Jon’s birthday was a few weeks ago, May 4th actually, and birthdays have always been a big deal around here. Mike made sure of that. He believed if God took the time to make you and put you here on this ball we call Earth, you mattered. You were valuable, thus birthdays were cause for celebration.

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

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

I went to the store the day before Jon’s birthday. Bought a cake and candles and made sure he had a few gifts to open. I asked him where he would like to go, what he’d like to do, and made a few suggestions. Before I went to bed that evening I reminded him, “Don’t forget to think about what you want to do tomorrow Jon. It’s your birthday.”

He was standing in the kitchen and turned to look at me. “I don’t care,” he said and my heart broke into a zillion pieces. Again. I went to bed that night, cried into my pillow and cried out to my Heavenly Dad. “Help us please! We are so wounded. Heal us. Bring us to a place of new joy.”

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

Jon never left his room on his birthday and we didn't go out. It was the first time in 38 years he didn’t want to hear the happy birthday song or burn the candles down to the frosting before he blew them out.

Several days later that unopened package of candles was tucked away in a drawer, when I finally cut the cake and gave him a piece with his dinner. Right now, the loss of Jon’s father in his everyday life, turns every special occasion into pain. The events we usually celebrate become mile markers for what is missing. Reminders of what was. This is the nature of grief.

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

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

Please Lord, let it be so.

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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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I was on my hands and knees scrubbing the tile floor around the toilet for the fourth time in a week. Those of you who live with boys know they sometimes miss. Jon is not a boy. He's a man. And he still misses, way too often for my liking. As I applied bleach to the grout again, I sighed and breathed out loud, "I hope I can still get down here and do this when I'm 80," and felt a sudden hopelessness roll over me. Then I heard a still small voice in the depths of my soul. "I see you." My Bible reading that morning had brought me to the story of Hagar. Hagar was the slave of Sarai, Abram's wife, obtained in one of their detour trips to Egypt. Hagar came from a culture that worshiped multiple gods. The Egyptians had a god for everything, so Abraham's god, on her list of imaginative deities, was probably added only to appease the old folks. Hagar had no rights. She was a nobody. Her duty in life was to fulfill the wishes of another, and when barren Sarai grew tired of waiting for the son God had promised Abram, she did what was a common practice of their culture. Sarai sent Abram to sleep with her slave to claim a son through Hagar. Hagar was forced to become a surrogate mom. Genesis 16:1-3 "Sarai, Abram’s wife, had no children, but she had a slave girl from Egypt named Hagar. Sarai said to Abram, “Look, the Lord has not allowed me to have children, so have sexual relations with my slave girl. If she has a child, maybe I can have my own family through her.” Abram did what Sarai said." When Hagar became pregnant she realized she now had an advantage over Sarai. Hagar got herself an attitude and who could blame her, really? What's Sarai going to do to her now that she's carrying Abram's child? Someone who’s had no control over her own destiny finally had an edge. Eventually the relationship between the two women became so intolerable, Hagar ran away. Genesis 6:7-12 finds Hagar beside a spring of water in the desert having a conversation with an angel of God. She was told to go back home and continue to serve Sarai. But God promised Hagar her son, would become a great nation also. He gave her hope. Not one of Egypt's gods had ever spoken to her. Not one of them cared enough to show up and reassure a despairing slave girl. But Abram's God did. And she was amazed. This God knew who she was. Where she was. And what she needed. This God had eyes to see her and ears to hear her. This God cared! Then, "the slave girl gave a name to the Lord who spoke to her: "You are ‘God who sees me,’” because she said to herself, “Have I really seen God who sees me?” Genesis 6:13 I realized that day on the floor that God sees me. He said as much. And every time I get on the floor to scrub again, I am reassured He is pleased. What we determine to be small, insignificant, unseen and even annoying, matters greatly to God. God sees you driving to work again, that counter you wiped, the laundry washed and folded, the dishwasher you load, the toilet scrubbed, another diaper changed, the gas tank you just filled and each time you help lift that person in and out of his wheelchair. He sees the smile you brought to someone, the hug you gave, the ride you offered, the meal you cooked. He sees how tired, desperate and broken you are. It matters to Him. The unseen is important to Him. That thing done when no one watches. The mundane. The exhausting. The unappreciated. The irritating. He sees it all and He knows. Because my God is the God Who Sees! And He's your God too.    

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Do you know, Jon, the majority of humans have forty six chromosomes in each cell of their body, a combination of twenty three from both their mother and father? This mix of DNA creates a brand new and unique person. Also adding to the individuality of a new life, are the blended chromosomal characteristics of many previous generations. Chromosomes are us! It's miraculous when you think about it.

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

Someone like you.

