The Great Outdoors

No, I did not climb a mountain, traverse a nature trail, raft the rapids, or fly fish in frigid waters.  I simply left the house.

Leaving the house is a pretty big deal for me.  The length of time between outings had grown longer and longer; it had, at times. stretched to more than a month.

My ability to get out and about independently is long gone, so my appreciation for the times I do get out is that much stronger.  A simple trip to the store can seem like an exciting adventure.  It can sometimes feel like its more work than its worth because there is so much involved in getting me out the door; but it feels good to see that there is, in fact, still a world out there.

 

“You have to get an accessible van”, a good friend said repeatedly (can I overcome the nagging guilt?, I wondered).   “You’re worth it”, a loved one said many times (am I?, my conscience questioned).   We took the plunge and spent the money for a modified minivan that is wheelchair accessible.  We learned all of the information required to use it, and set out for adventures that awaited us.

The van has now taken us on many outings.  It knows the route to our local Walmart well and has traveled the trek to bigger places beyond our city limits.

It’s still not easy.  Nothing about leaving the house will ever be easy again, but its much easier for me than it was to get in our other vehicle.  Trips anywhere are anything but spontaneous and going out of town requires a strategically planned schedule; but it can be done, and I am grateful to be part of the outside world when I can be.  While it’s easier for me, it has been and is more work for Mr. Legs as he has had to learn how the special features work and sometimes must fasten and unfasten my wheels.  I look at Mr. Legs in the driver’s seat and am thankful to have a personal chauffeur who loves me enough to overcome the cost and inconvenience of our new vehicle, thereby saying “you’re worth it” to me with our resources, and his time and effort.

 

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McFail

We got in the van and looked at each other with half smiles.  Traveling, for us, can be complicated.  We were guardedly excited about making the four-hour trip to be in the big city for the next two days.

Before pulling out of the driveway, we took quick inventory of all of the needed items that had been carefully packed for the trip.

Clothes?     Check.

Toiletries?   Check.

Wrapped gift for the party?   Check.

Extra cash to purchase anything we may have forgotten?   Check.

Full tank of gas?   Mr. legs had remembered that too.

 

About half way there, we realized we hadn’t factored in sufficient time for a bathroom break (no quick task for a wheelchair user). We could still get there on time, barring any unforeseen delay.

As planned, we stopped at a McDonald’s for lunch.  While not on the top of the list of healthy options, most everything on the menu there is quick, portable, and travel friendly.

I put in my order, requesting a hamburger, a berry smoothie (counting as a fruit, of course), and a pack of three chocolate chip cookies.  Mr. Legs would be ordering his usual McDouble and an iced tea.  The McDouble, while no longer on the dollar menu, is still a bargain.  I waited in the car while he went in to get the food and mix his own iced tea to his preferred taste.

He returned to the car with his cup of iced tea and that familiar McDonald’s paper bag.  Experience has taught us to take inventory inside the bag to ensure we were given our complete order.  Sure enough, they had forgotten the burger I wanted. So it was back inside for Mr. Legs and then out he came again, this time with everything he had ordered.  It was a good thing we checked the quantity in the bag. We congratulated ourselves on catching the mistake () before getting on the road and then took deep breaths as we continued on our way.

Hungry, I started eating right away.  I had almost finished my hamburger by the time we merged back onto the highway.  When the cruise control was put on resume, Mr. Legs was ready for his food.  I reached into the bag and pulled out the wrapped McDouble they had put on the bottom of the bag (the sandwich they had originally included in our order).  I arranged the wrapper for him, so he could easily eat the sandwich as he drove.  He took his first bite, then began telling me that they said McDonald’s cookies were no longer sold in packs of three, but were now sold individually.  He chose to buy three anyway.  We discussed this serious change to the menu and how it might affect our future visits to the golden arches.

 

As he took a second bite of his hamburger, I noticed his face change to show a look of both curiosity and disappointment.  Oh no, I thought, they must have put pickles (he does not care for pickles) on that burger.  While also paying attention to the road, he placed the burger on his lap and lifted the top bun off.  He looked with disbelief.  There, inside the bun, you could clearly see two pieces of cheese, a hint of ketchup, and mustard.  That was it.  Just two slices of cheese, a little ketchup and mustard.  Something was definitely wrong…..something was missing.  He kept glancing down at it and, after processing what he was seeing, said “I didn’t even get ONE.  Not even a single meat patty in my McDOUBLE!  Then, after a slight pause, he looked sadly at his empty bun and said “I got a McZERO!!”

