From The Emergency Room 05/09/2017

There are some things we just can’t wish/pray away. That’s when I’ve made a choice to trust His Heart when I cannot feel His Hand.

Which, quite honestly, is right now for me. I’m sitting beside Blind Linda’s stretcher in the emergency room at Bayhealth, Milford. She is breathing, but pretty much unresponsive. She didn’t bother to protest when they stuck her again and again trying to find a vein, finally on about the fifth try, they got one in her thumb. They “hope they have enough . . .”  (Not sure how they plan to filter IV’s through there, but that is, after all, their problem. It still makes my heart ache.)

The last six weeks have been one mad rat race. Actually, ever since the first of the year I haven’t had time to catch up. Didn’t get my taxes done, no flower beds tended, haven’t had time to write any of my head or my heart like I would like.

And it’s been very lonely. Not because people haven’t cared and helped and prayed and shared, but because there are some things in life that are hard to explain and even harder to understand. I don’t know how a blind, non-verbal, stubborn as a mule, autistic scrap of humanity worked her way into my heart 17 years ago and stayed.

I didn’t want her.

I had done respite with her for a friend and I was pretty sure I wouldn’t be able to endure her for an extended period of time. There were too many behaviors and too many “messy” things.  But when she was in desperate need of a home, My Sweet Mama took her in during the summer of ’99, and made it clear that it had to be short term.  As the months passed, I changed my mind.  And when January 1, 2000 came, BL moved into the bedroom with Old Gertrude and became a part of our family.

Life goes on as it is wont to do, and there have many momentous occasions since she arrived. There was the death of Old Gertrude, who loved her with the pure sweet love of innocent unselfishness.  There were family weddings, graduations, the death of family members and both Daniel’s parents and mine. Each of our delightful grandchildren joined our family, and every one of them was inordinately interested in the little lady in the chair in the corner. (I would find toys piled up on her lap after the grandsons visited, tribute to Frankie’s concern that she needed something to play with).  There were walks on sunny days and always, always music playing for her in the corner chair where she sat in a nook off of the kitchen; she listening to the sounds of the family, and swaying her head slightly to the music. And so the days passed.

But back in December, she had a positive Cologard test. In January, she had an appointment with the gastroenterologist. In February. she had a colonoscopy.  In March, she had surgery for a malignant polyp in her colon. And that set her on her current decline.  She was in the hospital almost the whole month of April with various complications. There were many times when I despaired of her getting better again.

Daniel and I had plans to go to Missouri to see his biological mother’s Amish relatives for the week from April 29 to May 6th. His sister, Lena, had made the arrangements, (we were in 7 different beds on 7 different nights) reserved a rental car (with Daniel being the designated driver) as well as a motel for our last night. I hardly thought I would/should go, but Deborah insisted, and Daniel was not looking kindly towards my uncertainty.  I finally decided I needed to go.

“And why not?” I reasoned, more than a little conflicted. “I was in Ohio with Daniel’s parents and siblings when old Gertrude died. I might as well be away when something happens to BL.” That Man I Love Best looked at me a little strangely when I voiced those sentiments. I’m afraid I might have stuck my chin up at him and said, “It would almost seem like it’s a test of my loyalty and commitment!”  He kinda shook his head a bit and  just went on out to the chicken house or wherever.

Little did I know what a mix of joy and concern, new relationships and blessed exchanges, as well as inconvenience and discomfort that week was going to be.  (And sometime I MIGHT get around to writing about it.  If you are interested, Daniel’s sister, Lena, has a blog where the trip is chronicled.  Find that here: http://happytrailswithlena.blogspot.com/)

We all know that Linda has behaviors that make it difficult for us to determine exactly what is behavior and what is a symptom.  And last Wednesday night when she went from walking well to suddenly leaning into Deborah who was guiding her to the bathroom and then crumpling on the floor- well, that was probably behavior.  Usually when she pulls that trick, someone always catches her and lets her down gently.  But this time, she was going over backwards and Deborah could not do anything except keep her from hitting her head.  She heard a snap, saw that the ankle was at an odd angle, and until it was all said and done, Linda was in the ER until 3 the next morning, getting a cast on a “significant” fracture to her left ankle.  Thankfully, it was not dislocated, but she was to be non-weight bearing until she saw the orthopedist.

