guys to get in here? “He asks, “I’ve already ordered the appetizer.” Really? You’re asking me this question AND eating appetizer without me?! “It’s a long story,” I try to bury the irritation in my voice, “But if you want to come out here and see what he looks like you’ll know why. Hang tight, I’m hoping we’ll be in soon” I finally manage to talk Jon out of the shoulder wear, which I stuff in the back seat pocket, hoping for an out of sight out of mind moment, and decide if I ever want to eat we can live with everything else. The shoestring belt, the ankle ribbon and the orange visor with the ribbon planted in it are still intact. We get out of the car and I quietly slip up behind Jon, carefully removing his red ribbon ‘antler’ hoping he won’t notice. No such luck. He spins around and glares at me. “Sorry, Jon, but you look a little bit crazy with that thing sticking out of your head. You can wear it when we get back in the car.” I shove the ribbon in my pocket and the scowl returns to his face. Jon freezes momentarily and I can see the wheels whirring as he attempts to process what he’s going to do about me, this annoying mother who keeps messing up his wardrobe plan. At last he turns and starts walking along the front of the building. As he heads toward the door, he reaches down into the shrubs and snatches the longest piece of thick, red bark mulch he sees, returns to an upright position and triumphantly shoves it in his visor where the ribbon was, just above his right ear. Now I’m glaring at him! I throw my hands up in the air, “I surrender,” I say out loud to no one in particular and then to Jon, “Come on let’s go eat.” We eat dinner with the shoestring belt, ankle ribbon and bark mulch visor, but the story doesn’t really end here. It never does. What happens once we are actually inside the restaurant is a tale for another time. But let it go on record that on this particular day we leave our driveway around 4:30 pm and we arrive home around 10:30 pm. The only place we visit is the Outback Steakhouse, which is fifteen minutes from our house. A word of warning to anyone who might want to join us for an evening out, when we bring Jon along, better come in your own car!    

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A few years ago I realized that I was obsessing over Jon’s obsessions. Take his room for example. At first glance it looks like a yard sale or maybe a cleaner version of a landfill. I’ve noticed a pattern to his clutter; he puts the same items back on the floor in the same piles and in the same place. You can read about that here. Any time we go out, he first fills a bag (or bags) with little items: strings, sticks, old papers, napkins and small toys. Eventually, there are so many bags in the car I can’t find the back seat. I prefer my car looking clean and spacious instead of like a Sanford and Son road show. But I’ve decided that Jon feels better when his stuff is around him. So I let it slide, for a while. When I can’t stand it anymore, I carry everything back into the landfill - his room. Then we start all over again. When he showers, he lines all his supplies up very methodically, things he needs for bathing and things he doesn’t and you better not touch any of it. Eating is a repeat. Food is placed strategically around him and after all the fussing he can wait up to an hour before taking a bite, while he draws or writes on napkins. Some of his actions seem illogical and I don't pretend to understand. I’ve had to learn to overlook and accept much of his behavior for what it is. If I allowed his fixations to constantly frustrate and aggravate me, I’d be twitching in a corner by now. Time has proved that Jon’s not going to change, so I have to. There’s no point or value in my locking horns with his obsessiveness. It only escalates, adding stress, misery and tension to an already unconventional situation. Face it, some of the things we hang on to, whether they are opinions, beliefs, material goods, expectations of others or ourselves are not useful and in the long run don't matter much, if at all. "Don't sweat the small stuff" really applies here. It's the trivial, the little pebbles in the shoe, that can hinder. How much better is it to move around the petty obstacles and keep going? Not everything is urgent and some things aren't even important. Others are non-negotiable and so critical I need the grip and tenacity of a pit bull to hold them. When I'm tired, frustrated or discouraged it’s easy to let slip those things that should remain. Knowing when to hold on and when to let go requires wisdom, discernment, consistency and prayer. It also requires change. I must be willing to adjust in areas where I'm too rigid or passive, or at least examine these and determine their validity. Is this a battle I need to win? Is this an issue I should stand firm on? Sometimes the answer is yes. Very often it is no. In all areas of life, prioritizing and simplifying, helps me live effectively and peacefully with myself and others. And in doing so I discover, as time goes by that people, circumstances and inconvenience irritate me less. I’m certain I have my son to thank for some of that. Philippians 4:6-7 “Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Revelation 3:2 “Wake up, and strengthen what remains and is about to die, for I have not found your works complete in the sight of my God.”

