It’s a pretty face. I think it is the most gorgeous face in the world. I remember looking at this face and thinking how beautiful, simply beautiful my child was. What you do not see at first glance is this picture was taken at Children’s Hospital. This was Bridget’s third month of life and third hospital admission, after five ER visits.
I love being a member of the PACS1 family. Our small group has grown from 14 families to over 40. Our most recent adoptee asked a reasonable question: “all these young children…I am wondering why it took so long to diagnose X”. This mother has searched for over 13 years for an answer to what made her son unique.
I’m going to feel all lapsed-Catholic guilt for admitting this, but I sometimes despise this life. I hate that I don’t understand my own child. I despair that by my own actions I am the trigger to her crisis. I freaking loathe that this behavior doesn’t happen at school but only at home (see trigger comment). I despise that I cannot calm her, I cannot reason with her, I cannot even give in to her because if I do this will not be a daily occurrence but an hourly one.
I recently received an e-mail from a mom who is just beginning her special needs journey. She googled a few terms and this blog showed up in her search (wow!). As I read her e-mail I was suddenly taken back to that place. The place where I was completely overwhelmed and wanted Dr. Google to explain what was wrong with my child.
I remember looking into this face and feeling so overwhelmed and ill-prepared to deal with a child who had health issues. Not knowing in that moment that this would actually be the easy time. A time when we were cocooned with doctors and nurses just a call bell away. Continue reading →
About a week ago I changed the name of this blog (but not the URL) to Diagnosed and still okay. No one noticed. It could be like getting a haircut and dyed purple and your spouse saying, hey there is something different about you. Instead I chose to believe it doesn’t matter. Those who have been around here for a while come not because Bridget was undiagnosed but because they care about the journey. Continue reading →