Life In A Fishbowl

I was chatting with a young lady yesterday who has undergone gastric bypass surgery and lost an incredible amount of weight. Surprisingly, she shared that she has never been as self conscious about her body image as she is right now. I told her that it was because people are watching her carefully. We are curious, and proud of how she is changing her life to take better care of herself. All eyes on are her as she makes this personal, yet very obvious journey.

I get it. I too, live in a fishbowl.

I’ve undergone some major changes myself, over the past few years. Mine haven’t been quite so obvious. Mine have been mostly on the inside, unseen and barely noticed by the layperson. It has been a very personal, painful journey for about 10 years with some very significant valleys. It has left some very deep scars from wounds that are easily reopened, leaving me fragile and weak.

The enemy wants me to feel afraid, lacking confidence, whispering all sorts of lies into my soul. But with a whole lot of prayer, studying, and coaching, I am slowly and carefully taking my life back.

I thought I’d share some of  what I’ve learned. Maybe it will help you in your walk.

For those unfamiliar with my journey, my husband was diagnosed with Frontotemporal Dementia in April of 2013, at 47 years old. To be honest, we have seen significant behavior changes for about 10 years. It is a terminal diagnosis and on average, the life expectancy is 7-8 years from diagnosis. The good news is that he is able to stay at home during the day, under the watchful eye of our youngest daughter and our youngest grandchild. He would really like us to just leave him alone, but our resident 2-year old, insists that she be by his side at all times. They are two peas in a pod, and share a similar schedule. We attribute how well he is doing, to her. She won’t allow him to retreat, and as hard as it is, she forces him to stay in the present. He deals with chronic unmanaged pain, with a torn rotator cuff, varicose veins, and a body riddled with arthritis.

I have just begun my 30th year of teaching. I’d love to tell you that it is “old hat” by now and that I do my job on autopilot, but that is not the case. The demands of teaching have increased to an almost unmanageable level, with excruciating expectations surrounding constant curriculum adjustments and changes, test scores, standards alignment, observations and evaluations, goal setting, and behavior management. I love teaching, but the high stakes demands make it the most challenging part of my life. It makes the dementia journey feel like a cakewalk.

Welcome to my fishbowl.

I know I’m being watched. Some are curious. Some are sympathetic, and some want to be in the ring with me. I know there are a lot of people who are quietly and faithfully praying me through, one storm at a time. For that, I am truly grateful.

I too, am working on self care. Brene Brown and Lysa Terkeurst have been my “go to” books of the summer. I read THE GIFTS OF IMPERFECTION and UNINVITED over the summer, along with a couple really great devotionals. I’ve learned a lot about myself.

I’ve been in a shame storm for a very long time. I am a self reflector by nature, and I have a strong sense of right and wrong. There truly is no one harder on me than me. When I am corrected in any way, I hear: “You are bad,” feeling less than, not enough, and small. This has left me feeling inadequate and like a failure in areas where I once felt confident.

What am I doing to get out of this storm? I’m talking about it and making a plan. Shame cannot survive being spoken.

First, I have been actively leaning into JOY by practicing gratitude and forcing myself to be part of the human race. I want to love and forgive, helping others to see their self worth. I want them to feel loved and lovable. I am not allowing negative self talk with myself or others.

In my classroom this year, I am focusing on what we have control over, especially  kindness and gratitude. I want a shame resilient classroom, and I want to teach the little people that I work with to make the world a braver place. I want to teach them tenacity and perseverance, and to be scrappy. I want to teach HOPE and live JOY. My plan is to help them by creating boundaries, consistency, support, and to tolerate disappointment, because that is a life skill.

I want to develop trust-filled relationships and have a forgiving spirit. This has been huge for me. I didn’t realize that I was harboring such resentment, and that in order to move past it, I needed to forgive those who have hurt me deeply. Lysa Terkeurst reminded me not to resist forgiving because God made me For Giving. When I decrease, God has room to make big things happen. I want to be an example to others.

It takes great vulnerability to feel JOY. I cannot carry around past burdens. I need to let them go, lay them down, and keep walking. I cannot live, waiting for the next shoe to drop. I need to practice gratitude in the moment, one day at a time. According to Adela Rogers St. Johns, “Joy is a step beyond happiness. It is a light that fills you with hope and faith and love.”