This particular McDouble was not a bargain, and was certainly part of an UNhappy meal.  Who knew that we should have checked INside each wrapper earlier?  We had checked for quantity, but not for quality.  We didn’t have time to go back, or stop at another place.  Having only a bite or two left of my own burger, offering him half of mine was not an option.   While he was grateful there were no pickles, he commented that cheese and mustard, without meat to bring them together, were not a great combination.  He begrudgingly finished eating his cheese and mustard sandwich, but not before I took a picture.

 

When he had finished his McZERO, his puppy dog eyes looked over my way and timidly asked if he might please have a cookie.

I gave him two.  (We were glad he had gotten three.)

He ate them, and looked forward to supper.

 

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The Waiting Room

It was yet another required doctor appointment.  Mr. Legs took more time off from work to take me.  We arrived early, as requested, checked in, and started filling out the necessary paperwork.

Sitting there in the waiting room, I tried to hold the office clipboard, a pen, my paper folder containing relevant documents for that doctor and my medication list, a small purse holding my identification card and insurance card,  the eyeglasses I’d just taken off (that work for further distance) to replace them with the ones that work for close distance, all while balancing my bum on my small scooter and trying to keep my left leg from flopping so far over that I risk it pulling my foot off the scooter floor.  I was anxious to get the forms completed before being called back for my appointment.

It was in the middle of my concentration on those things that an older gentleman sitting across from us chose to interrupt and say “I’d like to give you my card”.  After a short pause, I’m quite sure I met his eyes with an irritated scowl and replied   “what are you selling?

They are all over, people who are sure they know how to improve your life or get you on your legs again with what they are selling.  They disguise their marketing pitches or their feeling of superiority with concern.  Whether its a particular vitamin, a miracle diet, an essential oil, a prepaid funeral or a religious belief, they are certain they will be the messenger that makes a difference in your life.  I do truly appreciate good intentions, but after so many years on wheels, there’s a tendency to become skeptical and cynical.

The man who said he wanted to give me his card reached into his pocket and pulled out a small thick piece of paper and presented it to me.  There, in the center of that business card sized piece of paper were only two words in bold print.  “My Card!“.

I cracked a small smile, but a smile nonetheless.  The man laughed loudly, obviously pleased with himself that he had lightened my mood.  As he laughed, his whole body moved with delight.  “Clever”, I said to him, and he answered with a look of complete satisfaction.

All he had wanted to share was a smile – a bit of happy on a piece of paper there in that doctor’s office where almost nobody is there for a pleasant reason.  I finished filling out the forms and turned them in at the front desk.  Soon my name was called and I passed through the clinic door, returning to a more serious mood as I met with the nurse and then the physician’s assistant.  But I took my “My Card” card and a less tense facial expression with me.

I keep that card near my computer.  I grin whenever I look at it and I can still see that man’s face and his hear his laughter.  I wonder how many other people he has shared his non-business card with and how many smiles he has both collected and given because of them.  Very clever, and also very kind.

Lesson learned.  Not everyone wants to sell something.  Some people just want to share a free smile.

 

 

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Bumps in the Road

Normal bodies are powered/fueled by food, water and sleep.  The output of human strength can reflect the amount and quality of input it is given. Needed strength  varies from day to day, and balance is found when input equals output.

When a body doesn’t work normally and movement on its own is limited, the owner turns to wheels.  Some can use wheeled walkers and/or manual wheelchairs, still powered by a user and his/her food, water and sleep.  Some need electric scooters or wheelchairs which don’t require a lot of power by the user; the power for those comes from electricity through a battery.  Electricity replaces human strength.  Seems simple enough, right?

The premise is simple, but the execution can be complicated.  Batteries can only put out the energy that is put into them.  Just as human strength is limited and must be recharged by regular food, water and sleep, so must a battery be checked and recharged with electricity routinely or it won’t function properly.  A person using an electric wheelchair must fuel his/her body and the wheelchair; but unlike internal signals like hunger, thirst and fatigue; a battery’s strength level is evident only by an external indicator, usually a dial or series of bars on the vehicle.  A user must constantly monitor the battery power level to know when recharging is necessary.

