Mia's History by Mom
For as far back as I can recall, I have always aspired to be a Mother. Unfortunately, like so many other women around the world I spent years hiding internal turmoil after being advised by a Physician that I would likely never be able to bear children. One of the very first promises made to me by her Father Felix as our love blossomed was that he would be the one to give me the gift of becoming a Mother and in return I would not only give him the little girl he'd always wanted, but that she would be just as beautiful as her Mother. I was flattered by his words of course, though I just couldn't bring myself to anticipate or hope for the seemingly impossible. Sure enough, this man proceeded to love me so fiercely that indeed, the Universe made manifest the nature of procreation as it should be. A rare and special seed was planted, defying the "scientific medical finding" that had dictated my happiness for so long. If just that(becoming pregnant) had been our happily ever after, then I guess it wouldn't be reality. Life is full of metaphors, lessons, imperfections and anomalies.
Holoprosencephaly, is a rare brain condition in which the brain fails to properly split into two hemispheres during the fifth & sixth week of embryo development. This malformation often causes severe skull and facial defects, and in most cases, the malformations are so severe that the child dies before or shortly thereafter birth. In the less than 3% cases of survival, quality of life is greatly diminished by severe psychological, physical and developmental impairments. These miracle babies end up requiring life-long, around the clock care.
When Felix and I first learned that our baby girl had this condition, we instinctively chose to reject the notion that our purely innocent & undeserving "miracle baby" could possibly be victim to such tragic circumstances. No Doctor could definitively tell us WHY or HOW these complications had occurred yet they assured us that it wasn't anything that we could have consciously caused or even prevented. Despite learning that these things are often unexpected and unavoidable, we still grappled with immense feelings of guilt, shame, despair, confusion and hopelessness.. DAILY. As if things weren't already devastating enough, when Mia was just a week old and connected two huge breathing machines (basically life support), the Doctors approached us and were very direct in setting proper expectations. They stated that she was "the sickest baby in the hospital" and that she was "not likely to survive". The Neurologist felt confident that the severity of her brain malformations meant that she would "never walk, talk, or eat on her own", if by some stretch of the imagination she did survive. These were the words ringing in our ears and running through our minds day and night. I can't begin to tell you how we got through it all, how we arrived to the peaceful place we are today. I do know however, it requires large quantities of LOVE, FAITH, PATIENCE , STRENGTH and GOD. I now firmly believe that no matter the varying logistics, facts or circumstances, these are the elements that connect all living and suffering people as a human family. They define our experiences and allow us to relate to one another's pain AND glory. It required tremendous humility for Felix and I to do this campaign. We have accepted Mia's plight as our first and foremost responsibility as her parents and NEVER ask for help. Our lives have been shaken, stirred and turned inside out. It's all about Mia. And if crowd funding is what it's going to take to give Mia what she deserves; the very best chance at enhancing that "low quality" of life THEY said she'd always be victim to, then we are willing to lay down our pride and honor our Miracle Girl with the same chance at the seemingly impossible, that her birth gave us. xoxo