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Thursday, June 4, 2009

Over Protection...

I’ve feverishly scoured the internet since Ethan’s passing. Factor VII Deficiency wasn’t new to me when Niki was diagnosed yet I was still poorly prepared when she was born. I knew all about the condition, but I didn’t know how to manage it when she was born. I simply didn't think it would happen again. Or rather...I was in denial I guess. Now, I have to learn how to RAISE a child with a chronic disorder. Parenting books about how to raise a child with hemophilia have become my new best friend. Reading the entries other “blogger moms” of children living with hemophilia have also been a staple for me. Even though Niki doesn't have Hemophilia A or B (deficiencies in factor 8 or 9) the struggles are the same. Bleeding still happens. Life just sucks sometimes.

But hey, knowledge is power, right?

This whole quest has been a catch 22. I want to be ready for the future. I seek information to better prepare myself for Niki’s sake, but the more I learn, the more I become afraid. I’m sure everything will be fine because I have trust in God, but I’ve read so many horror stories (and lived through my own) that it’s difficult to NOT be worried. I can’t help it! Ignorance truly is bliss sometimes.

I don’t want to treat her differently, but I find myself falling into that pattern. I’ve become a “helicopter parent” (a term coined by the hemophilia community) and I constantly hover over her. I just want to protect her, ya know? I'm constantly watching for bleeds. Oh, how I fear the inevitable! Her bleeding pattern will emerge soon and I am terrified. Her small GI bleed already freaked me out, what more for a joint bleed? Or worse, a head bleed? How can I possibly raise a strong, confident woman if I keep acting like Nemo’s dad? I watched the Pixar classic a few days ago and it really struck a cord. I really should stop treating Niki like she has a gimpy fin.

Mama's got a LOT more learning to do.

1 comment:

  1. oh're gonna be overprotective with all of your kids. you are a mom, that's what you do. just be concious of what you are doing and in what way you are. it's good to be careful, just remember to let her live and explore too.