Just as physical energy can sometimes be depleted without actively noticing warning signs, the level of battery strength can be overlooked and low or no power can come as a surprise.  With many other things to remember, sometimes checking battery strength is  forgotten, and movement can stop abruptly.   There have been times when I have managed to maneuver my chair near the charger just as the last red warning bar fades and  disappears, and I breathe a sigh of relief that I reached my destination.  There have also been times when my battery has completely died in the middle of a hallway.   Electric wheelchairs have a release button which allows manual movement, but they are heavy machines and moving and steering them manually can be challenging.  The times when my chair battery power is completely drained are pauses in my path, bumps in the road.

When a power source ends, waiting begins.  Hopefully, when it happens, the user isn’t on the way to the bathroom or caught with nothing to do; and hopefully, someone is available nearby to help.  If not, the user is trapped and a longer waiting time is required until someone can help.

One day, when I suddenly realized my chair battery was almost dead, I managed to get its heavy charger and roll into place near an open electric outlet just before the power was depleted.  I plugged one end of the charger into the chair, then the other end into the wall outlet.  I took a deep breath and started the wait for the battery to recharge.  At the time, my frustration was high and my spirit was low.  I lamented to myself that I would be there for some time with not much more than my thoughts and a partial view out a lace-covered window.

I looked around me and realized my wheelchair was sitting where our piano once was.   It had been sold after the kids were grown and left home, and MS had taken too much of my hands to play.  What had once been an instrument had sadly become just a decoration.  I had put most of the music in a box and stored it, but I kept an old hymnal out and placed it on a table.  There it sat, not too far from me.   And…..if…..I….could….reach my arm out just…..past…..my….. comfort zone….YES!  I got it!

Damaged by MS, my voice isn’t much to listen to; but, thankfully, God hears the heart.  I searched that old book for familiar titles and started humming a melody.  Words followed and peace began to replace frustration, until I was genuinely enjoying the break in my day.

Time flew by.  Soon Mr. Legs was home from work and my chair’s battery was charged enough until a full nighttime charge could take place.

What had seemed like a bump in the road of my day, ended up  being a rest area.

 

 

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Hotel Accessibility Review – Hampton Inn


We stayed at the Hampton Inn St. Louis/St. Charles, Missouri for two nights.  We had reserved a block of rooms for an event.  The sales manager who coordinated our block of rooms was delightful to work with and very helpful during the many months we planned.  The rest of the staff was pleasant during our stay and one particular desk employee was quite fun, even volunteering more than once to take pictures of our group during the times when we were gathered together there.

The breakfast room, although it seemed a bit small for the hotel size, was a great place for family to congregate and visit.  Some in our group really enjoyed the pastries at breakfast and many appreciated the complementary coffee and fruited water in the lobby area.

Upon entering our room, I was happy to see that a major design flaw in most accessible hotel rooms had been remedied there.  In many hotels, the wide bathroom door, when open, blocks the path to the main door.  For those on wheels, a number of forward and backward movements are required to gain passage one way or the other.  The design of this room was quite different as a pocket door was used for the bathroom, thereby eliminating the need for a door to swing out.  The pocket door included engraved glass with a nice message.

 

Difficult to read on this picture, but it says “It’s a happy day in a happy place.”

If the door’s handle had been placed differently, just two inches to the side, it would give that much more clearance for the width of a wheelchair.   Still, the opening was sufficient and it is a great idea to use a pocket door!  Collisions with the swinging door were not missed!

The sink area had a bar/handle placed in front to help pull up to it, but I found it to be more of a hindrance than a help as it prevented me from getting closer to the sink.

There were good grab bars around the toilet.  The toilet paper holder was different, and may have been appreciated; but it was loose and the roll of paper fell off and rolled away a number of times, leaving someone like me with limited options.

  

Often, hotel accessible bathrooms install a seat in the shower far away from the shower controls and nozzle, rendering it useless; but the placement in this one was done well, making it very functional.

 

We enjoyed our stay there.  We rate it as one of the best hotel accessible bathrooms we’ve seen.  The winning feature was definitely the pocket door.     

