Wednesday, July 21, 2010

I can lift the world

I know I can lift the world, I've done it. The weight has laid on my shoulders so many times I'm surprised it didn't leave permanent dents. No I'm not strong to have held this weight, nor brave. I am just a mother. I have felt the bitter tears of fear as I thought about Nellie's future. I've mourned many times for what she could have been, but then I think my God, she is already so wonderful. Last night while talking to a friend I said if they said tomorrow they had a cure right away I'd say great let's do this thing, but then I'd stop and say will this cure change her personality, who she is? If the answer would be yes I wouldn't be so quick to get in line.
I have a lot of fears for Nellie's future so bravery is not quite the word I would use for myself. I fear how the world is going to view her. I fear what will become of her when I am gone. I would never rest in peace until I knew she was safe and happy, just as I wouldn't unless I was sure of the same thing with my other children. No, I'm not brave. I'm still a scared little girl deep down who many times has ran into my grandma's arms for comfort when the doctors said something that really struck a cord with me. I'm the same little girl who wants to hide from it all every now and then, but I can't. I know I have to fight for her. If I don't she'd become lost in the system. I refuse to allow her to become anything less than what she can be.
Strength is another quality people have said I have. I wouldn't call it that. I just do what I have to, what any other parent would have. When the doctors told me answers may never come I wouldn't accept it. I dealt with family and friends saying I was looking for something wrong knowing that in fact wasn't the case. There had always been something wrong I simply wouldn't give up the hunt. Throughout history if people had given up the hunt there wouldn't be antibiotics, electricity, America. Just as these things that were hunted for are great so Nellie will be too.
I'm under no delusion that Nellie will be a rocket scientist, she won't be. In fact what her future holds is so uncertain sometimes I hate to think about it. I do know however she will become something great. She will be a great, loving person. She will bring great joy to those around her and to be honest that fills me with more pride than if she were to be elected President. Whatever Nellie becomes in life it won't be because of my strength or my bravery it will be because of my love and her strength and her bravery.
This child has been through so much. She's been poked and prodded for nearly four years now. She sees doctor after doctor and never cries. She sees children do things she can't, yet never complains. In my opinion she is stronger than any vice ever created and braver than an explorer that ever tackled the unknown. She's my Nell Bells and I will forever be in awe of her.

3 comments:

  1. Nellie brought me so much joy when I was with her. Nellie is already great, and so are you. That is why you are my best friend. You are a wonderful mother, and no you shouldn't give up the fight. That is not what mother's do. Steph it's not a matter of them being wrong, doctors are wrong. They can be wrong. It's a matter of what now. It's a matter of how do we get through this next hurdle. You want answers, as anyone would. I get that. I love you for it. Nellie will always remember that her family never gave up on her. Nellie has the best family in the world. And I pray you get your answers. Nellie is beautiful and wonderful. She is already great! I love her....she's my Nellie. And never forget that you have a best friend here to talk to. You have many friends to talk to. You have no need to bear the weight alone.

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  2. nellie is one of a kind always has been always will be. she does what she wants when she wants. there is no keeping her down, give her something really hard she will overcome it. nellie has the love of her family, friends and neighbors to help her but most of all she has baby emma! her very best friend....

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  3. She does love her some baby Emma

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