Once upon a time
There I was. A tiny bundle of energy, they say. Always wanting to check out each and everyone and everything that entered the room where I was, laying down in an incubator, with a headband and probably a pink pair of handmade booties knitted by my grandma.
It was all due to my rush of being born, it seems. Mom says she had made chocolate mousse that night, for dinner, when suddenly her waters broke. I wonder if it could have been my sweet tooth already manifesting. Either that or my anxiety was born with me.
The story goes like this: mom was 38 years old, already a risk pregnancy back in 1995, it was then or never. They definately didn't think I would be ready for peek-a-boo yet. Mom rushed to the hospital. Dad was teaching a good amount of miles away from home. Mom says she destroyed a pillow in pain, grinding it between her teeth. Next thing she knows is my head was already visible. On the 26th week of pregnancy. Our skin was so frail, you could see through the tips of our fingers, they say. My brother on the other hand, not being anxious at all (some things never change) had to be pulled out in what I can imagine must have looked and felt like a scene from The Shinning.
There are not that many details from back then. I guess the tendecy and the advice must have been to expect the worse. Heart and lungs were not fully formed. All you could see were basically tubes and monitors beeping. And four tiny hands, two pairs of shiny curious eyes determined to discover the world around them.
There are no pictures from our first week. And to be quite honest with you. even for me, the first ones that were took are too shocking even for me to publish. Mom could only hold us for the first time on the second day. Dad says he was afraid of breaking us in half for far too long. There were no diapers for our ridiculously tiny size. Not even the ones made for premature babies. Mom says they would just get a cotton ball on our bottoms and it would last. An also interesting detail: our bath tub was one of those school cafeteria inox bowls, everything else was too big (perhaps we could have been a good inspiration for a Tim Burton movie). There started even being jokes that we would fit in a match box. From what I know, we gave nightmares to many people, and I am sure many sleepless nights to our parents.
We spent a month in the hospital, with regular cardio-respiratory arrests. One of those caused cerebral palsy to me. It was far from being diagnosed yet though. The following years, I may add, were also in an out of many many hospitals, having an immune system made of paper. I became familar with oxygen masks before I could even say my first word (which was pretty damn early - by 9 months - and it was probably "no", which ironically I find hard to say now most of the times).
As soon as we were home from another stay at the hospital, we would get sick again, and if one of us were cured, it would spread to the other before we could breathe in relief.
Mom is a kindergaten educator. Back then she had worked at a physical rehab center for quite a while. Long enough to be able to tell when something of that matter was wrong. And the truth is I never seemed to be able to start crawling, or even holding my head up easily, also my limbs would not move well.
Doctors always said it was just slow development due to being premature, and that I eventually would grow out of it and develop fine. Considering I had almost no reflexes, though, sooner or later, they stopped telling my mother she was being paranoic about it, and gave me spastic diplegia, cerebral palsy, as a diagnose. Our world had crumbled. That tiny peanut who wasn't even supposed to make it, had recieved a letter of war, to fight for each literal step in her life for the rest of her days.
From what I can remember, though, I accepted it with no fuss, since I didn't even know what it was like to live without it anyways (from there to actually coming to terms with it goes a whole lot of difference, but true acceptation of a chronic "disability" is another big chapter, pretty much still unclosed, that I will write about soon).
Next thing I know is I already did physiotherapy. At about 6 months old. And I didn't stop for ages, though I must add I was lucky enough for it to affect only motor skills. But even though it is still hard to believe for many people who know me, I certainly was, for the first years of my existace, one of the kids you see drooling and not being able to control fine motor skills to even hold a pencil right (I will soon write about my most dangerous experience ever that completely changed my life in that sense, for the curious ones, it is called selective dorsal rhyzotomy, I did at the age of 6).
I don't remember much from that early start, obviously. But one thing I am sure: once upon a time that tiny bundle was born already stubborn enough to defy imposed limits. And here she remains.