Carman Joann Lay was born July 11th 2000 In Baltimore, Maryland. She was a big girl from day one, born at 10 lbs. 3 oz. We immediately decided we’d call her CJ. We’ve finally gotten around to putting her story to paper, and I guess it’s about time, as she is now two and a half years old. Carman is a cute, playful little girl who loves to laugh and smile and who is very affectionate. She loves to bang on her keyboard, and loves toys that have sliding beads. Her favorite toy is a little ferris wheel with rattles and mirrors. She enjoys riding in a backpack on her dad’s back for dog walks or for hikes in the woods. She loves to ride a swing and likes a ride in the car, and doesn’t mind coming along for mom and dad’s frequent road trips. She loves to go out to eat or to the grocery store-anywhere there’s a lot of people around. She seems to thrive on the energy of the voices and commotion all around her, and these little sojourns get her really wound up. She can feed herself with her hands and can use a bottle and sippy cup on her own. She sits up well on her own and loves to use her stander (a rack that holds her up vertically to exercise her leg muscles) while she watches videos of either the Veggie Tales or Baby Einstein. She has very limited vision, but enjoys what vision she has to the fullest. She looks around for us with great determination, and when she spots one of us close by, she usually smiles, a testament to her normally sunny disposition. She can stand on her own while holding onto objects. She doesn’t have many seizures any more, though they cycle through every now and then when she gets ill. She has been on Topomax for a long time, and it seems to work for her.
Carman seems to have been sent here to give us lessons in life that we’re still learning every day. She carries a disposition that most people, with all of their faculties, the ability to walk, and just enough intelligence to become cynical about life, lose; and that disposition is one of absolute bliss. She’s happy to get up every day. She doesn’t know she has limitations, so they really don’t matter to her. But mommy makes great blueberry pancakes and they’re only minutes away when she awakens, and mommy’s lovely voice and hugs will be there as well. And that’s what she focuses on. A simple lesson on how to live one’s life but a profound one. She, like so many other handicapped children, pays more attention to the simple things she can count on to bring her joy, because these are the only things she knows. We intelligent adults can learn from this, because we actually have the choice to see these things, rather than the myriad others that we allow to get us down. The first thing Tricia and I like to focus on, most days, is just how pretty our little girl is. We don’t even necessarily verbalize it, but we both are thinking it. Everybody thinks their kid is the cutest there is, it’s only human. There are plenty of negative aspects of Aicardi Syndrome I could point out to you, things that we wish CJ could, or someday will, be able to do that any normal 2 year old could do without a thought. We’ll never stop working towards those goals. But in the meantime we like to pay more attention to the good things we have in our lives because of CJ. Like really pretty little smiles and beautiful curly hair we’ll probably never cut and a laugh that could make you run from one end of the house to the other just to get there in time to hear it before she is all laughed out. And the daily reminder that you can focus on a few really simple things and enjoy your life no matter what. In our own little ways we thank CJ every day for the unconditional love she offers us and the joy she has brought into our lives, and we feel truly blessed.
10-01-2008
