Muddling Through Without You

When I think back on the last 13 months, I see that Chris and I got through 2018 by changing the way we operated. Before that time, we largely had a rich, private life populated by just two adults, Chris and me, and our children. We both thrived in our small world. We were partners in life and we didn't need much else. When Chris's brain cancer became more aggressive and progressed to glioblastoma, we knew we were in over our heads. As the inevitable end hurtled toward us, we reached out to others in a much more intentional way and our world opened up.

Going through an abandoned stack of papers and notes from 2018, I found a record of a monumental effort to obtain the best medical care and help for Chris that we could. We consulted health care providers of all sorts as Chris's challenges expanded and we saw that we needed to tap many resources to address his grim prognosis. Beyond the core team of neuro-oncology, radiation oncology, and chemo infusion nurses, we met with clinical trial nurses, a neuro-psychologist, speech and language experts, eye specialists, dermatologists, social workers, and child psychiatrists for parenting coaching. But even more important than the medical staff, we reached out to family and close, life friends to lay out the medical details without holding back. I can remember several terribly difficult phone calls made from the car after bad appointments... Then, we began focus on sharing Chris's story. We contacted Dr. Annie Brewster to record him talking about his experiences and thoughts on the kids. We also widened our support network by inviting a larger circle of friends, family, colleagues, and neighbors to read along on CaringBridge as we wrote about our journey. The value of sharing this most personal experience was instantly made clear through supportive comments and private messages of many readers, and also just through the process of writing our thoughts out. It was a gift to both Chris and me to share on the site.

Now that Chris has died, I find myself going back to the CaringBridge site routinely. I read his words and remember him. I remember the quiet urgency with which he composed his pieces and his painstaking process of dictating a post, having his phone read the words back, editing, and repeating again and again to be just how he wanted. It connects me to Chris to revisit his writings. It also makes our shared journey feel real and close again when I get bogged down in the terrible aloneness of my new state. Last week I allowed myself one post on how I am doing in this new "after" time. It was immensely therapeutic to write it and even more helpful to receive your support once I posted it. But, tempting as it is, I don't want to take over that space with my grieving. It was his place. Most of the reflective posts I wrote were vetted by Chris before posting and now he can't do that. I still want to write, though. I find it incredibly helpful for my grief process. I've decided to move here, to a place that will be mine only, as I muddle through without Chris. I won’t write in any detail about the kids to protect their privacy. If it's too much or too raw for anyone, I will understand, but if you'd like to join me here, I would be honored.