Delaware Grammy

It’s been weeks since Cecilia landed in room 215 at the Milford Genesis Health Care Rehab ward.  The first four were spent, still in a cast, but going to therapy every day.  She didn’t seem to be hating it any, but wasn’t all that enthusiastic either.

Every day, with the exception of three or four, I’ve gone into the nursing home to collect laundry, put clean laundry away, straighten her closet, wash her face, talk to her, adjust the pillows under her elevated legs, check on her progress with the staff, or in the evening, to sit by her bed, smooth her covers, sing her some favorite bedtime songs, and to pray with her before she slept.

There were days when it seemed right to pick up a dozen Krispy Kreme Donuts from the local Royal Farms and take it in to the staff.  They treated me so well, and were almost without exception, eager to chat a minute, learn about things that worked with Cecilia, and to inform me of anything that was an improvement.  They were kind to Cecilia, thought that she was “so sweet,” and took very good care of her.

She has had a succession of good roommates;  women I’ve become friends with.  They have been of a great help to me, informing me of things that have happened, and letting me in on their lives as well.  This started back in the hospital, and always, always, I’ve prayed for Cecilia  s roommates when I pray the nighttime prayers.  They have been grateful, and their thanks has been one of the ways that God has moved me to continue this practice, night after night after night.  In the nighttime prayers, I’ve also prayed for the nursing home, for the nurses, the CNA’s, the therapists, and even the janitors.  I’ve especially prayed for the “hands on” caregivers — for patience and for strength and for wisdom and insight into the needs of the patients.  I’ve prayed for gentle hands and kind words.  I’ve prayed for everyone who is there, in a general sort of way, that there would be healing for those who are there for rehab, that there would be peace.  I’ve prayed that those who come into Cecilia’s room would sense the very presence of Jesus, and that it would be a place of peace and comfort and calm.

About two weeks ago, Cecilia’s cast came off.  The healing was complete.  There were no restrictions, nothing to hold her back from full rehabilitation.  It was Thursday, the day before the July 4th weekend.  Her therapy sessions for the first week were very spotty, but when I inquired as to how she was doing, they would say that they felt that she was making progress.  “Just not very fast.”  Last Friday, when I went in, the delightful gal who has been doing her therapy caught me up on how things were going.

“We are pretty sure that most of this is behavior,” she said, “because she is doing just fine with transferring and such.  But she just will not stand up for us for any length of time in the rehab room.”

I was not surprised.  Cecilia tends to be a little lazy when it comes to such things, and if someone is going to do stuff for her, she is very inclined to let them  And as far as the work of rehab?  Let’s just say that years ago, she broke her left wrist in a fall at Easter Seals and we never did get that hand back to normal.  “She can,” (as her mother says) “be a little stubborn.”  I stopped by during one of the sessions, and it was obvious that she really wasn’t cooperating to the extent of which she was capable.  My heart was heavy.  I mulled over the possibilities and breathed a prayer for wisdom.  If things didn’t change, she was going to end up over in long term care.

I finally had a chance to speak to the physical therapist.  She was a bit disheartened, but not giving up.  She just didn’t know how to reach our blind, non-verbal, autistic girlie.  I didn’t know what to tell her with any concrete suggestions, but I finally said to her, “You know what?  I’m going to really pray about this.  I’m going to ask God to give you guys creative ideas and I’m going to think really hard and ask God to give me some ideas as well.  I’m thinking we just need to find the right solution to this.”  They agreed with me, and I went on home.  I later thought about how much Cecilia likes ice cream, so I called back and talked to the therapist about incorporating ice cream into therapy.  She was delighted with the suggestion. She also mentioned that they felt that the ankle brace that had been sent along as a precautionary measure, didn’t fit into Cecilia’s shoe properly, and they wondered if that was part of the problem.

Like I said, that was Friday.  On Saturday, Middle Daughter, Deborah, went in for me to sing to Cecilia and say prayers and bring home the dirty laundry.  Her mother, with a death in the family and (at almost 88) having health issues herself, had managed to get in earlier in the day.  Of course, being the weekend, there was no therapy.  On Sunday, I bought an ACE ankle brace at Wal-greens, went in and made sure it fit inside her shoe, and wrote a note to the therapist.  And prayed.

Monday afternoon, I stopped by the nursing home because I was out anyhow, and I was surprised to see one of the therapist coming down the hall towards me.  She was fairly dancing and before I could get anything out, she said, “Did they tell you???”

