May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Friday, June 21, 2013

Was Going to Update...But

I routinely do a Google and a Google Scholar search for Potter's Syndrome, bilateral renal agenesis and Potter's sequence to see if there is anything remotely close to a reason as to why my sons died.  In a passing moment I thought it might be nice to update my webpage to make it more of a medical resource gateway for other families facing the Potter's Syndrome diagnosis.  To help them find the same medical information that I sought during each of my pregnancies.

So I hit the internet again yesterday and the internet hit me back - hard.  The links that I have at the bottom of my blog are (so far as I can tell) still some of the best resources available.  Because there are no answers, there is no treatment.  There is only a diagnosis, a second opinion, a decision as to how to proceed with the pregnancy and then there is time which is followed by precious moments which is then followed by a lifetime of clinging to those moments.

I would love to provide that medical information and I promise that when I do someday find something new, I will share it.  I will shout it from the rooftops.  I will never stop searching.  Until then, I realized that the best thing I can do is to talk.  To tell my story just as many others have told theirs.  When I was pregnant with Wyatt over ten years ago stories of Potter's babies on the internet were few and far between.  I felt so alone.   Things couldn't have been much more different when I was pregnant with Eli.  I found many blogs written by people who have been touched by Potter's Syndrome.  I found online support and chat groups that were only about Potter's Syndrome.  After having Wyatt I was lucky enough to have found an online support group which was really comprehensive in the people affected by infant loss that it served.  It was my lifeline for a long time after Wyatt's birth.  It was a safe place full of other people who had experienced so many different kinds of losses and were able to share those experiences and appreciate their differences and similarities.  But I missed having that intimate knowledge that comes with carrying a Potter's baby to term and then saying goodbye.  It was harder to find that connection in a sea of grief.

So here is my story.  It is as much for me as it is for you.  It is a story of hope, love, loss, grief and living.  It is not an answer or a guide, it is really just my way of making sense of the senseless.

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