Endings and Beginnings

Today ended well.  I caught the distance to keep my threshold goal for the month on track, and the 33 degree weather this morning seemed balmy compared to the last couple of days.  I walked my normal routes, and the day unfolded along the standard lines.

Night on the Anacostia with the USS Barry

It was a rather unremarkable day when viewed through the lens that is normally used to judge these thing, but the gift of being alive made it extraordinary.

The third and final day that we spent in the hospital with our daughter  was two years ago today, and by this time in the evening we had come home from the hospital without her. She would never come home again.

The night before that final day was a much more bearable experience for me than the previous evening. In retrospect, I am deeply grateful that the organ donation coordinator asked us to wait to remove her from life support, and that we agreed with this arrangement. For reasons that I don't understand completely the anxiety of time passing too quickly and simultaneously seeming to drag on for an eternity had left. I guess that I had begun to come to terms with the situation, and because of that change I was able to more effectively soak in the moments as they moved past my experience.

We held her, and my wife finally was able to get some sleep.  She laid down with our daughter in her bed and they rested together. I took some pictures and talked with her night nurse. Kyle was a remarkable man. I find it difficult to comprehend the grit it must take to come to work and care for very ill children and their grieving parents day after day. I don't remember all the details we discussed, but I do remember remarking as he changed the collection bag attached to our daughter's catheter that the recruiting brochure that had lured him into nursing probably didn't feature that part of the job as a picture anywhere inside it. There was a pause for a beat, and we both laughed loudly in a genuine way.

The night passed onward into history, and preparations began to be made to transport our daughter to the operating room. The plan was to stage her there, remove the respirator, let us hold her on what we all knew would be the final moments of her journey here on earth, and proceed with the organ donation that we'd agreed was the best path forward. She was supposed to go in at around 0830, but like most things in the hospital things were running a bit behind. We both held her again, and at around 1030 the time had come to make the journey to the OR together.

We got to the OR, and they settled us into a set of chairs and passed our daughter to our wife. I remember thinking that the temperature was quite cold. It wasn't just me. The temperatures are actually chilled to facilitate the procedures in the room. The lights were very dim, but the details I could make out were not at all in keeping with the bright shiny pictures of these places that I've seen depicted in movies and television. The room was painted white of course, but the operating theater was much larger than I expected. It was utilitarian and set up with anything and everything one might need to successfully cut into a living human, repair their sickness, and bring them back from the brink of death. That wasn't going to be the story of our trip there, but it was a room that was all business and professionalism.

I'm not sure what anyone expected to happen when they removed our daughter from the respirator. I know I didn't. They stopped the machine and started the stop watch. The resident that had been with us from the beginning and her night nurse Kyle kept watch over the pulse oximeter and EKG that were tracking her vital signs. Kyle was supposed to go off shift at 0630, but he requested that he be allowed to stay till the end. I will be forever grateful for the care her provided to us all and his solidarity with our family was a great comfort during a very difficult time. The screens were facing away from us and the alarms were on mute.

I would like to say that I handled the situation with grace, but I really did not. From the moment they removed the respirator, I began to wonder what the next moment or second or hour would hold. Our daughter continued to breath, but it was not very long until it became apparent to me that her breathing rate was slowly...ever so slowly getting slower and shallower.  She was a tough little chica and held on to her life rather tenaciously. She didn't appear to be suffering, and she hung on in her mother's arms for just a touch over thirty minutes. She took her last breath quietly, we both gave her a hug and a kiss, and then we handed her body over to the surgical team that was standing by to allow her death to bring life to others that we did not know.

After that, there was not too much to do. We signed a few forms, took the information we needed to have to give to a funeral home we had not yet selected, packed up our things from the last several days, and collected the small parcel of our daughter's personal effects.

I had a few moments to speak with Kyle, and I thanked him for staying. He actually thanked us for allowing him to walk through our daughter's death with us. He said that the experience was a sacred moment. He'd put words to the experience that perfectly characterized both the deep sadness and loss coupled with the hope for others that she'd accomplished through her final act of living.

I don't really know what else there is to say about that day even with the passage of time. I left the hospital feeling empty and spent. I didn't feel like I was even in my own body as we walked out to our car. I don't remember driving home, and I don't remember how the rest of the day unfolded.

Looking back on it now, the process of organ donation gave a sense of meaning to the experience that even today I hold dearly as an anchor in an ocean of loss. When we walked out of the hospital, her flag was still flying, and that represented the hope going forward that I needed to have then and I'm grateful for now.

Our Daughter's Flag Among Others

Today was a good day. It was good because life is a gift, and it's a gift that carries no promise of another. Our daughter's last days began to lay the foundation on which I'd start to build a true appreciation for the gift of life. That's still a work in progress, but I learned a good many lessons from those tearful and joyful, empty and full days that we walked the final walk on this earth with our youngest. The chief among those lessons is to get out and live.