A new day, a new fear arises.

“Courage is resistance to fear, master of fear, not absence of fear.” – Mark Twain

A new, and great, fear that just came across my inbox, is the potential changes that are being discussed for Medicaid.  Five years ago, I would have paid it no mind, but now I have no choice.

Though nothing is final (let alone 100% confirmed) there has been talk about changing Medicaid to a block grant system.  This would (potentially) reduce the funding that states receive, and heavily effect medical waivers. How can this be? After reading the article in Disability Scoop “With Talk Of Medicaid Changes, Waiver Services May Be At Risk” (Link HERE)  I find myself, yet again, typing in a flurry.

My daughter receives the amazing care that she does thanks to a medical waiver for her Craniosynostosis. There are countless ways (too long to discuss here) that her waiver has helped her, and our family.  It was also no easy task working through the waiver. Not because my daughter does not qualify, but because the system was a little broken when we first tried.

After many months, and moving out of a county which we will most likely never move back to (#grudgeholder), our fighting paid off and a waiver was granted. The sigh of relief has yet to cease from this moment. I broke down in tears over reading the letter letting us know Zoey was now covered. Not figurative tears, full on, fall to my knees, hold my baby, rocking back and fourth tears of joy.

So, what am I going to do about it?

First and foremost, I am going to pray.  My prayer is for clarity and discernment for those having these discussions. This includes myself.

Second is that I will continue to speak.  My journey has been to create a place of light, support, and strengthen.  I am unwavering in that.  I also realize my place as a voice for the voiceless.  Even though my daughter is making leaps and bounds in her ability to speak, my voice has yet to grow tired.

Finally, I will research and fight when needed. As I stated, this is not something that is confirmed will happen.  There is a good deal of, shall we call it, “early information” that seems to be making its way to news desks. More needs to be known.  If, as more is known, it becomes clear that this may happen, I need to make my voice louder.  Exactly how, that remains to be seen.

For nearly five years I have fought too long and very hard for my daughter to have a ‘normal’ life, to have a pen stroke take that away…. armor up, it is going to be a heck of a fight.

Live big, love bigger, and be kind, always.