There are some theories about where that extra chromosome comes from, but no one really knows. According to experts, it didn't come from me or your father, because we each only have forty six. The greatest scientific minds have yet to figure out this random occurrence. They can't explain it. I'm certainly not scientific. I barely passed the brain twisting subjects of biology and chemistry in high school, so if the smart people don't know, then there's little hope of accurate theorizing from me. But I've wondered about that extra chromosome at times. Did it fall, like a shooting star, from the sky and right into you? Was it something I ate? Did God put it there? Were you specifically chosen for the purpose of carrying that extra copy of chromosome number twenty one or was it just...umm...a glitch? How does a person end up with an add-on? It's rather mystifying, so I don't think about it too much, because doing so ties my brain in knots. But occasionally I find myself wondering who, what, you would be without it. You probably wouldn't be living at home with us and by now would have a wife, kids, two cars, a mortgage and a dog. Believe me when I tell you, you're not missing much not having bills to pay. I think you'd still love music and movies, and be funny and sometimes grumpy. Maybe you'd still like quiet surrounding you, be a night owl, enjoy long evenings out and slow eating, savoring each bite of your food. I bet you'd still be messy, a bit obsessive, and would write notes to the people you care about. You would still believe, "Everyone deserves a second chance." And your smile would light up your eyes, a room, and this mother's heart, just like it does now. We have traveled a long way together, haven't we? You, me and that extra. What a difference it's made! It's been a life changer, a guide and a teacher and we are not the same as we would have been without it. I don't pretend to understand that chromosome or how or why it chose you. Maybe it's divine or just 'fate'. I can't say. But it doesn't matter, Jon, because you with your added chromosome are gloriously loved. And when it comes to love, chromosomes don't count. We're all on a level playing field. "For God SO loved the world...that whosever.." (John 3:16) The brightest mind on earth cannot begin to comprehend the how and why of this kind of love. If every single chromosome, in every single cell, in every single 'Whosever' in the world, is SO incredibly, fantastically, marvelously loved by the Creator of it all, maybe the playing field isn't as level as I think. You must be extra loved. At least that's how I see it. Lucky you!

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Jon was fourteen years old when we visited Catalina Island off the coast of California. Our friends, Earl and Pat, had moved to the island from Maine when Earl took the job of maintenance overseer for a large girl scout camp located there. Summers at the beachfront camp were noisy and chaotic, with hundreds of girls and camp counselors arriving constantly in one to two week shifts. But winters were long, quiet and lonely; a good time to visit, and since we were homeschooling, the boys and I planned a six week stay during the winter of 1994. From the day he arrived, Jon decided Earl (or Pa, as the boys and every other ‘grandchild’, related or not, called him) was going to take him fishing in the ocean. “And I’m going to catch an octopus,” he declared to all of us. “It's really hard to catch an octopus Jon,” Pa told him, “they live way, way down, too deep in the water to get on your hook.” But every day Jon kept insisting and reminding us, as soon as Pa took him fishing, he was going to catch an octopus. We were there several weeks before Earl finally had a free day for fishing. They packed a lunch and eagerly climbed into the boat along with Jon’s younger brother, David, and a neighbor, Ken, the caretaker of the yacht club located a few miles down the beach. Jon told Pa and Ken as they left the shore, “I’m going to catch an octopus now.” Ken replied with the same explanation Pa had given. Everyone was trying to lessen the disappointment that was coming, in spite of Jon’s insistence. They left in the morning and in late afternoon I heard Jon running up the beach to the house shouting, “Mom, Mom, I caught an octopus! Mom! I caught an octopus!” I went outside to meet him. He was grinning from ear to ear. Jon has always had a huge and slightly quirky imagination so I figured he was fantasizing in his head again, pretending he had caught one because it’s what he’d wanted so much. Earl met me halfway to the dock with a giant smile on his face. “Well, you’re never going to believe it, I still can’t, but Jon caught an octopus today.” “You’re kidding.” I was stunned and delighted all at the same time. “I thought you said it was impossible?” “I’ve been fishing in the ocean for years and never have I or anyone I know, caught an octopus. “ Earl looked as amazed as I felt. Turns out they were a few miles off shore when Jon felt a tug on his line. He reeled it in and to everyone’s (but his) surprise there was a baby octopus clinging to the string. Jon got his octopus! That was twenty one years ago. And I’ve never forgotten it. When I read, “Give all your worries and cares to God, for He cares about you” (1 Peter 5:7), or “Take delight in the LORD, and he will give you the desires of your heart” (Psalm 37:4), I’m reminded of a God who cares enough about a fourteen year old special needs kid to send a baby octopus from the depths of the ocean to his fishing line. In the hard times, circumstances and struggles of life, when you feel as if God isn’t listening and He doesn’t care about you or the details of your situation... ..remember Jon and his octopus. God knows. He sees. He understands. He cares. Keep believing for the impossible. Keep trusting. You never know what could be surfacing from the depths of despair, just for you.

