BY BLYTH LORD

I wrote a blog post on Christmas Eve. And here it is, Good Friday, and I’m writing another one. This is odd to me. Yes, I’m a Christian and I recognize that these are two of the most important days in the Christian calendar. But I’m not that devout. I happily stay home on Sunday when I don’t feel like going to church. Clearly, for some reason unknown to me, I am drawn to express myself on these two days with strong connection to the story of Jesus. Except for me, it’s really more about God. And tonight, the eve of Good Friday, it’s actually, and aptly, about Suffering.
I was asked earlier this week by a high school student I know, who is doing a religious studies project on suffering, to share my thoughts about this challenging notion that is so very personal. Here is what I wrote her:

Dear Isabelle,
I’ve thought a lot about just this question — not just because of my own experience but also now because of the work I am doing with the non-profit I founded a year ago: Courageous Parents Network. In this work, I have been interviewing dozens of families about their experience and feelings and insights as they have cared for their child who has a serious illness — what they’ve thought, felt, feared, and learned along the illness journey. There is beauty and truth that emerge from suffering, not that I would ever wish suffering or loss on anyone. But when it comes, as it does/must, there is growth and transformation and meaning-making that happen alongside the grief. I experienced this myself, I continue to experience it in my own life, and I see it every day in the other parents I meet.

When my daughter Cameron was diagnosed at age 6 months with the fatal illness Tay-Sachs, and I understood that she would die before age 3, I was devastated and deeply sad and very very scared. But never did I ask “Why me?” or “Why did God do this to me?” Why not me? I was just as ‘deserving’ of pain as joy, of bad as good. And I don’t personally believe that God works that way. God is not in what happens to us, but in how we respond to what happens to us.

I am quietly obsessed with the notion of God’s grace – I know it’s “the peace of God that passes all understanding” but I think it should be “the Grace of God that passes all understanding.” The most profound moments for me during Cameron’s life were when I felt God’s grace come upon me and my family. I experienced the grace as a feeling of peace and acceptance that literally enveloped me, unexpectedly, like a blanket. The opposite of resistance: acceptance and calm. I felt God’s presence in caring for my daughter and then in understanding that I was going to give her up to God when her time came. And that God would take care of her and me and the rest of my family. For me, the only suffering I had was Fear about what the end-of-life looked like for her, whether she would be in pain, and also fear that I wouldn’t survive her death, that I would literally implode or disintegrate during the last few days of her life. This all shifted when my husband Charlie attended his nephew’s Hayden’s death with his brother Tim and Tim’s wife Alison. (Hayden had the same disease as my daughter, his cousin, and died 5 months before Cameron.) Charlie was able to report back to me that the end of life was peaceful and that Tim and Alison were OK. His observation and reporting deactivated my fear instantly and I was able to breath and live into the last 5 months of my daughter Cameron’s life with very little fear. And that made all the difference.

I think that there is much suffering that comes from fear of the unknown. One of the goals of Courageous Parents Network is to shine a light on the dark scary places for parents, to try and alleviate some of that fear and dread and lesson the suffering … which aids in healing.

A month before Cameron died, we went to church on Good Friday. I was holding her in the back of the church and I felt suddenly that God and I had something in common: having a beloved one die. I was obviously not comparing Cameron to Jesus or me to God (!!) — Rather, I was feeling the abstract notion that love can mean letting people we love die, whether we want them to or not, and trusting that they and we are going to be OK.

In my own life and what I have seen of other families, transformation can come from suffering and grief. And there is so much beauty in that transformation. People find new meaning, in the little things such as time with loved ones, sunny days, and also in big things, like the type of work they decide to do to help others. I’m not sure you can get to that transformation without suffering of some sort. So while I wish it never happened, Oh how I wish that, I believe it can bear unexpected and powerful fruit.

I hope my husband Charlie answers this question too: in the day leading up to Cameron’s diagnosis, when he was anticipating bad news, he read the buddhist monk Thich Naht Hanh, who talks about the notion of sitting with suffering. I like this. Suffering is part of the human condition. There are some things that we simply must suffer – nothing can make them OK. Learning that your child has an untreatable, fatal illness is such a thing. We can only sit with the suffering. When we sit with it, hold it, it becomes less scary. And we can then see what we see — through it or on the other side of it.

This is a very long answer. I hope you find it helpful. What a brave and powerful topic you have chosen.
Warmly,
Blyth

P.S. Here are some of the voices of parents (and a grief counselor/psychologist) talking about how their child’s serious illness affected their faith and thinking.