when brooke was around 5 i started noticing seizure activity when she woke up from naps/morning. soon after she was diagnosed with Rett's syndrome (autism) and started on some medication for the seizures. since then her seizures have been pretty stable and contained. a couple weeks ago, one of her staff noticed a pretty significant seizure after a nap. she was taken to the ER for blood test and further evaluation. we are now considering another type of medication to help her get them contained. the seizures, from our understanding, are not causing any damage to her neurologically; however, they do need to be treated.
on a lighter note....
there are moments in brooke's life that cannot be penned in, typed out, or even spoken...they are just felt or seen. i have had many of those moments and that are now hemmed in my mind. i consider each moment a moment of hope...and a blessing in the most broken places.
Saturday, August 06, 2011
i bet you are taking a double-take right now because it's really me. after-all it's been 3 months since i've posted anything on the blog. believe it or not i only have 2 really good explanations.
first, i do not own a computer. second, i'm a houseparent at a children's home and summer started (and ended).
let's see if i can update you in short form. :)
brooke moved into a new group home with The Learning Tree. She just moved a few miles down the road. She is making the transition ok, although at first, it was pretty intense. since January, brooke's behaviors have intensified and we are looking into seeing why. I am working with TLT to find out what happens before these behaviors actually start so we can work on getting her in a more stable setting. needless to say, we are still working on this. i'm confident we will come to a conclusion very soon.
during the summer, brooke has been coming to the children's home for visits once or twice a week while we are on duty. during her visits we eat all together, swing outside, laugh, sing, and laugh more. during her visits she does not typically exhibit any behaviors. the days that she does not come to the home, i usually run by the home to see her in the afternoon. as you know, we work twelve days and off four, and during our 4 days it is more like our family of 5. she spends the night, we take her to school and do what is more typical for any family. it has been nice to be so close to her when in years past she has been at least 2 hours away. the Lord has blessed us in that way. i am grateful!
just this past week i went to the school to visit with brooke and to talk with her staff. i peeped my head in trying not to bother her from her "work." i popped my head over a little wall and watched patiently how she was pointing at different parts of a book while watching a short film. every time she got it right, she was offered an edible of some sort as to encourage her to do it again. on that day, she was happy and responded well to demands placed. at one point she looked over towards me as if someone were staring at her. when she did she gave a double-take. you know, that slight look away and then a quick look back at me....and with the biggest smile she continued her work. i quickly left the room..hoping to give her the idea that i'm there...always watching, concerned, loving her, patiently waiting for a glance. i won't forget that moment. it was rare and it was good.
i wonder how many times our Savior patiently waits for us...watching, concerned, loving us, and yearning for a glance from us. i'm sure i'd say more than we think. He deserves more than our "double-take"....that's for sure.