There are a series of blog links at the side of Sam's blog, other CDH families whose stories I follow. I didn't read any blogs when I was pregnant with Sam or when he was in hospital. I probably missed out on some hope, information and support. But I also missed out on watching other babies die while I was in the midst of our own fear and anguish, and that was a really good choice for me at the time.
When Sam came home, I found myself really wanting to know about the journeys of other babies with Diaphragmatic Hernias. I have spent a lot of time - maybe too much time - reading about these babies, and then thinking, praying, cheering, hoping, and mourning. I have wondered about my urge to do this, to sit alongside the pain of these other families.
I think I get it. First, it gives me a chance to look into our own journey from the outside. I've needed to try to understand the happenings and the emotions that we went through; you can't process your experience when you are just trying to survive it. For many months after we came home from the hospital, I was wearing a deer in the headlights expression behind my "look at me holding it all together" smile. What the heck had just happened to my family?! As I let myself see our story through others' stories, I was able to make just a little more sense of things.
Second, following the stories of others let me feel connected and sometimes even just a little bit useful. In my real life, I have only two other families who know what a CDH journey looks like. The internet opened up a whole community of people who know. Those who went before us made me feel less alone. Those who came after us made me feel like I might have something to offer. What I had been through found a place in the words of care and hope that I could share.
One of the things that solidified for me in our journey with Samuel is this: if you are going to live with an open heart, you must also be willing to have an aching heart. I always want to live with an open heart. Today, my heart aches for the family of Esther, who fought CDH for 20 days and said goodbye yesterday. It aches for Abby and Leslie, awaiting their CDH babies and having just watched Esther, and Lucy before her, not make it. It aches for the families of Jude, Killian, and Clay, who seem to be riding on an extra long CDH rollercoaster. It aches for the mamas of Rowan and Maddie and Grace whose blogs I still follow because the CDH babies who don't live are just as loved as the ones who do. We are all part of the same family.
I don't know if others outside this CDH family can understand this connection, why I would cry for babies and families who I've never met. It is part of my knowing something different about the world because of our Sam. Life is brutal. And Life is beautiful. It is, as Glennon says, brutiful. I welcome the richness and gratitude that come of living deep in awareness of that brutifulness.
Mother's Day is coming, and I have been inspired by this blog to make a new tradition. I'm going to find me a mama who, for whatever reason, needs a little extra loving on. I have someone in mind, a mama who is still living in the ICU with her 6 month old baby and 4 other little kids at home. While I get to be home with my children this year, and celebrating my own awesome mom, loving on this ICU mama will be a way of honouring the big family of mamas who do hard and awesome and open-hearted things in this brutiful world.