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 resident. In a delightful surprise, it was way easier than I had anticipated. Over the years, Cecilia 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. Cecilia’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 Cecilia 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, Cecilia 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. Cecilia’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 Cecilia 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 Cecilia 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 Cecilia’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 Nettie and Cecilia. 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 Cecilia’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 Cecilia, 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.)
Delaware Grammy 