Monthly Archives: March 2017

#PHightMode – On?

When Mia was diagnosed with PH this summer, we came out of the gate PHighting – making sure everyone in our world knew what Pulmonary Hypertension was and taking every opportunity to raise both awareness & funds…

Then Reality Struck. Aaaaand I pretty much stopped communicating with just about EVERYone (so no, it’s not just you 😉) I’m in hibernation mode. Yup. Seems I’m in a funk that I just can’t seem to shake.

I know I need to get back into #PHightMode – & I need to do it sooner rather than later… It’s been a looooong cold winter & although Mia’s condition IS stable, more often than not she feels pretty good & some really positive things have been happening lately – so what’s my problem… I should be happy, right?  Yes, of course I celebrate every victory along the way, but the problem is: Stable is not good enough for me; Stable isn’t the end goal… The Cure Is!

Let me share with you a few pages from my journal… this is me trying to build myself up for the PHight…

Mia was our 5th pregnancy & our 1st child.

I’ve been wanting to post a blog like this for a few weeks now, but I reeeally wanted to wait until I felt like I was actually IN #PHightMode, perhaps even with some sort of ability to motivate people into joining the PHight – But I’m still not & I don’t know how.
I am trying, I just don’t actually know what to do. I don’t seem to have the energy or the drive; that is VERY unusual for me & I can’t figure out why. But I can tell you this: It’s Frustrating as Hell. The only way I can seem to brighten up is if I put myself in denial of my reality & pretend that Mia doesn’t have a progressively fatal condition that doesn’t have a Cure. And yes of course I fully understand that I don’t know what the future holds & there could be many medical advances in her life time… but if anyone can offer any ideas on how NOT to think about my baby having that kind of diagnosis.. please, help a Sista out.