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Once I processed and accepted the surprise and disappointment of Jon’s initial diagnosis, I determined to help him be the most amazing person who ever had Down syndrome.

I knew if I worked hard enough, fought long enough, my son would be The One to WOW the world. He would be almost ‘normal’ if not one hundred percent. He would have the life I imagined for him - acceptance, friends, a girlfriend (or maybe a wife!), his own apartment, a career and a car to drive to work.

He might not become a neurosurgeon or The President, but most ‘normal’ people weren’t, so I could live with that.

Working tirelessly from birth through high school and beyond, I fought for services in every available arena of mainstreaming and special education and was even instrumental in spearheading a few improvements.

We accessed infant early intervention, integrated preschool, behavior assessments, speech and occupational therapy, reading programs, Special Olympics and work training programs.

I never missed an IEP (Individual Education Plan) school meeting and even home schooled for several years, burning long hours into the night, researching new ways to help Jon excel at learning.

Helping my son hit a high level of ability became my project and I was obsessed.

My attempts to ‘fix him’ and fit him into the life my imagination had designed for him, often hindered my enjoying him as my child, especially in those early years. When my friend's toddlers said their first word, sat up, walked and potty trained on schedule and Jon didn’t, I was defeated and miserable.

Obviously I wasn’t doing enough and the mommy guilt was all encompassing.

Now he’s an adult and none of my imagined scenarios for Jon’s life have come to pass, even after all my years of worry and hard work. Of course, we never figured autism would be added to the equation, yet, there’s no apartment, car, career, girlfriend and few friends.

There’s mostly just me and Jon.

Somewhere in the mix of my many years of ‘Jon education’ and church ministry, dealing with all types of people, I figured something out - it’s not my job to fix people - especially if my “fixing” is more about what I want than what they want or actually need.

This has been a hard lesson to learn.

Only God knows what comprises the heart of a person. It’s His job to correct. Mine is to surrender to His work both in myself and others. While God is lovingly trying to align me, I’m so busy with my attempts to straighten everyone else out that I can’t begin to see my own need.

My responsibility is simply to love. If that love requires helping another improve in some way then so be it, but never should it be about someone fitting my perception of what that should look like or what I think they should become.

It’s not about my attempts to line everyone up around me to my liking. Enjoying people simply for who they are sets me free from seeing them as a project or burdening relationships with my selfish agenda.

Though I’m certain I have more to discover here, learning to love my son for exactly who he is, not who I hoped he'd be, and letting go of my foolish attempts to change and control others has been one of the most liberating experiences of my life.

I've been surprised by the realization that freedom can come in unforeseen and unexpected ways and letting go has brought more internal peace and joy than I ever thought possible.

Jon, what a wonderful teacher you are!

“Everyone thinks of changing the world, but no one thinks of changing himself.” ~ Leo Tolstoy

“How can you say to your brother, 'Let me take the speck out of your eye,' when all the time there is a plank in your own eye?” Matthew 7:4

“So then, each of us will give an account of himself to God.” Romans 14:12 NIV

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I started writing about our life with Jon approximately eight years ago

He finished school in 2002 and came home full time. Over the next few years he tried several full time and part time jobs but was continually 'let go'. “He doesn’t stay on task without constant supervision,” we were told. Then came the work centers and day programs, which he hated. The only thing we couldn't try was moving him out into supported living or residential placement. There wasn’t enough funding for that.

Having Jon at home worked out well for a while. We had plenty of help at first; our friends from Maine who wintered in the back house on our property in Kissimmee, Florida, another friend from New Hampshire who lived with us for a year, our youngest son who was always willing to be extra eyes and Mike, who was working from home at the time and was usually available to watch out for Jon if I needed to go out.

Then one by one the extras faded away. The friends from Maine, now in their golden years, had too many health problems to travel and my other friend moved back north when the cancer she'd been battling returned. David went away to college and a few years later Mike sold the business, took a position away from home and started leaving the house every morning.

Suddenly it was just me...and Jon.

