Another Kick in the Face

I spent a good two hours on Wednesday going back and forth with the coroners office and UCLA over email and by phone.  It started with an email on Monday with me to the UCLA geneticist asking if they had received Maxie's blood yet and whether they had determined that it was a good enough sample to run the exome sequencing test.  She had not received the sample yet.  She must have then wrote to the coroner.  By the time I got her thread of emails Wednesday, I could see that the coroner had written back and cc'd a colleague named Dan and said "I passed this onto Dan", who then wrote back to he thread with a cc to another coroner colleague named Joe saying, "I passed this onto Joe".  The geneticist wrote then to Joe and cc'd Ted and I saying that the sample needs to be sent immediately as it is time sensitive.  Dan wrote back and said, "I think that the parents need to sign a consent form."  I forwarded the email to my parents.  This is when my dad called to tell me he was calling down to the coroners office.  My dad spoke with "Dan" and told him if we needed to sign a form then he should SEND THE FORM!  The form was sent, I signed it and emailed it back (I cc'd all of his colleagues and the folks at UCLA as well) in 5 minutes.  Then Dan emails me directly to say, "How will the blood get to UCLA?".  WHY IS HE EMAILING ONLY ME?  It makes no sense.  Apparently, I am now the project manager on this case.  I write back to EVERYONE and say, "This needs to be figured out between UCLA and you all.", figuring that there has to be some sort of protocol for how they move blood around in this town.  But, no, UCLA calls me to say that they have no courier service, so the next thing I know, I am making plans to drive myself to the coroner's office (where my beloved baby's body was autopsied) pick up a vial of his blood (one of the last remainders of his earthly body), and drive it to UCLA myself.  But, first I called UCLA and gave them a piece of my mind!  We are paying $6500 to have this test done!  They can't get a courier service to pick up the blood?  I will PAY them for the courier service.  Two minutes later, she calls me back to say she will arrange it.  One minute later, I get an email from Dan telling me to call his cell.  I should know better ,but I call his cell anyway and I have the same discussion.  I tell him that this is incredibly time sensitive and he tells me that it doesn't need to be, the blood has preservatives and the sample will be fine.  So, after an hour and a half of this, I have left it in their hands.  They tell me that they are arranging it.  This morning I wake up to see that the original coroner who actually autopsied Maxie (and then passed the buck) has finally responded to the chain of emails from Wednesday.  He says, "Do bear in mind that this specimen contains no preservatives.  It has to be kept refrigerated during transport and handling."  I think I am going to lose my mind.  Is grieving the death of my son NOT ENOUGH??????  Do I really need these effing mini-dramas every single day to keep me on my toes?  I am sickened by his response.  Especially because, yet again, the email is only to me!  Have the people at the coroner's office not learned to use the "reply all" button?  Good thing I know how to use it!  I go back, get everyone's emails again and write this: 


Dr. Coroner,


This information comes TOO LATE! The specimen was sent yesterday.  The tests we are doing are TIME SENSITIVE.  I recognize that this is just another case to everyone else.  This is OUR SON!  This last remaining vial of blood was to be tested so that we could try and determine if there was something genetically wrong with him so that we could try and save HIS BROTHER, with whom I am five months pregnant.  This whole case has been handled with little to no sensitivity and with little to no regard to our needs.  I am PRAYING that the blood went packed in cold, but I have no way of knowing this.  I am unclear why everyone in your office emails me directly rather than communicating amongst yourself.  I AM THE MOTHER.  I was not at the coroners office yesterday packing up my child's blood to be sent to UCLA.  Why would you write me to tell me (a day too late) that the blood needed to be specially packed?  Also, I fear it wasn't packed in cold, as Dan Anderson, in my conversation with him on Wednesday, led me to believe that the blood did contain preservatives.  Geneticist N, when UCLA receives the sample, can you please let us know if it was packed and transported appropriately?  I am incredibly upset."


Again, words fail me.  I do everything in my power all day long to try to get back to a life worth living and I get kicked in the face every time I turn around.  


I wanted to mention how nice it was that everyone reminded me that they are listening yesterday.  I guess there are so many people telling me all of the time how "Baby M will heal" us!  Baby M has to live in order to heal us.  I think that is the part that people aren't hearing.  Then when I actually spell it out, they act like I am being dramatic or focusing too hard on the worst case scenario.  My son died with no warning.  HE DIED.  I am not being dramatic.  I am not "afraid to be happy".  I have a lot on my plate including intense grief and the BS never ends.  Thank you so much for listening.  I know it isn't easy to hear any of this.  I keep thinking that I am ready to stand up and I keep getting knocked down and I am not laying down and taking it either.  I am fighting every step of the way and I am SO SO tired.  So tired of this life I've been handed.  So ready for something new.