Today, the first day it has felt like autumn to me, we took a Sunday stroll a mile or so across campus to downtown. Calvin walked much of it on his own as he did yesterday, which is a major feat for him. It seems the further we get away from a benzo decrease the better he does; it has been almost six weeks since the last one, having paused the wean briefly to introduce vitamin D and zinc supplements intended to help his withdrawal and possibly even his seizure control. I'll let you know how it goes.
As for Calvin's behavior during this short respite from the benzo wean, it's pretty damn good. He's sleeping like a champ and not staying up until midnight totally wired. He's walking well and is slightly less stubborn. He's waking a bit happier, playing with his toys longer and drooling and finger-snapping less. I just hope we can expect things to continue getting better after we get him off of the clobazam completely, which at this rate might take another year to eliminate the last six milligrams he takes every day. And when this feels like forever, which is often, I try to remind myself that we are going in the right direction and, with any luck, it will all be downhill from here, and perhaps we'll have a lot more successful Sunday strolls in our future.
As for Calvin's behavior during this short respite from the benzo wean, it's pretty damn good. He's sleeping like a champ and not staying up until midnight totally wired. He's walking well and is slightly less stubborn. He's waking a bit happier, playing with his toys longer and drooling and finger-snapping less. I just hope we can expect things to continue getting better after we get him off of the clobazam completely, which at this rate might take another year to eliminate the last six milligrams he takes every day. And when this feels like forever, which is often, I try to remind myself that we are going in the right direction and, with any luck, it will all be downhill from here, and perhaps we'll have a lot more successful Sunday strolls in our future.
glad to hear about this little sparkle of a nice day for all of you....
ReplyDeleteI have a question. This picture made me smile. He looks like a happy boy with an obviously loving dad. When I see differently abled kids and their parents out I frequently have the same reaction-a smile at the child and then the parents. But then I worry that this type of reaction comes off as condescending or patronizing. After all, did I smile at ALL the parents and children I just passed? I want to be respectful, but I also want to share my awe and appreciation for the hard job they've been given, and well, I like to smile at kids. I don't know. Do you have any thoughts? I hope this question itself isn't intrusive. -Abby
ReplyDeletedear abby, wow! i am so grateful for your thoughtful question, and i know just what you mean. i've had the same thoughts about smiling at other disabled people. my husband and i sop up smiles from others. never does a smile for calvin and for us go by unnoticed or unappreciated. we always say, "did you see that person smile at us?" it is a wonderful feeling. it is a feeling of validation, that we have a place in a world which often marginalizes and turns away. thank you. thank you. thank you.
Deletep.s. abby, i think we can distinguish genuine smiles from patronizing ones, anyway. xo
DeleteThanks so much for the answer; I've wondered this for a while! And thanks for continuously sharing your story (and Calvin's). I've read for years. I don't tend to comment on blogs.. ever really-this is the first in years. But I am rooting for Calvin and all three of you and read every update and will make my long neglected donation on his behalf. All the very best wishes-Abby
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