Of course.

But there were appointments scheduled for the week that we are now in — three in fact.  One to the Primary Care Physician, one to the Surgeon, and now one to the Orthopedist.  Back in Delaware, my case manager and team from the Department of Disabilities handled the authorizations and took care of legal necessities. From Missouri, I handled home calls and took care of making arrangements for the appointments scheduled for this week with the transport company.  I made appointments and wrote down numbers.  I talked to nurses and dispatchers and my case manager.  The transport company wouldn’t provide transportation unless I gave them three working days notice, so they refused to take her to the appointment that was yesterday (Monday) with the orthopedist.  So, again from Missouri, I called my brother, Mark, Jr., and begged  for help.  He said that he could help with transportation on Monday, and not only provide a van, he could also provide his strong, young son, Timothy, to drive and help. Wow!

Back home, Deborah was so concerned about Linda.  She wouldn’t eat.  She  was lethargic and seemingly depressed.  Deborah tried to tempt her with her favorite foods.  No interest.  She played her favorite music.  She talked to her and made sure she was clean and dry.  Nothing made any difference.  The messages I got in the last few days of our trip were singularly lacking in any good news.

We got in on Saturday afternoon.  My heart sank at my first glimpse of our Linda Girl.  I made my voice as cheerful as I could and tried to rouse her from her quiet apathy.  She brightened briefly.  I thought I saw the shadow of a smile, and she reached her hand a short distance off the sheet on her hospital bed.  But something seemed terribly wrong.

I stayed home from church with her on Sunday, hovering close most of the time.  She ate more for me than she had for Deborah, but probably because I worked harder to get past her resistance.  She often acted like she was going the throw up, but never actually did.  It was hard to tell what was really going on, because BL can make herself throw up when she wants to, and she will do it if she is upset.  Deborah kept track of her active tummy sounds.  Those seemed fine.  And so Sunday passed.

Yesterday morning, I came down to discover that she had vomited profusely during the night, and I was sure she had another obstruction.  Deborah listened, and all her stomach sounds were good.  But something seemed so wrong.  I called her Primary Care Provider and they said that they could see her at 12 noon.  Her orthopedist was supposed to see her at 1:00.  So Tim came early, and he and Deborah helped me get her loaded onto the Geri-Chair and into the van.  She looked almost comatose.  The PCP listened to everything.  Vitals were normal.  Tummy sounds were active.  No temp.  We discontinued the new blood pressure medication that was started in the hospital because she was exhibiting a lot of the negative side effects, and they gave me an order for a CT scan of her head to rule out stroke.  We were very late at the orthopedists, but they had told me to come in when we could, and they checked her leg, determined that it would not need surgery, and encased it in a hard cast, with instructions to have no weight bearing for at least four weeks when they would see her again.  We couldn’t get the CT scan of her head on that trip (we tried!) and so we came on home.  Nothing much resolved and poor BL exhausted and as sick as ever.

Today there was a multitude of visitors through the house.  The Millennium Home Health Care nurse, the Physical Therapist, and the CNA.  Soon after lunch, Linda’s mother showed up unexpectedly.  One look at Linda and I could tell by the look on her face that she was beyond upset.  She was frantic.  We talked a while, and I told her all that we were doing, and what the nurses said.  The tummy sounds were still good, no fever, BP in the normal range for Linda, pulse and respiration good.  Mrs.Squibb was quietly distressed and did not stay long.  After she left, I cried a bunch.  I felt so helpless.  And sad.  And desperate for answers.

