Category Archives: disabilities

Two years ago, (actually on May 21st) My Sweet Mama had fallen and broken her Femur. Her bird came to Shady Acres while she was in the hospital. We didn’t know it then, but Pretty Boy would become a permanent resident of Shady Acres until he died, almost a year to the day after My Sweet Mama went home to Heaven.

This was my facebook post, two years ago this morning:

https://www.facebook.com/photo.php?fbid=10205716244117739&set=a.1140451303851.2022252.1004477626&type=3&theater

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Caption, May 25, 2017: Charis reads to Grandma Yoder’s bird, Pretty Boy. Charis is very concerned about her Grandma Yoder. She made her a card this morning, and put this picture on it. She wrote:
“Der Gremoe Yotre I am retig to your Brde. Love Charis. (And if you can’t read that, there is something wrong with your reading skills.)  

(*** for those who just can’t figure that out, here is what it says.  “Dear Grandma Yoder, I am reading to your bird.  Love Charis.)

On this rainy morning, the memories are making it hard to function. There is much to do today. If all is well, Blind Linda moves to rehab this morning. There is packing and paperwork and phone calls to be made. The unknowns of this are difficult for me.  (Will she ever get better enough to come home?  Will she be carefully tended in the nursing home?  What can I do to help everyone in this situation and still take care of my home and my husband and my family?  What is God saying to me about here and now???)

There is so much for which to be thankful, and even when I selfishly wish for time to sit and think and “wash the windows of my soul” (that’s CRY, if you didn’t know!) I know that God makes a way in our wildernesses, and He cares what we feel and how we grieve and He knows what is going to trigger our grief.

My Aunt Dottie’s fall on Monday of this week has given me a thousand memories of My Sweet Mama.  Aunt Dottie and Mama were friends, peers, sisters in law and almost the same age.  (Less than four months separated them).  Often church and family gatherings found them together, as in this picture, taken at a July 4th picnic, in 2009:

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Sometimes on Sunday Mornings when I see my Aunt Dottie, it makes me so homesick for My Sweet Mama that I turn my head away and think HARD about something else.  Aunt Dottie is a brave and classy lady.  I feel deeply for her in this latest episode.  I know it is devastating and discouraging and disheartening.  She’s doing better, but still is in Christiana Hospital. Please pray for her.

Then last evening we received word that Lawanda Zehr‘s father, Loren Martin, died suddenly of a massive heart attack. Lawanda is married to Daniel’s nephew, Pete Zehr, and this young couple has had a special place in our hearts for a number of reasons. This has triggered a host of emotions for me, too, and made me think of losing Daddy and how difficult it was once the reality set in.  With this being the anniversary of Mama’s fall and her homegoing (June 16th),  it feels like the loss of my parents is suddenly right in my face, and “in my way” no matter which way I turn.

And so.  What is the best thing to do on days like today?  Each person is different, I know, but for me, it’s a tried and true coping mechanism.  It’s to give thanks for any and everything that I can think of (while planning for a time when I CAN sit and think and cry) and getting on with the next thing that I need to do.

Which is to go and pack clothes for Linda’s move.  Mark them with her name, pack them carefully into the suitcase that is hers, and get a move on.  The transport will be there in another hour and a half and I have more than enough to fill up those 90 minutes.  (Plus, this computer is driving me batty by not keeping up with my fingers as I type.  This irritates me into being done for now. )

Blessings on you all today — may your day be filled with Grace and Glory.  May there be purpose in the mundane and excitement in the everyday.  May you find Gifts that give pleasure, Friends that give comfort, and a Sense of the Presence of JESUS that make everything look better.

My heart gives grateful praise.

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Filed under Dealing with Grief, disabilities, Family living, Grief, Heaven

February Mix: Winter’s Chill and Spring’s Warm Hope

The wind whipped cold around the corner of the bedroom where Certain Man and I sleep. It howled and complained and I could feel the cold that wanted inside around the window by our bed.  Out from our window, I caught the sound of our chimes, (named “Mozart” because of the chords that are able to be distinctly heard in the composer’s scores and had been recreated in these chimes) as they bravely withstood the onslaught.  The silvery notes hung in the darkness on the cold, cold wind and comforted me.

