Sunday, February 15, 2015

"We Can't Get Too Close"...

So...The most amazing thing happened on the way to the forum :)

NBC's "Grey's Anatomy" episode was centered around a couple who's unborn baby was suspected to have a diagnosis of OI Type II, one of the most fatal mutations that anyone can have. Statistically, most babies born with TII don't live more than a few hours after birth, sometimes a bit longer. This mutation consists of severely underdeveloped lungs, low birth weight, airway & respiratory problem almost no collagen & other health issues that can be irreparable. The couple decided it was in the best interest of the child to terminate the pregnancy. Many people of the OI Community weren't thrilled about the manor the news was delivered. Nor were they happy about the ending. For the past few episodes they ran this subject & I tweeted the show with Haley Jean's picture. I wanted to show that there is life beyond the diagnosis & in some cases OI isn't a death sentence....I got a RT from the show!! It was so exciting...I could barely contain myself. So many people RT, favorited & followed me back. I liked the idea of spreading awareness.



"We can't get too close" was a line from the show that will probably stick with me always. My parents faced this very potential option, told by medical officials to abstain from getting attached. Not much info was available in the 80's so it was a waiting game. This episode hit home for many people living with OI or somehow associated with it. That conversation, the tone, anxiety....The harsh truth of what is to come or what's to be is so heart-wrenching. Because I have Type III, the likelihood of the child having the same mutation was 50/50. While there were complications to be expected, none were like Type II. Many ask me how did I do it, how do I manage..My answer is always the same....I allowed Him to direct my footsteps, included Him in all of my decisions &  It was by God's grace that He carried us through the midst of the storm...

My goal is to tell others faced with this devastating decision that with God there IS life beyond the diagnosis...:)

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