Saturday, September 6, 2014

a fb post i did late last night

I'm reading a little bit tonight and read where several of my ph friends might have cancer, or already were diagnosed with it. and then I say a tiny baby boy lost his battle with PH, and all I want to do is cry now!!! it's nearly 2 a.m. and all these thoughts are going on in my head. thinking of our precious Joy. i loved her so much!! still in do in fact. and these babies suffering with this blasted disease SUFFERING! and their mommies and daddies suffering with them because they don't know what to do to help them. and then they are ripped away from them when they succumb to Pulmonary Hypertension. WE NEED A CURE!!! DAMN IT! We NEED A CURE!!! i don't know what i would do if I was the momma to one of these babies... i would go out of my mind. I think of Lillyana and her momma Kori. Lilly has had PH since she was one, she was dx at a year. she's thriving at 8, or is it 9? but how must Kori have felt? when she is first told, you may not see your daughter grow. I can't begin to imagine the pain these families are experiencing. Yes, I have lost loved ones to disease, my dear sweet beautiful sister, and that was one of the worst pains i have ever felt, and still feel. but the pain of losing a CHILD? I can't bare to even think of it. I think of my kids and how healthy they are, thanks be to GOD almighty! and my gorgeous Ellie, always smiling, laughing... I can't even bare to think of it. God please bring an end to ALL Suffering! To ALL Diseases!!! and famine, and war .. please don't let these momma's and daddys have to suffer and bury their children. I HATE THIS SO MUCH!
I haven't cried like this in so very very long. and I hate it.

this is getting way tooooooo "real" again. you know? I KNOW what PH is. I KNOW is it incurable. I KNOW it is progressive. i KNOW all these things, and yet, I push it all to the back of my mind and i play with my Ellie and I help my kids as much as I can, and I work so hard to raise awareness but all these things that i KNOW, are pushed way way way back there. this kind of happens to me now and then. it all gets too REAL again, and I back wayyyyyy wayyyy up... I don't want to do that but I think for my own mental health and well being, I will need to... just hope that by November, I will be back kicking and screaming as always.    I may not have met the majority of the people here on fb, i may never, but you guys are in my heart forever


  1. You are never alone, Flippymom! I have "those days"... When it all just hits too hard! Too real...and then we push it back back back...I'm here for you chica, and so are soooo many of your FB phriends! You are not alone! <3

  2. Thank you Jenny!! You know I love you and cherish our friendship right? We don't just share a chronic, incurable and progressive disease, but we are like soul sisters or something. I love you!