Monday, March 05, 2007
It has been six months since KayTar's first MRI, and about eight months since we started this crazy journey. Roughly nine months ago, I was standing in a new pediatrician's office with my insides twisted into knots. I has suspected something wasn't right, but to have those concerns validated by a doctor in such a serious manner and hearing mention of evaluations, MRI's, blood work....it was enough to make my heart drop right out of my body and onto the floor with a "Plop." In those days, I was a timid, frightened child. Yes, I was married and I had a four year old at home, but so much of me still had not matured. I was unsure of myself, I had no idea how to speak up for myself or fight for something I believed in. I didn't have a voice. I had never needed one before. I can picture myself standing in that office, clutching my list of concerns while talking to the pediatrician. It seems like it happened years ago. I feel like I have aged ten years since that day, and it has only been months.
Time aside, it was an important catalyst in my life. I had to find my voice, my strength, my ability to fight; and I had to find it fast. I think back to the early months and see myself floundering, panicking, trying to stay afloat. Every moment was overwhelming. I had been thrown into the pool and I didn't know how to swim. I thrashed, gasped, clawed my way up to the top and I would slip back underwater almost immediately...I thought I would never make it. Somehow, I found my way to the surface more often...I was able to catch my breath before slipping under. I slowly learned how to hover at the surface for long periods of time. Soon enough I was swimming! I have no idea how it happened. I spent so much of those early months in full blown panic mode. I cried often. Each episode made me fear for my baby's life...it made me wonder if she would slip away from me altogether. Each test was a threat of terrible news. I lived my life in fear. Recently I've been looking through my archives and I can feel the fear in my words. Some where along the way, I learned to cope, to manage that fear. Episodes are difficult (some more than others), but they are a part of life, like dirty diapers or stomach viruses. We handle them and life goes on. I am still frightened at times, but the fear does not threaten to swallow me whole as it once did. I look forward to the answers the test will provide, although I do not look forward to the tests themselves. I don't dread them any more than an average parent dreads immunizations. Necessary evils. There is still much uncertainty, but I no longer sense impending doom. As difficult as it has been, I've adjusted to this new life...we all have.
I still worry. I am insane about hand washing and sanitizing since realizing KayTar propensity for dehydration and hospitalization due to her particular set of sensory issues. I worry about when and where the next episode might happen. I worry about how intense it will be. I scrutinize her behavior on a daily basis in an attempt to predict an episode before it happens. I worry about those little lesions in her brain and what they are up to. I worry about her calories and whether she is thriving. I have moments, like after the awful episode two weeks ago, where the fear comes flooding in and before I have a chance to think, I'm under water again...but now I know that I can swim to the top. I think so much of this new found strength comes from KayTar and the fact that I watch her thriving day in and day out. She is making great strides, which soothes so many of those nagging worries. I have THIS outlet to help me process things. Before starting this blog, I didn't know how to be this person. I didn't know what to do with these thoughts or feelings. Everything inside of me was completely muddled. The act of putting it all into words and coherent thoughts has forced me to process them. It is how I understand myself...it is how I cope. You all have a part in that, and for that I am infinitely grateful. Life is still far from Zen...but it is infinitely closer than it was just months ago, and every day we get a little bit closer.