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It's no one's fault," the doctor in my hospital room said, the morning after our son was born. "These things just happen sometimes." Our newborn baby had Down syndrome and as the doctor began to explain the possible long term outcomes for him and our family, my heart raced in panic. My mind filled with a cloud of fear. "NO! This can't be happening! Not to my baby! Not to me! Not to us!" Isn't that how it goes when we're faced with circumstances beyond our control? When our carefully thought out plans are suddenly ambushed? We're cruising through life, a few bumps and glitches here and there, but nothing we can't handle. Then suddenly..Wham!! We find, not just the proverbial rug pulled out from under us, but the floor too. The ground has just opened up and swallowed us whole! And when we're done free-falling, we have to find a reason. The 'Why' must be answered. It has to be SomeOne's or SomeThing's fault. A friend sent me a card once that read, “Life is all about how you handle Plan B.” Plan A is what you want. Plan B is what you get and I wasn’t dealing well at all, with what I got. I fell into absolute despair trying to figure out what I did to cause my child's disability. For months it filled every waking moment and many sleepless nights. Those pesky, "I should have" and "I shouldn't have" scenarios, plagued my thoughts constantly. There was plenty of help in the guilt department from well meaning folks. Everything from, "You should of eaten more potatoes while you were pregnant," (no kidding) to "You must have bad sin hiding someplace in your life for God to punish you like this." Apparently there was a rash of babies born with Down syndrome at the time. In an attempt to find a common denominator (or something to blame) the Department of Health and Human Services for the State of New York called when Jon was about a month old to ask if they could survey me. "Do you live near power lines? How long have you lived there?" "Have you ever taken drugs? Did you take drugs while pregnant?" "How often do you drink alcohol? Never? Occasionally? Once a week? Everyday?" "What kind of make up do you wear? What brand of laundry detergent do you use?" After an hour long barrage of questions, I hung up the phone more convinced than ever I was the cause of my son's diagnosis. When I finally gave up blaming myself I turned my angst on God. He could have prevented this but didn't. It was His fault and I was mad. What kind of God did I believe in anyway? An overwhelmingly devastating question for me, since we were fresh out of Bible college and my husband was just beginning a lifetime of pastoral ministry. Though it seemed artificial to be so angry at God when my husband was a pastor, and I, the pastor’s wife, anger was all that made sense at the time. It was the easiest life raft to cling to. We see it in the daily news continuously. A crisis occurs, a shooting, tornado, flood, fire, mudslide, plane crash, death, violence or destruction. The talking heads start in, opinion-ating, analyzing, philosophizing and finally conclude with, "Something must be done to make sure this never happens again." Either people want to believe they have this much power, this much control, or placing blame is just a coping mechanism for the unanswerable and unexplained. Sometimes there is someone to blame but more often not. Sometimes stuff just happens because we live on a fallen, broken and sin cursed planet. Finding possible solutions is useful but the blame game often goes around in a monotonous circle until we are divided and estranged, from each other and from our only source of hope. God. It seems God is blamed for most everything that goes wrong, by people who barely acknowledge His existence the rest of the time or bother to thank Him for any of the good and right in life. In his book, Reframe. From the God We've Made to the God With Us, Brian Hardin said it this way: "We don’t usually start with God, but if we can’t find an answer we often end up there. God has become the cosmic trash heap for all humankind’s unexplainable suffering. He’s apparently got His hands in everything from tornadoes to human trafficking. From cancer to the reason the car wouldn’t start this morning. And this is the God we’re supposed to be in a relationship with?" If there's one thing I've learned, it's this: I can't control everything that happens to me, to those I care about or to the world at large. And I don't have to figure everything out, don't have to know all the answers. I only have to admit and own what I'm responsible for and trust my Heavenly Daddy has a greater plan and purpose than I can see. He will bring justice in His time. He will make everything right in His way and acceptance of this truth, deep in my heart and soul, not just my head, brings peace in a frenzied world. And for all my initial distress, despair, crying, sighing, shouting and blaming, my son turned out to be a blessing, a unique treasure God values and loves. Someone who is always teaching me the art of selflessness, drawing me closer to the heart of my Father. I eventually laid it down, the miserable scrutinizing, finger pointing and fretting over who or what was at fault. It was exhausting and served no purpose. Blaming drained life from me and returned nothing. The blame game was over and I lost. But I'm no longer a sore looser, just a grateful one.   Job 40:1-5 The Lord said to Job: “Will the one who contends with the Almighty correct him? Let him who accuses God answer him!” Then Job answered the Lord: “I am unworthy—how can I reply to you? I put my hand over my mouth. I spoke once, but I have no answer—twice, but I will say no more.” Romans 9:20 "Who do you think you are to talk back to God like that? Can an object that was made say to its maker, “Why did you make me like this?” John 16:33 "I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