Shame loves perfectionists. That’s me. According to Brene Brown, it’s easy to keep people like me quiet. We are people pleasers. That’s a problem, because it often leads to self blame: “I’m not good enough.” I am working to recognize shame, and talk to trusted supporters when I feel like I am entering a shame storm. I am working to develop courage, compassion, and connection. I want to resist destructive behaviors when backed into a shame corner and turn it into gratitude.

I want to be courageous and authentic. I want to have self compassion and change the course of my life. I want to be so kind to myself that it overflows into others. I want to set reasonable goals, be flexible, and believe in myself because with God, all things are possible.

I want to add quiet into my life and just be still. I want to read, lay in the sun, watch the waves lap against the rocks, and take a nap. I want to feel alive again. I want to live like I matter and I want to love with my whole heart. I want to be brave. I want to allow Jesus to speak intimately to me because silence allows me to hear the voice of God (Ecclesiastes 3:1,7).

I have been reminded that God loves me and will protect me from trouble. His angels guard me and lift me up with their hands. He will save me from my enemy who has set traps to snare me. He will cover me with his feathers and under his wings I will find refuge. When I draw close to God, he is there. I am not alone. His shelter and shadow comfort me in my loneliness. he lifts me up so that fear no longer has access to me. (Psalm 91). I’m not set aside. I am set apart. I am important, valuable, and secure.

Lysa Terkeurst reminds us me that God isn’t afraid of my sharp edges. He doesn’t pull back. He pulls me close. He is close to the brokenhearted and saves those who are crushed in spirit (Psalm 34:18) If I allow it, God will use my heartbreaks to make me stronger and take me further. Emotions will ease over time and I need to remember that God is protecting me through my rejections even though I may not see it. I need to remember that rejection is not a projection of future failures. It doesn’t label me. I need to adjust and move on.

Rejection piggybacks on physical pain pathways in the brain. Neurologically speaking, that’s why it hurts so much. For me, it’s when I don’t feel like I belong and that I am invisible, which impacts my health and happiness. (A suggestion is that when I’m headed for a shame storm: take Tylenol. I’m going to try it.)

I am committed to practicing empathy. Empathy is an attitude of “me too.” EMPATHY  is not having the answers, but having the willingness to sit beside a friend, and lovingly listen. No, “You should…” or “You could…”, just “Me too”. I want to be transparent and show people my troubles, so that they can trust my advice. Sometimes it’s nice to know that someone else has “been there and done that” and lived through it. I want to speak with honor, with peace, and good things. I want bitterness, resentment, and anger to have no place in my heart because what consumes my thinking will be the breaking of my identity. I want to live loved. I am my own exact brand of beautiful and I want to help others to feel that way too.

Come join me in my fishbowl. I’d love the company.

 

 

 

 

 

 

 

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Wow!

I love the Timehop application on Facebook. It allows opportunities to look back in time and reminds me from where I have come. This week, I was reminded that 5 years ago we received my husband’s cognitive evaluation from the Brain Center. We had escaped from civilization and were spending some time in Florida with our son and his family. We were just 48 years old. I remember feeling relieved that we had received answers, yet terrified.

A whole lot has changed since that point in time. We have met with many specialists, joined support groups, put our affairs in order, and learned a whole lot about the world of Disability and Social Security. We were financially fractured, and are only now showing signs of recovery.

There is a lot of sadness that comes with a dementia diagnosis. Honestly, I struggle with preparing to lose my husband and becoming a widow. My biggest fear is being alone. Yet, I know that it is going to have to be part of my journey. I fear the financial impact. Will I be able to sustain my standard of living on my own? I’ve spent 5 years trying to whittle down our debt so that when the time comes, I don’t lose everything. I don’t know where I’ll live, but I know I can’t stay on the mountain. It’s too much for me. My prayer is that the next family will love it as much as we have.

So many unknowns. I feel like he’s the weight to my helium balloon and when I lose him, I will become weightless and simply flutter off with no real purpose.

On average, people diagnosed with Frontotemporal Dementia live for 7-8 years from the time of diagnosis, and his diagnosis was retroactive to April, 2013. Every person is different because they all have their own unique medical tangles. My man is what doctors label as “complicated”, so this means that on average, we are down to the last couple years.