At first, I tried taking him with me to the places I needed to go - shopping, the gym, to run errands - but his constant resistance clearly stated that he really didn’t want to do those things with me. Every outing attempt became a slow motion drama of frustration and tension between us.

For all Jon is and does that is amazing and wonderful, he is equally obstinate. I quickly realized that everything I needed or wanted to do away from home was now next to impossible

That was a difficult time for me. The adjustment of becoming a full time caregiver left me feeling trapped, resentful and alone. I was overwhelmed with how restricted my life had suddenly become and dealt with constant guilt for feeling that way. I cried, prayed and begged God for a solution.

Then I started to write. At the time, it was one way I could keep my sanity. I was desperate for my adult son, afraid for his future and discouraged about my own. Some of those early writings no one has ever read, they are SO honest and TOO vulnerable - my broken heart spilled out on paper.

Eventually I began to share some of the lighter pieces with friends and family. They loved them and encouraged me to write more and make them available to others. Social networking and inexpensive or free websites, and easy blogging for technology "dummies" like me, gave me a place to share my words with anyone who cares to read.

So here we are today. A few things have changed since then.

We moved closer to Mike's work so he's home more. We have caregivers that come in a few times a week to provide respite so I can go to church and out with my husband now and then.

But the biggest change is inside ME.

I have also come to understand that I can not want for someone, what they don’t want for themselves. Jon is content being home so I am learning to be content with him. I’m adjusting better to my ‘confinement’. I’ve discovered more about unconditional love, grace and self-less-ness in these years than I could ever experienced in a lifetime.

I confess to having days when it's hard, when I want to be selfish, when I want to do what I want, when that voice in my head tells me, "You deserve more, everyone else is coming and going as they please, but not you."

But as the Apostle Paul said in Philippians 4:11, “for I have learned to be content whatever the circumstances”. Learned is the key word here.

This contentment-in-all-things, isn't automatic. It's a process and I’m still learning.

My life is still scheduled around Jon and when I do take him out, it's always about him, not me.

And I still write…for me. I'm continually 'preaching to the choir', so to speak, and I am the choir!

Everything you read is to remind me that it's OK, I'm OK. Jon's OK. Life is good. We're going to be alright.

People tell me often that I inspire them. I am thankful for that even though I don't feel like a role model for inspiration at all.

Life here is different, yeah, even weird sometimes, but God is faithful and He has a plan A. It might not be my plan B, C or D, but it's alright to live it the best I can, laugh about it sometimes, pray about it all the time and cry occasionally over what is not.

If you're inspired by any of that then I'm grateful for the bonus of being a blessing in the middle of my unusual life and also in the middle of yours.

Maybe sharing this helps all of us. Maybe when we are open and honest with each other it releases us from the dangerous deception of charades and perfection, allowing us space to be who we are and where we are on this life journey.

Just maybe, we can peel off the mask, look one another in the eye and admit, "This is me, this is you. Life isn't perfect or even normal, but let's walk it together and be inspired by what God can do in, for and through those who are called according to His purpose in Christ Jesus our Lord." (Romans 8:28)

The glory of God shining out of our frailty, weakness and humanity...

Now that's inspiring!

Romans 8:28 "And we know that all things work together for good to them that love God, to them who are the called according to his purpose."

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I started out the New Year doing what I do most, hanging out with Jon. He spent the afternoon in our bathroom, taking a bath, shaving and getting dressed. About an hour before Mike and I were supposed to be leaving for the 9pm to midnight New Year Eve Celebration service at our church, Jon's caregiver called out sick. By then, Jon was clean and shiny and wanting to go out. What to do? Pastor Mike sorta' had to be there and I really didn't want to spend the evening home alone. Jon had gone out the door and was in the car so I decided, with great hesitation, to try to take him to church. Here's how the evening went: The first hour we were in Mike's office while Jon snooped around and made goofy faces for my iPad camera. Once we left there, he walked the entire hallway that perimeters the sanctuary until we were back where we started. He only slightly nodded his head at one person we met along the way, even though many acknowledged him. He decided to walk the length of the hallway again and head up the balcony stairs. As I followed, I silently hoped he would sit down in the back row for a while. No way, he got a glimpse of all the people, heard the loud music and headed right back down the stairs. We left the church building and went across the parking lot to the school and spent the rest of the evening in the gym. Jon shot hoops with an almost airless ball he found hanging around on the stage. But it was quiet in there and he had the whole place to himself, so he was happy. Very happy. Singing Christmas Carols out loud, while shooting the airless ball at the hoop, happy. On the way out of the gym, he stopped at the hall vending machine to buy a bag of chips. We returned home at 12:04 am, 2014, to colorful fireworks exploding over the far side of the lake behind our house. I've decided Jon would be much happier going to church after it's over. Me...well...I missed the whole event last night but I got to hear my happy son sing. That doesn't happen very often. Guess it was worth it. Happy New Year Jon!