I thought about cold.  I thought about fear.  I thought about darkness and hope and silvery notes on the night air.  I thought about the things that hold us steady and give us joy when it feels as if we are buffeted by unexpected, icy blasts.  I thought about how beautiful the weather had been just a day before, and the daffodils that were nearly six inches high in my yard, and the tulips peaking through the cold ground on the sunny side of the barbecue pit.  Just yesterday I had noticed the crocuses poking through the mulch on the peony row by the front door and thought that they are late this year.  I thought about the incoming Spring.

The second week of February was a tough week for the family unit at Shady Acres.  Monday of that week was spent doing “prep” for a scheduled colonoscopy with our one handicapped individual, BL.  In a delightful surprise, it was way easier than I had anticipated.   Over the years, BL has honed her control issues to a very tight ship, and one of the things that she has controlled in almost unbelievable ways has been her bathroom habits. (As in holding everything until it is a most inopportune time or for someone that she doesn’t like.)  This habit that has been one of the hardest for me to be gracious about (particularly when she is giggling out loud over an “accident” that has me scrambling) actually worked in my favor in this particular situation.  Since she is non-verbal, I trucked her to the bathroom at timely intervals, and she never once made a mess for me to clean up. This gal really does have control!

Another thing that made this prep easier than it would have been with another individual is her ability to down large quantities of liquid with scarcely drawing a breath.  (She will actually chug 12 ounces of Pepsi without stopping for a breath if someone doesn’t intervene.) So getting her to drink her “Go Lightly” mixed into 16 ounces of water?  Piece of cake.  16 more ounces of water?  She was holding her hand out for it.  And 16 more?  Bring it on, she was ready!  Of course, I didn’t allow her to drink it all at once, but it was no problem at all getting her to drink all 48 ounces in an hour.  The second round of prep was likewise finished just as successfully, and we were finally ready for the visit to Milford Hospital’s Day Surgery department.

That day was long and hard.  BL’s veins are difficult and beyond the abilities of even the best phlebotomist.  Precious time was spent (and lost) as tech after tech tried technique after technique with no results, or minimal results at best.  We started at the Day Surgery Department at 7:30 a.m.  The clock on my dash read almost 4 p.m. when we headed home.  Dr. K had come in after completing the colonoscopy with the words, “We’ve got to talk.”  My heart sank as the import of the words settled into my brain.  “Mass, cecum, surgery, cancer and ASAP” swirled around in my brain as he gently tried to impress upon me the importance of his find.  The staff was terrific.   They made an appointment for the surgeon already the next morning, and scheduled two CT scans for yet that day, with and without contrast.  They poked and prodded poor BL until I was past being able to bear it.  Each department was sure that their vein finding prodigy could surely get a viable vein and until they were convinced otherwise, BL had another infiltration, another poke, another cry like a wounded animal.

Along about 3 p.m., I stood by her stretcher over in the Cancer Center, where they had sent us, hoping for a quicker and more efficient finish.  The techs had gone off, looking for supplies and assistance.  It was just her and me in that big, cold room, and she was huddled under a warm blanket that they had brought in for her.  I stroked her wounded arms and rubbed her purple blotches and in the quiet of the room, I started to quietly sing to her.  “Jesus Loves Me,” “Amazing Grace,” and “Be not dismayed.”   She seemed to relax a bit and her face wasn’t as contorted. How I wished that they could just get this over with!

The techs came bustling in, then,  to try on their own one more time.  Linda’s anguished squeal started my tears, even as they exalted that they had gotten it this time!  When the vein blew just as they started to push the contrast for the scan, I was done.  I had stayed with BL for almost the whole day, but now, through my tears, I asked, “When am I allowed to say that it is enough and that you have to call Vascular Medicine down to start the I.V.?”

They looked at me surprised, and said, “Oh, we’ve already called them and someone is on the way down.  Should be here any minute.”

I took a deep breath.  “Okay,” I said, “I’m sorry, but I cannot bear to watch any more.  I will do what I can to help to get her situated, but when it goes to another stick, I am going to excuse myself to the waiting room across the hall.”  They were understanding.  They were kind.  And after a while, they came and got me saying that, after two tries, Vascular Medicine was able to start a suitable thread, they had completed the scan, and that I could take BL home.