 

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Funnel Shaped Foliage

I watched their progress out the front window of our home.  Seeing them sprout each year seems the same, yet new, every time.

They grow rather tall.  Last year we were sure we had a look alike weed trying to take them over, but this year we think the sprouts might do a practice run/season before producing blooms.  We don’t know much about them – their proper name, best growing conditions, etc.,  and I think if we researched it, it could take the fun out of experiencing them as they happen.

There seem to be many different kinds.  Most people are familiar with Easter lilies.   I know that peace lily plants are popular at funerals.  Where I grew up, there were an abundance of striking orange and black tiger lilies.  Around here, bright yellow daylilies flourish.  The lilies in our yard are a pretty pink, and even different shades of such.  We didn’t plant the bulbs (we have the previous owners to thank for that).  A few  years ago, we hired out a landscaping project that could have affected their survival, and we often forget to water them.  Yet they grow.  We just assume they will show up each year, and they do.  This year, they have grown even better than before.

My MS and current physical state bring with them valid concerns.  Meeting basic needs is beyond my ability, so I need help to survive.  “What if” worries pile up sometimes.  I look at the lilies and remember reading about them in the Bible.

  

The book of 1 Kings talks about the tops of pillars being in the shape of lilies (1 Kings 7:19 and 22), Psalms includes songs with the word “lilies” in them, and the book of Song of Solomon mentions gardens of lilies and gathering them.  Luke 12:27-32 says “Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these.  Do not be afraid, little flock, for your Father has been pleased to give you the kingdom.”  The Bible is full of wisdom; some of it easy to understand and some parts can be challenging.  There’s no doubt that it clearly tells me not to worry, and I struggle with that at times.

The lilies in our yard and all around the world come and go in their season; but they are more than foliage.  These pictures and the words of God are a year-long reminder to me of God’s peace and provision.  I hope they are the same for you.

 

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Wheely?

I almost went after her.

I was sitting on my scooter at the end of the checkout line of a store, minding my own business, when she came up behind me and bent over in front of me, pausing briefly to place her face rather close to mine.  She had clenched fists stretched out in front of her, moving them up and down, as if revving a motorcycle.  The words she spoke were clear to anyone within ear shot – “VROOM, VROOM!!  …..right?”

 

………

 

And then she was on her way, chuckling to herself in a congratulatory way.

She was not someone I knew or someone who knew me, but rather a complete stranger.

I sat there for while, confused, wondering why she had felt the need to say anything at all, but especially that.   What would prompt someone to approach a stranger and comment in such a way?  Perhaps I was providing her with her day’s entertainment.  I shook my head and asked myself what kind of response she might have expected.  Laughter?  Return sound effects signaling agreement?

I’m usually a good sport, responding to unwanted comments with a smile, a dose of grace and a heart of forgiveness.  But caught on a bad day, with not enough sleep and a higher than usual pain level, something in me snapped.   I seriously thought about chasing her down and catching the back of her feet with my wheels while responding with “Yep!  Vroom, vroom.  Take THAT!!”  Not wishing to make a scene (or be arrested), it was satisfying enough to imagine it.

When your legs don’t work, they are replaced with wheels.  Anyone who needs wheels is likely glad to have them.  I am.  I hate that I need them, but am grateful for them.  They get me around.  Because I need them and must use them to move, always, they have become like a part of me.  You have feet, I have wheels.

Friends and strangers feel free to comment on my scooter, suggesting it needs racing stripes or flames or flashy hubcaps, as if they have struck upon an ingenious idea and are the first to share it.  I’ve heard it before.   There are unspoken social boundaries.   I know not to comment on your body shape, size or oddities.  What causes people to think my leg substitutes are fair game?   Wheely???    (really?)

It’s not necessary to go out of your way to be insensitive.  Sometimes people don’t know what to say.  I get that.  But it’s much better to remain silent than to offend.   If we are face to face, I appreciate being acknowledged.   A simple hello will do.   If you feel you must voice an idea; proceed with caution.  I’ll likely just grimace.  But if I’m having a bad day, you might want to watch your heels!

 ………

 

 

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House

This is a story about raising a child as if you were building a house.