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I yelled at my son last night.

I’m not a screamer, never have been. After growing up in a home of constant yelling, I vowed that I would not be that wife or mom.

But on rare occasions that vow hits an expiration date and this Jesus loving, pastor’s wife, overtime mom – YELLS! Yep, that’s right. Now you know (sorry to disappoint all those who tell me I’m the most patient person in the world).

Jon wanted to ride along to my chiropractor appointment yesterday afternoon. He patiently waited for me in the car and then we headed to one of his favorite hangouts – McD’s and the golden arches.

We ordered and settled in a booth at the back of the dining room. For a long while I preoccupied myself with my laptop, doing some reading and working on some writing, until I started feeling sleepy and decided to check the time.

If you’re a habitual reader of my adventures with Jon, you know that he is an extremely slow (among other things) eater. I’m not talking about regular slow or even irregular slow but the kind of slow that can get you top honors in the Guinness World Book of Records.

I couldn’t believe it, it was midnight! We’d been there for six hours. No wonder my eyes were shutting.

“Jon,” I said, “we need to leave now. We’ve been here too long and I’m falling asleep. I’ll throw away the trash. Please get your things together, and let’s get out of here.”

Unfortunately, Jon wanted to stay. The next twenty minutes consisted of various forms of me insisting and him resisting.

He wouldn’t get up at first. When he finally did, he tried bolting to the front of the building but I blocked him. With a half full cup of caramel latte in one hand and a partially eaten burger in the other, he went out the side door and started down the sidewalk in the opposite direction of where the car was parked.

I went after him and eventually herded him to the car, opened the door and very firmly instructed him to get in.

At this point, I so wanted to be home and Jon was feeling cornered and angry.

He bent over the seat and slammed his caramel latte into the center console cup holder so hard it exploded like a volcano all over the inside of the car. Sticky brown liquid dripped from the dash, down the side of the console onto the floor, ran inside the crevices of the console and splattered all over both front seats.

It was right there that I lost it. I exploded, just like that drink.

I put my hand on Jon’s shoulder, pushed him into the car and slammed the door.

Then he listened to hot lava erupt from my mouth most of the way home.

Today, the emotion of that moment has faded and I’m aware of my inappropriate reaction. I have apologized to him.

Jon doesn’t possess the ability to realize how his actions affect those around him so he won’t apologize in return. He never does.

Down syndrome limits some of his cognitive ability and autism doesn’t allow him to see past himself and into another’s heart. I know there will be no words or hugs from my son.

But none of that matters. I apologized to him because that is how relationships work, because I love him, and regardless of how frustrating his behaviors can be, because it’s the right thing to do.

God doesn’t ask perfect people to do His work of loving others, only willing hearts are needed. I have learned to quickly forgive and ask for forgiveness (whether it is granted or not) and move on.

Jon may push my buttons once in a while, but more importantly, I know how to push the Mercy reset button every morning, because God’s unending mercies, faithfulness and love are what Jon and I count on to bring us through another day of our unusual life together.

Lamentations 3:22-23 (ESV) “The steadfast love of the Lord never ceases;his mercies never come to an end; they are new every morning; great is your faithfulness.”