It was after Mrs. Squibb left that the CNA came and gave Linda her bath, and lovingly lotioned her up and made her look sweet and clean.  Linda slept the sleep of the very sick.  No responses, no movement except an occasional frown, and an occasional strange, raise of her arm towards the ceiling in a strange sort of wave like she is trying to bring something in close to her face.  My heart felt like it was going to burst.  I finally called my nurse from the state.  Diane Timmons, my resource, go-to support and friend, said that I needed to take her to the ER.

“I have no way of transporting her,” I said, my mind so boggled by the day before and its difficulties that I couldn’t think.

“Call 911,” directed Diane.  “If they can’t find anything and send her home, then we will know, but we need to at least cover our bases in case something is really wrong.  I think there really is, but she needs to be at least evaluated.”

911 was called, the ambulance came and brought her in here.  It is now much later.  The night has been long and drawn out, and eventually a doctor “straight tapped” an artery to get the labs they needed after getting a good IV line in that afforded anything they needed for the CT scans.  She rests quietly now.  She has an NG tube draining the liquid from her stomach.  She is in acute renal failure.  And she has another bowel obstruction.  Her White Blood Count is high, and she is septic.

I prayed over her, and played music up close to her ear, and when they finally found a bed for her upstairs, decided to go home.

Oh, my Linda-girlie.  What is there going to be for you?  I’m reminded of what Old Gertrude would often say to me as she looked at you with love in her eyes. “Oh, Mom,” she would say, her voice almost pleading, “I wish she could say somethin’!  She’s so purty!  I just wish she could say somethin’!”  How very much I wish you could say something!  How very much I wish you could even just point to where it hurts. I think I wish I could know what is in the days ahead, but maybe I don’t.  You nor I nor anyone who loves you are given grace now for the days ahead.  I’m not even going to tell you to “hang in there.”  I am going to say that you need to rest easy.  That you need to listen for the Angel Song, whether protection or assistance or summons, you can trust their song.

This note on 05/13/17:  Linda has improved significantly his week.  The obstruction has resolved, her kidney failure has started to reverse, and she is responding to us more normally.  She will need to go to a nursing home/rehab facility until she can walk again, but the plans now are to attempt rehabilitation with the hope that she will be able to eventually return to Shady Acres, and her spot in our home and family.  She is  still hospitalized and we do not know how long that will last, and things change so rapidly in our world, so we cannot really predict what will happen. Please keep us in your prayers.

 

 

 

 

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A Song in the Night

Linda is doing BETTER! And even though there have been some terribly difficult times in these last two days, and even though I’m so very sad that Linda had to go back to the hospital, yet I’m very grateful for some of the good things that have happened, and that she is doing better.

Sometimes I feel that I must be the kind of person in times like this that speaks only of what is frustrating me — and then people feel like the care that Linda is getting is sub par, or that I’m upset with the hospital, or that I don’t trust the doctors.

No, it isn’t that at all.

A long time ago, I realized that ultimately, everything is in the hands of The Father. And I will advocate where I can, and I will do all in my power to get what anyone I love needs. In fact, I will do more than that.  I will take to The Higher Power the things that I seemingly cannot move or effectively change. But when I fret and stew over stuff that I cannot change, it sours my attitude and sometimes alienates the people who could help me most.

To quote Old Gertrude, “I’m not that kind of girl!” At least, I don’t want to be that kind of girl. And so, we will wait, as recommended, and pray, as always, and believe yet once again that God Loves our Linda Girl as much as he loves any of us, and He is here!

Last night in the Emergency Room, I spent long hours by my Linda-Girl’s bed.  I shed a lot of tears out of sorrow, out of frustration, out of a deep, deep sadness, and out of a desperate sense that something was so wrong with a person who could not verbalize, and nothing made sense.  I stood beside her bed and nurses and techs and doctors came and went, procedures were done, and Linda made her pain noise and sweated cold beads of sweat and endured (again) repetitious efforts at blood getting and IV starting and NG tube inserts and monitor placements and warning bells (which she HATES) and palpitations of her distended, painful stomach, and unceremonious transfers from stretcher to CT Scan table, back to stretcher and back to a cramped little room on the side hall of the hospital’s ER.  There were many moments when it was just her and me, and I seized those time to talk out loud to both Linda and Jesus and to ask for a sense of His Presence there, in that room where it felt like the air was thick with disappointment and sickness.