 

Buying the lot was a commitment.  Once we owned it, we dreamed about what we would build.   

lot2  lot4

 

h5For many years, we constructed a house. We used the best selling book as a guide.  We laid a firm foundation, then piece by piece we placed the beams to support each area and room. It was fun to build the building and watch it take form. With each phase of construction, we invested more time and money, effort and emotion as we grew more and more involved in what the end product would be like. We sacrificed other things as we concentrated on the house.  It was hard work and exhausting at times.

h6The floor plan was well designed and flowed. We used only the best materials we could afford as we watched it take shape. Each door and each window was carefully placed.  Each angle was thought through.

During construction, we ensured the property was safe from those who might h8steal from or damage it.  We made some mistakes along the way but we fixed them as we recognized them.

 

 

When it was completed,  we landscaped it and even furnished part of it.

h10

And then it was time to sell it.

h12

h13Fair or not, the house itself chose who would live in it.  It was hard to see it go, to sit back and watch someone else paint over the colors you carefully selected.

 

You see it change and hear as the house proudly touts its features as if it had built itself.

 

With any luck, you will still be able to visit it, but you have no say in how it is treated, how it is decorated or even how it might be remodeled.   And sometimes it happens that you’re not allowed to comment on it.  It may need repairs as the world weathers it, but you must refrain from pointing out what the new owner may miss.  If the roof leaks, you hope it is patched. If the foundation falters, you pray someone will level it straight again.  But you can no longer inspect it, make repairs or suggest how to fix it. 

You still love the house and the fond memories of building it.  You hope it will stand the test of time, remain firm on its foundation, realize its value and maintain its character.  Love, faith, and hope – those have to be enough, when a child becomes an adult.       

   

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The Sentence

When I hear about someone being diagnosed with multiple sclerosis (MS), I feel sad – sad as I do for anyone who has received any diagnosis; but also sad because I personally remember and understand the impact of hearing the words “you” and “MS” in the same sentence.  I know well the uncertainty that invades your life when you are given a diagnosis that abruptly moves your status from healthy to unhealthy.  When you hear the words “you” and the name of a disease in the same sentence, unpredictability appears and hovers over your future like a dark cloud.  It’s scary. 

I had my first symptom of MS in 1986 when I was 26 years old.  When I heard the words “you” and “MS” in the same sentence, it sounded like a death sentence. That was 31 years ago. THIRTY-ONE years is a long time ago.  Thirty-one years ago, there was nothing that could be done.  I was told to go home and come back if I had other symptoms. 

RESEARCH

Things have changed and medicine has advanced dramatically over the past 31 years. There are now disease modifying drugs (DMDs) that can slow the progression of MS.  There are many to choose from; so if one isn’t effective, it can be changed until the best one is found for each individual.  There are also new and improved medicines to deal with symptoms. There is research being done, and there is a cure coming – I believe that with certainty.  I have every confidence that someone today who is having a first scary symptom and hearing the words “you” and “MS” in the same sentence, will not follow the same course I have.  So when you see me now in a wheelchair, don’t assume this is what MS will look like for you or anyone else being diagnosed today.     

I know the power of fear.  But after the fear subsided, I lived an incredibly full life.  I had and raised three children.  I traveled.  I have experienced wonderful highs, and I’ve laughed and I’ve loved more than I could have ever dreamed I would have after hearing those words together in a sentence.

Yes, I know the power of fear; but I also know the power of God. He knows our fears. He listens to our prayers. He does not always answer yes when we ask Him to take bad things out of our lives, but He walks through life with us as we experience and learn from them. 

To you, who heard the words “you” and “MS” in the same sentence…to you, who has been given any diagnosis that feels like you’ve just smashed into a wall – there is hope.  Be assured, the sun is still there behind the cloud, and you will see it again.  And I have found it’s true that even dark clouds have silver linings. 

Life is like a road. It’s not always a smooth ride. There are speed bumps and potholes and detours along the way.  MS is a detour in life, it is not a stop sign.  The detour is just a different route to travel than the one you planned.   

It’s going to be okay. Not perfect (as most of us picture the rest of our lives when we’re young), but okay.  There is still a road ahead of you. Like I couldn’t years ago, you cannot guess now what the rest of your road will look and feel like. Don’t waste time thinking the worst. There are good things to come.  There are smooth stretches and beautiful scenery down the road and there are loved ones to share the road with you.  Don’t let fear overtake you and steal good things from you.  

