Monday, May 20, 2013

Rescued by someone like me

Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes.  They bled, and they bruised, and their superpowers were as simple as listening, or loving.  Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's.  And maybe that one act could lead someone to rescue you right back."  --Jodi Piccoult, Second Glance

On February 11th a private facebook message popped up.  It was from a mom in Virginia who is a friend of a friend.  I knew of her because my friend had asked prayer for her daughter before.  This dear girl has suffered over a decade from a mysterious illness that leaves her fainting repeatedly and unable to participate in much of life.  Her pain and suffering are like mine in many ways, especially my symptoms before my decompression and fusion.  Surrounding this message was a deep struggle in myself about continuing on social media, this blog, and responding to these emails and notes from people I know and don't know about my experience with Danica's and my own Chiari and Ehlers Danlos diagnoses.

There was a local little girl who was diagnosed with Chiari.  A friend of the family reached out wanting me to advise.  I became so emotional about reliving what we had been through.  If you know me you understand anything I share is with a huge disclaimer about how different every single case is.  I always remind how critical more than one set of eyes on the scans and symptoms are.  I always encourage the evaluation for connective tissue disorders by a specialist before letting someone cut.  These are things I can own because they would have saved much pain and grief in our life.  I often put these things gently in an email when asked and then step back and pray.  I believe more than anything everyone is on their own journey.  There was someone else who was also giving advice to this family.  Someone with a different personality.  Someone who had not walked the surgical road at all yet.  Someone who, with the best of intentions I'm sure, alienated this family from all the messages coming in.  It grieved me.  I did not sleep nights.  I really wanted to remove myself from all the online Chiari and EDS support groups for good and just move on with my life.  I was so not well personally, and I couldn't seem to handle the risk of continuing to share something so personal without knowing it would be received and make some kind of difference.

The message from the Virginia mom pushed me to respond.  I knew in my heart of hearts her daughter had cervical instability.  I knew my neurosurgeon could help her.  I knew what scans she needed.  I knew she could be helped.  How could I turn away from this?  How could I decide I was going to just step away from this community now?  I began passionately praying for this dear girl and her family.  I sent a package and card.  I talked to her on the phone a day she was in the hospital after fainting and falling.  I talked to the mom.  And last week they finally saw my dear Dr. H.  The pictures were clear.  Much like my own diagnoses, she is suffering from brain stem compression.  She will have other specialists confirm the accompanying disorders.  She will be offered hope through this network of amazing physicians.  What if I had deleted her message?  What if I had not pushed with Dr. H's information and my own story?  What if I had quit trying to untangle someone else's knot?

We've been rescued over and over again by you.  The faithful ones who have continued to read here long after the "exciting" hospital drama and fundraising and miracles to pray us through hard days of pain and doubt and debt.  You have been a community to me.  You've been heroes to Dan and my girls.  You've untied our impossible.  You've brought us meals.  You've sat with me so I wouldn't be lonely.  You've prayed with us and for us.

This week I am going to write everyday about the superheroes of our community and how they have changed our lives.  I hope you'll come back and read and even one story will encourage you to never be weary in doing good.  I was reminded last week of something I've always believed.  My story matters.  Your story matters.  Sharing the deepest parts of our experiences can SAVE A LIFE.  Listening to the Spirit when He tells me to act is critical.  We are the rescuers.  Take the risk today and BE COMMUNITY.

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