And He came.  In those desperate prayers and in the longing of my soul for some tangible evidence of His Presence, HE CAME!

HE CAME! in the gentle hands and reassuring words of a tired nurse, almost at the end of her shift, who worked very hard to do for Linda what needed doing.

HE CAME! in the listening ear, understanding heart, and the thorough reporting of a red haired nurse, new at the job, but intent on doing things right.

HE CAME! in the skilled hands of an ER Tech who got a really good vein for everything that was necessary all night and was still working this afternoon when I left.

HE CAME! in the rapid reversal of the most alarming symptoms and in the choices made by the professionals.

HE CAME! in the caring of Eldest Daughter who arranged for her Daddy to bring me food and drink when the day stretched on and on.

HE CAME! in the quiet of the midnight, when it felt the night would never end, and brought peace and strength and quiet calm to this anxious, troubled heart.

“He is here, Hallelujah!  He is here.  Amen!  He is here, Holy, Holy,  I will Bless His Name again!  He is here!  Listen closely.  Hear Him calling out your name.  He is here, you can touch Him.  You will never be the same.”

So powerfully the words came into my mind as I waited there, and I sang them softly to Linda while the machines pumped a vile looking liquid from her stomach and the fluids and antibiotics dripped silently, and yet another IV infiltrated into a rock hard grapefruit under the sleeve of her gown.  He was there when the labs and CT Scan came back with the reports of a dangerously high white blood count. He was there in the reports of an obstructed bowel, and a possible pinhole-sized perforation. He was there when the decisions were made for a bed on Intermediate Care, and He was there when the hospitalist gently touched my shoulder, said reassuring words and promised to do all he could for our very sick girlie through the night and sent me home to rest.

We have an uncertain course ahead of us, but He is here!

Hallelujah! 

 

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Suppers and Scarves

Last night, Daniel and I took our local family out to supper in honor of Christina‘s “Glad I Got’cha Day!”   We slipped it in after a day that was hectic and hard on many fronts, but I’m so glad we did.  I needed it desperately, and I’m pretty sure I wasn’t the only one.

Yesterday afternoon, in the hospital gift shop, I had bought a new scarf that had the color teal on it. This was to honor Youngest Daughter, Rachel Jane‘s request that we take note that the month of April was Sexual Assault Awareness Month (SAAM). Yesterday was specifically designated as #everybodyknowssomebody day. People were asked to wear something with the color teal to indicate that they cared/knew/supported victims. I had forgotten until I was out of the house yesterday morning. Besides, I didn’t think I had a single thing that was teal, either in accessories or apparel. So I decided to check at the Milford Hospital Gift Shop where I have made some friends, and where I often find unusual things. The only thing I found was a scarf with butterfiles that had teal accents. It was pretty, and it would do.

So last night I wore my usual black skirt, a simple white top and with the assistance of Deborah dressed it up with the pretty scarf. The evening was pleasant, We ate on the patio at The Palace, and the six of us (Christina, Jesse, Charis, Deborah, Daniel and I) enjoyed our time together immensely.

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We got home, and I was getting ready to run into the hospital to see Linda. I was absentmindedly running the ends of my scarf through my fingers when I hit something crackly. Oh, dear! The price tag from the gift shop was dangling from the end of my scarf with one of those plastic string things that establishments use to keep garment price tags in place.

I hadn’t seen it! Deborah hadn’t seen it. I wonder who did!

Maybe as many who noticed the teal in the scarf and knew what it was for. And in River Town. Art Town. Home Town. We are Milford,” that just might have been nobody.  But they should have.  In researching my home town, I was saddened to discover that, for all we have going for us, this is also (allegedly) true:

Crime

The city of Milford has a crime rate higher than the national average in some categories, much higher in rape, assault, and theft, and lower in others.

