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

Tuesday, May 31, 2011

Somewhere to Vent

I posted a while back about feeling the weight of the world on my shoulders. It has been there for some time now that I honestly don't notice much anymore. I just want it gone. For a day, an hour, a minute. I just found out today that Eli's genetic, chromosome and autopsy information was not transmitted to the geneticist. It has been almost three months and they don't even have the *#%@ information! I had no idea. I made phone call after phone call after phone call before his birth making arrangements between the hospitals. I asked question upon question and did everything I was told. If I had a nickel for every time I've had to say the word autopsy in the last week I would take a vacation. Every time I have to say that word it reminds me of the second most awful decision I have had to make in my life, to hand my newborn son over for an autopsy. It hurts. The list of failures is so long I am beginning to wonder if it's a sign, a sign for me to stop and just let things be, to try to heal as we did after Wyatt's birth. It is literally as if the universe is speaking to me and it must wonder what a fool I am for not listening. I began preparations for Eli's funeral weeks before his birth, I met with the funeral director and gave them every piece of information necessary for our son's funeral and they let me down, I have yet to even receive the death certificate. I made arrangements with my doctor's office and the geneticist to try to get some answers and now they've let me down. We have contacted the headstone provider we used to buy our headstone and attempted to design one for Eli and so far they've let us down as well. I have and still am trying very hard to participate in a research study for potter's syndrome and they've let me down too. It is so bad that I have spent about a week trying to locate rock for the border to the boys' garden and have so far been unable to even secure something so simple. Three months and so little to show. No headstone, no death certificate, bad memories of a funeral, knowledge of an autopsy that at this point has proved to be fruitless and limitless frustration with the medical and scientific communities.


  1. I am so sorry to hear that you are facing so many disappointments. The people you are dealing with should be sensitized to the community they work in. Sucks that they have to be so "human" (read: falable) when it comes to you and Eli. Peace.

  2. Mandy, I am so sorry that you are having to deal with so much right now. Just wanted to let you know I am thinking and praying for you. I hope you get answers soon.



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