“Tell me what?” I asked.

“Cecilia walked today!  And not just a little bit!  She walked from the back of the rehab room all the way out to the nurse’s station!”

I could not believe my ears and my disbelief must have sown on my face.  “How in the world???”  (This was the girl that wouldn’t even stand, much less walk, just three days ago.

The therapist said, “I don’t know why, but this morning I said to Felecia, ‘Why don’t we just try her with one person on each side of her and try walking her that way?’ So we did, and she walked!  Is she up now?  Because we will show you!”

My heart was somewhere in my throat.  I peeked around the corner to see if we were talking about the same person.  Yep!  It was her, alright.  Sitting in her recliner like a bump on a log. Cecilia???  Walking???  And then it seemed as if the stirring of the Holy Spirit began stirring something warm and alive in my heart.  Wasn’t this exactly what I had prayed for?  The therapist decided that it wasn’t worth getting her up just to prove that she could do it, but the whole atmosphere was charged with emotion.  It was time to celebrate!  I went out to that Royal Farms and found the racks full of just delivered donuts. Perfect!  I corralled myself a dozen and headed back into the unit.  And celebrate, we did!!!

But that isn’t the end of the story.

When I was leaving the nursing home two nights later, a nurse, standing at her medication card, looked up with a smile and a comment about my frequent visits.

“Yes, well,” I said, “I wouldn’t want her to forget me!”  Then because she was working the evening shift, I asked her if she had heard about Cecilia walking earlier that week.

“Yes!” She said, beaming.  “It’s amazing!”

I told her then about how we have been at a loss to know how to motivate her and how I had told the therapists that I was going to pray for good ideas and things that might help, and how I felt that it was a direct answer to a very specific prayer when someone came up with a solution that worked.

“Well,” she said, laughing.  “You must be spreading pixie dust all over this ward because it seems like everyone on this hall is making phenomenal progress right now – getting better, faster and are just far above the expectations!  We can’t figure out what’s going on!  It’s a little unusual, to tell you the truth!”

And this Delaware Grammy was suddenly on Holy Ground with goose bumps to boot!

So I told her how I had been praying for all of the staff as well as the patients there in the nursing home.  I said that I have been praying exactly that for the people in there.  I explained how I prayed that Cecilia’s room would be a place of peace and that when people come in there that they would feel the presence of Jesus.  She looked at me strangely and said something about that being an incredibly nice thing for me to do.

And I said to her, “It’s not me, for sure, but it is an incredible God!”  And then she let me out the back door into the night and I came home with this quiet, joyfully incredulous place in my heart.

But one of the things that sorta’ made me wonder a bit was that I couldn’t figure out why God didn’t tell me that tip.  I mean, I should have known it because Cecilia has always liked for there to be “both arm support” even when she was feeling good.  I never thought about it.  All I could think of was that lame suggestion about feeding her ice cream as a reward for co-operating.  (No one said anything, but I was pretty sure they thought that was a little far-fetched.  And not age appropriate, for sure.)

However, the next day, I was talking to Cecilia’s mother.  I asked her if she had been in to see Cecilia a during therapy and she said that she had been there.  “But I didn’t see her walk,” she said.  “I did see the funniest thing, though,” she said, chuckling.  “They had Cecilia on the bicycle!  And they were feeding her ice cream!  Every time she would pedal a few rounds, they would give her ice cream.  Then she would pedal a few more rounds, and they would give her ice cream!”  She paused and laughed again.  “Funniest thing I ever saw!  I never would have thought of such a thing,” she said, “but it was working!”

“No, I wouldn’t have thought of it either,” I thought.  But I did ask, and I shouldn’t be surprised at His direct answers, especially when it comes to one of these who cannot speak for themselves. Cecilia has a long way to go, but she is progressing.  If this keeps up, she will be able to come home.  So I plan to keep on praying – for her, for healing, for the people on the rehab ward, for the nurses, the CNA’s, the therapists, the janitors.  I plan to keep on praying for wisdom, insight and creative ideas to help her cooperate.  And I’m especially going to pray for peace and for the presence of Jesus in Room 215 at Milford Genesis Health Care.

My Heart gives grateful praise.

These days are closing in on my heart in ways that make me stop, step back and regroup. I had to talk firmly to myself in the doctor’s office this afternoon because I suddenly was crying and the tears were dripping off my chin in a most unflattering matter.  Even though I couldn’t see, I’m pretty sure people were looking at me.