I got her bundled up and tucked her into the wheelchair.  I pushed her through the halls of Milford Memorial Hospital, and I wondered what she was thinking.  I had tried to explain as much as I could all day long, as well as when I was doing the prep, but she sat in the huge hospital wheel chair as I pushed her along and she had drawn herself into a small lump, looking miserable and confused.  I spoke quietly to her as I pushed her along the almost deserted halls, cheery words of comfort and hope.  And then I thought about one of her favorite songs, Bob Marley’s “Three Little Birds,” as sung by Elizabeth Mitchell on one of BL’s CDs at home.

“Woke up this morning,” I started to sing quietly, “Smiled at the rising sun.  Three little birds sat by my doorstep . . . ”  I could hear the notes sort of echo off the walls, but no one was in sight, so I kept on.  ” . . .singin’ a sweet song.  A melody pure and true.  Singin’ this is my message for you -ou – ou !”

Now there were a few people moving along the corridors, some of them glancing furtively at this singing spectacle, pushing a blind, handicapped scrap of a woman in a huge wheelchair.

“Singin’ don’t worry,” I warbled on, “about a thing.  ‘Cause every little thing’s gonna be alright.  Singin’ don’t worry, about a thing, ’cause every little thing’s gonna be alright.”  I got some sympathetic looks, and I thought about how embarrassed my kids would be if they were along, but I sang until I got her down to the entrance, where valet parking went to bring my mini van and I loaded her into her seat, buckled her seat belt and took her home to her chair.  She was hungry, and she bore almost a dozen bruises from her ordeal, but she was restive and quiet.

There would be time in the days ahead for me to sing other songs to her, (“God Will Take Care of You,” and “Why Worry When You Can Pray,” and “Whisper a Prayer in the Morning,” and “My Lord Knows the Way Through The Wilderness” and others) but for that moment it seemed like the right thing to be singing at the end of a terrible day, full of bad news, and needles and hard stretchers and cold rooms and great indignities.

Is “every little thing gonna be alright?”  I don’t know.  These days are filled with many unknowns, and I’m not at all sure how things will actually work out.  We are scheduling surgery, checking some other suspicious areas, signing papers, getting clearance, trying to cooperate in every way we can with recommendations and making a concerted effort to make things as normal and as cheerful as possible for both OGA and BL.  And the support and the words of comfort and encouragement have been freely given to and gratefully received by this Delaware Grammy who has been caring for handicapped individuals for over thirty years.

I am sometimes surprised at the people who imply that it’s time for me to quit.  I appreciate the concern, but I’m listening up to my Heavenly Father, talking to my family and doing a lot of praying, and this is not the time to bail.  Nor do I even want to.  We are BL’s “family.”  She has lived with us for over 17 years, and as I checked into her record, I realized that we passed, a LONG time ago, her longest placement before she came home to stay.  And just so no one worries unduly, I would like to say that the Delaware Department of Disabilities has been concerned, supportive, and more than generous in their offers of help.  I am not alone.  We are not alone.  God has a plan.  He loves BL, and He will do what is best.  By His Grace, we want to do our part, but health and healing are, ultimately, up to Him.

And in that, I not only rest, but offer here a sacrifice of grateful praise.

For those of you who would like to listen to Elizabeth Mitchell’s version of “Three Little Birds” you can find it here:

(And if you like Bob Marley’s version better, you can probably access it from that link.)

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Filed under disabilities, Family, Handicapped Adults, Praise, Stories from the Household of CM & CMW

Learning Lessons from OGA

“Mare-Ann,  I ‘on’t like ‘at soup.  I ain’ gonna eat it.”

She sat at the table, looking at the homemade beef stew that I had put in front of her like she expected something to crawl out of it.  I walked over to see what was wrong.

“Why not, Audrey?”  I couldn’t see anything amiss.

She shrugged.  “I ‘on’t like it.”

“Why don’t you like it?  What’s wrong with it?”

“It ‘on’t taste good.  I ‘on’t like it.  I ain’ gonna eat it.”

