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Wistfulness

Posted Aug 27 2009 11:38pm


I've been doing a lot of "blog hopping" lately and I've come across some wonderful blogs. I wish I had known about blogging, or even computers back when Taylor was born. I would have loved to have chronicled our journey from the very beginning.


Alas, I did not enter the computer age until relatively late in my life...2001 to be exact. I didn't learn about blogging until a couple of years ago. Now I know more about computers than I really want to know. *laughs*


Taylor has had so many surgeries and so many procedures and they are all in my head as well as the entire list of seizure medications we've been through. However, I don't have a recollection of my day to day emotions when Taylor spent most of 2003 in the hospital…first because of nonstop seizures, then the brain surgery, followed by the stroke, with inpatient rehab at Children's Healthcare of Atlanta.


I remember bits and pieces from that time. I remember all my belongings in storage because there wasn't enough money to keep an apartment and stay at the hospital. Let's face it…I lived at the hospital anyway, so why pay rent when you can sleep on one of those "oh so comfy" parent couch/beds?


I've also realized that as Taylor gets older, I've become less aggressive with trying to find cures and treatments. It's not that I don't want my child to be healthy. It's more because I know that my child is medically fragile. She's had 20 more years on earth than anyone said she would. I don't want whatever time she has left to be filled with needles, tests, surgeries, and drugs. It's bad enough taking her once a month for her port flush.


Sometimes I wonder if I'm being a bad mom. There is that selfish part of me that wants my child here with me forever. That conflicts with the part of my mom self that just wants my child's life to be happy. Taylor has very specific things that make her happy…her mp3 player, throwing toys over the shower curtain and into the tub, playing Sesame Street Toddler on her computer, being able to lay in her bed and flip channels on her TV with her remote, caffeine-free diet coke, and going to school.


That's Taylor's life and I don't want to inject doctors and hospitals in there unless I absolutely have to. The biggest thing I would love is to take Taylor's seizures away. That is what interferes with her abilities. Unfortunately, her brain keeps finding ways to seize no matter what we do.


I thank God every day that he gave Taylor to me. She is loving and happy and that's all we can really ask for our kids.

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