there are some things i don’t understand. like why some kids have to die of starvation. or grow up in an orphanage. or have chronic health issues. or disabilities. or seizures. i don’t understand why some kids seem to get dumped with a whole lot of challenges while others seem to glide through life without many snags or snares. i don’t understand why all this happens.
in the same way, Mikisa doesn’t understand why we are here right now. she doesn’t get why she has to be attached to a monitor and tracked by a video camera. she doesn’t know why she has to take 5 medications daily. she doesn’t understand why she has to see so many doctors and specialists and therapists. and she’s taking it out on me. i guess i deserve it…i brought her here. yesterday, i got several good beatings. all under the ever-present eye of the camera. [i wonder what those techs think of my parenting skills now.] we truly had a hellish morning.
we are doing this to help her but she clearly does not understand that. which makes me think, when things are so hard in my life and i fight and scream and beg God to make them stop, does He look down on me like i now look at my daughter? with wisdom that He knows that this pain will bring some good…that the things we see as unbelievably challenging are actually just part of the way He draws us closer to Him? but He is there with us through the dark times in our lives, just as i sit here helplessly at my daughter’s bedside. knowing she does not understand. but knowing we are here to help her get better. it’s such a strange paradox.
we learned yesterday morning that her EEG is just as bad as ever, so now we’re staying until tomorrow morning in the hopes that our neurologist can figure out some more effective medications. last night we were in the ICU while they did a high-dose valium treatment. it was scary, but definitely helped her get some real sleep. she woke up much happier and more alert than normal! the hope is to do a month of more intensive treatment and then come in for another EEG to see if there have been any changes. we are thankful for an excellent neurologist who is thorough and caring and looking into all options.
the best part of yesterday was our visit from grandma! Mikisa was so delighted to have someone new to play with:) grandma brought toys and snacks and stayed with us for a long time. it was wonderful!!!