Milford Nation
Murder 0.0 6.9
Forcible Rape 97.22 32.2
Robbery 166.7 195.4
Aggravated Assault 1333.3 340.1
Burglary 1027.8 814.5
Larceny Theft 5500.0 2734.7
Vehicle Theft 291.7 526.5

Formula used for chart: ((Crimes Reported) / (Population)) X 100,000)[12]

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Days of Uncertainty

I sat beside her bed last night, and sang to her.  A week ago this morning, she had surgery for a mass in her colon, and I knew that we had a rough road ahead.  Blind Linda either does a whole lot better than expected or she breaks all the rules for everything that are in place for a speedy and relatively healthy comeback.

There are so many limitations.  She will not blow into the incentive inhalation spirometer to prevent pneumonia following surgery.   She will not cough.  She has an ability to hold an incredible amount of urine and she will not go unless she decides to.  (1,000 cc on a straight cath?  Really???  Why don’t you just go???  And for those of you who don’t think in cc’s — that’s over a quart!)  She doesn’t like to walk.  Her veins are so incredibly inadequate for all the medications and tests that they need to do.  And she is non-verbal.  She cannot tell you anything she wants, needs,  or feels. And she is blind.  So she cannot see what’s happening or communicate with her eyes.

So we went into surgery last Tuesday morning, and things went so well that there was talk in recovery of discharge in two or three days.  It really did go extremely well.  But things have gone steadily downhill from there.

Pneumonia, a UTI, fever, IV after IV line blown and multiple attempts to restart. Foley Catheter removed, then replaced.  Then removed.  Success for a day.  Then a bowel obstruction.  A straight catheter in hopes of not having to replace the Foley.  Then a replacement of the Foley because of the misery of the bowel obstruction and difficulty with any kind of procedure that involves getting her up and down. Spiking fever, and through it all, pain, pain, pain.  I’ve watched this Linda girl through so many things, and she doesn’t acknowledge pain until it is unbearable.  Then she has this noise that she makes in her throat — (not the squeal that she reserves for needle sticks, and believe me, there has been PLENTY of THAT noise) but another, “hooking her breath” then a guttural, breathy moan noise that is  not what the nurses are looking for.  And since she is NPO (Nothing By Mouth) she has to have her pain medications by IV.  But the rules are, “No IV pain meds are allowed to be scheduled.”  She has to ask.  (REALLY???) Or the nurse has to deem her “uncomfortable.”  Most of the time they try to stay on top of it, but if no one is in there to observe her who knows her and knows the signs, it’s easy for her to get really uncomfortable before anyone gives her anything.

Her Mom and one of her sisters have been there parts of every day except one.  It’s a long ride from Wilmington for her 87 year old mother.  Linda’s two sisters alternate in bringing her, but it’s hard for them, too.  They worry about their mother.  Her health isn’t the best.  And Linda’s Mom worries, too.  About Linda, of course.  Wants to make the right decisions for Linda, but doesn’t want her to suffer unduly.  Wants to KNOW about everything that is done and why it has to be done.  Wants to make sure that Linda is given the attentions she needs and isn’t left without being checked on.  Whew!  It’s a hard thing to manage from so far away.  This whole thing has her in such a torque, not only for the present, anxious and heart wrenching situation, but also as she looks to the future and treatment for what brought Linda into the hospital in the first place.

Sunday night, after coming home from the hospital around ten o’clock, and feeling like Linda’s room had become a place of anxiety and tension and sadness and even chaotic hurrying because of the busy nurses and the completely full floor, I thought long and hard about what we could do to make the room a place of tranquility and calm.  A place where doctors and nurses and family come and feel peace.  Where professionals and commoners alike could find affirmation and co-operation and would know that, no matter what the outcome of this whole thing would be — whether Linda lives, or (Oh, Lord Jesus, please!) whether she doesn’t, that Jesus is in This Place!  That people would know Linda is loved, and that she matters, but that she ultimately belongs to the Father, and that we trust HIM to hold her tenderly and to give them wisdom for the decisions that need to be made, and the procedures that need to be done.  I know that they cannot always find the vein, know the pain, understand the needs or even feel compassionate towards this patient who cannot respond to them in hardly any way.  But if Jesus is there, and His presence is felt, we will all be far better off and much more able to do the right thing, free of guilt, pride, fear, or even that anxious sorrow that can sometimes drive our thoughts, actions, reactions, and decisions.