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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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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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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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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 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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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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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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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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We now have the R-word, happily joining the demise of the N-word, at least in the halls of government. In 2010 President Obama signed Rosa’s Law mandating the term ‘intellectual disability’ replace ‘mental retardation’ in all federal health and education policies. As of this month Social Security has dropped the language and in Florida, our state of residence, Governor Rick Scott followed forty other states by signing a bill, in February of this year, removing ‘retardation’ from state statutes. The clinical definition of the word retarded is: slow or limited in intellectual or emotional development or academic progress. In its simplest form it means, to slow down by preventing or hindering advance or accomplishment, to impede. I’m not bothered by the R-word much anymore. Though he may be slow in many undertakings, our son, Jonathan, and others like him are so much more than the definition of the words that label them; they are people first with individuality, personality, feelings, wants, hopes and dreams just like all of us. Those who make an effort to know them understand this. The morning following our firstborn’s arrival in May of 1980, the pediatrician came into my hospital room to give me the news. Our baby had Down syndrome. When our son was born, the use of the word mongoloid, which for decades inappropriately described people with Down syndrome, was declining and being replaced with the last name of the British doctor, John Langdon Down, who first classified the characteristics of the syndrome in 1866. Up to that point, I had limited knowledge and exposure to people with mental disabilities. The law providing disabled children a public education wasn’t passed until the year 1975, two years after I graduated from high school and in previous generations the majority of disabled children were hidden away at home or put in institutions never to be seen again. I had no idea what Down syndrome was; had never even heard of it. “What is that?” I asked the doctor, hoping it was some minor newborn problem that would go away in a few days . “A mongoloid,” he answered, the inflection of his voice rising at the end of the word as if asking a question. He looked at me like he hoped I knew what that meant. I did. That word sent a jolt of fear deep into my very core. I remembered catching brief glimpses of “mongoloid” people. Images of a young man who attended the church I went to as a child immediately scrolled through my mind. ‘But we don’t like to use that term anymore,’ the doctor explained, ‘’Down syndrome describes the condition and its various symptoms better. I’m sorry, but you need to be aware that there is no cure for this and your child will be retarded for the rest of his life.” In just a few sentences, I had heard every word available at the time, in medicine and society, to categorize my baby. In that life changing moment such terminology came only with the realization that I was totally unprepared for what the future might hold for us and our newborn son. I had a lot to learn. Years later, our youngest son came home on a college break, bringing a group of friends with him; a mix of guys and gals. As we gathered around the table for an evening of popcorn and board games, the random banter and laughter of youth reverberated through the house. At the height of their silliness, one of the guys made a funny comment that sent everyone into laughing fits. One of the girls flippantly responded by telling him, “You’re such a retard.” Suddenly, silence halted the clamor. In the college lunch hall the conversation and laughter would have continued without a thought. But here, as guests in Jonathan’s home, sitting at his family’s table, laughter quickly changed to embarrassment, with the immediate realization of what had been said. Red faced and tripping over her tongue, the girl began apologizing profusely. She didn’t mean to be hurtful, I got that. It was an expression, something kids say to each other and in that context the word was a synonym for acting dumb or ridiculous. I wasn’t upset, but told her she needed to think how Jon would feel if he had heard her. Fortunately he hadn’t. The word, retard, had been used toward him in a derogatory context and he only knew it as a put down. His reasoning and processing ability is very literal and it’s often difficult for him to separate words based on context. The framework for forming the multiple nuances of a word, are usually lost on Jon. I hoped it was a lesson she and the other students present that evening, never forgot. Legislating behavior doesn’t change who we are on the inside and playing politically correct word games does nothing to change the heart of a person who chooses to degrade a word from its original definition into a weapon of insult. If we simply value every God created human life, treating others the way we want to be treated, and think about the impact of our words, there would be no need to sign laws to send words to the dictionary scrap heap. We are called to speak blessing not condemnation. Peace not strife. Encouragement not injury. Forget N and R words! Solve the problem. Communicate the G-word to everyone, everywhere.

GRACE!

There’s no law against that one, at least not yet. Let your conversation be always full of grace.. Colossians 4:6 Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers. Ephesians 4:29        

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Mother’s Day is set aside to honor the women in our lives who birth us, adopt us, nurture, protect and empower us, for better or worse, richer or poorer, in sickness and health. They do it because they love us. They do it because it’s what moms do.

This Mother's Day, I want to give a shout out to a specific category of moms; the Navy Seals and Green Berets of mother troops, those who were most likely drafted into a line of duty they didn't sign up for or expect, those who are in continuous boot camp and on the job training, secretly wondering if they're qualified to carry out their mission. Mothers of children born with disabilities and/or critical medical conditions - the "Special Moms”.

No question that a mom loves her special kid, like a mama bear loves her cub, and once that child is permanently entangled in her heart she wouldn't trade him/her for anything. She may have moments when she wishes her child wasn’t so ill or limited or challenging. She might have days when she prays for less stress, worry and exhaustion. She could have fleeting dreams of packing a bag and running far away, farther than Calgon could ever take her, but she doesn't, because she knows she has been given a job to do, a unique assignment that could possibly end sooner than her broken heart can imagine or last a lifetime, with no leave of absence in sight.

Once she comprehends the blessing hidden in the uniquely wrapped treasure that is her child, the special mom gains wisdom beyond measure and learns the importance of letting go and clinging to Jesus. She matures with understanding of mysteries others are not privileged to recognize or appreciate. In this brief pilgrimage through life with her child, she begins to shine like the jewel God created her to be: cut, polished and beautiful.

So here’s some well deserved kudos to all the overtime moms, those who ever have or are dispensing endless care and love for a very unique kid; some, long past the point of when full time mothering should end. You know who are. You know what you do and so does God. He has sufficient wisdom, grace and endurance when the task is more than you can bear, when you feel overwhelmed and obscure. He promises His strength and grace will be perfected in both your own and your child’s weakness and frailty. Throughout a lifetime bursting with significant things to be done, every small detail you attend to, every sacrifice and sleepless night matters.