That being said, we have been absolutely floored with what he has been able to do this summer. He decided to build on to our north deck and repair the front steps. He watched some YouTube videos and then designed an absolutely gorgeous deck. It was totally not in our budget, and will take us a very long time to pay off, but it is absolutely amazing. He’s still putting on the finishing touches, but it looks incredible!

These are the repaired front steps with a railing.

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This is the addition to our north side.

What impresses me most, is that despite obvious deficiencies, he is still able to do what he loves. He doesn’t recognize most people any more, although he can tell stories about them as we pass by their homes. He has not been able to tie his shoes or drive a car for years. We can’t take him out for long periods of time, because he tires easily. When overstimulated or overtired, he becomes debilitated- shivering, rocking, stuttering, and staring. Yet, he can still mow the lawn, fix the car, repair the porch steps, and build a deck. He cleans the house, washes dishes, and does the laundry.

I am honestly in awe, and I thank God for His blessings. Mostly I thank Him for His mercies and providing clarity so that my husband can still do what he loves to do best. The more we can keep his mind active, the longer we keep him with us. I’ll get the Home Depot card paid off eventually, because what this has done for my husband, far outweighs the debt. I just want him to be happy.

And he is.

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Filled to Overflowing

We celebrated our 32 wedding anniversary on Thursday, and although my husband doesn’t remember anyone who was in our wedding except the two of us, or anything about the day, my heart is happy.

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I can’t explain it. It has been another challenging year in the classroom, yet I can’t help but feel blessed as we near the end of the school year. I feel real JOY.

How can I explain my present state of mind? Honestly, I attribute it to a variety of things. Most importantly. I have spent a very long time in the book of Daniel. It has been one of the best studies that I have done- healing my fragile heart.

Daniel was an educated man who was groomed to become wise counsel to the king. He, along with 3 other men: Shadrach, Meshach, and Abednego were role models from the Old Testament. They faithfully stayed spiritually clean despite many outside challenges. One of my favorite stories was when Shadrach, Meshach, and Abednego were thrown into the fiery furnace for their faithfulness to God. Observers said that they saw 4 people walk around inside the ultra hot furnace- illustrating that we never walk alone. They walked out- absolutely unsinged. At one point, the king was tricked into putting Daniel into the lion’s den. Not only did Daniel pray, but so did the king who felt terrible. As a result, Daniel walked away unscathed. Daniel’s wisdom and intense, sincere prayer life has been a huge testimony to me. Not only did he believe, but he lived out his deep and sincere faith.

I’ve been trying to do just that. No matter how high the heat is turned up, I have been asking for wisdom, strength, and courage every single day. I have also worked on praying for those who aren’t very nice to me. I have truly worked toward praying palms up. I no longer ask God to take me out of the furnace. I ask him to walk with me.

I’m not saying that it easy. I’m just saying that I am working harder at it. My mom used to say that our best traits are often our worst. I am hyper-sensitive. I have a huge sense of right and wrong, and when I feel like I have done something wrong, I beat myself up over it for a very long time. To say that I an overthinker is an understatement. I hate confrontation and I run from it at all costs. I want desperately for everyone to just get along.

St. John’s Wort is a wonderful thing. I used to take it when I (or another family members) thought I needed it. Now I take it daily. I have also added a miracle essential oil called Copaiba through Doterra. Two to three drops under my tongue in the morning, along with Lavender, Cedarwood, or blends such as Cheer, Serenity, or Balance on my wrists and neck make my day go smoother. I even bought an inexpensive necklace that I can put a couple drops of oil into. I wear it nearly every day. I have also worked hard to get enough sleep, drink boatloads of water, eat more protein, and less junk. All have helped.

My job is still hard. I often feel like ocean waves slam me against the rocky shore. I never know when the next set of waves are going to come down on me so I often feel unprepared. The demands of the job continue to become greater. However, I have also come to learn that I am no different than anyone else. We all have it hard. Life is challenging for everyone. So, I have taken to noticing eyes: the eyes of my coworkers and loved ones, including those who don’t like me very much. I’m trying to take notice when people need a little extra encouragement, killing them with kindness. How can anyone be upset with you if you are being nice to them?