There  are a thousand reasons for tears, I suppose.  There are family issues that trouble me.  There is much uncertainty over our Cecilia and Medicaid’s strange regulations.  The broader church family has issues that make me shake my head, scratch my head (and sometimes hold my head in my hands in despair or shame or sorrow — or all three!).  There are people who speak Jesus with their mouth and something else entirely with their walk, shedding a skewed view on the Light that sets men free.  I have a rebellious right foot that seems to have decided to keep up with my crazy wrong — I mean left foot in giving me grief  I told Eldest Daughter, Middle Daughter and Beloved Niece, Holly that I’ve been hobbling around like “an old woman” to which Eldest Daughter, in an attempt to comfort me said, “Well, Mama, you have every right to hobble around like an old woman.  You’ve earned it!”  (Really, Chris?  What is that supposed to mean???)  It’s full moon, and Our Girl Nettie (whom I just bragged was doing so well) got hit with the Green Eyed Monster at her day program and thinks the world is against her, that she isn’t being treated right there because they won’t let her do “the shredding.”  I think I must have told her too often that she is the smartest and the prettiest one there because she is suddenly feeling entitled.  And that’s not even everything!

(So yes, there seems to be plenty to trigger the tears.)

However, I think the main thing that is squeezing  my heart so hard that it makes the water stand in my eyes is this whole season that we are in — these days when we mark the anniversary of Sweet Mama’s last four weeks on this earth. Everywhere I turn, I keep seeing pictures of her.  This one caught my heart especially, taken by my sister in law, Polly Yoder, and so, so typical of Sweet Mama with the babies of her family.

My Sweet Mama, my younger brother, Mark, Jr., Mark’s youngest son, Timothy, with his newborn son, Travis.  This picture was taken about a year before she passed away.

Sweet Mama loved babies.  I remember how excited she always got when she was getting ready for the births of my youngest siblings.  She would sew little flannel kimonos for them, and lay in a supply of Baby Magic.  She sewed those old fashioned “belly bands” for wrapping tightly around the newborn’s tummy to keep the baby from getting an umbilical hernia.  She had her babies at home, so she would make supplies for the birth that could be taken out and burned before inquisitive eyes would wonder just what sort of mayhem had gone on in this birthing  business. She confided to me that she “dreaded” the labor and delivery, but there was never any question as to whether she loved her babies.

This picture started the tears all over again. Yes, I KNOW she’s okay! I KNOW I’ll see her again, but I miss her!  And there are so many things that I wish I could tell her tonight — like happy news of Clint and Sharon’s engagement (Wouldn’t she have a heyday with that exciting news?) or about Lem and Jessica’s pregnancy, or Tyler and Amy’s new baby boy, and all the “woman details” that we like to know.  She loved to hear about the love affairs of her grandchildren.  She felt sorry for them in their broken hearts when that happened and aggravated when they were the heart breakers. Life news — babies, love, engagements, weddings — these were the things that she loved to hear and talk about.

What I wouldn’t give to be able to call her up or stop in and just talk awhile! TWICE this week I dialed her number when I was trying to call someone else. I don’t think I’ve done that even once in a YEAR! It’s like she’s sitting on my subconscious, saying, “I was wishing you would call!  I haven’t heard from anyone ALL DAY!”  The truth is, if we were even able to bother her, she probably would answer in that short, clipped way of hers that she would use when she didn’t really want to be bothered.  Remember that, siblings of mine?  It was this unmistakable, short off sort of way, and we knew that she was either involved in something else or talking to someone else or aggravated about something and could hardly be bothered to answer the phone.

Two years.  Sometimes it seems like yesterday and other times it seems like decades.  And there is no “fixing” this in any satisfactory way.  It’s just another bump in the road of life, reminding me again that it we did not come here to stay.  It’s a reminder that Heaven is not all that far away, and there is so much more to LIVING than here and now, It’s a reminder that the time grows short.

Maybe I have earned the right to hobble around like an old lady.

It was Grammy Night. Charis had come into the house with lots of high hopes for what she wanted to do. But I hadn’t gotten input from Grandpa about the spray painting that I had hoped to do (and I know enough to know that it isn’t a good idea to just go about and randomly change the colors around here).