Special Forces Moms everywhere – thanks for the remarkable job you do. I pray you are infused with extra peace, joy, strength and blessed with a few quiet moments to relax, catch your breath and contemplate how important and amazing you really are, to your special needs child of course (whether he discerns it or not), to your family, but most of all to God.

Look up and be aware of God’s delight as you persevere in the unusual assignment you’ve been given. Allow the warmth of His smile to shine into the depths of your weary soul. Soak in His unending love and be revived as the power of Christ rests upon you.

HOOAH! and Happy Mother’s Day! :)

1 Corinthians 15:58 Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

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While most guys Jon’s age are paying mortgages, car payments, utility bills, giving lunch money to their teenager or buying diapers for their toddler, he is spending his money on very distinctive things. His forays into the lengthy aisles of the dollar store are fascinating and always leave me with a sense of wonder over what interests him. Jon's recent list of purchased items consisted of: •A pitchfork shaped glow stick - that's sort of cool actually. •A greeting card he will not send to anyone - he will write non-readable things on it and carry it around for a while. •A bundle of girls plastic hair bands - sometimes he wears them but mostly uses them for holding his stuff together, maybe wrapping one around three stuffed animals or last week's newspaper confiscated from the recycle bin. •A bag of chips, two Kraft snack packs of bread sticks with cheese dip and an oversized Hershey bar - food is always a good choice. •A package of brightly colored Mardi Gras beads - no idea what he does with them. •A package of ponytail elastics - uses these to hold things together and also wears them on his wrists or ankles. •A drinking glass -?? like we don't already have a cupboard full of those? •A plastic sword - adding to his array of Karate/Ninja chopping items. •Three sets of collectors cards, NBA and baseball - never watches sports so....?? •A spy kit – probably spying on me so he can hide next time he sees me coming with a clean shirt for him to put on. There were more items that I don't remember but you get the idea. The entire accumulation totaled $20. Whatever isn't edible will end up on the floor in his room, in his shorts pockets or in a grocery bag in the back seat of the car next time we go out. If Jon lived alone we would definitely be watching him on an episode of the TV reality show, Hoarders, and he would probably be sporting the striped beach towel cape (a towel with holes cut out on each side to put your arms through) that he designed and tried to wear into the dollar store. Maybe he should try out for Project Runway instead or the next Batman film.

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Jon tried to leave the house last night at 1 am. I heard the door alarm sound and by the time I got my asleep self out of bed and found my shoes, he was headed around the side of the house with two grocery bags and a back pack full of stuff. Last week he wandered away in the middle of the day while I was in the front yard watering the flowers. I found him in an adjoining neighborhood on the other side of the lake behind our house.

I think I need to be that many eyed critter Ezekiel saw in his vision (Ezekiel 10:12). I used to tell my boys that mothers have eyes in the back of their heads and that go around corners and they believed me, but Jon has proved my theory to be incorrect.

I don’t know where he thought he was going. If asked he doesn’t say. I had plenty to say though.

Things like: “Where in the world do you think you’re going in the middle of the night.”

“It’s dark out here, a bear could eat you and we would never see you again.”

“I was sleeping, you’re supposed to be too.”

“If you take off in the night the neighbors will call the police and your wandering record at the police department is already so long their computers keep crashing.”

You know- exaggerated things mothers always say and everyone, including Jon, ignores.

I’m living with a thirty two year old bad attitude teenager. Jon has been slow in reaching most of life’s phases. He didn’t walk until he was two and a half, didn’t start saying words until he was four and wasn’t completely out of diapers until he was about eight. I think the adolescent years have finally arrived! He doesn’t like me, won’t talk and won’t come out of his room. What does that sound like to you?

I get the feeling Jon doesn’t want to be here anymore. He is bored with us (can't blame him there), but more than that he is bored with his life as it is. He is now refusing to go to the day program he was attending. I made and cancelled three appointments to tour the ARC in Deland, another day program with a work component, because he won’t go. I rescheduled a recent doctor appointment for him for the same reason. Tomorrow he has a dentist appointment. Wish me luck with that!

Occasionally I manage to get him out of the house. Usually after offering to take him to the movies, bowling, library, shopping or for lunch, dinner, someplace, anyplace, I get a scowl in return and a closed bedroom door in my face. Lately he only comes out to eat or take off someplace.

So what’s a mom to do? He’s too old to spank or put in time out. Beg, plead, implore? One percent success rate on that. Restricting privileges? What privileges? Kick him out? He might actually like that but no... can’t do that. Pray? Yes, I do plenty of that. I understand I Thessalonians 5:17, “Pray without ceasing”. It seems to be all I do these days.

Prayer is my sanity and my medicine. I’ve learned that running to God instead of blaming Him for everything keeps my heart light and my emotions in check. I pray for Jon and for us and for solutions to a problem that looms bigger than a mountain. I’m expecting an answer to come, when or how remains to be seen. But that is what walking in faith is all about.

