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Finding a Mom like me

Article posted on Wednesday, July, 7th, 2010 at 8:00 am

Telling Neely’s story and sharing our experiences with Greenville, SC  doctors has been the best thing (aside from her recovery, of course!) that has come from our year of ADEM recovery…Because it has opened the door for us to connect with other families like us.

If you only know me from reading this blog – then you might be surprised to learn that I am a very private person. We’re a private family. Sharing  our innermost thoughts and concerns is typically something that only happens in the security of our own home.  It was pretty difficult to hit the “publish” button the first time.

So imagine my excitement when after only 2 weeks of the site being live, I received and email from a mom just like me. Her name is Melanie, and the email started like this:

“Hi…. A friend of mine just sent me a link to your blog.  I read all of it… most of the time with tears pouring down my face.  We share a very similar experience… mine happened at the end of January 2010.”

I couldn’t read the email fast enough.  Just like me, Melanie had felt…. frustration from doctors that wouldn’t listen, helplessness from symptoms that couldn’t be explained, despair from literally feeling your child die right in front of you,  fear of next steps and the sweet sweet relief of improvement and progress.

We met for coffee and were instant friends. It was an odd feeling. We’d known each other for less than 2 weeks and yet I felt as though we were old friends.   That conversation was the validation I needed to continue sharing our story. Hitting the “publish” button just keeps getting easier.

There are lots of Moms (and Dads) like us.  And I am convinced that if we just keep talking we can make it a little easier for other parents who may be just starting the journey that we are already adjusted too.   It won’t be long before you start to see other parents stories posted here as well.  Stories like Melanie’s and many others.

Be your own best health care advocate.  Know and choose your doctor carefully.

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