To that end, will you please pray for us?  Pray that it will be a good day in room 235 in Bayhealth Milford?  Pray that Linda would be calm, and that the tests that are needed today could be done with a minimal amount of pain for her.  Pray for peace for us all, and that the decisions made today would be under the careful direction of the Heavenly Father.

For the very presence of Jesus, a Heavenly Father who knows our Linda-girl and each of us, and for friends who pray —

My heart gives grateful praise.

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Birthdays with BL & OGA

Yesterday was BL’s 68th birthday.  She was a St. Patrick’s Day baby, back in 1947, and one of the things that she seems partial to is her birthday.  Usually when I go to get her up in the morning, I sing the old, “Get up, get out of bed, c’mon you sleepy head” song (my version) but on her birthday, for pretty much the last 17 years, I sing a loud and happy rendition of “Happy Birthday to YOU!  Happy Birthday to You!  Happy Birthday, dear Linda!  Happy Birthday to you!”

Yesterday morning she rolled out of bed with a happy, happy smile and she stayed happy until she realized that we had yet another doctor appointment in the early afternoon.  Then she was grumpy.  I decided to get her a haircut before bringing her home since it was about time.  Also, with her surgery coming up, I wanted to get it done ahead of time.  So I called the hair salon and they said they did have space for her.

Usually (as in “always”) when I get BL a haircut, I take OGA, too.  For some reason, getting a haircut is not something that OGA can just say she wants and does it.  There is always this sort of conversation.

“Hey, Audrey.  I’m taking Linda for a haircut.”  You would think I had just told her that bananas were not being grown any more.

“Oh, no!”  Crestfallen look, great sighs.  (This is all part of a very predictable exchange.)

“Yep, I’m going to take her. Do you want to come, too?

“I ‘on’ know.”  Shrug.

“Well, you don’t have to if you don’t want to, but do you or don’t you?”

“I on’ care.”  Owlish eyes looking at me, more shrugs.

“You really don’t care?”

“No.  I ‘on’ care.”

So I will turn to just go back to what I was doing until she says, “Wha’ you fink I shoul’ do?”

“Audrey, it’s whatever you want to do.  I need to take Linda and if you want to go, I will take you, too, but it’s entirely up to you.”

The burden of decision is so hard for her, but eventually she usually says that she will go if I want her to.

“Audrey,” I will say, “it’s not whether I want you to or not, it’s whether YOU want to or not, and if you don’t want to, that is fine.  But I need you to say that you want to go or that you don’t want to go.”

“Alright ‘en,” she will say with the air of a great martyr,” “I’ll go!”  She almost never gets herself around to saying that she wants to, but she is greatly aggrieved it she thinks I’m not going to take her.

Yesterday, after finding out that there was a spot for her with her favorite hairdresser, I called First State Senior Center  and let them ask her if she wanted to go.  They may have been smoothing things over for me, but they said that she said “That would be okay,” when they told her and so I picked her up from Center and took both her and BL for haircuts.  When we were done there, I stopped at Walmart and bought a chocolate birthday cake for Linda to have with our supper.  It was deliciously chocolate, exactly what I had gotten for OGA on her birthday two months ago.  She had told me precisely what she wanted, and it had been good, so I decided to get exactly the same one and OGA could enjoy it, too.

We had a special dinner.  I had planned it with BL in mind because she likes food to be separated out — meat, veggie and potato.  If it were up to her, nothing would ever be served in a soup or a casserole.  I noticed that OGA was rather quiet during supper, and she looked at BL’S birthday cake when we were getting ready to serve it and pointed at the white flower that was on it.

