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.

The moments between alertness and sleep are tricky for me.  So many of my nights I have spent worried.  The last thing I have thought of before drifting off is the safety of my children, in the womb and out.  The other night I found myself re-feeling emotions from over a year ago.  (It was my nightgown's fault.  I bought the most beautiful flowing empire waist nightgown while pregnant with baby girl and because it was purchased while pregnant it tends to bring me back to that time.)  I don't know that I fully conveyed my subsequent subsequent pregnancy emotions.  By that I mean the things that my heart felt and that my brain felt after having carried two babies to term and then having them both pass away shortly after birth because of Potter's Syndrome.  The things that I felt after having carried three healthy girls in between and then being pregnant again shortly after our second Potter's loss.

Two ultrasounds showing a perfectly healthy little girl did nothing to put my mind and my heart completely at ease.  There was always a disconnect in that pregnancy.  A fear.  Fear of getting too attached and then having to say goodbye again.  Having my heart broken once was devastating but to have it unexpectedly broken twice for the same reason was shaming.  I can't quite put it into words but I felt some level of responsibility for what happened.  Those feelings definitely permeated my pregnancy with our littlest girl.

She is a wonderful addition to our family but she has turned our already upside down lives topsy turvy.  Her first year has been frought with tears, hers mostly but mine too.  She was not a very happy baby, absolutely attached to her mommy and pretty demanding.  Add to that exclusively nursed and would not take a bottle.  Let's put it this way.  Every single smile she gave me was a precious moment because there were not many.  Our first daughter was extremely fussy and demanding but this little one and her inability to be semi-pleasant really pushed our limits.  She has just reinforced the laws of nature which I have become quite familiar with.  That I can't control anything in nature but myself and my reactions to the world around me.  I couldn't stop Wyatt and Eli from dying and I can't shape the personalities of my living children.  But I can choose how to react to them.  Little baby has changed much over the last year.  She now smiles freely and even (gasp) giggles!  She loves to play games and be silly and she is such a sponge.  I can't help but feel my heart go all gooey when I hear the word "mama".  I chose not to give up on her, I chose to smile even after screaming into a pillow.  I sang, I read and I kept at it day after day even when that day passed without a smile, a laugh or even a glimmer of hope with her.

She's proof that I don't always get what I deserve.  I mean, after losing two children and just losing one of those children, I thought perhaps I might deserve a baby infused with joy, a baby that would have caught some of her brother's spirit as she breathed her first breath.  Maybe she did, but not in the way I imagined.  She's proof of the ferociousness of nature and the relentlessness of hope.  She is one more testament to my strength and determination and perhaps more importantly, proof of my healing broken heart.