Thursday, May 3, 2012

Our CDH Family

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.


  1. I love, love this post! I am a CDH mama of a survivor too and it describes perfectly how I feel. My Dakota is almost 3 1/2 and I have been following blogs since she was diagnosed. Before she was born, I had a strict rule of only reading survivor blogs. I by accident read about a sweet angel and it haunted me through the rest of my pregnancy. The survivor blogs were what got me through our hospital stay. When Dakota went on ECMO, I could recall so many babies who had survived it and were perfectly healthy now. When Dakota had a bad blood gas, I remember actually scouring the blogs for an entry with a similar blood gas followed by a good one. Now I read about every baby I can find because I want to honor their lives and their family. They are all so special and different and you get to read about such all encompasing, no limits love and strength. I have many times sobbed and sobbed at the death of a baby I have never met. These little angels will always be in my heart. My husband asks me why I do it to myself, and I have always just responded that it was important to me to remember, to support, to give hope, to relive. I couldn't explain it as eloquently as you did. I am going to make him read this entry. Thanks to all your support to all CDH mamas and daddies! Many prayers for continued good health for your Samuel.
    Mom to Dakota 12-25-2008
    RCDH survivor

  2. Corinne,

    I want to say how lovely this post is. I too am a momma to a survivor of CDH, Lincoln, who is now 11 months old. I'm Not sure if you follow his blog, You have described exactly what I have gone through, as I suspect most ofus CDH moms have, feeling theneed to connect and watch others from the outside. It is such a life changing experience to have a child born with CDH.. I could not have said it more clear and it is nice to see the connection we all feel to eachother written down. I also love your idea for Mother's Day. What a wonderful way to celebrate.


    1. Hi Dorothy! I *do* follow Lincoln's blog but the editor for my layout page has not been working, so I always have to go to someone else's blog to get to yours. I just tried it again and... voila! it is working again and you are in my blog roll. So nice to have Lincoln and Samuel connected in this crazy CDH family kind of way. :)

      Thanks for your comments - means a whole lot to me, really. Really, really.

  3. I was devastated to hear Esther didn't make it but always so blown away by the faith and strength of these families. I sometimes try to NOT read too many stories because they can be so heart breaking, but I am always drawn back.

  4. Okay, so once again you have rocked my socks off with your blog post.:) I am not a CDH momma (duh) but can relate all too well with "the connection" you have with momma's in like situations. Also, I adore the blog have a link to and what they are doing for special mommas! Would you mind if I included them in a special momma blog I'm about to write soon?:)
    Have a great day, Corrine!

    With love from one special momma to another!


  5. I wish I could just hug you right now. I have also wanted to make a post to describe what we recently talked about, but I don't think I could say it any more eloquently than you. What a beautiful post and you hit the nail on the head. I love your Mother's Day idea!


  6. Brutiful indeed. Happy Mother's Day next week! love UJ & M