“It hurts my feelings, Audrey, when I make good food for you and you say it isn’t good.”

She was unmoved.  Her lips were in that familiar, straight. intractable line.

“You need to eat it.  It’s good, Audrey!.”  I looked at the soup to see if there were any mushrooms in it, but I hadn’t put any in it, knowing that she wouldn’t eat it if there were mushrooms.  “Look, Audrey!  It has our own beef, our own potatoes, our own carrots.  It is good.  You have to eat it.”

She set her jaw, stubborn, but didn’t say anything.  I finished chopping Blind Linda’s identical supper into small pieces, and got her started eating, and continued working in the kitchen, keeping an eye on Audrey’s progress.  She would occasionally pick up her spoon and stir it around, but not a single bite went to her mouth.  She nursed a can of caffeine-free pepsi a little at a time, and when she thought I wasn’t looking she ate her banana.  She burped loudly a time or two and watched with her owlish eyes while Linda polished her plate off in her usual record time.  Then, when she thought enough time had elapsed, and I wasn’t watching, she ate her Schwan’s chocolate chip cookie ice cream sandwich, and then continued to sit in her chair with that stubborn, determined air.

I pondered my options. I knew that if this came down to a confrontation, it wouldn’t end well.  I was ashamed of how angry this whole thing made me.  It wasn’t just this incident.  It felt like a whole catalog of miniscule rebellions had been adding up over the last week.  In addition to being angry, I was soul weary.  A deep self-pity was washing over my heart as I realized that, once again, these two individuals that I care for are mostly incapable of understanding or even caring about what I was feeling or thinking or dealing with on any given day.  Not that they couldn’t have learned, somewhere along the line, but temperaments as well as life experiences have left them feeling like they have to watch out for #1 at all costs.

And so, I rattled around my kitchen for a while and fought an inner war with myself.  “It’s only a bowl of soup, Mary Ann.  For pity sakes!”  “But it’s the principle of the thing!”  “Do you really want a fight on your hands?  Is it worth it?  You know she’ll be angry and psychotic for the rest of the night.”  “I know, but –”  And on and on and on.  I finally decided that I was just going to go out of the house for a minute and find out what Daniel was doing.  That way, she could leave the table, dump the soup in the trash, or do whatever, and I wouldn’t have to deal with it.

So I cheerfully said to her, “Audrey, I’m going to go out and see what Daniel’s doing.  I’ll only be a minute.”  And I forced myself to smile at her.

“Alright,” she said, without any enthusiasm.

I toyed with the idea of traipsing around on the deck to look in the kitchen window to see what she did when I left, but I decided that was a little overdone.  I went on out, saw Daniel working himself silly in the hot evening sun, and then went back in.  Audrey was gone.  Her supper cleared away except for the white corelle bowl, still filled with a thick beef stew, swimming with chunks of succulent beef.  It sat, lonely and defiant at her place at the table.  I sighed and scraped it into the compost bucket and cleared the rest of supper away.

We didn’t speak much the rest of the evening.  Whenever I did talk to her, I acted as if nothing had happened, and she, though not overly friendly, did not mention the uneaten beef stew.  The evening finished as usual, with bedtime juice and the usual routines.  I nursed my hurt feelings, and wondered if this was one of those things that I was just overreacting about.

Morning dawned, and with it, no lessening of my angst.  I try to keep mornings as happy as possible, with cheery greetings, silly songs and extra help for Audrey with dressing, breakfast and such.  But this morning, there was not much cheeriness.  Rather, there was a war going on in this carnal heart of mine.

“Maybe I should just turn the tables on her,” I reasoned in some of my lesser glorious moments.  “I’ll put out her meds, but she can just get the rest of her breakfast by herself!  She can get her own banana, fix her own tea, get her own ice water, and make her own oatmeal. And do without her strawberry yogurt.   If she doesn’t like the food I fix for her, she’ll just have to find out how far she gets by herself!”

