Thursday, November 21, 2013

Found Some New Heroes

I wanted to share an amazing amount of care and research that has been spent on taking a closer look at the tunraround time of newborn screening test results. Noah died as a result of some bad policies that delayed us knowing about his illness in time to do anything to save his life, and so this is 100% something that I fight for in my advocacy work.

About five or six months ago, a story came to us via the Save Babies Through Screening Foundation, where I am a member of the board and a volunteer. A baby in Wisconsin had been born, and when he was a few days old, he and his parents lived the same nightmare of a night that we did with Noah. The baby went into crisis for some unknown reason, and had to be rushed to the hospital. Unlike our story, their child survived due to some incredibly radical procedures, and forward thinking doctors. Unfortunately, he is now permanently brain damaged. Soon after this experience, his newborn screening test came in, indicating that he had a rare genetic disorder could have been easily treated, if only the parents and doctors had known about it.

The local news media in Wisconsin became involved, and launched a detailed and thorough investigation of the issue at large. Because we have lived this nightmare, they wanted to hear all about our story as well. I am so eager to get the word out so that I have some traction when I go and lobby in Washington DC, so of course I was eager to share it.

It has been an amazing experience start-to-finish. These guys have dug up answers that I never thought I would have. It has been validating, humbling, heartbreaking, healing and so much more. I am so very pleased to share the results of their hard work, and can't thank the Milwaukee Journal Sentinel enough. Everything was very thoughtfully and carefully done, and I am so grateful.

There are a whole series of stories, maps, databases, etc: Deadly Delays: A Journal Sentinel Watchdog Report

Our story can be found here: Lack of weekend hours adds delay, putting babies at risk

Or you can get the shorter version through this very cool video they did of us:

Friday, November 15, 2013

Hard Story To Tell

Dilemma. Meeting new people is hard. It didn’t used to be that way. I have grown up having to be good at meshing with new groups of people. I can network my way around any group of strangers and find my niche of people who fit the best as good friends. It is a talent you have to learn fast when you grow up moving and moving and moving. You can either stand there looking scared in the high school cafeteria wondering what to do next as the new girl, or you can plunk your tray down at the most promising looking table and start talking and acting like you have always been there. The best survival tactic was always the latter. But add a new wrinkle to the new girl scenario. I have lived tragedy. It is a huge part of who I am. You have children and they change your lives forever. They are your heart and soul, and teach you more about love than you ever thought possible. Even if your child has died this is true. I believe deeply that I have two amazing sons. I refuse to deny Noah. He existed, mattered, and is one of the most prevalent thoughts and feelings I have, even though he isn’t physically here. I will say it again: I have two sons. To know me is to know them both. To only have half the story means you aren’t really a possible friend. I want the world to authentically know me. Some can handle that information and some can’t. So how do you judge that in a new group of people? Those that can handle it, and those that can’t? What do I say? Am I the “Debbie Downer” of the group because of this sad story? What a pickle. I debate every time. I hate that I am depressing. Why is this my life? That I own this? But he was and is one of the greatest loves of my life, and family comes first right? Sigh. I survived this round, and walked out having met some great people. I just wish I didn’t have the fear and internal debate. I wish I could just be free and clear. Just be the girl who plunks down her tray and talks like she has always been there. That was easier.