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.