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Last week Jon had a guy spa day, sort of. After nearly a month of not wanting to go anywhere, he was treated to a haircut, shave and manicure and came back home looking polished and handsome. I’ve been taking him to the same barbershop for a while. All the employees there know him and are wonderfully patient with his moods, quirks and slow pace. The receptionist knows I don’t mind waiting and fits him in around appointments if necessary since it can take up to an hour to get him inside the shop and settled in a chair. I have to admit to having days when I’m tired of explaining Jon to people so it’s comforting to go back to a place where he’s already understood. Everyone just does their thing until Jon’s ready and no one freaks out because he’s messing up the schedule. There was a new receptionist behind the counter this visit which caused me to sigh internally as I came through the door. I knew I’d have explaining to do…again. Jon was still out by the car fooling with the door handle, so she looked at me oddly. This was a barbershop after all. Me: “Hi. My son, Jon, needs a haircut today.” Her: “OK,” looking around, “so where is he?” Me: “He’s out there.” I point to the parking lot. Her: “Is he coming in?” Me: “Eventually. He moves pretty slow. He has Down syndrome and autism.” Her: “Is he OK out there by himself? Should I go get him?” Me: (Internal sighing and so wanting to do some eye rolling) "He’s fine. I’m watching him from here.” Her: “How old is he.” Me: “33” Her: “Wow. You’ve been doing this a long time then?” Me: “Yeah.” Her: “Well, OK let me check. Both barbers have appointments so we won’t be able to fit him in until 12:30.” Me: “That’s alright. He won’t be ready to sit down until then anyway…maybe.” Her: "Really? That's over an hour from now." She continued staring at the computer screen, fussing over appointments and schedules and how to fit Jon in. She didn’t get it. As one of my good friends likes to say, she hadn’t been ‘Jon-a-tized’ yet. Being Jon-a-tized is defined as the state of being educated and familiar with the way Jon does life until you accept him for who he is and how his existence in your life (even for limited time periods) affects you. Everyone who comes into contact with Jon at any level of interaction is being Jon-a-tized. He shuffled through the door about fifteen minutes later and headed straight for the bathroom. He was in there for nearly thirty minutes. I was sitting on a stool underneath a huge flat screen TV, attempting to ignore some sports anchor rambling on endlessly about a football player and reading a book on my Kindle app, when the receptionist walked by with a broom. “He’s been in there a long time, is he OK?” I smiled at her. “He’s fine.” “I guess I see what you mean…about him.” She started sweeping hair into a small pile. Jon did get a hair cut and shave. We had lunch in the Japanese Steakhouse next door and then went two doors down from there and had his nails clipped and cleaned. In seven hours we managed to get a receptionist, a restaurant server and a nail technician with very broken English somewhat Jon-a-tized. All in all, it was a pretty good day.    

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Jon has a dresser with no clothes in it, a book shelf with very few books on it, storage boxes for his DVDs that are filled with playing cards, string, sticks, old AA batteries (and other unrecognizable items), stuffed animals that are supposed to be in designated crates and a cabinet for his old VHS movies with all the shelves removed. The shelves are on the floor and his videos are stacked on top of them. DVDs and videos are piled on the floor like towers, here and there. Stuffed animals lie in wait to attack and the paper paraphernalia he collects is scattered everywhere: old mail, newspapers, ad flyers and catalogs removed from the recycle bin in the garage. While my motto for home organization is, ‘A place for everything and everything in its place,' Jon prefers the motto, ‘Everything all over the place.’ His favorite storage area is the floor. Walking through his room is like navigating an obstacle course. One misstep and either you or a teetering pile of…something...can come crashing down. Even though it’s scary, it is necessary to venture into Jon’s room with the vacuum cleaner. Since there’s no way to vacuum around his carefully stacked piles, everything has to be picked up. It takes close to an hour to empty the floor of its contents. The clothes go back in the dresser. The books go back on the shelf. The DVDs go back in their storage boxes. The shelves go back in the cabinet along with the videos. The mountains of paper are thrown away. The floor is clean and cleared for proceeding without fear of tripping, attack or injury. And the room looks wonderfully neat and organized. Within twenty four hours everything is back on the floor in the exact same place. I’ve been fighting this silly battle a long time and there's no winning. Some things just have to be accepted as they are. So I’ve decided to close Jon’s bedroom door and get on with life. We’re both so much happier.  

