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.
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This was such a great post. And we keep coming back because you have so much to teach us, too. You are amazing!
Well, you are the one doing the work, Kyla, we are just here, watchin gyou grow into a remarkable person.
Isn't it amazing the strength that comes from such a small source? You are doing a fantastic job on all fronts and I can tell just from reading this that you are strong. Excellent post (and now I definitely have to send you that chocolate ;)
That was beautiful, Kyla! Your strength, desire to learn as much as possible about Katie's illness, devotion and love are truly inspiring.
I don't know how I found your blog, but I am so glad I did. My kids each have their own issues, issues that have prompted me to grow and learn to be an advocate for them (though I am still learning). I see so much of myself in you, and I applaud your learning to swim. Jill
Actually, Kyla, I think you *are* Zen: you're insightful, you're resilient, you're compassionate, you're grateful...you're more Zen than many of the Buddhists I know!
It's an honor to watch and learn from you.
I'm so glad you're doing so much better and the blogging is helping. It's an amazing community, isn't it!
Hey, I just posted my response to your call for parenting chapters. now tell KayTar to give me a break, already! The Cuteness! It can't be denied.
I know exactly how you feel about this community. As sad as it sounds, these are my mommy friends; none of my "real life" friends have kids. But, no, it's not sad. It's great! I feel like I'm maturing for whatever reason, just because of you all and the advice, and commiseration, and wit, and laughs!
And I put a link on Ms. Newman's blog about your "Parenting book that SHOULD Be" - fabulous idea, I will try to come up with a chapter too.
You are awesome. I think you help other bloggers much more than we help you. You are so strong and you give others strength through sharing your thoughts and feelings. I pray for only good things for you and your beautiful family.
I thought that was great it has been three years and we are still waiting for a diagnosis with my son they are now looking a benign paroxysmal torticollis of infancy. Your writing has encouraged me.
This is a wonderful post. It's amazing how beneficial life-writing can be. I can't imagine having to live with the uncertainties that have been foisted upon you. I marvel at the maturity that such a (relatively) young woman brings to this situation.
Thank you for your comment on my Just Post--I thought I'd visit yours as well. So here I am. This is my first time visiting your site, and I have been very moved. Thank you for sharing your story, and that of your amazing daughter. (I read your medical overview post, too, which was very helpful.) It is wonderful to read that blogging has helped you find your voice, and given you a way to processs, as well as find support. I'm sure that your writing has been helping others, too. These are beautiful things.
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