Any loss requires grieving.  You’ve lost your health status and you must allow yourself time to grieve. But don’t give grief more time than it deserves.   Grieve, but find hope.  Adjust your expectations and embrace hope.  You are not alone.  God loves you.  He wants to be on the road with you.   Let Him comfort you.  Let others who love you comfort you.  There are organizations to help inform and support you – use every resource you can find; but don’t live your diagnosis…live your life.

That sentence, when said to me, was not a death sentence; and it’s not for you either.  My detour showed me many beautiful things along the way that I would not have seen on the road I planned to travel.  Yours will too.  There have been cracks and potholes in my road, but also patching and resurfacing.  There have been mechanical breakdowns, but also road assistance and mechanics.  Don’t look at me in a wheelchair and be afraid of becoming like me.  See beyond my wheels.  Look at me and plan to have as wonderful of a life as I have.  Look at me and know you will have even more chances than I have had to have a full and beautiful life. 

Everyone has challenges in life.  This is yours. You can handle this.  You are stronger than you know; and if your strength runs out, let God and others refuel you.  

 

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Stairway – Where Did They Go?

 In my last blog post “Stairway to Heaven?” (click here to see it), I wrote about images of the  path to heaven being a stairway – a unsettling vision for someone who cannot walk.  I’m not the first to think that way.  Below shows how someone put it in cartoon form.

Stairway to heaven with man in wheelchair at bottom.

In searching for Bible verses about heaven, I was reminded that Jacob had a dream in which a stairway to heaven was lined with angels who were ascending and descending on it (Genesis 28:12). Interestingly, the most recent images I found were staircases that were either empty or had people on them.  

imagescaj90z9g  kingdomofheaven

I remembered a song/hymn we used to sing in church called “We are Climbing Jacob’s Ladder”.  I did an internet search for “Jacob’s Ladder” and discovered that images created by people years ago were much different, and matched the Scripture more closely.  Here are some examples.

jl  jacob

jacobsladder  jacobsladder_gustave%20dore

jl5  jacob-ladder1

So, what happened to the angels in the more recent pictures?  It’s interesting to think about why they aren’t included.  Does their absence indicate a lack of knowledge about scripture, or does it reflect a more recent culture of self-absorption?   Or both?

Whatever the reason for the difference, I have a definite preference for the older pictures that show the angels.  My preference is two-fold.  First, the angels comfort me.  The images of them assure me that God’s workers are present here in our world.  We sometimes forget that our world is a battlefield between God and satan, good and evil.  Acknowledging the presence of angels forces us to also acknowledge the one-third of once angels/now demons who followed satan away from God and out of heaven.  They and their influence are the reason for the bad in our world – disease, corruption… every evil thing.  They are why I have MS.  Angels represent to me God’s love and protection in the midst of this life’s trials and any good that may come from them.

The second reason I prefer the older pictures with the presence of angels ascending and descending between heaven and earth, is because it gives personal resolution to how I will manage those stairs to heaven.  One or more angels will escort and carry me home – home in heaven is where I will be free from evil, free from fear, free from pain, and free of MS.

Two preferences for the images of angels – one for now to help survive the chaos of this world, and one for entry to the next world.  Angels are sometimes forgotten, never overrated and always comforting.  I’ll take angels over an empty staircase any day.

Doing a different search reveals there are some more recent pictures of angels on the stairway, but there aren’t many.

ang1

I like this picture I found on my last search.

ang2

Another song comes to mind, with the lyrics  “All night, all day, angels watchin’ over me my Lord.  All night, all day.  Angels watchin’ over me.”   Now and here, then and there when it’s time, angels are present and with us when invited to be.

 

 

Mark 13:27   And he will send his angels and gather his elect from the four winds, from the ends of the earth to the ends of the heavens.

Luke 16:22    “The time came when the beggar died and the angels carried him to Abraham’s side. The rich man also died and was buried.  (NIV)

On page 228 of his book Angels, Billy Graham says “The Christian should never consider death a tragedy.  Rather, he should see it as the angels do:  They realize that joy should mark the journey from time to eternity.  The way to life is by the valley of death, but the road is marked with victory all the way.  Angels revel in the power of the resurrection of Jesus, which assures us of our resurrection and guarantees us a safe passage to heaven.” 

   

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