You know what has happened? When I push through my fears and my sadness, spreading kindness and encouragement, I am encouraged.

Is it foolproof? NO. This week was particularly difficult. I feel like I barely made it through the week. I am battered and bruised. However, I am currently sitting on the back deck with my feet up, listening to inspirational music, looking out over the countryside feeling genuinely blessed.

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I have plenty of reasons to feel sorry for myself, but I refuse to. It’s my decision to choose JOY and be happy with God’s hand in my life, but mostly his promise to never leave me. My glass isn’t half full, it’s overflowing.

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One More

April 18, 2013 and April 1, 1016 are significant days that my family will always remember. Like marks chiseled on a door frame, they will be forever engraved in our minds. They will make us swallow, stifle a tear or two, but mostly make us stop and praise the Lord that we were given a precious gift of a few more years with our most special man.

First, he was diagnosed with (FTD) Frontotemporal Dementia, which is caused by progressive nerve cell loss in the brain’s frontal lobes (the areas behind your forehead) or its temporal lobes (the regions behind your ears), most likely caused (or sped up) by 4 significant blows to the head. Three years later he survived a stroke, which left him wheelchair bound for 10 months.

I don’t think we are alone in measuring time by landmarks: when we were married, had our children, grandchildren, moved, changed jobs… But never, did we celebrate them like we do now.

One more.

We were told at the time of the diagnosis that my favorite man had (on average) 6-8 years to live from the time of onset. On April 18, my husband will have reached his 6 year anniversary.

Honestly, we feel like he is doing well. There are seven stages of FTD and I would guess that he falls in the fifth stage. On average, a dementia patient remains in this stage for about 4 years. As long as we keep his world small and predictable, he continues to be highly functional and needs minimal assistance. At this stage, my husband is quite easy to manage and remains fairly content.

What this means is that we don’t look too far into the future for anything and we celebrate nearly everything. It makes me think: What if everyone looked at life as “one more”? What if we slowed down and stopped looking toward the next —- and just celebrated today- the wonderful, beautiful today?

Today we took our first walk of the season to the ocean, and had one more ice cream. We sat on the warm rocks and watched one more tide roll in, and listened to one more windstorm.

Perhaps we all need a mindset change. Instead of “sitting through one more dreaded meeting”, we looked at the time as one more opportunity to gather with colleagues? Instead of “one more work week”, we looked at the blessing of a job that fulfills us?

Everybody has a hard job, and everyone goes through hard times. But what if… What if we took the time to be thankful and joy-filled because God has graced us and blessed us with “one more”?

One more day to say “I love you.”

One more day to hold his hand on a walk.

One more day to close my eyes and feel the warmth on my body while listening to the waves slap against the rocks, smelling the salty air.

There will come a day when I will miss watching the 2016 election, putting down the toilet seat, and running into furniture that has been moved yet again. There will be a day when I will plead and beg for just one more day.

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Win! Win!

I went to Wal-Mart yesterday and I only lost my husband once. I consider that a win, win! It isn’t uncommon for any of us to misplace our loved ones on occasion. However, in our case, we are preparing to hit the 6-year anniversary of one of my husband’s worst days of his life: the day that he lost his job of 17 years. It is also when we began to realize that something was very wrong.

Honestly, it has become a blessing. I believe that removing that stress has added both quality and quantity to his life and as a result, our marriage has never been sweeter. Yes, he has dementia. Yes, we know what that means. However, it isn’t all gloom and doom. In fact, it is mostly fine.

My husband is the same old goofball he’s always been. This week I found oven mitts in the frig. This Fall, he had somehow managed to get the entire coffee maker in there. I eventually found out the reason for the coffee pot: to keep the ants out. (Naturally!) I am convinced that there is some equally good reason for the placement of the oven mitts. We just don’t know what it is yet. Perhaps it is to have nice cold mitts to take hot items from the stove and this is the beginning of a new trend!