While I wait, I ask God to give me Ezekiel’s winged creature eyeballs, if not literally, at least by the Holy Spirit to my own spirit so I can keep track of this guy-my wandering, bad attitude, adult, teenager who I love with all my heart.

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I wrote this in 2005 when we lived in Kissimmee, FL. David is married now and out on his own. Jon is still wandering....

Jonathan wandered off again this evening. It always happens when we’re busy and focused on something else, a phone call, project or work in the house or outside. First he’s there and then suddenly he’s gone. I fail to understand how a person who, most of the time, moves slower than a snail, can disappear so fast.

We did the customary searching in the usual places and when he didn’t show up, called the police. The search helicopter eventually spotted him walking around in the eight hundred plus home sub-division, which faces our back property line with a long and tall white vinyl fence that we have annoyingly named ‘The Great Wall of China’. We are privileged to view this glaring white reminder of growth and development in Central Florida where trees and thick jungle flora once thrived. Jon must have somehow crossed the drainage ditch, full of water from recent rains that extends between the two properties, to get over there because he was covered with mud. If only he would dedicate his determination to more useful purposes.

In the middle of all this confusion, one of the three police officers who came to the search party, drove her patrol car off the edge of our driveway into the drainage ditch out by the road. The back of the car hung up on the driveway’s cement edge and the front hung in the ditch. It took two hours of waiting and a tow truck to remove it. She didn't leave until after the sun went down.

Our neighbors across the street, who graciously help us look for Jon whenever he disappears, says the neighborhood was pretty boring until we moved in. I'm not sure what that means. Maybe we provide cheap entertainment; maybe they secretly wish we’d leave.

David called while all this was going on. He was up in Orlando with a friend at Vans Skate Park flying and flipping around on his skateboard. This is a normal activity for a fifteen year old. Searching for your twenty five year old with a troop of police officers and a helicopter is not usually considered a normal activity. But for us it has become one.

“What’s going on?” David asks. Why don’t you guys come up and meet me and we’ll have dinner at this new seafood restaurant that just opened here?”

“Can’t,” I reply, “Jon’s missing, cops are here looking for him.”

“Again?” David responds with a sigh. “OK, well call me back when you find him.”

Because we always do find Jon when he goes off on his excursions, this conversation occurs like it’s an everyday event, nonchalantly and without panic.

Jon comes home in the back of a patrol car and gets out with a Cheshire Cat grin on his face. Most fun he’d had in a while I think. We thank the officers for their help and they cheerfully reassure us, “That’s what we’re here for, just call if it happens again."

It's not a matter of 'if' but 'when' is what I'm thinking, but don't say so.

I realize how grateful I am for these public servants, even the one who left huge gouge marks in the side of our driveway and little pieces of broken cement lying in the ditch. I also realize how grateful I am for my God who always keeps this wandering son safe every time he disappears. There must be some pretty resourceful angels assigned to him. And I’m really happy to know that God, who gives us our children, can also be trusted to take good care of them even when we can’t.

We will continue to call on Him for patience and grace needed to care for this special guy in our lives and will call the police whenever necessary too.

For he will order his angels to protect you wherever you go.They will hold you up with their hands so you won’t even hurt your foot on a stone. Psalm 91:11-12

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In 1975 Congress approved a law which gave all disabled children access to free public education and mandated that schools provide individualized instruction in the least restrictive environment possible.

This was a great victory for previous generations of families whose children had been secluded from schools and society because of physical or mental delays and spearheaded, if not total acceptance, at least the tolerance that people with disabilities experience today.

By the time our son, Jonathan entered preschool in 1983, “inclusion” was the buzz word of special education and children with mental delays were being mainstreamed into regular classrooms with the idea that being with their “typical” peers would create positive, normative role models for them.

The pendulum swung from isolation to total access and Jon, who was born in 1980, is part of a generation that was first to grow up in this inclusive environment.

My own pendulum has swung back and forth over the years as we dealt with the positives and negatives of mainstreaming. Now that Jon is an adult, I’m seeing the end results of the concept in real time. I have come to the conclusion that it is not a one size fits all package.

Inclusion worked out fairly well in the elementary years. Jon had some friends at school, but being in a regular classroom didn’t guarantee invites to sleepovers and birthday parties or getting picked for the dodge ball game. The phone or doorbell seldom rang after school or on weekends, with requests for Jon to come out and play.

The nuances of inclusion and being around regular developing peers can give kids like Jon the hope that they will eventually live a “normal” life, like everyone else. That can lead to disappointment and frustration for those who are cognitive enough to know that isn't happening for them.

Once Jon’s peers reached the age when they began driving, dating, going off to college, joining the military or finally getting married and starting their own families, inclusion became a mute point. Everyone else moved on and Jon remained where they left him.

I recently read a news story about a school in Ohio that is trying what they refer to as “reverse inclusion”, bringing the typical high school-er into the special ed classroom as part of their curriculum, to interact with and assist their disabled peers (http://www.disabilityscoop.com/2013/03/19/in-twist-inclusion/17525/). Some professionals and parents are offended by the idea, saying it is still segregation and makes people with disabilities little else but a project.

