Blog · February 7, 2012

Ways to go…

I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hitting reality, love without measure and life with EB. I wonder how thick this book going to get as I keep remembering things and add life stories beyond 2002.

My first glance at Nicky, he was perfect!

I love to write, it’s almost  part of me to be able to express myself this way, I truly enjoy it, however at times trying to describe some events and the knee jerking reality smacking you in the face is not exactly a cake walk. Emotionally, it takes its toll, I can only write so much some days without starting to shake at the gut wrenching memory I am reliving.

In the end I want to be able to clearly describe what a sweet child Nicky is without getting too sappy, I want to be able to make the reader feel things they never experienced, I want to be able to help people understand what EB is and how having a rare disorder complicates things. Having a common disorder or condition is bad enough, but when the condition you’re dealing with comes with no treatment and you struggle to get the supplies you need to achieve optimal health, it makes things 100 times worse than they should be.

I’ve been busy reading many different books in an effort to get not only ideas for mine, but also to realize what I ‘can’ talk about and what I ‘should’ talk about. The book is going to be filled with feel-good stories and hard moments that this amazing child lived through, and, clearly, there are many personal things I will never even closely mention. Sometimes, however, I feel as if some things are a bit taboo, such as talking about the Health Care System of the US and what is covered and not covered under the almighty for-profit insurance companies and the differences on how EB patients are taken care of depending on what country they are born into. I’ve talked on the phone with at least a couple of moms of EB children who were quite distraught about the unending co-pays and insurances denying things over and over again, but you would never know because they never mentioned any of their financial struggles keeping up with EB on their Blogs. I often wondered why.  Then again, I kept my personal bankruptcy, which resulted from our insurance company refusing to pay for supplies and other things a secret because I was so incredibly embarrassed and mortified about it. But the secret is out. I am no longer embarrassed nor mortified, I am mad as hell. As Taylor Armstrong says ‘I finally found my voice and I am not afraid to use it’. The truth needs to come out, my story needs to be told. If nothing else, to help change some things or/and to make others feel less alone. I am hoping to get the book finished for Nicky’s 18th Birthday, in late 2014.

Here’s some books I recommend which I found incredibly helpful:

If you’ve lost a child:

For Inspiration:

For EB Parents:

Tough cookie by Lillian Sparks * Parents Cry Too! by Lillian Sparks

My Other Books: