Sunday, October 9, 2011


James lived eight months and seventeen days. That's 257 days. Today marks the one hundred eighth day since we were first admitted to children's. It is seventy seven days since he died. Life in the hospital was very brief relative to either of those periods, James spent just about twenty nights in the hospital between the time he first became ill and when he died, tucked into different floors and different rooms. A dizzying array of B6, C9, C11, PICU, C9, C10, PICU again. Tense days full of hurry up and wait, ventured opinions and slowly forming conclusions.

Sometimes, I still dream about it. I wonder if you would call them nightmares. It is the morning and I can't get James to wake up. I am begging for him to wake up, shaking him, calling his name, calling for help. No one comes. I go into the hall and make laps around the circuit. The nurse stations are empty, the on-call boards blank, without any of the cheerful flowers the nurses would draw. A mural welcomes you to the floor on each lap, splashes of color to break up the hospital's familiar pattern. Each floor has its own mural- the layout remains the same. No one is there, and a panic rises in me. I wake up, and still there is no one to help James.

The days pass with a different cadence now. When I make an appointment, I can be confident it will happen about when expected. There is a certainty that was never present in the hospital. The days are more regular and less varied. There is more predictability, but the surprises gone are about half and half. Bad surprises,like your son has cancer and needs an MRI today, are largely gone. The worst has already happen, there are no more horrible futures to contemplate. With them go good surprises too. Which of his teeth will come in next, what will his first word be? When will he walk? The watch for milestones ceases. There is simply much less to look forward to.

The days now have a regular, predictable quality. There is much less to update, and still less that is actually interesting. As much time as we spent terrified in the hospital, I still sometimes miss it. We still had hope. We still had things to look forward to with him. By its nature, the hospital is a place that suggests you still have options, treatments, hope. There is the opportunity for life however tenuous one diagnosis or another might make it. Away from there, here, is in many respects an admission that there is simply nothing left to be done. James is gone, and there's no hope of return in this life. I never thought much of heaven before. It seemed abstract to me, a reward without context. I still don't know much about it, but I know what I want out of it- James. I want to see my son again, and watch him grow into the man I'd hoped he would become. I now have context. There is hope in that, but an abstract sort, the kind that pales in comparison to the reality of you dead son's grave, or the crib sheets you wonder if you should bother changing, because of the dust that's gathering.

Today looked a lot like yesterday. Work, sleep, leisure crammed in the margins where possible. Tomorrow will look much the same. The days are more numerous but less important. I think of all the things I wrote in those daily updates, everything that happened. Some days I would write an entire update only to forget a full chunk of the day, hours and events that were sometimes the most important thing that happened. That time is compressed in my mind, a month that felt like a year. There is a huge divide in my life between before and after, and I cannot believe it. A few days after James died I remember I received a calendar reminder for some discovery deadlines for discovery I served a few days before James got sick. I remember looking at the note on my phone and just being shocked that 30 days ago my life was normal like that, and that 30 days later I was finished burying my son. It felt like much longer.

Some days are better than others. Some days I see the positives. The time we were blessed to spend with James, how honored we were to be his parents. He was our perfect blessing and we were lucky to have even eight months with him. Some days I am angry. Other days, I'm just trying to get through the day. Today was a good day. I found a set of James' newborn pictures in my desk. These discoveries are always a bit sad, but I like to look at his pictures and see him smile. He was such a happy boy. I couldn't have asked for anything more.

Thank all of you for your thoughts and prayers.


  1. My heart is heavy for you. I so wish I had something amazing to say to help you get through these tough times. James was an amazing little guy! So handsome and happy! Thoughts and prayers coming your way. Hugs.

  2. It's impossible to believe. I find myself in denial about my husband, and, unlike your Jamesie, he has lived his life. We sat in the doctor's office last week, and I realized I was somehow completely out of the loop when the doctor said he had to know if at the end my husband preferred a ventilator or to just be made comfortable. Then he mentioned hospice. I thought, "Wait, when did this happen?" He was just diagnosed. The counselor I see said I was in shock and grieving. Yes, I thought, I am. I wonder how long he has left to live. He said he might ask. I said, "Don't. The doctors don't really know. Let's just live each day the best we can."

    Thinking of you, praying for you.

  3. All I can possibly have to say is that I am praying for you.

  4. James was such a handsome boy! You and your family continue to be in my prayers.

  5. Thinking of you, Kara and James. You are all in my daily prayers. I love seeing pictures of James, he's just too cute!