I still wake up some mornings and wonder how all of this could be happening. It still doesn't seem real.
Billy has been gone for just over 24 hours, and I still can't believe it. I miss him like crazy, and I can't imagine life without him! The whole journey seems too short...
Just after Billy was diagnosed on September 23, they told us that he probably had a year to live. A year! It seemed so short. None of us imagined we'd have even less time with him.
The past week or so was incredibly difficult for Billy. His pain level rose; breathing got more difficult; and Billy started to sleep a lot more as the doctors increased his pain medication. It was difficult to watch him struggle.
It feels premature to have to tell you all that Billy passed away the night after Christmas. I'd rather tell you other stories--like the story of Buddy's reunion with Billy, or Christmas Eve night as some of the family hung around Billy beside his bed. Those stories are rich and full. But Billy is gone now, and life feels a lot more empty. I miss my brother more than words could ever say.
On the day after Christmas, I woke up late. We had been up late the night before, and I hadn't slept through the night since Buddy had arrived on Christmas Eve. (He's my new room mate, and he likes to take charge of the bed real estate sometimes.) Also, I was just plain tired.
Around mid-day, I called my mom to check in on how Billy was doing. "Things seemed to change this morning," she said. "Billy started having trouble breathing, and he seems different now." I wasn't sure what different meant, but there was an urgency in her voice. "If I were you, I'd get over here as soon as possible." So I got off the phone and contacted my siblings. One by one, as soon as we were ready, we headed over to the hospital.
As we passed by the nurses' station on the way to Billy's room, the nurses were quieter than usual. It seemed like something was wrong.
When I got to Billy's room, I knew that something was different. His blood pressure was slowly dropping; he had a fever; and his breathing was strained. Instead of the oxygen tube, he had an oxygen mask. His eyes were open, but I don't know how alert he was. He wasn't really able to say anything.
As a family, we stayed by Billy's side all day. Our nurse--Ellie--was amazing. She watched Billy closely and attended to everything we needed. Billy's doctor--Dr. Klotz--was full of empathy. He did everything in his power to make Billy feel the best he possibly could. But Dr. Klotz and Ellie both knew that sometimes their all is not enough. Ellie frequently asked how I was doing; she knew it was tearing me apart inside. Dr. Klotz knew it was hard, and he was somehow both honest and compassionate as he shared his thoughts. The morning after Christmas, Dr. Klotz told Billy that God might be taking him home a bit sooner than he had expected, and he told us as a family that it would probably happen in the next 12-24 hours. For the rest of the day, family stayed by Billy's side.
As evening came, we called Sam--one of the army nurses who had become a family friend. Sam wasn't working that day, but he had asked that we call him if anything changed. Soon after we called him, he joined us around Billy's bed. Just after 7pm, the nurses changed shifts, and Roxanne--another amazing nurse--joined us. It wasn't until after 8pm, well after the shift change, that Ellie (the daytime nurse) left. It was an emotional goodbye. I think it's hard for nurses to care for patients well without their hearts becoming attached.
We took turns around Billy's bed. Occasionally, he'd make a sound, as if he wanted to say something, but he couldn't seem to form the words. We took turns holding his hand; once in a while, he'd give us a squeeze, and we'd squeeze back. It was the only way we knew to love him--to be there and to tell him how much we loved him. Knowing the time was short, we told him the remaining things we wanted to say.
Just after 9pm, his pulse started to drop. It had been just over 100bpm for much of the afternoon and evening. It quickly dropped to 90bpm, and then dropped even lower. Roxanne couldn't get the blood pressure machine to register, so she took his blood pressure manually. That, too, was falling.
His breathing became slower--more labored, less frequent. I knew it was coming. Time to let go. There was not a dry eye in the room. I'm not sure any of us could really believe it was happening. We had been told this day would come--and it seemed like it was coming much too soon.
Around 9:30, the doctors came in. As they turned to my mom, my heart broke. "I'm sorry for you loss," the doctor said. We had known it was coming, but her statement felt so final. They checked Billy's eyes and closed them. "Time of death," she said, "was 9:35pm." She turned again to us. "I'm so sorry. You may stay as long as you need." And she left the room.
It came so soon. So suddenly. Too fast.
For now, I'll just say that Buddy did arrive in time, and the reunion between Buddy and Billy was one of the best Christmas gifts Billy could have received. I'll share the story of that reunion soon.
We also shared one more Christmas together as a family. It was a tough day for Billy--but we spent it with him. I have no doubt that he knew he was dearly and deeply loved.
Thank you to all of you for your gifts, cards, support, hugs, phone calls, text messages, prayers, jokes, wisdom, encouragement, and friendship. You mean a lot to us, and our lives are richer for having known you. We are honored that so many would join us on this difficult journey.
Note: We are working through the details regarding funeral, memorial, and burial arrangements. Once we know more, I will post an update here.