“Wha’s ‘at???” She demanded querulously.

“That’s a flower,” I said.  “Remember?  There was one on your cake just like it.”  She looked at me dumbfounded, and shook her head.  “You remember,” I said, “you had a cake just like this for your birthday.”

“I don’ ‘memmer,” she said.

“Sure you do,” I said, convinced that she had to remember.  “I bought you a cake just like this for your birthday, and we sang ‘Happy Birthday’and you blew out the candles.”

“I don’ ‘memmer.” she said again.

“Audrey!  You have to remember!  You asked for a chocolate cake, and I bought you one and brought it home!  We sang ‘Happy birthday for you –”  He face was closed, and she had that empty look.  “– Wait a minute!” I said, “I took a picture!”  I fished in my pocket for my phone and pulled it out.   “I even took a video!”

I brought up the picture first because I couldn’t find the video.  She looked at it without much interest, but then I found the video and she actually could see the cake and she could see that it was in fact, her very own self and she saw herself blowing out the candles.

“Huh!” she said in disbelief.  “I don’ ‘memmer nuffin’ ’bout it.!”

 

This morning has been a tough morning.  There have been so many things chasing themselves around in my heart that all I want to do is find a quiet place to cry and to really cry hard.  It was bed changing morning, and I needed to take BL for pre-op lab work, EKG and Chest X-ray.  My pharmacy didn’t deliver OGA’s and BL’s meds that I had ordered twice, left messages about twice and even asked that if they weren’t going to be delivered last night, would someone let me know so I could come and get the ones that I so desperately needed this morning.  Certain Man was busy in his chicken house with a situation that was less than encouraging.  OGA was upset that I was going to go out with BL, even though it was for needles and such.  She was planning to clean her room and told me close to five times that she needed a new can of furniture polish (when she really didn’t) but  time is hard for her to internalize, and she didn’t know that I would be back before evening.  And of course, she didn’t want to run out.

It’s just more of the same behaviors with her that have been going on with OGA ever since BL was diagnosed.  She is so jealous of the attention that she feels she is missing out on, so determined to have something seriously wrong with her, and so demanding that it gets more than a little wearing at times.  I am reminded that it is OGA’s “pain speaking” every bit as much as BL’s behaviors are her pain speaking – it’s just that OGA’s pain is springing from a heart that has never felt like anyone really loved her or thought she could do better.

This morning, though, I finally sat down to write my lament to my Father, and I spilled the words onto the page of my prayer journal as the tears spilled down and down and would not stop.  I put numbers to the things that were troubling me, and then –

4. “. . . I wish that BL didn’t have cancer.  I wish she wouldn’t need surgery . . . “

5. “I wish OGA would remember the good things that people do for her.  I wish she wasn’t so paranoid.  I wish she wasn’t so demanding.  I wish she wasn’t so jealous.  I wish she wasn’t so selfish.  I wish that I could make her love me.”

And then I was struck by this “Holy Ton of Bricks” as I suddenly thought about The One to whom I was complaining.  I looked at that last paragraph and I wondered if God ever said that about me.  Oh, I know, He wouldn’t complain, and He wouldn’t say it like that if He did think it, but would He have reason to say it about me?

Yes.  Yes, He would!  

And while I don’t believe that Our Father caters to our wily ways, I wonder if it hurts His Father Heart when we don’t love Him when He has shown us His love in so many ways?

And someday, when the story of my life is played before my disbelieving eyes, There won’t be any excuse for me to say, “Huh!  I don’t remember anything about it!”

Oh, Lord Jesus!  Do serious work in this self centered heart, and may I love you, not for what you do for me, but because you love me, you chose me, and you have my good at the very center of your plan for me.  Let the sadness of this day, the things that make me cry, the things that weigh me down — let these be the very things that turn my thoughts and heart towards You with Grateful Praise.

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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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Holy Fire and Human Flailings

Lord Jesus, please hear the heart of Your Handmaiden.

