Alma Dotin

It’s a mystery, this old book.

My aunt found it while going through items in her home.  It’s the same house her parents lived in for many years. They were loved by many family members through the years and they were responsible people.  As such, their home became a depository for the belongings of loved ones who had passed and left them in charge of their affairs and belongings.  There were piles and boxes of miscellaneous things that had likely been mixed together as they were shuffled by hands over many years.  The book has no date, but it is certainly old and shows it’s age.  She sent it to me.

The back of the book shows a name.

Alma Dotin.

I was excited to see a clue.  However, the name is nowhere in our family tree., so it is still a mystery who Alma was or what her connection might have been to someone in the family.  All these years later, Alma’s book landed in my hands.

I opened the cover.  The inside page looks like this:

Turning the pages almost felt like trespassing through someone’s private journal.  As it reads on the first page, the book began as an English class notebook. Inside is an interesting combination of poems, song lyrics, notes, scenes from Shakespeare, etc.  One section is hand written directions for games to be played in groups.

 

It also appears to have been reused later as s music book as Alma, or someone else, taped sheet music on top of the English notes.

In the back of the book are words of patriotism. I did an internet search for the words and discovered they are well-known and authors were easy to identify. It’s wonderful that Alma took the time to hand write the words. I have coupled the handwriting with the printed, easier to read, text, and I am including them here.

I believe that, with all the controversy about our national anthem and our flag, these words show a history of what our nation’s flag meant to its citizens years ago; and what it should still mean to us today.

Song

I know three little sisters,
I think you know them too,
For one is red, and one is white,
And the other one is blue.

I know three little lessons
These little sisters tell;
The first is Love, then Purity,
And Truth we love so well.

Hurrah for these three little sisters,
Hurrah for the Red, White and Blue.
Hurrah, Hurrah, Hurrah, Hurrah,
Hurrah for the Red, White and Blue.

L. McCord

 

God Save the Flag

Washed in the blood of the brave and the blooming,
Snatched from the altars of insolent foes,
Burning with star fires, but never consuming,
Flash its broad ribbons of lily and rose.

Vainly the prophets of Baal would rend it,
Vainly its worshippers pray for its fall,
Thousands have died for it, millions defend it,
Emblem of justice and mercy for all.

Justice that reddens the sky with her terrors,
Mercy that comes with whitehanded train,
Soothing all passions, redeeming all errors,
Sheathing the saber and breaking the chain.

God bless the Flag and its loyal defenders,
While its broad folds o’er the battlefield wave,
’Till the dim star wreath rekindle its splendor.
Washed from its stains in the blood of the brave.

-Holmes

 

Song – Hurrah for the Flag
There are Many Flags in Many Lands

 

There are many flags in many lands,
   There are flags of every hue;
But there is no flag, however grand,
   Like our own “Red, White and Blue”.

 I know where the prettiest colors are,
  And I’m sure if I only knew
How to get them here, I would make a flag
  Of glorious Red, White and Blue.

 I would cut a piece from an evening sky,
  Where the stars were shining through,
And use it just as it was on high,
  For my stars and my field of blue.

Then I’d want a piece of a fleecy cloud.
  And some red from a rainbow bright,
And I’d put them together, side by side,
  For my stripes of Red and White.

 We shall always love the stars and stripes,
  And we mean to be ever true
To this land of ours, and the dear old flag,
  The Red, the White and Blue.

 Then Hurrah for the flag,
 Our country’s flag,
It’s stripes and white stars too.
  There is no flag, in any land,
Like our own Red, White and Blue.

    Howitt

 

The book still remains a mystery in some ways; but all these years later, tattered and worn, Alma’s writing has been read and appreciated.   Hats off to you, Alma, whoever you are.

 

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10 Things to Know Before Buying a Wheelchair Accessible Vehicle

Now that we have had our modified minivan for a number of months, we made a list of things that may be helpful for others to know before making a similar purchase.   We share the information not to influence a purchase one way or another, but to inform and prepare potential buyers.  Most of this seems like common sense, but this is a complicated purchase that involves more information and emotion than buying a regular vehicle.

  1. Preparation.  Do internet searches and consider these options:
  • Where will wheelchair user sit (driver, front seat passenger or middle area)?
  • Rear entry or side entry ramp for wheelchair?
  • What make/model, features and color do you prefer?
  • What make/model can you afford?
  • Would you qualify for federal, state or local resources to help pay for the van?  If you are a military veteran, have you checked with the Veterans Administration?
  • Check for government grants.
  • Inquire about assistance from national and local disease support organizations.

2. Price. While the cost of these vans is daunting, it is helpful to think of the price in two parts: (1) the price of the van itself, and (2) the price of the modification.  While the price of the modification is normally not negotiable, the price of the van may be.  Do your homework by looking up the value of the make,  model and year of the van on www.kbb.com and/or www.truecar.com and negotiate that price if possible.  There are add-on items in the cost of the van that can be negotiated as well (see below) – ask that they be included at no additional charge (be sure this is written in your contract).  The cost of the modification portion of the vehicle is tax deductible if the total of your deductions meets the minimum amount requirement.

3. Seating. This information pertains to a modified vehicle with a side entry ramp and wheelchair user as front seat passenger.  If you are choosing a different setup, make note of similar things that will impact your use of the vehicle.

Modifying a van involves lowering the floor (for our van, about 8 inches).  That, and hydraulics which actually tilt the van in the direction of the ramp, allow the ramp to reach from the floor of the van to the pavement.

While the floor is lowered, the seats are not.  That means there is more room between the floor and the seats.