It’s not that she can’t fix her own breakfast, but over the years that she has been here with us, I have found that fixing her breakfast for her sets her into a better frame of mind, makes her feel loved and, as a result, makes it an easier start to the day.  So I thought and pondered and practiced how I could say this in a way that would make her know exactly how wrong she had been, how she needed to suffer for what she had done, and learn her lesson from the (obvious) natural consequences of her behavior.  I almost had it down pat when that little voice came into my thoughts that always discomfits my best laid words.

I started thinking about our Audrey girl.  She isn’t a child.  She’s 67 years old.  Most of her life, all of her decisions have been made for her unless she provided enough disturbance to make things uncomfortable enough that someone would do things her way.  And by the time she got anything accomplished that she wanted, it was so long getting it done that she felt like it was only done because people were aggravated (not because they loved her).  Which, unfortunately, was probably true.  She has endured hurtful words, physical abuse, social ostracism, and dealt with paranoia, pain and misunderstanding over and over again.  In the years that she has lived with us, we’ve tried hard to make these years the best years of her life, and constantly reassure her that she is loved, that she is wanted, that she is NEEDED, that she is safe, and that she is a grown woman and that, as such, she has choices.  There will always be things that she wants that she cannot have.  She would like to live independently.  She would like to not take her psych medicine.  She would like to have massive amounts of money at her disposal to spend as she wants.  She would like to live on pepsi and chocolate and chips.

And while I do try to make sure that she eats properly, it really isn’t my right to tell her what she likes and what she doesn’t like.  And if she really doesn’t like beef stew for some reason on a given night, how is that offense-worthy?  And if a person with a history of diminished value on almost every aspect of her life can’t even decide that they don’t want supper on a given night, is that cause to treat her with decided coolness?  Or to think of ways to “punish” her?  Well, I wouldn’t go straight to “punish” but make the “natural consequences” more difficult for her?

I decided that I would fix part of her breakfast for her.  She could get her own oatmeal, but I would do the rest.  I still wasn’t feeling all that gracious, but I knew I had my own heart work to do, and I also knew that God has been so gracious to me when it comes to things like this that I was pretty sure it would right itself without any help on Audrey’s part.  And she was more grudging that she had to fix her own oatmeal than she was grateful for what I had done.  But I decided that was okay.

The next day, at Byler’s Store, I found some breakfast sandwiches that looked wonderful.  She loves Jimmy Dean Sausage, egg and cheese croissants, and I thought these looked like they would be even better.  I brought them home.  I thought they were a little more work than Jimmy Dean, and they were on biscuits instead of croissants, but they really looked yummy.  When she came out to eat breakfast the following morning, there was a napkin with a note on it, her tea and yogurt and banana and ice water — and the new breakfast sandwich standing ready.

She didn’t like it.  It was “too dry” and the flavor wasn’t good.  She coughed and snorted and carried on and sighed.

She was probably halfway through the sandwich when I started to cry.  I stood at the counter putting out her meds with my face averted from her and cried hot, bitter, disappointed, sad, misunderstood tears.  I really didn’t know why this all mattered so much to me.  I knew that the tears weren’t just for that silly sandwich or even Audrey’s stubbornness and independent quirks, but I felt such a deep, deep sadness and a good dose of frustration and a (teeny bit!) mad.  But Audrey never noticed, and it was time to get Linda finished up and out the door.  I got the tears dried, packed the lunch, got Linda into her wheelchair and pretended that everything was fine with Audrey.

When everyone was out the door, I may have cried some more.

But then God  (it’s always better for me when God interrupts my pity parties with a lesson from what’s troubling me) reminded me again of something that has nothing to do with how Audrey responds, but everything to do with how I respond to her.  To her, yes, but also to a Heavenly Father who provides me with everything I need, gives me more than I need, and loves me with an everlasting love.  And sometimes I sit at His table and refuse to eat.  Or protest that what He has given isn’t good enough.  That it doesn’t taste good.  That it goes down dry.  That it doesn’t satisfy me.  And it doesn’t cross my mind to think about what He thinks of my evaluation of His provision.

“Oh, Lord Jesus.  This hasn’t been about Our Girl Audrey at all, has it?
Create in me a clean heart, Oh God, and renew a right spirit within me . . .

And this humbled heart shall bring you grateful praise.”

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Filed under disabilities, home living, mental illness