I’m not so sure. Maybe bringing others into the world of the disabled, instead of always trying to fit them into ours, is a welcome addition. To truly understand the challenges of the disabled, their reality must be entered rather than viewed from the sidelines. It’s easy to ignore a special needs peer in a regular classroom while you laugh and talk with your other friends, but it is impossible to ignore him when you are on his turf and up to your eyebrows in his challenges.

I’ve discovered what is preached in the school system does not always translate well into the real world of adult life. While schools may create the environment of inclusion, what actually takes place in the community for people with developmental delays costs money and a lot of it. With state budgets shrinking, the services available to give people with disabilities the most “normal” life possible ( which is the ultimate goal of special education inclusion) are limited at best and many of the people who interact with disabled adults, providing respite and companion care, job coaching, supported living or transportation are usually family and paid “friends”.

Should inclusion be stopped? Absolutely not. I believe that Jon’s function level was elevated and he benefited in many ways because of it. But it is not the utopia that some professionals like to hang their PHD’s on, after all inclusion is not just a law, theory or experiment but a matter of the heart.

Maybe a few of these typical kids in Ohio who participate in the world of their special needs peers will later develop a heart for truly “including” adults with disabilities without getting paid to do so. Maybe they will be the ones that reach out to invite a disabled person to their home for dinner, to a movie, for a walk or to church. Maybe they will be the ones who won’t mind dealing with some of the issues that can come with developmental delays in exchange for the joy and friendship that is returned. Just maybe…

Inclusion may now be viewed as the politically correct version of assisting and incorporating the disabled population into everyday life, but based on our experience and in my very humble opinion, anything that bridges the gap is worth a try.

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When I am out and about and the subject of Jonathan comes up, many people ask me why he is still living at home at the age of thirty two. The question always asked, "Aren't there programs and residential places for him?"

"Yes, there is." I explain, "but they are not free or cheap (and some of them are no good, but that's another topic). Someone has to pay for it and it's me and you, the tax payer who does, through the Medicaid system. Since there are about 20,000 people on a wait list for developmental services in the state and Medicaid is struggling, while simultaneously Florida is facing the same economic crisis as the rest of the world, there is not enough money to go around."

I recently decided that in spite of this gloomy scenario, it can't hurt to ask and requested the application needed to raise Jon's funding level so we can have him spend a few nights a month at the Duvall Home (where he attends an adult program a few days a week - when I can get him there!) with a long term goal of slowly adjusting him to move in permanently at some point. There aren't words to express how good this could possibly be for him and us and also the peace of mind it would give us knowing he is in a safe and secure place, especially as the years continue to fly by.

I received this document shown above which outlines the criteria for increased funding from the Florida Agency For Persons With Disabilities. As you can see there are three crisis categories, that should we fall into any one, has to be heavily documented by all sorts of folks who have a long list of letters behind their names but may be short on the experience of actually living 24/7 with a guy like Jon.

Our situation doesn't warrant any of these qualifications and quite honestly I'm thankful for that. Jon is not homeless, he is not a danger to anyone and we are still able to care for him. But that doesn't mean that as an adult, he shouldn't have the choice to move on, have more to look forward to everyday, more opportunities than we can provide for him and the chance to have the best possible life, something besides hanging out in his room and with his mom most of the time.

If we sold our house and lived under a bridge in our car, while Mike continued to work, we might barely have the resources to place Jon at Duvall full time. Obviously, that is not an option, but I am formulating information and a plan in my mind to move forward with this request. We don't fit the qualifications listed here, but like I said, it doesn't hurt to ask. 

My God is a miracle working God so I will bathe it all in prayer, hope for favor from some decision maker in an office up in Tallahassee and see what happens.

Will keep you posted.

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While I was in the bathroom this morning, I realized there were eyes watching me. They were half hidden under a towel draped over the edge of our Jacuzzi tub. I laughed when I spotted them because I knew where they came from and how they landed there.

Pastor Geoff and Bethany, the Children’s Ministry leaders at church, gave us “Root Deer” for Christmas; a six pack of IBC root beer in glass bottles dressed up as adorable reindeer with red pom pom noses, plastic googly eyes and brown pipe cleaner antlers. As soon as I set eyes on them (pun intended) I commented to Mike, “Of course these would have to be from someone who spends all their time with kids.” I thought they were too cute to drink. Jonathan didn’t.

Since I rarely buy soda, he was thrilled to discover them in the pantry but refused to drink a bottle until all the add-on parts were removed. I’ve found eyes, noses and antlers everywhere (sorry Bethany), under the Christmas tree, couch cushions, on the floor and patio table, in his room, laundry room and even in the garage. This morning a pair of eyes was in my bathroom, staring at me.

For all the reasons Jon gives me to feel nutty sometimes, he gives me plenty more to smile. As I did my morning routine in the mirror and saw those googly eyes looking at me from the rear view, a verse downloaded into my thoughts from 2 Chronicles 16:9, "For the eyes of the Lord run to and fro throughout the whole earth to show Himself strong on behalf of those whose heart is loyal to Him."

As a child, I was told God was always watching me, which was usually implied as a negative. He was waiting for me to do something wrong and keeping score; like Santa, making a list and checking it twice, keeping track of who’s naughty and nice.