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I don't get Jon's fascination for toilet bowl brushes but they keep vanishing. Seems I'm always in the dollar store buying another one. I have no idea where they go. Other than it's proper use, what would a person do with a bowl brush? The most recent one I bought was cradled in a white bowl shaped container. With a wish and a prayer that it might work, I printed a large Sharpie marker message on opposite sides, "Please do not take! Need this for toilet cleaning." It stayed under Jon's bathroom sink longer than any previous but a few days ago when I went in there to clean it was missing. After looking around and not finding it, I retrieved a brush from another bathroom to get the job done. Sunday afternoon Jon came out of his room with bags packed - a small computer bag on wheels and a plastic grocery bag stuffed to bursting. He went out on the pool deck, parked them in the corner by the screen door and came back in the house, was distracted by something else and forgot they were out there. So did I, until Monday night. Mike couldn't find his iPad and when he went in Jon's room to look for it, he discovered Jon's iPad was missing. Mike came back through the kitchen, his own iPad in hand. "Do you know where Jon's iPad is? it's not in his room. That's probably why he took mine." "No, I have no idea where it would be." As I was answering, I immediately remembered the bags left outside, and it was pouring down rain and had been for about ten minutes! I shot through the kitchen like the house was on fire. "Oh no! I bet it's outside! Mike watched me run to the pool deck into the downpour and return with Jon's dripping wet bags. We found his iPad and the toilet bowl brush squished along side a bottle of mouthwash, a toothbrush, a shower squeegee, his karate jacket, a roll of scotch tape, a pair of binoculars, the remote to his TV, a few of his favorite DVDs, and several other miscellaneous items. I don't know where he thought he was going. He hadn't packed a single pair of underwear but where ever it was...at least he was planning on having a clean toilet when he arrived.      

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People frequently ask why I don't bring Jon along when I travel. First of all, I'm not a huge fan of airplanes or anything related to them. The entire process of flight, including airports and all that goes on inside them, irritates me, but that is only one reason why adding my son to the flying equation is not the best plan. About five years ago I decided to take a summer trip to Maine to visit friends. These friends are considered family in every way and are 'adopted' grandparents to our boys. Jon adores them so I decided to bring him along. It was the first time I'd flown alone with him in a long time. By some miracle we arrived at the airport in plenty of time to get through security and to our gate. I checked our luggage and had a shoulder bag and a small backpack for myself and a larger one for Jon to carry on. I requested pre-board given Jon's tendency to freeze up when jostled or rushed in a crowd. The security line was a disaster. Jon's methodical slowness held everyone up. He didn't want to take his shoes off and his pockets, which I had made certain were empty when leaving the house, were full of the random items he removed from his bag on the way to the airport; sticks, string, cards, small toys, metal objects that set off alarms and a whole pile of whatnots that are important only to him. The more everyone tried to hurry him the more resistant he became and before long went into his classic, scowling 'freeze' mode, which interpreted means, "I'm upset, I'm not moving and you won't make me." We were finally pulled out of line and an attempt was made to pat him down. My warnings to the TSA folks about his aversion to being touched fell on deaf ears. After a full thirty minutes or more of this frustration, it was finally determined Jon was not a terrorist, just a grumpy dude. He was waned, got his shoes back on, retrieved his precious, miscellaneous trinkets that had been scrutinized like terrorist tools and we were on our way to the gate. Very slo..o..o..o..w..ly of course. We stopped at the food court to purchase a meal and drink. There had been no time for breakfast before leaving the house and food would help keep Jon preoccupied during the flight. Much time had already been used up getting through security so I hurried Jon as best I could, at turtle speed, toward the gate. I could see the gate on the horizon. We were almost there! Relief flooded through me. Suddenly Jon dropped his backpack at my feet and shuffled to the right, disappearing into the men's restroom. With a sigh and my foot, I slid his backpack to the wall. Saddled with all the carry-ons and a bag full of McDonalds including an oversized, wilting drink cup, I leaned against the wall to wait. I waited...checked the time and waited...checked the time again and waited. Twenty minutes had gone by! Then thirty! I asked several men going in the restroom to check on him for me and "Please tell him to hurry up." Each one came back out to report that Jon's feet were still visible under the locked stall door and my request had been rewarded with silence. More time passed and I was getting antsy, downright anxious, when I heard the call for our plane to commence boarding. Oh no! We were NOT going to miss this plane! Leaving our bags unattended, I walked to the entrance of the men's room and yelled, "Zip it up guys, I'm coming in. Gotta' get my son outa' here before we miss our flight!" I proceeded into the restroom at tornado speed past a wall full of startled males and as I breezed by, keeping my eyes glued to Jon's feet beneath the handicap stall door, announced, "Sorry guys, got a husband and two sons, including this one I have to get out of here. Ain't nothing in here I haven't seen before." I banged on the stall door. "Jon the plane is boarding. You have to come NOW!" No answer. His feet moved to the back of the stall. "Jon we are going to miss this plane if you don't come out RIGHT NOW." My voice was rising in exponential decibels along with my blood pressure. Silence. The door remained locked. Down I went on all fours and crawled underneath, while the few men who hadn't fled the room, gawked at the spectacle like one would watch a car wreck. I unlocked the stall door and grabbed Jon by the collar. He flailed and stomped trying to get away from me as I moved to his rear and booted his behind with my knee, then steered him out to where I'd left the carry-on bags. Remarkably everything was right where I'd left it. Jon was too upset to help me carry anything and I was too riled up to care. I threw all the bags over my shoulders, grabbed his lunch and drink and herded him like a runaway sheep to the waiting plane. By the time I got Jon settled into his seat and collapsed into mine, he was madder than a cornered hornet and I was near tears and so drained the only place I wanted to go was home. Two weeks later, following more crazy Jon scenarios that took place during our visit, the return flight was only slightly less stressful. I wanted so much for Jon and I to have great time together on that trip but came home exhausted and told Mike I was never traveling alone with Jon again. And I haven't. What was I thinking? It stands to reason that a guy who takes four hours to eat two slices of pizza might have a hard time adhering to an airline's schedule. In matters of sanity, I can't allow my heart to win out over reason. As much as I love spending time with my son, I've figured out some activities just aren't worth the extra stress and tension they create. Traveling is one of them.          

