#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.

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5 thoughts on “#PHightMode – On?

  1. My friend, unfortunately I don’t have any words of wisdom. Take the time you need and know that when needed, you will come out swinging….like you always do.

    Liked by 1 person

  2. I don’t have a daughter with PH and I can’t make it better for you or her or you family. I just try to live in the present and cherish the laughter and watching my kids grow into themselves as people. It’s fascinating and scary at the same time. One day at a time. I love reading your blogs, keep doing it!

    Liked by 1 person

  3. I have seen the beauty of your families strength from live feeds of sleep clinics to collages of disney and you have definitely come out of the gates phighting ph the best way you can. We all share a basic instinct of fight or flight and you are putting up a good phight. You’ve made us aware, shown strength and determination and opened our heart to support you in this phight. Maybe you have exhausted your phight mode but it will come back. You’re running a marathon here without knowing where the finish line is so I wish you all the strength of the world to get you on your feet running again. Do you need a tissue yet?? Cause I do.

    Liked by 1 person

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