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Wednesday, January 2, 2013

What did I do before Facebook?

“Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one.”
C.S. Lewis

As I struggled to understand what the doctors were telling me, looking up every unfamiliar word, phrase, and condition, I was also furiously searching the Internet for other families with Oli’s condition. 
There had to be more of us out there! Where were they? This was pre-facebook when it was not as easy to find people or support.

Finally I stumbled across a Yahoo online support group for families of anophthalmic/microphthalmic children.  I submitted a request to join the group explaining that I had a one month old daughter with the condition. 

I was silently begging this woman on the other side of the country….

Please, please accept me.  Please tell me that you can help and that you understand.  

I received an email the next day telling me to follow the link to the online forum.   I waited until everyone in the house was sleeping before I went back online. 
With the darkness of the house surrounding me I was looking into a new light, a new hope via my small computer screen. 

I clicked on the link and walked into a whole new world.  A world in which my child was no longer a small minority with a strange condition.   A place where I was no longer just one mom alone on this foreign voyage.  I had found the hope and the sense of community that I had been looking for.

I read through numerous conversation links and looked at handfuls of photographs of children who looked like my Oli.  Beautiful children with positive and inspirational parents who told me not to be discouraged.  They told me that they too lived my story.  My life, her life, her future was not to be without hope.  I could be myself with them. I could be angry, express my grief, my sense of loss.  I could tell them about the strange looks that people gave my daughter.  I could tell them how annoyed I was when people thought Oli was sleeping because she couldn’t really open her eyes.  They understood because they too had the same experiences. 

They knew me and they knew my struggles.  I never had to pretend with these women.  In the months to come I clung to my computer screen in the darkness and welcomed that light.  I asked many questions and always received honest and compassionate answers.  I found friendship in a most unlikely place.  With women I would never meet.  Most of them have never heard the sound of my voice, invited me over for coffee or out to lunch. Most of them were just names on the computer screen.  But, those women knew me in those early days.  They knew me better than some of my closest friends because I told them how I really felt. 

I never told them that I was fine. 

I still talk to many of these women via the MAPS facebook page. Microphthalmia and Anophthalmia Parent Support.  https://www.facebook.com/groups/123750425284/?fref=ts

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