Deficits. I have been thinking a lot about this word since C Bear’s post op appointment last week.
One deficit we know for sure is Charlie Claire’s vision. In order to stop CC’s seizures the occipital lobe on the left side of her brain was removed meaning she lost the vision in the right side of each eye. We knew this going into surgery but we also knew the benefit of the surgery outweighed the risk of losing her right field of vision. We are hopeful though that with some vision “training” and time C will adjust to this deficit.
Jason and I are not ignorant to the fact that Charlie Claire is missing a good portion of left side of her brain and that the surgery comes with developmental risks. Again, the benefits of the surgery outweighed the risks and without the surgery, the seizures would have destroyed C developmentally. We knew in order for C to have a chance at a “normal” life she had to have the surgery.
I started this post yesterday but took a break from it and after a walk this afternoon with my precious babies I head a clearer head. This morning I read this….
"Feed your faith and your fears will starve to death. ~Author Unknown"
That quote came at the most perfect time...I thought about it all day and during our walk…while we know that CC is in an “at risk” category we can’t live in fear of that. Instead, we will enjoy each seizure free moment we have with Charlie Claire and relish in the things she is capable of doing now that she is seizure free. We will remain hopeful that her remaining healthy brain will compensate for what she is missing and should anything pop up we will do what we have done for the past 6 months…tackle every challenge presented to us and get C whatever she needs to overcome whatever may come her (our) way.
Before C’s surgery, my friend Julie and I were having a text message conversation (you get real good at those when you don’t actually have the energy to speak) about the risks of the surgery and she said (typed!) “We must have faith that the reward will be great.”
I remind myself of that conversation daily…
I tear up reading this. I feel for you and I'm scared at knowing what you're going through now is fast approaching us. I'm glad to know CC is seizure free. I know how important that is in our baby's dvelopement, but, whew...what a major move. But, you're right. Whatever comes our way, we'll get through it. Day by day and hour by hour. Praying for you! ~Kam
ReplyDeleteI love texting...and you just helped me figure out why I do...because I don't have the energy! I love what your friend said at the end of the post...I remind my self that same thing when I just want to freak out and go to bed...but I can't. I hope you guys are doing good :)
ReplyDeleteStrong is a funny word, it can be used to denote physical ability as well as a putrid smell. While I always thought my daughter was strong, this journey has shown me this word just doesn't begin to express the magnitude of her strength. She is a remarkable youg woman who was shaped by her mother and now she will help shape cc.....the world is a better place because of people like Kristin!! Love you, Dad
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