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Now the real work begins

April 18, 2017

 

The reality of BPAN sets in – it is no longer a foreign term. My husband can barely get through a medical summary without tearing up, whereas I am already armed with an entire binder of medical information, which I carry with me, as if all the clinical, scientific data might shield me from the harsher truths of my daughter's condition. If knowledge is power, then my super power would be anti-denial through over-saturation of the facts.  

 

The truth is that I had understood with great clarity from the beginning, the great portent of this new reality. Nonetheless, recognizing how completely powerless I was, proved to be much more allusive. Other than a brief few days, when I questioned if I had misheard the actual letters of Eva’s genetic mutation (WDR45...could it have been another gene?), I never harbored any fantasy that there would be a magical fix, nor did I question, “why Eva”. I did however grapple, or more accurately wrestle (as in wrestle with a grizzly bear) with the unknown, the shock, the fear and most recently and most overwhelmingly, the grief. How could four simple letters B - P - A – N, which in and of themselves sound so innocuous, have the potential to rob my daughter of her future? How would I as her mother be able to serve her needs; how would we as a family be able come through this intact? Would we? Could we? I was just another mother, cycling through the shock and grief, asking the questions I am sure any parent would ask when receiving a similar diagnosis.  
 
Amidst the questions, shock and grief, my husband and I began the process of informing our closest friends and family members about Eva's diagnosis. At some point perhaps a week into the process my husband made an incredibly useful suggestion. He suggested that we print out a summary of the diagnosis, which we provided to our friends and family. Prior to entering into a full conversation regarding Eva’s condition, we asked them to read the summary. This has been so helpful. I never realized how exhausting the act of sharing with others could be. In fact, I had to pace myself to talking to 1-2 people a-day. We both have large families and a large group of friends, which meant that we had multiple conversations over a span of weeks. We continue to have conversations. We are actually still in the process of letting people know when the opportunities arise and when we are emotionally fit. The printed summaries include additional websites where friends and family members can go if they want more information.  

 

In part, being able to quickly and easily disseminate information and provide updates is one of the reasons that I began to play around with the idea of developing a website, blog and Facebook page. I knew as time went on, it would not be physically and more importantly emotionally possible to keep all the people that we wanted apprised of Eva’s progress and yet I knew that it was so very important to keep connected to our loved ones. With the website, blog and Facebook page, I felt that I could reach a large number of people efficiently and allow people who may be afraid to ask questions or wanted more information to have a means to access information. 

 

Thank goodness for great friends who jumped in to set up the website and blog and gave me direction regarding the Facebook page. It is because of people, such as Erika DeBlasi of Advisor Expressions, who care and are willing to invest the time that hopefully, we can connect with the people who mean the most in our lives. Thank you, Erika for your beautiful work on the website and blog. I cannot tell you how much I appreciate the thought and artistry you put into each and every page. I know that as an exceptionally busy mother and business owner, you must have made some sacrifices to make this possible. I also want to thank your kids and husband, because I am all too aware that time spent on this project, is directly or indirectly time that they have “donated” to Eva’s story. And finally, thank you Georgina (Erika’s mom).  Thank you for your research and website content. I know that Erika appreciates all that you do for her; I too am so touched that you gave of your time and your talent. 

 

Now the real work begins. 

 

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