He still likes to go on short trips to meet up with familiar people. Yesterday we ran errands on the way to have lunch with friends- hence the “quick stop” to Wal-Mart. We went in for 3 items: shoe goo, coffee creamer, and toothpaste. We came out with $115 worth of things we “needed”. (My man just loves to shop!) During check-out he needed to use the restroom and didn’t return. The cashier patiently allowed me to scoop up my favorite guy, who was standing outside the bathroom, looking all around. He wasn’t upset. When I asked him if he was lost, he said, “I was waiting. I knew you’d find me.” I reassured him that he did exactly as we have taught the kids to do, and he nodded his head, proud that he had done the right thing.

Once leaving the store, he became concerned about all the cars in the lot: “Our car is lost.” I always make it a point to talk about where our car is and landmarks surrounding it, when we park. Yesterday, I had announced that we were nose toward the Home Depot flag. He followed my directions as I instructed him where to go, even though he didn’t quite believe me, and he was relieved to find the car.

It made me wonder, how much does that happen during a typical day? How often is he “standing outside the restroom” or “searching for the car” until his brain catches up or until one of us gently finds him and brings him back, or guides him to where he needs to be?

We have had to remind him on several separate occasions that he has just had his 53rd birthday. He keeps forgetting and sometimes doesn’t believe us. One minute he’s in a fog. The next, he is perfectly clear. Yesterday he told our friends, “I don’t know why people say that you are another year older. You are only one day older than the day before. What’s the big deal?” (He’s right you know.)

He’s a nerd. He has always been a joker. My brother said the other day, “I can’t tell if he is legitimately confused, or playing with me.” He’s right. When my brother wished him happy birthday, my favorite man seriously said, “It’s my birthday?” When he told my husband his age, he replied, “That can’t be. That’s old.” 51973075_10218188709851508_3315212005115166720_n.jpg

When I ask him if he feels 53, he tells me that he feels older. He says that he hurts, is tired all the time, and that he hates his gray hair. Some days this is particularly obvious and he can barely function all morning long. He just sits in a daze with his hand over his eyes. He can’t hold a conversation, or even feed himself. But after a nap, nine times out of ten, he’s back to his old self and pontificating about current events. Mornings are often rough- slow to get going, and evenings are generally when he is the most clear. He matches the weather. If it’s a foggy day- so is he. He doesn’t seem to be experiencing “Sun Downing”, which is common of those who have been diagnosed with Alzheimer’s. (A fog when the sun goes down.) In fact, he prefers the evening (with the lights on) and sleeps better when the sun is out. When I ask him about that, he says that he “doesn’t like the dark”.

What’s really strange is that he knows ABOUT many people. He can often hold a two-way conversation about friends, family, and community members. Yet, he has no idea who they are when he sees them. The kids and I prep him before gatherings, but it’s a crap shoot. Sometimes he’s fine. Sometimes he’s a hot mess. Sometimes he’s fine for a bit, and ends a hot mess. Generally, we can take him places where we are pretty sure he isn’t going to know anyone and he is fine- like the ocean, the grocery store, or Home Depot. Failure tends to come when we take him to places where he feels like he should know people or people might know him.

This even happens at home. After Christmas we had a small gathering of friends from church come to the house. He cooked, cleaned, and talked about many of the people who were going to be attending. However, as soon as the first guest entered the house, he began to stutter, stare, and shake, so my daughter shuffled him off to watch a movie in the bedroom. He was much happier with the baby, some snacks, and REMEMBER THE TITANS on the TV.

It’s weird. He misses people, but he wants to be alone. He wants to go places, but he wants to stay home. So, if we can get him out into public and only lose him once, I call that a WIN, WIN!

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LOOKING FORWARD

I’ve been told my whole life not to look back: learn from the past, make a plan, and move forward. I do that by planning things to look forward to.

So what do I look forward to?

I look forward to weekends, snow days, and vacations. There is nothing I love more than being home. No alarm needs to be set. There are no plans. Most of the time, I just sit with my favorite man- doing schoolwork, balancing the checkbook, filling shopping carts that I never submit, and watching lengthy TV series with multiple episodes. Yet, it is where I am happiest.

This week I had a spontaneous snow day. My guy was having a rough morning. His mood often matches the weather, and it was overcast, snowing hard, cold, and blowing. We weren’t plowed out, and the 2-hour Delay wasn’t long enough to get us cleaned out, so I stayed home.