For the front seat driver, this means stepping up (think tall truck running board) before entering the vehicle.  Be sure the intended driver has the strength to hoist him/herself up to the seat.  The front seats are each on a platform so the person seated fits normally as s/he would in any car.  Both front seats are removable to provide the option for the wheelchair user to be the driver or the passenger.  The unused seat will need a place to be stored.  The middle row of seats are permanently removed to permit room for the wheelchair user to enter and turn into the front passenger space, and then to back out and exit forward on the ramp.  The rear seat stays in place, but is higher from the floor.  Two able bodied adults can fit on the rear seat.  Having the floor lowered 8 inches may leave some passengers’ feet dangling.  More recent vehicles may provide a pull-out bar for feet to rest on.  We have found it works best for back seat passengers to enter the vehicle (on either the ramp side or other, higher side) after the wheelchair user has maneuvered into place, and to exit before the wheelchair user (preventing wheels and feet from competing for the same space).

Modifying the van changes its capacity from 7 able bodied people to 3 able bodied people and 1 wheelchair user.  It also means an elderly or disabled passenger may find it difficult to enter and exit the van because of the van height on one side or negotiating the ramp on the other side.

The modification for our make/model (Honda Odyssey) van resulted in there being no space to store the spare tire.  When we purchased the vehicle, the spare tire was in a box in the space behind the rear seat.  If traveling with luggage, there may not be room for the tire.  As an option to carrying it in the car, we were given a small kit to fix a flat tire; but that may not be sufficient to repair a tire puncture.  Know ahead of time if this will be the case and consider how it may impact you.

4. Adjustment period. Other forms of getting around will never be as easy as a fully working body, so expect inconveniences and frustration.  Realize that time and patience are required to adapt by using, learning and practicing.   The wheelchair user must learn to enter and maneuver the chair properly into place and then exit by maneuvering backwards and then forward on the ramp out of the van.  The driver must research, understand and learn how to operate the extra features of the accessible van.

With added mechanics and technology comes added room for error.  Pushing the wrong button or pushing the right button at the wrong time can mean the ramp comes out of the van where there isn’t room for it.  There is stress and possible damage involved in a runaway ramp!  Be careful.

Even though we test drove vans more than once, it was a surprise after our purchase that there was no front console for storage/cup holders other than on the door.  We had to improvise.

5. Securing Wheelchair. There are two ways to secure a wheelchair to the floor.  One way is to use tie down straps that hook onto the four corners of the wheelchair.

 

Another way is to use a locking device.  Both are an added cost.  The locking device is faster and doesn’t require someone to attach the straps.   The locking device is mounted on the floor of the van and a pin is welded onto the bottom of the power chair.  The pin on the wheelchair, when aligned correctly, slides into the device and locks the wheelchair to the floor.  A button on the dash releases the lock when it is time for the wheelchair user to exit. The locking devices are not universal, so you will need one that works with your specific wheelchair.  If your wheelchair changes, a new locking device (and its cost) may be required.  

 

These “extras” can and may be included in the purchase price, but be aware if you will be given new items or used items.

The place where we bought our van works side-by-side and together with the place that works on them; but they are separate companies.  Be aware of this as it may affect servicing and payment.

Depending on the size and style of the wheelchair being used, securing the seatbelt may be  complicated.  I found it needs to be synchronized with opening the door and it took practice.

6. Parking requirements.   You will need to have ample room to deploy the ramp.  Not all handicapped parking spaces have the extra striped area next to it, and that striped area has to be on the ramp side of the vehicle. Be prepared that your parking place options will be more limited.   

7. Maintenance/Service.   In addition to regular vehicle maintenance, ramp service/cleaning is recommended every six months (to remove dirt, pebbles, etc.).  We were given the first cleaning free, but after that there is a fee.  Again, the service company operates separately from the vehicle dealer.  Ensure you have a name and phone number for service and emergencies before you finalize your purchase.

8. Other Wheels.   I originally hoped I could use a scooter in the passenger seat.  A scooter’s tiller (steering bar) is in front of the passenger.  The possible impact of  a tiller in an accident and subsequent airbag release could cause serious injuries, so scooters cannot be endorsed for use in modified vans.  Because the scooter I have is small, we do take it with us for use in some places.  I envisioned being able to transfer from one to another inside the van, but there isn’t enough room to do so.  It’s easier to move both outside of the van and transfer there.

9.  Test Drive.  Ask about and take advantage of any opportunities to test drive.  Some places will allow you to use the vehicle overnight or longer.  If not, ask about renting a vehicle to see if it meets your needs.

10.  Purchase.  Installing the locking device in a van and the welding the correlating pin on a wheelchair can take hours to complete.  Try to plan the preparation so you aren’t waiting at the dealership for an extended amount of time while the work is done.  You will want to be alert when you sign papers.  Again, be sure you have clear information about routine and emergency servicing and who to call for it.

Buying a van that is modified for accessibility is a major decision that comes with its share of questions and caution, along with a big price tag.  As with everything, being prepared helps avoid problems.  We spent more than a year researching and considering the purchase and had been following website inventories regularly to see what was available, yet there were still surprises after the purchase.  Having the van has allowed us to take short trips across town and longer trips out of town, all in safety and comfort. We were ready to take the plunge, and do not regret the purchase.  What these vans do and provide is nothing short of amazing.

Please comment to share your experience.

 

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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!

 ………

 

 

Posted in MS/Multiple Sclerosis, People Stories | Tagged , , , , , , , , | 4 Comments

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.   

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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.

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And then it was time to sell it.

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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.       

   

Posted in People Stories | Tagged , , , , , , , , | 13 Comments