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In the late 1990s a children’s fantasy movie, The Borrowers, was released.

I’m convinced they are real and live in our house.

A few days ago, I reached for the broom I keep in the linen closet of the master bath, so I could sweep the floor after I dried my hair.

Gone.

I needed my kitchen scissors to open a bag of almonds.

Missing.

I looked in the drawer for the cheese slicer to serve some cheese and crackers with lunch.

Not there.

Useful items grow legs and disappear around here regularly.

A friend had been missing her reading glasses for several months.

While she was visiting one day, Jon came out of his room with a pair of glasses on his head.

She points to Jon and says to me, “Hey, those look familiar, are they yours?”

“No,” I reply, “they’re not mine. I don’t know where they came from.”

Surprise, surprise! They were hers.

I find random items in Jon’s room all the time: the wooden dowel handle that screws into the toilet bowl plunger, bills that need to be paid, blank checks from our checkbook, a makeup brush that goes with my blush, the manual for the car from the glove box, Mike’s neckties from our closet and various kitchen utensils, to name just a few.

Recently I invited some mom’s and their kids over for a swim day in our pool. There were keys, sunglasses, phones and open tote bags full of things scattered around everywhere.

Jon decided to help himself to two pair of kids flip flops that weren’t any bigger than his hand. It’s not like they would fit him and he’s always hated that thingy that goes between the toes.

Who knows what goes on in that noggin of his?

During David’s high school graduation, each graduate was encouraged to write a one-line acknowledgement to their parent(s), family or friends which was placed in a PowerPoint presentation and projected on several large screens during part of the ceremony.

Sweet sentiments scrolled across the screen accompanied by the student’s name who penned them:

“Thanks Mom and Dad for all your support,”

“I love you Grandma, you’re the best,”

“Couldn’t have made it through without you, Friend.”

“God bless you Teacher, for all you did for me.”

The crowd ooo-ed and awww-ed as we watched the quotes marquee across the screen and waited for the one meant for us.

Finally David’s popped onto the screen.

“It’s in Jon’s room!” was all it read, in a big, bold font.

As the crowd mumbled in bewilderment all around us, we burst into fits of laughter.

For all the years David couldn’t find the essay he just wrote, homework and test papers, notebooks, pencils, pens, assignment books and algebra calculators, the answer to the question...

“OK, where is my________?” ...was always, "Go look in Jon’s room.”

The answer to that question has never changed.

If you come for a visit and are missing a few things when you return home, we know the first place to look.

By the way, I found the stick to my broom...guess where…?

Jon’s room.

And the broom itself… behind the recliner in our bedroom.

Like I said...who knows?

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