So we washed her “squiggwie fings” (water beads that grow in water that get smelly after a couple of weeks and need rinsing off) and washed dishes. She had some snacks and I told her that we would go and plant the marigolds once Auntie Beebs was able to help us. She found a fly swatter and tried to kill the flies that kept buzzing in and out, and made a few trips outside to ride her bike out to check on the kittens.

And then came back in and stood quiet at the kitchen sink, watching me work. It was then that I heard a pensive little voice say, “Well, Grammy. I’m not having the kind of fun I was hoping for tonight.”

There was no anger, no angst or incrimination of this Grammy who just wasn’t measuring up. Just a quiet stating of facts that made me smile — but also gave me a reason to ponder a bit.

Ah, yes, my Charis-girlie.  I hate to tell you, but you might as well get used to it.  Over your life span, I’m afraid that there will be a whole lot of times that we don’t have the kind of fun we had hoped to have.  But if you just hold on, keep that heart of yours right, and let God work it out, you’ll find that there is great satisfaction in what you are able to do.

And if you hold on even longer, you will discover that satisfaction is worth a whole lot more than just having fun.

For Grammy nights, for words from my grandchildren, for marigolds planted and a friend from long ago that is sleeping upstairs in my spare bedroom.  For an old bike made new, for container gardens, for the winter supply of pellets safely unloaded, for a husband who puts up with so much and for progress for my Cecilia-girl, for this and so much more —

My heart gives grateful praise.

It was hotter than blazes in the parking lot at Milford Genesis nursing home.  I had come in several hours earlier with Cecilia as they moved her from her bed in 232b at Bayhealth Milford to her new home in Room 215 in Rehab at Genesis.  Her mother had met us at the nursing home, carrying two new pairs of pajamas.  She stopped by the side of the ambulance as they unloaded her daughter and then waited for me while I was unloading things from the minivan.

Cecilia was distraught.  She had several episodes of shaking that resemble shivering.  She will do this when she is upset or worried or in a situation that is unfamiliar.  She had reached her hand towards me when I got into the hospital room earlier this morning, and grasped mine in hers like she was never going to let go.  When I disengaged her hand and was getting ready to comb her hair, she began shaking like she was cold.

“Cecilia-girl, I’m here,” I said.  “It’s going to be alright.  We are going to get you to a place where we can get your legs stronger so you can walk again and come home.”  As long as I stroked her arms and spoke soothingly to her, she wouldn’t shake.  But if anyone came in or if I wasn’t fully engaged with her, she would start again.  I wondered again about this girlie and what was going through her head.  Did she think she was going to be abandoned again?  Did she fear being stuck and prodded and misunderstood? How much did she understand about this move?

The transport came, and she was taken from the familiar bed and put onto a stretcher and taken the few miles to the nursing home.  I drove over, and then Cecilia’s mother and I answered questions, talked to a lot of different staff, and waited.  I fed Cecilia her lunch that came shortly after we got there, and when Cecilia Mom decided that she was going to go back to Newark around 3:00, I offered to bring her car around for her.  She had parked in a side parking lot  when she arrived because of being unfamiliar with the institution, and the walk was a long walk for someone her age.  At first she demurred, but when I insisted, she handed me her keys and I went out to put some stuff in my car and to bring hers around.

Just before I pulled into the parking circle where there was a handicapped space for her, another quick red SUV whipped in ahead of me and took the spot.  But I wasn’t too perturbed because there were two women getting into their car that was in the same row, and was even under a shade tree, and so I decided I would make the circle and wait for them.  And so I did.  I waited and waited.  The sun got hotter and hotter.  I couldn’t figure out the AC for Mrs. S’s car, but I thought it would not be much longer, and I waited and waited.  The two ladies just sat there in that hot car.  I waited some more.  Someone came buzzing around me and took a spot farther down the row.  That made me cross, too.  Why didn’t I just go down there?

Finally, after it seemed like I was going to melt in that blistering hot car, I decided to see if those gals were going to leave or if they had other plans.  I got out of the car and walked up to their open window.  They were both busy on their phones, scrolling through stuff as casually as if it were their living rooms.

“Excuse me,” I said (with cheerful voice)  “Are you ladies leaving?”

“Oh, yes, we are!” They chorused.  “We’re so sorry.  We really are!”

“If you’re not, that’s okay.  It’s just that I brought this car up for an 88 year old lady and if I could have your parking spot, I would really appreciate it.”

“No problem,” they said.  “Of course!”

