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Being a Survivor

Article posted on Wednesday, January, 26th, 2011 at 9:04 am

I’m learning through Neely that being a survivor can be tough.

She certainly isn’t old enough to tell her own story at this point.  I hope that one day she will – and that she will be a contributor to the thoughts and memories that are published here.  But until then, I want to do my best to tell that story for her.

Sometimes I catch myself just staring at Neely while she plays.  She completely amazes me.  I look at her eyes and I think about the brain that is thriving inside her little head. I remember those MRI images and Dr. Morales’s descriptions of what was happening as she healed – and I just stare in wonder and amazement.

And I see other people doing that too. We have been fortunate to have so many people following her story, praying for her health, and supporting our ability to cope ~ And now they stare in amazement too.  I wonder if Neely notices. If she does – she doesn’t say it.

People say things like, “Your prayers were answered. She is a miracle.”  And they are right. My prayers were answered and I do believe she is a miracle. But I can’t help but think of all the parents that still pray for the health of their children. Their prayers have not yet been answered, and no one can explain why. There is guilt that comes with surviving.

Neely’s story has given me the opportunity to connect and talk to parents all over the country. Some of those parents are still praying for answers and for their child’s health. I think Neely’s story gives them hope. And that inspires me to keep telling it.

Many times people have said, “God must have something very special in store for Neely,” or “I can’t wait to see what Neely becomes.” That is a heavy burden for a 4 year old to carry. Jamie and I have spent a lot of time talking about that and of course we wonder too, what she will become.  But not because of her recovery – Just because she is our little girl.  I heard Dr. Morales say once that Neely’s story has created so much awareness about ADEM (he was referring mainly to our area of SC) that she has already helped many other children that may develop it and the doctors that need to diagnose and treat them.

I like to think that by creating that awareness, Neely has already achieved “that something very special that God has in store for her.”  And maybe some of that burden will be lifted.  I want to carry that burden for her – Every parent would feel the same way about their child.  I do wonder how other parents manage those burdens and if the choices we are making to share her story, are the right ones.  We just try to stay focused on the opportunity that is in front of us. That is all that we can do.

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