A bad day means lots of staring, word finding challenges, and slow reaction time. He gets cold, but instead of asking for a blanket, he just crosses his arms tightly across his chest. A loose grip around his coffee cup means that when it is removed, his hand stays in the gripped position. A return kiss on the lips is delayed no matter how many times it is attempted. He can’t answer basic questions, give eye contact, or tell me what he needs. He doesn’t even rock in his chair. He stares and doesn’t blink.

If I can make a bad day better just by sitting with him, then I am happy.

The good news is that most days are fine. As long as his world is predictable, quiet, and with little stimulation, he has good days. He is his best when he sleeps in, naps in the afternoon, snuggles with his favorite redhead, and has alone time after everyone goes to bed. He loves projects and misses the sun this time of year. He still reads political books, plays Words With Friends, watches the Justice Channel, and enjoys a good TV Series. He still cooks, cleans, and shovels snow. These things make him happy.

My happiness is directly proportional to his.

There was once a day when I looked forward to far more, but today I’d give anything to never leave his side.

 

It Takes A Village

A colleague reminded me this week that we all have people in our circle who watch over us. She referred to the support system as a village, which has left me thinking.

In the world of teaching, we often feel isolated. It sounds funny, that a unit of like-minded people could work together, yet separately, and feel lonely. After all, we have little people all around us and we work with a large number of adults. However, the reality is that we have little time for personal social interaction.

Some people are perfectly happy being alone. I am not.

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My favorite time period of teaching was the 13 years that I team taught. My co-teacher and I worked like a finely tuned machine. Her strengths were my weaknesses and mine were hers. We complimented each other. We worked primarily in the portable classrooms, just outside of the school building, and renamed it the Learning Cottage. We created our own village. We all loved it out there. It was like a little 2-room schoolhouse that included 40 children. Quite honestly, it was at the highlight of my teaching.

We weren’t made to live in isolation. Even wolves travel in packs. I think we were designed to be part of like-minded groups. Those units shift and change, but I believe that I am a better me when I am around loyal people with like-goals, who sincerely want to be with me.

We live in a naturally competitive society and I am not competitive in any way shape or form. I don’t want to ever draw attention to myself. I don’t like confrontation. I want to blend in. I am a team player, and have very high expectations for myself and others within my small village.

I am faithful to a fault, and sometimes I get burned because I am so trusting. Sometimes in a pack, wolves turn on the old and the fragile. I am not old, but I’ll admit that I am fragile. Sometimes it takes my whole village to keep me moving forward. I am so thankful for them.

A small Gift Card is often left in my school mailbox to help with groceries. I am so thankful for the anonymous villager who is quietly watching over me. It helps to ward off the loneliness. You’d be surprised at how many times that card has pushed us through- the exact amount needed to get us to the next paycheck. Whoever you are, I pray that you are reading this. I am so thankful for your commitment to making me feel cared for.

Our world has become much smaller as my favorite man forgets people he rarely sees. I find it interesting that he talks about people as we pass by their homes. However, if those same people pop into our house, he often doesn’t know who they are. He is lonely, but he doesn’t want to see people. It’s too scary because they know him and he doesn’t know them. (If I think about it, if a stranger showed up insisting he knew me and I didn’t recognize him, I would be terrified and I wouldn’t want to let him in.) We don’t travel very far or for very long. It’s too scary. This means that our short outings are predictable, and generally places where he won’t run into anyone.

A few years ago, I shared our dilemma with our pastor. His response: if people (the village) don’t come to me, then I (because he won’t go) need to go to the village. The snag is that I am needed at home as soon as school is over. My guy paces and waits for me by the window every afternoon, waiting for my return.

So, to the faithful members of my small village: you know who you are, THANK YOU. You give me strength, encouragement, and talk me off the ledge when my nerves seem like they cannot withstand one more obstacle.

Today I am thankful for the sweet moments that I get to share with my favorite man and that I am not alone.

May the members of our individual villages be patient in tribulation, bless those who persecute us, and abhor evil. My prayer is that everyone is a part of a intimate village that lifts and encourages one another no matter what the time and the hour. May we use our individual gifts to strengthen each another. Together may we all rejoice in hope, cleave to what is good, and always display love. May we not go through the motions, but instead, be a wise and cheerful blessing. (Romans 12)