Our Last Day. August 23, 2018

Two years ago today, it was our last day. Here are some memories:

·         We had arrived at Lucille Packard Children’s Hospital the day before to hopefully begin a clinical trial. We finally got into a room late in the evening.

·         No urine output after midnight meant Derek’s kidneys were shutting down.

·         I met with the medical team where they informed me that with kidneys shutting down, he
would not live long. They were very gentle and tactful, but also clear: Derek was dying. It was the first time someone had even hinted at that, and while the fear was constantly in the back of my mind, I never allowed myself to go there in reality. Now that fear was staring me in the face, suffocating me with its closeness, ripping my heart from my chest and shredding it to pieces. In that moment, I felt as though I separated into two individuals. My head took over the conversation with the team, and my heart could only listen in shocked silence.  One doctor said that kidney failure was a merciful way to go. “WHAT?!?” silently screamed my heart. “There is no merciful way to go! This is all horror!” But my head controlled my mouth and said calmly, “So what will happen? What can I expect?” The doctors gently told me what would likely happen. They had seen it so many times before. They knew, and now my head did, too. After everything was said, asked, and answered, they asked if I wanted to be alone. I did, for a few minutes. I desperately needed my mind and heart to reconnect and let the tears flow.  I also needed to be with Derek. Time was limited, and I didn’t know how much of it he had left.

·         There was always room for hope, but in those moments, my hope changed. I no longer hoped for a particular outcome. My hope became more solid than ever in a person - - in Jesus. He would be there through every horrible thing, and He would wait with me in the darkness and walk with me toward the light I couldn’t yet see. And He would bring Derek through the darkness, too. He would bring us all through this unspeakable devastation. Hope now had a face.

·         Derek was very sleepy, but mostly coherent in the morning and afternoon, but he had occasional moments of incoherence which were exactly what the doctors had predicted.

·         Derek wanted to eat the kimbop I had made and brought with us from home. It was his last meal.

·         Derek, known to the team for his jokes, continued his tradition when the team rounded in the early afternoon. He even came up with his own original play-on-words using the attending physician’s last name. Everyone erupted in laughter.

·         Vince and Kristen arrived in the afternoon. Kristen snuggled with Derek on the bed while Vince and I discussed things in the bathroom.

·         They moved us to a larger room so we could all stay together overnight. It was so merciful, because not one of us wanted to be absent from Derek’s last moments.

·         They brought in a large rolling cabinet with every imaginable thing to make us comfortable and give us meaningful time together. The child life specialist stayed late and brought in some art project materials and ideas to make lasting mementos. We made a fingerprint tree on canvas and intermingled Derek’s fingerprints with our own. It is a treasure that is first on the list to grab in case of emergency.

·         Through the evening, Derek became more incoherent but still had some lucid moments.

·         Derek’s last request we could understand was for water. He felt so thirsty. When he lost the ability to swallow in the early evening, we gave him tiny ice chips.

·         We had devotional time together as we did every evening. I lay next to Derek on one side and Kristen and Vince on the other. Vince read Revelation 21 and 22 and offered prayer. We sang the song together we have sung every night since Kristen and Derek were born. After the song, I kissed him and then gently pushed his nose, which we have called the “kiss button” for years. He pursed his lips as though kissing me. It was the last thing he did. Then he snuggled down peacefully next to me and went to sleep. He never roused. 

That was the last day.  

When there is a last day, it is impossible to know it until there isn’t another one, and then it is too late to do anything differently. Time is gone… forever. What is done is done. What is left undone is left undone.  Forever. No more new memories to make. Just memories of the last day.