I read this morning in Leviticus 10 of the death of Aaron’s sons, Nadab and Abihu.  As is the case every. single. time. I. read. it, my heart aches for Aaron and his wife and his family.  Here is Aaron, in his mid eighties at least, and his sons — were they reckless youths?  We know they had no children according to the scriptures.

It seems so harsh, Lord Jesus, so final, so – well, so without warning.  I always struggle when I plow my way through this passage and read of a father who “said nothing,” when it happened.  A father who wasn’t allowed the “comfort of mourning,” wasn’t given any time off from his job, all under the thread of death.  “And Aaron . . . obeyed.” (Lev.10:7)

What must he have felt, though, and how could he have dealt with it?  There was no arguing about who had passed the severe judgement, no arguing with this God who had, always had, the final say, the trump card, the final word, supreme power , ultimate authority . . . This morning I feel like this fuzzy, rebel brain is at the very edge of an answer that can help this aching heart.

First of all, Lord Jesus, I do not know the whole of the circumstances that let up to this.  From what it says, the boys, (young men) were duly warned, thoroughly instructed and well aware of what the protocol was.  And because you are GOD (who has the final say, ultimate authority, etc.) what you did was right – and (though I choke when I say this) GOOD.

Father-God, in this whole nitter-natter about “Why?” and seeking to come to acceptance and peace, I feel like I am missing something important.  Something to do with your Holiness.  Something about the God-Fire Purity that is the essence of this “I AM” God, whom I’ve chosen as my God, but whose very essence I do not begin to comprehend. I cannot capture the depth, the intensity, the incomprehensible HOLINESS that is God.  Awesome, Powerful, and Eternal — and yet, You love me like a protective Father; care (infinitely more than I can imagine !) what is going on in my heart and call me to reflect that Holiness with purity.  And it occurs to me that when I offer anything else back to you except “Holy Fire,” it spells DEATH.

But why?  Lord Jesus, Why?

Is it because that what is at the root of the “strange fire” is an attempt to appear right before you, and before those watching?  That is not only prideful and deceitful, but an affront and a contradiction of WHO you are, and WHAT you are.  And this strange fire cannot help but be swallowed up, consumed by the intensity of your Holiness and Purity.  It’s not as much a  judgement call by a Holy God as it is a very natural consequence.  It’s almost like a tiny flame, inching up a glowing wick to a stick of dynamite, assuming he is the victor because he burned the wick all the way to the end. None of us would say it was the dynamite’s fault for totally encompassing and extinguishing the flame.  We would think it ridiculously ostentatious for other flames, looking on to accuse the dynamite of wrong doing, or hasty judgement or of unfeelingly, arbitrarily “making rules” that explode with deafening brilliance and force and destruction and death.

Oh, Holy God, our God!  Passionate and pure and intense and full of fire.  Not because you decide to be, but rather it is because You ARE.  Somehow you decided to use poor, wretched humans to reflect your perfect Holiness — elevating us to sons and daughters (Family!) and we accuse you of being unfeeling or unfair when we fall victims of our own foolish, selfish, and prideful plans that cannot begin to stand before you- Glorious, Awesome, Righteous, Burning Holiness and Purity.

And it is just that, Heavenly Father.  I cannot stand before you, pretending to have any fire that matters to you at all.  I feel exposed, weak and useless in my wretched reasoning and the offerings I bring.  I want to cower in the darkness, away from your throne, wondering what to do next.  But I hear words of hope, ringing in this head that I want to cover.

“For we have not an high priest that cannot be touched by the feelings of our infirmities . . .  in all points, tempted like as we are . . . ”

Ah, Lord Jesus!  My Brother, My Redeemer!  The one whose fire is the only fire I can offer back to the Father – I eagerly and frantically and deliberately and with nothing to repay you, choose you!

The fear melts away, the bitterness running off my heart in rivulets as You become Righteousness in me; rekindling the Only Fire that is acceptable to God The Father.

And my heart gives grateful, humble praise.

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