Over the years of reading scripture and growing in knowledge and love for God, I’ve come to understand that, like any loving parent, He watches me because I am His child and He cares about my good. Does He see when I mess up? Yes, of course, but God is my Redeemer and His ultimate intention is to show Himself strong on my behalf and bring me back to a place of wholeness, health and stability. His strength plays out in my life in many ways: comfort, peace, love, grace, mercy, safety, instruction, guidance and correction, but always in what is best for me.

I’ve come to realize that life without God’s direction and care is not much of a life at all. As my heart remains loyal to Him, I can rest in the awareness that the Almighty God, Creator of the Universe, has His eyes on me! I don’t know if they are googly eyes or not. I’m just glad He’s always looking out for my good.

Psalm 33:8 But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love.

I Peter 3:12 For the eyes of the Lord are on the righteous and his ears are attentive to their prayer.

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I recently read a news story about a mom from Illinois who drove five hundred miles to Tennessee with her nineteen year old developmentally disabled daughter and left her in a bar-just got in the car and drove away without her. The state is not going to press charges because the state’s attorney said they have no precedent for such action and did not know how to proceed.

The mom reported she had been trying for ten years, with no results, to get help with her daughter, who has the mentality of a three year old and was desperate for an alternative living arrangement for her. I guess some folks resort to extreme measures to make a point. The daughter is now being cared for by the state. Comments from people, following the article, ranged from, this mom is a selfish creep who should be strung up by her toenails to actual empathy for her situation.

The news flash here is not all people with developmental delays are alike. Some are happy and compliant, some are stubborn and unreasonable and a few are downright aggressive and some swing back and forth at any given time through all of these descriptions. Some can work; others can’t or won’t follow the simplest directive. There is a broad range of cognitive ability, personality and behavior on the disabled scale. Most of the adults who get media coverage are those who function at higher levels of ability and do something that was once thought impossible; get married, live independently, become a violin virtuoso or someone like the boy with Aspersers (a form of autism) I recently heard about, who is going to compete on a popular TV game show because he has an astounding memory for facts and trivia. Many in the population, however, require constant supervision and care, and those who are difficult to manage from day to day create unimaginable stress on caregivers, parents, siblings, marriages and families.

You expect a toddler to act like a toddler and you can also pick them up and move them if they’re up to something mischievous or dangerous. But a nineteen year old who behaves like a three year old, might be taller than you, stronger than you and outweigh you and that creates an entirely new struggle that quickly converts to continuous exhaustion both emotionally and physically, leaving a care giver or parent overwhelmed and sometimes desperate.

Remember the 1990’s movie, “Honey I Blew Up The Kid” which depicted a stereotypical geeky inventor dad who accidentally turned his two year old into a giant? The over-sizedkid roams the town, inadvertently destroying things and putting him and others in harm’s way; developmentally he is incapable of sound judgement or reason. This movie is a somewhat accurate metaphor of the behavior of some adults with mental delays. Imagine taking care of your two year old forty years from now in adult form and you get the picture.

In an ideal world, people like this mom, would receive all the support and encouragement her situation warranted. While I certainly don’t condone what she did, after thirty plus years being Jonathan’s mom and main care giver, I can relate to her distress. There are too many days when Jon is so moody, stubborn, ornery, uncooperative and unbelievably slow that the minuscule events of everyday living turn into nonstop skirmishes and ridiculous drama. It is comparable to living with a perpetual adolescent.

There are moments when I wonder how much longer I can hold on, how many more years can we do this? But I love our son unconditionally so I put one foot in front of the other, day after day and plod on. When necessary, I count to twenty, fifty, one hundred, pray a lot, sing, ask God for grace, strength, patience, recite scripture, pray some more, look for the humor and laugh as much as possible. I participate in all forms of morally correct and legal stress relief to keep my wits about me.

And I write. I tell you the reader, what it’s like in this world so you will understand more, criticize less and possibly be inspired to lend a helping hand or a word of encouragement to a worn out, weary soul.

Many times throughout the four gospels; Matthew, Mark, Luke and John, preface the interaction of Jesus with people as, “He was moved with compassion...” When Jesus physically left the planet, the responsibility to be His hands, feet and heart in action, to a hurting world was transferred to us. Each of us can make a difference one person and one day at a time by seeing others through eyes of compassion, then inquiring of our own heart what can be done to reach out and give someone a hand or a break.

That is what Jesus would do and we can do no less.

Matthew 9:36 But when He [Jesus] saw the multitudes, He was moved with compassion for them, because they were weary and scattered, like sheep having no shepherd.

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The question that haunts every parent of a disabled child-what will happen to Jon when we are no longer here? The state will step in and place him, but we of course, won't be here to have a say in where he is put. Not all residential facilities are created equal and some are places you wouldn’t put your dog in, never mind your child. Some families have the means to private pay for long term care but for those of us who don’t; this is a problem that doesn’t go away and one that isn't discussed at presidential debates or anyplace else. This dilemma sticks to the back of our mind like old gum underneath a table, especially as we and our child age.

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