I went back and got into my (or rather, Mrs. S’s) car, wondering why I hadn’t done that sooner.  They put their car into reverse and backed out and I slid into the spot before anyone could steal it from me, and was most grateful.   I locked Mrs. S’s car carefully and headed towards the nursing home.  After the sweltering car, the breeze felt good and we were almost finished with the admission and (maybe) I could go home soon.

I walked down the sidewalk, feeling the  weight of  the day on my shoulders.  It had been a tough day on several fronts.  My crazy feet were not co-operating with me like I wanted them to.  I came around the corner to head into the nursing home and caught my toe on the small discrepancy between the sidewalk and the one that was perpendicular to it.

“Oh, no!”  I felt myself hurtling forward towards the ground at an alarming rate.  Thankfully I remembered what happened when I let my face hit first, and I threw my left arm out to try to break my fall.  Ker-thunk!  Now I felt the weight of my day (Plus a lot more!) on my left elbow.  I scrambled to my feet, looking frantically about to see if anyone saw me.  Whew!  No one in sight.  I had kinda’ rolled over onto the mulch beside the sidewalk, and there were long black strands of sticks hanging onto my sweater and skirt.  I hastily brushed them off and kept on walking, into the sanctuary of the front door of the nursing home and its cool, welcoming foyer.  No one noticed as I made my way down the hall and into Cecilia’s room where Mrs. S waited.  I’d been gone a long time for just moving her car up.

“Wow!” I said.  “It’s really hot out there!”

“Isn’t it amazing,” she said in her cheery voice.  “It was cold when I left Newark, but by the time I got here, it was really hot!”  I was grateful that she didn’t ask why it took me so long.  We made small talk and then as she was getting ready to go, I discovered that there were a whole lot more strands of mulch hanging from my person in diverse places.

“Oh, dear,” I said, as I tried to pull them off.  “I must have missed these.”

The story came out, then, and one of the pleasant staff observed that there were even more that I had missed on my shoulder and the back part of my upper arm.  She pulled them off for me, and finally I was cleared of all the evidence.  I laughed about it and brushed it off as inconsequential because, in fact, it pretty much was.  Finally, Mrs. S left, the last questions got answered and I could flee to my car and drive to the safety of my house and the quiet of my chair.

No one watched me as I searched for any abrasions or blood.  (There was none.)  No one saw me pull up my sweater sleeve in front of the bathroom mirror to see if I had somehow broken a bone in my forearm or elbow when I came crashing down.  Nope.  It  just aches.  As does my right foot.

Most importantly, no one knew when I checked this aching heart and found that I finally had time to sit and think and cry a bit.  Some days are just hard, and even though I keep telling myself that this day could have been a whole lot harder, and even though I KNOW that I’m a woman blessed beyond measure.  — This day was one more really hard day in a string of hard days, and I’m good and ready for some normalcy.

I came home to fresh chocolate chip cookies on the kitchen counter.  The dishwasher had been loaded and was clean, and after a while, Nettie came home and was pleasant.  Certain Man is on his way home and he averted the accident on Route One by taking another way home.  There are happy secrets to be told very soon, and there are highly anticipated visitors coming and family reunions and picnics and all sorts of wonderful things to look forward to.  The driveway monitor just notified me that Certain Man is home and it’s time to catch up on his day and enjoy the evening.

Blessed???  You bet’cha!

My heart gives grateful praise.

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 Cecilia’s stretcher in the emergency room. 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, Cecilia 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 Cecilia.” 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 Cecilia 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, Cecilia 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 Cecilia.  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 Cecilia 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 Cecilia 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 Cecilia 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, Cecilia’s mother showed up unexpectedly.  One look at Cecilia 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 Cecilia; pulse and respiration good.  Mrs.S 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. S left that the CNA came and gave Cecilia her bath, and lovingly lotioned her up and made her look sweet and clean.  Cecilia 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 Cecilia-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:  Cecilia 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.

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.  Cecilia 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 Cecilia 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.  Cecilia’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 Cecilia’s Mom worries, too.  About Cecilia, of course.  Wants to make the right decisions for Cecilia, 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 Cecilia 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 Cecilia into the hospital in the first place.

Sunday night, after coming home from the hospital around ten o’clock, and feeling like Cecilia’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 Cecilia lives, or (Oh, Lord Jesus, please!) whether she doesn’t, that Jesus is in This Place!  That people would know Cecilia 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 —?  Pray that Cecilia 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 Cecilia-girl and each of us, and for friends who pray —

My heart gives grateful praise.