Had a very weird moment yesterday where I had been fine all day and then just lost it, sobbing in my office. I decided to call Mike and when he answered the phone he was crying too...I wonder what happened to us both at that same moment....strange. Some days I am fine and some I don't know if I can stand it...never seeing her again, our little beattle bug....
Kristin's brother Evan has gotten us some amazing contacts and has written a letter to the former director of the National Center for Birth Defects and Developmental Disabilities http://www.cdc.gov/ncbddd/ asking if he could provide any more information about asplenia for us.....he also gave us the numbers and names for some local experts. The director of the state program here in Colorado has called me, her husband died unexpectedly in an accident recently, I felt so heartbroken for her. When she gets back into the office whe is going to get some information for us.
It may seem obsessive to anyone who hasn't been through this, I really don't spend all my days and nights thinking about the ER situation and asplenia, but I also have questions that I need answered, questions that I am hoping can shed some light on this mystery, can help us help doctors help patients, can prevent even one family (preferably more) from having to have to endure this heartbreaking, wrenching pain....
I also joined an online support group for Asplenia/Herotaxy/Ivemark's Although so far it hasn't been too helpful. At this point it seems like a group of people who have become good friends and don't talk too much about the condition or associated loss, but rather about their friendship, and everyone has ignore my posts (poor me) but at least I have tried.
Enjoy the picture from last Halloween....she was the most adorable little bat, but of course hated the hat
1 comment:
I was just looking at a photo just like that yesterday. Thanks so much for sharing this with all of us. We love you.
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