Blah

I've had a week of truly seeing, processing and emotionally dealing with the reality of Gesina's recovery. At Gesina's new daycare, I get to really see what babies her age and younger are capable of. The emotional expression of these babies is so rich and detailed while Gesina's is... not. The abilities these babies have to play, grab objects, and generally interact with the world around them is literally shocking to this first time mom.

Today Gesina saw a teacher for the visually impaired for the first time and she does have essentially no response to visual stimuli at this time. A few weeks ago I had requested Gesina's medical records and have been pouring over them and googling medical terms ever since. It seems some of the damage in her brain due to the stroke is in her "occipital horns" which effects her vision. Also, her eye doctor, who seemed relatively useless at the time when he exclaimed her "visual structures are normal but we don't know what she sees", actually did catch a few things according to his medical report on her. Gesina has "cortical visual impairment" which is a fancy medical term for brain damage that effects her vision. The outcome of this is unknown as kids in this catch all category can gain some vision with therapy (and luck?) but will never have "normal" vision. It's all a matter of teaching the brain to "see" a few items at a time to start to rebuild visual pathways. Gesina may see some things but her brain doesn't pull it all together to make sense of what she is seeing... for the psychology folks out there, she doesn't have any "Gestalt" in her perception. Moving forward, helping her develop this ability to put pieces of information together to see a whole is a slow moving process and requires a lot of work... similar to her sensory disorganization, her stiff muscle tone, her ability to eat from a bottle, etc.

So this is a blog post where I rant and rave about the situation I can't change. Please indulge me and I promise to find the silver lining soon but just not today. I was a very lucky kid. Things always seem to come rather naturally for me. I got good grades, was in the 50th percentile for everything (even time to run a mile in elementary school) and my parents didn't even need to bother with parent-teacher conferences because I was so "vanilla". College was a fun experience for me and graduate school was an appropriate challenge. Don't get me wrong, I did work very hard for my education and in high school, for my singing awards, but I was pushing envelopes that not all kids had the opportunity to push. In all, I worked hard at some things and learned the value of hard work, but I didn't work hard at ALL things. Lots of things came naturally to me.

Fast forward to Gesina, and like all parents you just assume your child's experiences will be similar to yours and hopefully, even better! After Gesina was born I realized rather quickly that wasn't going to be the case. I live by the philosophy of "expect the worst and hope for the best" and generally, I agree with my Neurologist when he said there were times in the beginning that he and I didn't know if we would be HERE with Gesina alive and fighting so enjoy the moment as we weren't promised to get where we are today. BUT, as a mother, I die a little inside every time I see/realize/acknowledge that Gesina doesn't just get to fight to get a singing award or to get a PhD. My little Gesina the warrior princess has to fight to eat, fight to move her arms, fight to maintain a state of calm when she can't see the world around her, in other words, just getting through a day is a constant battle for my baby. While other babies at the daycare easily drink from a bottle at 6 weeks, grasp toys at 4 months, interact with the caregivers with glee, my baby is fighting HARD to just live with the constant pain of acid reflux and keeping food down. It is just not supposed to be this way.

Rationally, I know it could be worse and while Gesina fights hard today, at some point these activities will come easily to her. I also wonder what amazing lessons Gesina will learn about hard work as she is learning these lessons now, at nearly 6 months when I had to wait until high school to start dedicating myself! But emotionally I can't help but worry about how this will all work out. Why does my little girl have to suffer while others get to breeze through, including me? I'll be better tomorrow but I just need to day to process. I also realize that no matter what, I'm the luckiest woman in the world to have Gesina in my life. She is beautiful, sweet, strong, and I already know, she loves her momma.