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.
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.