Lost

One of the great horrors of this past year and trying to find any peace at all is the frequency with which we are retraumatized.  Sometimes these traumas are practically unrelated to the death of Max, like when I was called for jury duty.  Sometimes they are related to the selfishness of others.  Often they are related to new potential findings about Maxie and the handling of the last remaining parts of his physical body.


Well, it has happened again.  Just when I think we are almost done with this part of the nightmare.  Ted has been back and forth with the coroner's office and the Mayo Clinic all week trying to arrange the frozen shipment of the last samples of Maxie's blood and urine.  The very LAST samples.  A leading geneticist offered to organize some additional testing on Maxie's blood for anything else that could possibly be ruled out or found with relation to his passing.  This is important to us so that we are sure we are doing everything we can to ensure a healthy life for Baby M.  Every time we have to email back and forth with the coroners office about Maxie's body parts, I can feel the vomit rising in my throat and the knife stabbing deeper into my heart.  This is what is left of my child. The one I grew so happily inside of my own body.  The one I nursed and kissed and loved and sung to.  3 vials of blood and a urine sample (and a liver sitting on a shelf in a refrigerator in downtown Los Angeles). It is a complete horror.  Ted feels exactly the same. 


The package arrived at the Mayo Clinic yesterday morning and they wrote to us with cc's to the coroner and everyone else saying that they received the urine, but not the blood.  The coroners office replied that they had send it all in one package.  The person who packaged the samples explained how they were packed - Three vials of blood in a ziplock with ice, wrapped in butcher paper on top of a smaller box with the urine sample also in a ziplock bag with ice in a bigger box with dry ice.  The Mayo Clinic had maybe thrown it out by accident?  Ted responded in a panic saying "This is all we have left of my son.  Please tell me that you have found the blood".  Several hours later, another response from the Mayo Clinic saying that they had been through all of the trash cans and recycle bins and searched in every possible location and they could not find it anywhere.  


I wrote back begging everyone to check again: 
"Maxie is my baby. He is the most important person in my life. The last year without him has nearly killed me. As I am writing this, I can feel his little brother, who I am nine months pregnant with, hiccuping inside my gigantic belly. I know that whatever we find out about what took our beloved baby's life could help to ensure that this new baby will get to live his. I am not sure why this has happened with the lost blood but the trauma is being felt very deeply. If you can please check again both in LA and at the Mayo Clinic, it would mean so much to us. The blood is his last remaining blood. We feel so protective of his every part. Every lock of hair we saved, every item of clothing with his spit up and baby smell. Please check again."


The response I received from the Mayo Clinic: 
"Dear Ms. Leviss,

I don't know where else to look on our end after already having checked twice in even the most unlikely locations. The package came without any paperwork which is unusual and further suggests to me that we did not receive a complete shipment.

Either way, assuming that your son was born in California, leftover newborn screening dried blood spots should still be available at the newborn screening program in Richmond and could be retrieved if necessary. However, if the CA newborn screen was normal, a diagnosis of (this genetic) deficiency (which I believe was suspected) is unlikely."

So there it is.  No blood.  Nobody to blame (as usual - because we KNOW how everyone protects their own asses).  Nothing to be done.  An offer to delve deeper into the mystery of this nightmare gone in an instant.  Gone like my baby's life.  Again, everyone involved in this situation will move on with their day and Ted and I will drown deeper into this pain, knowing that Maxie's life has been reduced to just this - Lost.