Name of Blog or Site
Address of Blog or Site
How Long It's Been Online
In its current form, since December 2011.
Why I Started
In August 2011, my son was born. I hate saying I had an uneventful pregnancy since we were so struck with miracle we created, but we had few complications. I had more prenatal testing done than most due to family history, and went in fully expecting to have a healthy baby. We only had Ronan with us a few hours before he was whisked away to the NICU. He was diagnosed with a critical congenital heart defect, and that was just the beginning. We were told that Ronan was likely deaf and blind, would need immediate heart surgery, and much more devastating news. But in true Ronan fashion, he has proven everyone wrong
How I Do It
I try to blog a couple times a week. First and foremost, it is to share how Ronan is doing, and how we are doing. Sometimes we are sad, other times angry. But we are mostly positive, celebrating even the seemingly tiniest milestone. We try to convey that despite Ronan's diagnosis of CHARGE Syndrome, we can be a happy family, full of joy. It can happen. Second, we share Ronan's journey to connect with other families. It has been our honor to have other CHARGE families or similarly affected families reach out to us via our blog. Most recently on a medical trip to Cincinnati Children's Hospital, we met with a family who found and contacted us through Ronan's blog. It was such an amazing experience to meet another family who has been impacted by CHARGE Syndrome, and to share how far Ronan has come since those early days.
Our blog is personal, but we do protect the identify of medical personnel and others in Ronan's life other than ourselves. We get into the nitty gritty of medical conditions. I think that is important in reaching others, and finding others who may identify with our journey. It also raises awareness for CHARGE Syndrome, and other special needs issues.
- Be honest
- Be as open as you want, but realize what you write is on the permanent record, so to speak
- Write about what you know. What you would have wanted to know.
- Labels are great ways for people to navigate your blog, learn to use them. I wish I would have earlier in the process!
- Link to other stories and blogs