Sweet Numbness

Dear Lois,

Kensington and I arrived in Dallas late Sunday night and headed straight to Hospice, where Mazha was admitted on Saturday morning. A lot has happened over the past couple of weeks. On Monday, January 25th, Mazha went into the hospital due to breathing problems, as well as problems eating. They told her that her only option was to go home, call 9-1-1, and come in through the emergency room. Otherwise, it would be hours before they would be able to help her. They brought her home and did that, even though transporting her in the vehicle caused so much pain. After being admitted, they ran numerous tests and early on Tuesday, they preformed a tracheotomy and inserted a feeding tube in her. She stayed in the hospital through the weekend and was breathing fine on the trach/vent and was taking the liquid food quite well via the feeding tube. We called the local Muscular Dystrophy Association and were able to secure a hospital bed, feeding tube pump, IV, and vent with bipap as well as several ‘meals’ that she could take through the tube. Once she got home, she started regaining her energy and finally started to fight the disease. When we’d call, I could hear her talking past the trach and she even talked about wanting to make a trip up north during the summer to see us. She had this type of strength for a couple days and then started having breathing problems on Thursday. They brought her back to the hospital, where they were told they could do no more for her. On Friday night, Dad and Simone got her admitted into Hospice as she's needing 24 hour care and it's something that they can't do on their own, and a home health aid is not going to be able to assist because she's on a breathing machine. In order for her to be able to be admitted, she needed to sign a DNR order… something that she said from the very beginning that she wouldn’t do. Once she fully understood that Hospice would be able to manage her pain, allow us to stay with her 24/7, and provide the care that only a doctor would be able to give her and that the DNR was only stating that if her heart stopped, they wouldn’t resuscitate her, did she decided to sign it.

Kensi and I decided to head down there now (originally, we were coming down at the end of the month to visit) for the next couple of weeks - to either be with her to help her get better or to make the final arrangements needed. Before we left, which was delayed because of the potential winter storm the east coast was going to get, I spoke to the nurse at Hospice just to get an update. They stopped feeding her since she arrived because she was vomiting, which was occurring the last two days she was at home. They had sedated her through the night and were waiting for her to wake up. The plan was to start feeing her again on Sunday and it will go two ways: 1) she take to the food and regain her strength and she will be back to the way she was prior to being admitted, or 2) she won't take to the food and this will be the end.

When we arrived Mazha’s room was filled with the Hospice staff, along with Simone, dad, Auntie Paulette, Jordan and her fiancé Chase. Mazha was up and semi-alert because of the medication that where injecting through the tube. I had braced myself for the trach, but didn’t realize the number of tubes that she would have coming out of her. She smiled the moment she heard Kensington. Looking around the room, you could see numerous pictures of Kensi taped to the walls so no matter which way she was looking, she could always see her. She took a moment to touch with Kensi’s feet and gruelingly wave towards her a couple times.

About a half an hour after we arrived, you could tell that the entire day spent traveling was taking a toll on Kensington. Simone and the girls decided to take her to their house so I could stay the night with Mazha. I tried to get Fazha to go home to get some rest, since no one had slept in days, but he refused to leave her side. He went outside to the linen closest and brought me a thin sheet and a thick sheet for the cot. He tried to convince me that the thick sheet was a blanket. I wasn’t buying it.

When we first entered the Hospice center, I noticed a door that was labeled “Clean Linens”, so I decided to try my luck to see if I could snag something, anything, which was going to help provide me some warmth. When I opened the door, there were numerous shelves with sterile whites; sheets, pillowcases, towels, and blankets. Off to the side, I noticed several quilts and afghans so I grabbed the thickest one… the one located on the very bottom of the pile. There you were. White and green with a starburst pattern. Throughout the night, in the cold, freezing room, you kept me warm. It was more than being wrapped in warmth… it was about being wrapped in love. You allowed my hand to burrow through so I could hold her hand all night. The sound of the breathing machine working going off every 8 seconds and the light of the full moon coming in the window barred me from getting any sleep. The nurses, coming in every two hours to relieve Mazha from her pain would creep in, turn the lights on and go to work. I would sit up and try to assist whenever I could, but through the night I felt helpless. All night she ached. More pain meds through the feeding tube. Around 5 am, they came in to flip her on her side to help relieve some soreness. At 5:45 they came in to clean the room (are you freak’n kidding me), and at 6 Marla came to visit before she headed to work. Dad stayed asleep, on his makeshift bed on a reclining chair and a visitor’s chair. Marla stayed about thirty minutes and when she left, I tried to get some sleep. You were there, on the cot, telling me everything was going to be okay. You didn’t smell like the sheet below me…that was hygienically clean. Bleach. You smelled like Japanese cherry blossoms. A fragrance that Mazha often smelled like. For the next three hours there was peace. I heard one of the nurses open the door, but she quickly shut it. I was able to shut my eyes and sleep. Forget my surroundings. Feel your embrace. I finally felt the ‘sweet numbness’ that I had heard about.

At 9:30 when another nurse came in, we realized that it was time to start the day. I had to go to Simone’s to pick up my little chickpea and return to Hospice so we could spend our time with Mazha. After I put the cot away, I went to fold you and that’s when I saw your name. In the corner of the quilt, “In Memory of Lois…” was penned. Well, Lois, thank you for the rest, thank you for your gentle embrace, thank you for your healing touch. I’m sure we’ll be in contact soon.